TY - JOUR AU - Allemang, Brooke AU - Miatello, Ashleigh AU - Browne, Mira AU - Barwick, Melanie AU - Maini, Pranshu AU - Eszczuk, Joshua AU - Pandit, Chetan AU - Sadhra, Tandeep AU - Forhan, Laura AU - Bollegala, Natasha AU - Fu, Nancy AU - Lee, Kate AU - Dekker, Emily AU - Nistor, Irina AU - Ahola Kohut, Sara AU - Keefer, Laurie AU - Griffiths, Marie Anne AU - Walters, D. Thomas AU - Micsinszki, Samantha AU - Mack, R. David AU - Lawrence, Sally AU - Kroeker, I. Karen AU - de Guzman, Jacqueline AU - Tausif, Aalia AU - Tersigni, Claudia AU - Anthony, J. Samantha AU - Benchimol, I. Eric PY - 2025/4/2 TI - Perspectives of Adolescents and Young Adults With Inflammatory Bowel Disease on a Biopsychosocial Transition Intervention: Qualitative Interview Study JO - JMIR Pediatr Parent SP - e64618 VL - 8 KW - gastroenterology KW - inflammatory bowel disease KW - biopsychosocial KW - patient-oriented research KW - transition to adult care KW - qualitative methods KW - young adults KW - qualitative KW - adolescents KW - patient perspectives KW - Crohn's disease N2 - Background: The transition from pediatric to adult health care marks a complex and pivotal process for adolescents and young adults with inflammatory bowel disease (IBD). This group requires support regarding disease self-management, skill development, and system navigation in preparation for transition. Evidence-based interventions are needed to promote optimal health and psychosocial outcomes for adolescents and young adults with IBD during this period. Objective: A qualitative study embedded within a randomized controlled trial was conducted to evaluate the perceived impact of a biopsychosocial transition intervention on the transition experiences of adolescents and young adults, their views on the intervention, and recommendations for future care. Methods: This patient-oriented research study used a qualitative descriptive design. Virtual semistructured interviews were held with 21 adolescents and young adults with IBD (16?18 y) enrolled in the randomized controlled trial (intervention arm n=11 and control arm n=10). Interviews were audio-recorded, transcribed, and analyzed using an inductive approach to reflexive thematic analysis. Five members of a Youth Advisory Panel with lived experience of IBD collaborated throughout data analysis, interpretation, and the presentation of findings. Results: We constructed three themes through our analysis: (1) making meaning of transitions in care; (2) perceptions and impact of the biopsychosocial transition intervention; and (3) considerations for future transition care, including the importance of individualized support. Conclusions: Our findings illustrate the importance of relationships and the impact of a biopsychosocial intervention on adolescents? and young adults? confidence, knowledge, and self-management skills during transition. The results, which indicate the criticality of tailoring transition supports according to adolescents? and young adults? preferences and characteristics, will be used to refine the biopsychosocial intervention before it can be scaled and spread. UR - https://pediatrics.jmir.org/2025/1/e64618 UR - http://dx.doi.org/10.2196/64618 ID - info:doi/10.2196/64618 ER - TY - JOUR AU - Ginsberg, Harrison Kristin AU - Alsweiler, Jane AU - Rogers, Jenny AU - Ross, Phoebe AU - Serlachius, Anna PY - 2025/4/2 TI - Exploring Stress and Stress-Reduction With Caregivers and Clinicians in the Neonatal Intensive Care Unit to Inform Intervention Development: Qualitative Interview Study JO - JMIR Pediatr Parent SP - e66401 VL - 8 KW - neonatal intensive care unit KW - NICU KW - parents KW - preterm infants KW - stress KW - stress reduction KW - intervention development KW - digital KW - neonatology KW - pediatric KW - infants KW - babies KW - neonatal KW - toddler KW - children KW - caregiver KW - telemedicine KW - telehealth KW - virtual care KW - virtual health KW - virtual medicine KW - remote consultation KW - qualitative study N2 - Background: Parents and caregivers with preterm babies in the neonatal intensive care unit (NICU) experience high levels of distress and are at an increased risk of anxiety, depression, and acute stress disorders. Effective interventions to reduce this distress are well described in the literature, but this research has been conducted primarily in Europe and North America. To our knowledge, few interventions of this sort have been developed in Australasia, and none have been developed or tested in Aotearoa New Zealand. Objective: The primary aims of this study were to explore sources of stress with caregivers and clinicians in a NICU in Aotearoa New Zealand and gather participant ideas on ways to reduce caregiver stress to inform intervention development. Methods: This qualitative design used an essentialist and realist methodology to generate findings aimed at future intervention development. Overall, 10 NICU clinicians (neonatologists, nurses, and mental health clinicians) and 13 caregivers (mothers, fathers, and extended family members) of preterm babies, either currently admitted or discharged from the NICU within the last 12 months, were recruited to participate in interviews exploring stress and stress-reduction in the NICU. Results: The 23 participants included 10 clinicians (all female, with an average of 15 years of experience in the NICU) and 13 parents and caregivers (majority of them were female; 10/13, 77%) of preterm babies. We identified 6 themes relevant to intervention development. Three themes focused on caregiver stress: the emotional ?rollercoaster? of NICU; lack of support, both culturally and emotionally; and caregivers feeling ?left out? and confused. Three themes focused on participant-proposed solutions to reduce stress: caregiver empowerment, improving emotional support, and communication on ?my? terms (ie, digitally). Conclusions: Participants reported high levels of caregiver stress in the NICU, and they proposed a range of stress-reducing solutions, including increasing caregiver empowerment and improving emotional and cultural support. Clinicians and caregivers also strongly agreed on providing more information for caregivers in digital, mobile-friendly formats. UR - https://pediatrics.jmir.org/2025/1/e66401 UR - http://dx.doi.org/10.2196/66401 ID - info:doi/10.2196/66401 ER - TY - JOUR AU - Fedele, A. David AU - Ray, M. Jessica AU - Mallela, L. Jaya AU - Bian, Jiang AU - Chen, Aokun AU - Qin, Xiao AU - Salloum, G. Ramzi AU - Kelly, Maria AU - Gurka, J. Matthew AU - Hollenbach, Jessica PY - 2025/3/18 TI - Development of a Clinical Decision Support Tool to Implement Asthma Management Guidelines in Pediatric Primary Care: Qualitative Study JO - JMIR Form Res SP - e65794 VL - 9 KW - clinical decision support KW - asthma KW - primary care KW - guidelines KW - pediatric KW - asthma care KW - morbidity KW - health information technology KW - electronic health record KW - EHR KW - user-centered design KW - inductive approach KW - digital health KW - health technology N2 - Background: There is a longstanding gap between national asthma guidelines and their implementation in primary care. Primary care providers (PCPs) endorse numerous provider and practice or clinic-related barriers to providing guidelines-based asthma care. To reduce asthma morbidity in primary care, PCPs need access to tools that facilitate adherence to national guidelines, which can be delivered at the point of care, are minimally burdensome, and fit within the clinic workflow. Clinical decision support (CDS) tools are health IT systems that can be housed in the electronic health record (EHR) system. Objective: This study aimed to follow user-centered design principles and describe the formative qualitative work with target stakeholders (ie, PCPs and IT professionals) to inform our design of an EHR-embedded CDS tool that adheres to recent, significant changes in asthma management guidelines. Methods: Purposive sampling was used to recruit three separate subgroups of professionals (n=15) between (1) PCPs with previous experience using a paper-based CDS tool for asthma management, (2) PCPs without previous experience using CDS tools for asthma management, and (3) health care IT professionals. The PCP interview guide focused on their practice, familiarity with national asthma guidelines, and how a CDS tool embedded in the EHR might help them provide guideline-based care. The health care IT professional guide included questions on the design and implementation processes of CDS tools into the EHR. Qualitative data were audio-recorded, transcribed, and then analyzed using an inductive approach to develop themes. Results: Themes were organized into 2 domains, current practice and CDS tool development. The themes that emerged from PCPs included descriptions of assessments conducted to make an asthma diagnosis, previous attempts or opportunities to implement updated national asthma guidelines, and how a CDS tool could be implemented using the EHR and fit into the current asthma management workflow. The themes that emerged from health care IT professionals included processes used to design CDS tools and strategies to collect evidence that indicated a tool?s value to a practice and the broader health system. Conclusions: In this study, user-centered design principles were used to guide a qualitative study on perceived barriers and facilitators to a primary care?based, EHR-integrated asthma CDS tool. PCPs expressed their interest in adopting an asthma CDS tool that was low burden and efficient but could help them adhere to national asthma guidelines and improve clinic workflow. Similarly, health care IT professionals perceived an asthma CDS tool to be useful, if it adhered to EHR design standards. Implementation of a CDS tool to improve adherence of PCPs to recently updated national asthma guidelines could be beneficial in reducing pediatric asthma morbidity. UR - https://formative.jmir.org/2025/1/e65794 UR - http://dx.doi.org/10.2196/65794 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65794 ER - TY - JOUR AU - Moody, Louise AU - Clarke, Samantha AU - Compton, Matt AU - Hughson-Gill, Rachael AU - Boardman, Felicity AU - Clark, Corinna AU - Holder, Pru AU - Bonham, R. James AU - Chudleigh, Jane PY - 2025/3/6 TI - Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study JO - J Particip Med SP - e59686 VL - 17 KW - extended genetic testing KW - next-generation sequencing KW - cystic fibrosis KW - decision-making KW - engagement N2 - Background: Newborn screening aims to identify babies affected by rare but serious genetic conditions. As technology advances, there is the potential to expand the newborn screening program following evaluation of the likely benefits and drawbacks. To inform these decisions, it is important to consider the family experience of screening and the views of the public. Engaging in public dialogue can be difficult. The conditions, screening processes, and associated moral and ethical considerations are complex. Objective: This study aims to develop a stand-alone online resource to enable a range of stakeholders to understand whether and how next-generation sequencing should be incorporated into the CF screening algorithm. Methods: Around 4 development workshops with policymakers, parents, and other stakeholders informed the design of an interactive activity, including the structure, content, and questions posed. Stakeholders were recruited to take part in the development workshops via purposeful and snowball sampling methods to achieve a diversity of views across roles and organizations, with email invitations sent to representative individuals with lived, clinical, and academic experience related to CF and screening. Ten stakeholders informed the development process including those with lived experience of CF (2/10, 20%), clinicians (2/10, 20%), and representatives from relevant government, charity, and research organizations (6/10, 60%). Vignettes constructed using interview data and translated into scripts were recorded to provide short films to represent and provoke consideration of families? experiences. Participants were recruited (n=6, adults older than 18 years) to test the resulting resource. Study advertisements were circulated via physical posters and digital newsletters to recruit participants who self-identified as having a reading difficulty or having English as a second language. Results: An open access online resource, ?Cystic Fibrosis Newborn Screening: You Decide,? was developed and usability and acceptability tested to provide the ?user? (eg, a parent, the general public, or a health care professional) with an interactive scenario-based presentation of the potential outcomes of extended genetic testing, allowing them to visualize the impact on families. This included a learning workbook that explains key concepts and processes. The resulting tool facilitates public engagement with and understanding of complex genetic and screening concepts. Conclusions: Online resources such as the one developed during this work have the potential to help people form considered views and facilitate access to the perspectives of parents and the wider public on genetic testing. These may be otherwise difficult to obtain but are of importance to health care professionals and policymakers. Trial Registration: ClinicalTrials.gov NCT06299566; https://clinicaltrials.gov/study/NCT06299566 UR - https://jopm.jmir.org/2025/1/e59686 UR - http://dx.doi.org/10.2196/59686 UR - http://www.ncbi.nlm.nih.gov/pubmed/40053726 ID - info:doi/10.2196/59686 ER - TY - JOUR AU - Elkourdi, Farah AU - Asan, Onur PY - 2025/2/10 TI - Community Caregivers? Perspectives on Health IT Use for Children With Medical Complexity: Qualitative Interview Study JO - JMIR Pediatr Parent SP - e67289 VL - 8 KW - pediatric care KW - children with medical complexity KW - family-centered care KW - health information technology KW - health care software solutions KW - mobile phone KW - artificial intelligence N2 - Background: Children with medical complexity represent a unique pediatric population requiring extensive health care needs and care coordination. Children with medical complexities have multiple significant chronic health problems that affect multiple organ systems and result in functional limitations and high health care needs or use. Often, there is a need for medical technology and total care for activities of daily living, much of which is provided at home by family and caregivers. Health IT (HIT) is a broad term that includes various technologies, such as patient portals, telemedicine, and mobile health apps. These tools can improve the care of children with medical complexity by enhancing communication, information exchange, medical safety, care coordination, and shared decision-making. In this study, we identified children with medical complexity as children aged <21 years who have >3 chronic health conditions. Community caregivers contribute to the care management of children with medical complexity, serving as advocates and coordinators, primary sources of information about children?s needs, and facilitators of access to care. They are often the first point of contact for the families of children with medical complexity, particularly in vulnerable communities, including families in rural areas, low-income households, and non?English-speaking immigrant populations. Objective: This study aims to introduce the HIT needs and preferences for children with medical complexity from the perspective of community caregivers. By including their perspective on HIT development, we can better appreciate the challenges they face, the insights they offer, and the ways in which they bridge gaps in care, support, and resources. Methods: We conducted semistructured interviews (n=12) with formal community caregivers of children with medical complexity populations from a parent advocacy network on the US East Coast. Interviews were audio recorded via Zoom and then transcribed. An inductive thematic analysis was conducted to reveal HIT challenges and preferences for improving the care of children with medical complexity. Results: We categorized the interview results into themes and subthemes. There are four main themes: (1) telehealth transforming care for children with medical complexity during the COVID-19 pandemic, (2) suggested tools and technologies for care for children with medical complexity, (3) HIT feature preferences, and (4) transition to adult care. Each theme had multiple subthemes capturing all details related to design features of needed technologies. Conclusions: The study emphasizes the need to develop and enhance HIT for the care of children with medical complexity. The identified themes can serve as design guidelines for designers by establishing a foundation for user-centered HIT tools to effectively support children with medical complexity and their families. Telehealth and mobile health apps could improve care management and quality of life for children with medical complexity. UR - https://pediatrics.jmir.org/2025/1/e67289 UR - http://dx.doi.org/10.2196/67289 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/67289 ER - TY - JOUR AU - Jiménez-Díaz, Alba AU - Pierantonelli, Maitena AU - Morte Coscolín, Patricia AU - Salinas-Uhalte, Amaia AU - Quer-Palomas, Silvia AU - Rivera-Romero, Octavio AU - Herrero, Rocío AU - Fernández-Luque, Luis AU - Baños, Rosa AU - Berrios, C. Ricardo AU - de Arriba, Antonio PY - 2025/2/5 TI - Digital Health Program to Support Family Caregivers of Children Undergoing Growth Hormone Therapy: Qualitative Feasibility Study JO - JMIR Pediatr Parent SP - e55023 VL - 8 KW - growth hormone deficiency KW - mobile based solutions KW - caregivers KW - technology acceptance KW - digital health KW - children KW - therapy KW - feasibility study KW - health condition KW - psychological burden KW - quality of life KW - wellbeing KW - pediatric KW - mobile Health KW - mHealth KW - behavioral change KW - parent-child relationship N2 - Background: Caregivers of children with growth hormone deficiency often face emotional challenges (eg, stress) associated with their children?s health conditions. This psychological burden might affect children?s adherence to treatment and hinder their health-related quality of life (HrQoL). This assumption is leading to seriously considering multidimensional clinical approaches to pediatric health conditions where the emotional well-being of caregivers should be accounted for to optimize children?s health outcomes. Novel mobile health (mHealth) solutions based on emotional and behavioral change techniques can play a promising role because they are increasingly used within different health areas to support adaptive psychological functioning. However, whether and how mHealth solutions of this type of emotional well-being support caregivers of children with growth-related problems is an issue that needs to be clarified. Objective: This study aimed to gather qualitative information to better understand individualized experiences of caregiving of children undergoing growth hormone therapy (GHt) and perceived barriers or facilitators for the adoption of an mHealth solution called Adhera Caring Digital Program (ACDP). Methods: A total of 10 family caregivers were recruited at Miguel Servet Children?s Hospital, and they engaged with the ACDP for 1 month. The ACDP is a mobile-based digital intervention focused on promoting the overall well-being of family caregivers which provides access to personalized education, motivational mobile-based messages, and mental well-being exercises such as mindfulness or respiratory exercises. Subsequently, an individual semistructured interview was performed to gather qualitative user experience information. Results: The digital intervention was well-received. The ACDP was found to be useful, easy to use, and understandable, addressing all the difficulties expressed by caregivers. It was also noted to be particularly helpful at the beginning of the treatment and, for some families, became a natural tool that strengthened the parent-child relationship. Conclusions: The ACDP is a promising and well-accepted tool that enhances the experience of patients and caregivers. It improves the management of growth hormone deficiency and promotes the overall well-being of family caregivers. Trial Registration: ClinicalTrials NCT04812665; https://clinicaltrials.gov/study/NCT04812665 International Registered Report Identifier (IRRID): RR2-10.1186/s12911-022-01935-1 UR - https://pediatrics.jmir.org/2025/1/e55023 UR - http://dx.doi.org/10.2196/55023 UR - http://www.ncbi.nlm.nih.gov/pubmed/39908086 ID - info:doi/10.2196/55023 ER - TY - JOUR AU - Chen, Shu-Cheng AU - Lo, Kwai-Ching AU - Li, Han AU - Wong, Pong-Ming AU - Pang, Lok-Yi AU - Qin, Jing AU - Yeung, Wing-Fai PY - 2025/1/30 TI - Parental Experiences of Administering Pediatric Tuina for Sleep and Appetite in Early School-Aged Children With Attention-Deficit/Hyperactivity Disorder: Qualitative Study in Hong Kong JO - JMIR Pediatr Parent SP - e65471 VL - 8 KW - pediatric massage KW - child KW - traditional Chinese medicine KW - TCM KW - ADHD KW - qualitative study KW - complementary medicine KW - attention deficit KW - hyperactivity KW - massage KW - tuina KW - tui na KW - mental health KW - sleep KW - appetite KW - parent KW - parenting KW - interview KW - focus group KW - anmo KW - attention-deficit/hyperactivity disorder N2 - Background: Previous research suggested that parent-administered pediatric tuina could improve symptoms of attention-deficit/hyperactivity disorder (ADHD), such as sleep quality and appetite. Objective: This study aimed to explore the experiences and perceptions of parents administering pediatric tuina to school-aged children with ADHD in Hong Kong. Methods: This qualitative study was embedded in a pilot randomized controlled trial on parent-administered pediatric tuina for improving sleep and appetite in school-aged children diagnosed with ADHD. Purposive sampling was used to invite 12 parents who attended a pediatric tuina training program and delivered the intervention to their children at home for at least 8 weeks. Data were collected through semistructured focus group interviews and individual interviews, which were audio-recorded, transcribed verbatim, and analyzed using thematic analysis. Results: Two main themes emerged: (1) effects of parent-administered pediatric tuina and (2) parents? experience of administering pediatric tuina. Parents reported significant improvements in children?s sleep quality, appetite, behavior, mental state, and academic performance. Facilitators provided professional guidance and applied a user-friendly course design. Challenges included difficulties in mastering techniques, locating acupuncture points, and time management. Participants suggested the need for more traditional Chinese medicine pattern diagnostic sessions, real-time supervision methods, and extended follow-up to better observe long-term effects. Conclusions: Parent-administered pediatric tuina was perceived to improve children?s sleep quality and appetite significantly, along with other aspects of well-being. Professional guidance and a structured training program facilitated implementation, and challenges highlighted the need for more frequent diagnostic sessions, real-time supervision, and extended follow-up. Trial Registration: ClinicalTrials.gov NCT06007742; https://clinicaltrials.gov/study/NCT06007742 UR - https://pediatrics.jmir.org/2025/1/e65471 UR - http://dx.doi.org/10.2196/65471 ID - info:doi/10.2196/65471 ER - TY - JOUR AU - Zhu, Diana AU - Dordevic, L. Aimee AU - Davidson, E. Zoe AU - Gibson, Simone PY - 2025/1/30 TI - Families? Experiences With Family-Focused Web-Based Interventions for Improving Health: Qualitative Systematic Literature Review JO - J Med Internet Res SP - e58774 VL - 27 KW - eHealth KW - family based KW - qualitative KW - pediatric health KW - internet KW - mobile phone N2 - Background: eHealth interventions can favorably impact health outcomes and encourage health-promoting behaviors in children. More insight is needed from the perspective of children and their families regarding eHealth interventions, including features influencing program effectiveness. Objective: This review aimed to explore families? experiences with family-focused web-based interventions for improving health. Methods: Five databases were searched on October 26, 2022?updated on October 24, 2023?for studies reporting qualitative data on participating children or their caregivers? experiences with web-based programs. Study identification was performed in duplicate and studies were independently appraised for quality. Thematic synthesis was undertaken on qualitative data extracted from the results section of each included article. Results: Of 5524 articles identified, 28 articles were included. The studies examined the experiences of school-aged children (aged 5-18 years) and their caregivers (mostly mothers) with 26 web-based interventions that were developed to manage 17 different health conditions or influence health-supporting behaviors. Six themes were identified on families? experiences: connecting with others, agency of learning, program reputability or credibility, program flexibility, meeting participants? needs regarding program content or delivery, and impact on lifestyle. Conclusions: Families positively perceived family-focused web-based interventions, finding value in quality connections and experiencing social support; intervention features aligned with behavioral and self-management principles. Key considerations were highlighted for program developers and health care professionals on ways to adapt eHealth elements to meet families? health-related needs. Continued research examining families? experiences with eHealth interventions is needed, including the experiences of families from diverse populations and distinguishing the perspectives of children, their caregivers, and other family members, to inform the expansion of family-focused eHealth interventions in health care systems. Trial Registration: PROSPERO CRD42022363874; https://tinyurl.com/3xxa8enz UR - https://www.jmir.org/2025/1/e58774 UR - http://dx.doi.org/10.2196/58774 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58774 ER - TY - JOUR AU - Reuther, Christina AU - von Essen, Louise AU - Mustafa, Imran Mudassir AU - Saarijärvi, Markus AU - Woodford, Joanne PY - 2025/1/28 TI - Engagement With an Internet-Administered, Guided, Low-Intensity Cognitive Behavioral Therapy Intervention for Parents of Children Treated for Cancer: Analysis of Log-Data From the ENGAGE Feasibility Trial JO - JMIR Form Res SP - e67171 VL - 9 KW - childhood cancer survivor KW - cognitive behavioral therapy KW - engagement KW - internet-administered intervention KW - log-data KW - parents N2 - Background: Parents of children treated for cancer may experience psychological difficulties including depression, anxiety, and posttraumatic stress. Digital interventions, such as internet-administered cognitive behavioral therapy, offer an accessible and flexible means to support parents. However, engagement with and adherence to digital interventions remain a significant challenge, potentially limiting efficacy. Understanding factors influencing user engagement and adherence is crucial for enhancing the acceptability, feasibility, and efficacy of these interventions. We developed an internet-administered, guided, low-intensity cognitive behavioral therapy (LICBT)?based self-help intervention for parents of children treated for cancer, (EJDeR [internetbaserad självhjälp för föräldrar till barn som avslutat en behandling mot cancer or internet-based self-help for parents of children who have completed cancer treatment]). EJDeR included 2 LICBT techniques?behavioral activation and worry management. Subsequently, we conducted the ENGAGE feasibility trial and EJDeR was found to be acceptable and feasible. However, intervention adherence rates were marginally under progression criteria. Objective: This study aimed to (1) describe user engagement with the EJDeR intervention and examine whether (2) sociodemographic characteristics differed between adherers and nonadherers, (3) depression and anxiety scores differed between adherers and nonadherers at baseline, (4) user engagement differed between adherers and nonadherers, and (5) user engagement differed between fathers and mothers. Methods: We performed a secondary analysis of ENGAGE data, including 71 participants. User engagement data were collected through log-data tracking, for example, communication with e-therapists, homework submissions, log-ins, minutes working with EJDeR, and modules completed. Chi-square tests examined differences between adherers and nonadherers and fathers and mothers concerning categorical data. Independent-samples t tests examined differences regarding continuous variables. Results: Module completion rates were higher among those who worked with behavioral activation as their first LICBT module versus worry management. Of the 20 nonadherers who opened the first LICBT module allocated, 30% (n=6) opened behavioral activation and 70% (n=14) opened worry management. No significant differences in sociodemographic characteristics were found. Nonadherers who opened behavioral activation as the first LICBT module allocated had a significantly higher level of depression symptoms at baseline than adherers. No other differences in depression and anxiety scores between adherers and nonadherers were found. Minutes working with EJDeR, number of log-ins, days using EJDeR, number of written messages sent to e-therapists, number of written messages sent to participants, and total number of homework exercises submitted were significantly higher among adherers than among nonadherers. There were no significant differences between fathers and mothers regarding user engagement variables. Conclusions: Straightforward techniques, such as behavioral activation, may be well-suited for digital delivery, and more complex techniques, such as worry management, may require modifications to improve user engagement. User engagement was measured behaviorally, for example, through log-data tracking, and future research should measure emotional and cognitive components of engagement. Trial Registration: ISRCTN Registry 57233429; https://doi.org/10.1186/ISRCTN57233429 UR - https://formative.jmir.org/2025/1/e67171 UR - http://dx.doi.org/10.2196/67171 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/67171 ER - TY - JOUR AU - Barbazi, Neda AU - Shin, Youn Ji AU - Hiremath, Gurumurthy AU - Lauff, Anne Carlye PY - 2025/1/27 TI - Developing Assessments for Key Stakeholders in Pediatric Congenital Heart Disease: Qualitative Pilot Study to Inform Designing of a Medical Education Toy JO - JMIR Form Res SP - e63818 VL - 9 KW - assessment KW - congenital heart disease KW - children health literacy KW - health education KW - caregiving KW - patient-centered care KW - design KW - qualitative pilot KW - children health KW - educational interventions N2 - Background: Congenital heart disease (CHD) is a birth defect of the heart that requires long-term care and often leads to additional health complications. Effective educational strategies are essential for improving health literacy and care outcomes. Despite affecting around 40,000 children annually in the United States, there is a gap in understanding children?s health literacy, parental educational burdens, and the efficiency of health care providers in delivering education. Objective: This qualitative pilot study aims to develop tailored assessment tools to evaluate educational needs and burdens among children with CHD, their parents, and health care providers. These assessments will inform the design of medical education toys to enhance health management and outcomes for pediatric patients with CHD and key stakeholders. Methods: Through stakeholder feedback from pediatric patients with CHD, parents, and health care providers, we developed three tailored assessments in two phases: (1) iterative development of the assessment tools and (2) pilot testing. In the first phase, we defined key concepts, conducted a literature review, and created initial drafts of the assessments. During the pilot-testing phase, 12 participants were recruited at the M Health Fairview Pediatric Specialty Clinic for Cardiology?Explorer in Minneapolis, Minnesota, United States. We gathered feedback using qualitative methods, including cognitive interviews such as think-aloud techniques, verbal probing, and observations of nonverbal cues. The data were analyzed to identify the strengths and weaknesses of each assessment item and areas for improvement. Results: The 12 participants included children with CHD (n=5), parents (n=4), and health care providers (n=3). The results showed the feasibility and effectiveness of the tailored assessments. Participants showed high levels of engagement and found the assessment items relevant to their education needs. Iterative revisions based on participant feedback improved the assessments? clarity, relevance, and engagement for all stakeholders, including children with CHD. Conclusions: This pilot study emphasizes the importance of iterative assessment development, focusing on multistakeholder engagement. The insights gained from the development process will guide the creation of tailored assessments and inform the development of child-led educational interventions for pediatric populations with CHD. UR - https://formative.jmir.org/2025/1/e63818 UR - http://dx.doi.org/10.2196/63818 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63818 ER - TY - JOUR AU - Hagström, Josefin AU - Blease, Charlotte AU - Harila, Arja AU - Lähteenmäki, Päivi AU - Scandurra, Isabella AU - Hägglund, Maria PY - 2025/1/27 TI - Perspectives on Swedish Regulations for Online Record Access Among Adolescents With Serious Health Issues and Their Parents: Mixed Methods Study JO - JMIR Pediatr Parent SP - e63270 VL - 8 KW - health care professionals KW - adolescent health KW - patient-accessible electronic health record KW - electronic health record KW - patient portal KW - survey KW - eHealth KW - interviews N2 - Background: With the increasing implementation of patient online record access (ORA), various approaches to access to minors? electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child?s care and involve them in their care. However, the perspectives of adolescents with serious health issues and their parents have not been studied. Objective: This study aims to qualitatively and quantitatively investigate the perceived benefits and risks of ORA and the awareness of and views on ORA regulations among adolescents with serious health issues and their parents in Sweden. Methods: We used a convergent mixed methods (qualitative and quantitative) design, consisting of a survey and semistructured individual interviews with adolescents with serious health issues (aged 13-18 y) and their parents. Participants were recruited via social media and in clinics. Quantitative data were presented descriptively. Interviews were audio recorded, transcribed, and analyzed using inductive thematic content analysis. Results: The survey population included 88 individuals (adolescents: n=31, 35%; parents: n=57, 65%). Interviews were completed by 8 (26%) of the 31 adolescents and 17 (30%) of the 57 parents. The mean age of the surveyed adolescents was 16 (SD 1.458) years, and most of the parents (29/57, 51%) were aged 45 to 54 years. The surveys indicated that most of the parents (51/56, 91%) were critical of the access gap, and most of the adolescents (20/31, 65%) were unaware of the age at which they could gain access. In the interviews, adolescents and parents identified benefits related to ORA that were categorized into 6 themes (empowering adolescents, improved emotional state, enhanced documentation accuracy, improved partnership and communication, supported parental care management, and better prepared for appointments) and risks related to ORA that were categorized into 4 themes (emotional distress and confusion, threatened confidentiality, increased burden, and low usability). Adolescents? and parents? views on ORA regulations were categorized into 3 themes (challenges of the access gap, balancing respect for autonomy and support, and suggested regulatory change). Conclusions: In Sweden, ORA regulations and a lack of available information cause significant inconvenience for adolescents with serious health issues and their parents. Views on access age limits differed, with adolescents expressing their perceived need for independent access, while parents exhibited concerns about adolescents having ORA. The findings indicated the importance of increased education, dialogue, and flexibility to uphold confidential and consistent delivery of adolescent health care. Further exploration is needed to understand the experiences of adolescents and parents in diverse clinical and geographic contexts, as well as the perspectives of pediatric health care professionals on restrictive ORA regulations. UR - https://pediatrics.jmir.org/2025/1/e63270 UR - http://dx.doi.org/10.2196/63270 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63270 ER - TY - JOUR AU - Ganzevoort, N. Ilse AU - van der Veen, L. Adriëlla AU - Alma, A. Manna AU - Berger, Y. Marjolein AU - Holtman, A. Gea PY - 2025/1/27 TI - Children?s and Their Parents? Experiences With Home-Based Guided Hypnotherapy: Qualitative Study JO - JMIR Pediatr Parent SP - e58301 VL - 8 KW - qualitative study KW - primary health care KW - children KW - functional abdominal pain KW - irritable bowel syndrome KW - hypnotherapy KW - eHealth KW - abdominal pain KW - child KW - parents KW - accessibility KW - questionnaire KW - interviews KW - thematic analysis KW - home guided KW - primary care KW - mobile phone N2 - Background: Management of children with functional abdominal pain (FAP) or irritable bowel syndrome (IBS) is difficult in primary care. When education and reassurance do not alleviate symptoms, primary care physicians lack treatment options for children with FAP or IBS. Home-based guided hypnotherapy is a promising treatment because of its accessibility. To address feasibility, it is of utmost importance to take experiences from children and their parents into account. Objective: We aimed to explore children?s and their parents? experiences with home-based guided hypnotherapy for children with FAP or IBS. Methods: This qualitative study used open-ended questions from a questionnaire and in-depth semistructured interviews with children and their parents who had a hypnotherapy intervention prescribed. The interviews were audio-recorded and transcribed verbatim. Data were collected and analyzed iteratively using thematic content analysis. Results: A total of 76 children were eligible, and we collected questionnaire data from 56 children. A total of 23 interviews were conducted with 10 children and 15 parents. Six themes emerged from questionnaire data and interviews: impression of the exercises, not for everyone, influence of perceived effect, integrating exercises in daily life, content and practicalities of the website, and customization to personal preferences. Children with FAP or IBS experienced home-based guided hypnotherapy and the exercises differently, ranging from boring to fun. From interviews with the parents, it emerged that hypnotherapy is not suitable for everyone; for example, when children are very young or have a low developmental level, cannot sit still, cannot surrender to the exercises, or are too energetic or stressed, it might be difficult to comply. Experiences were shaped by the influence of a perceived effect and to which extent children were able to integrate exercises in daily life. The content and practicalities of the website also influenced experiences, and hypnotherapy that is adaptable to personal preferences, including by appearance and content, would be highly appreciated. Conclusions: The children and parents experienced home-based guided hypnotherapy differently, ranging from boring to fun. Hypnotherapy might be difficult or boring for some children. The children enjoyed hypnotherapy when they liked the topic or story, felt positive effects, could easily integrate exercises in daily life, or enjoyed the website in general. The children?s experiences and adherence can be further improved by adding short exercises and customizing hypnotherapy to their personal preferences on the website?s appearance and content. This could increase effectiveness but must be studied further. Trial Registration: ClinicalTrials.gov NCT05636358; https://clinicaltrials.gov/study/NCT05636358 International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2022-069653 UR - https://pediatrics.jmir.org/2025/1/e58301 UR - http://dx.doi.org/10.2196/58301 ID - info:doi/10.2196/58301 ER - TY - JOUR AU - Duncan, L. Christina AU - Muther, F. Emily AU - Lindwall, J. Jennifer AU - Durkin, Kristine AU - Ruvalcaba, Elizabeth AU - Williamson, Eliza AU - Ahrabi-Nejad, Corrine AU - Bord, Evelyn AU - Green, Angela AU - Harrison, L. Megan AU - Polineni, Deepika PY - 2025/1/20 TI - Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study JO - J Particip Med SP - e49941 VL - 17 KW - cystic fibrosis KW - telecoaching KW - self-management KW - community engagement KW - community partner KW - intervention development N2 - Background: Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management. Objective: This study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population?centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it). Methods: AYA with CF, their caregivers, and health professionals from their CF care teams were recruited to take part in focus groups (or individual qualitative interviews) through a video call interface to (1) obtain perspectives on the overall structure and logistics of the intervention (ie, Step 1) and (2) refine the overall framework of the intervention and obtain feedback on feasibility, content, materials, and coach training (ie, Step 2). Qualitative data were analyzed using a reflexive thematic analysis process. Results were used to create and then modify the intervention structure and content in response to community partner input. Results: For Step 1, a total of 31 AYA and 20 clinicians took part in focus groups or interviews, resulting in 2 broad themes: (1) video call experience and (2) logistics and content of intervention. For Step 2, a total of 22 AYA, 18 clinicians, and 11 caregivers completed focus groups or interviews, yielding 3 major themes: (1) intervention structure, (2) intervention materials, and (3) session-specific feedback. Our Step 1 qualitative findings helped inform the structure (eg, telecoaching session frequency and duration) and approach of the telecoaching intervention. Step 2 qualitative results generally suggested that community partners perceived the feasibility and practicality of the proposed telecoaching intervention in promoting self-management in the face of complex treatment regimens. Extensive specific feedback was used to refine our telecoaching intervention before its efficacy testing in subsequent research. The diverse community partner input was critical in optimizing and tailoring our telecoaching intervention. Conclusions: This study documents the methods and results for engaging key community partners in creating an evidence-based behavioral intervention to promote self-management in AYA with CF. Incorporating the lived experiences and perspectives of community partners is essential when devising tailored and patient-centered interventions. UR - https://jopm.jmir.org/2025/1/e49941 UR - http://dx.doi.org/10.2196/49941 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/49941 ER - TY - JOUR AU - Zhu, Wenqing AU - Gu, Shuneng AU - Li, Jian AU - Lin, Jin AU - Hu, Chanling AU - Liu, Rui PY - 2025/1/16 TI - Transformative Gamified Binocular Therapy for Unilateral Amblyopia in Young Children: Pilot Prospective Efficacy and Safety Study JO - JMIR Serious Games SP - e63384 VL - 13 KW - amblyopia KW - binocular treatment KW - digital therapy KW - game KW - stereoacuity KW - visual acuity N2 - Background: Amblyopia is a common cause of visual impairment in children. Compliance with traditional treatments for amblyopia is challenging due to negative psychosocial impacts. Recent shifts in amblyopia treatment have moved from suppressing the dominant eye to enhancing binocular visual function. Binocular digital therapy has become a promising approach. Objective: The aim of this study was to evaluate the effects of binocular gamified digital therapy on visual acuity and stereoacuity (SA) in children with unilateral amblyopia. Methods: This pilot prospective study enrolled 11 children aged 4-6 years with unilateral amblyopia. Following at least 8 weeks of refractive correction, participants underwent binocular gamified digital therapy for 60 minutes per day, 5 days a week. The therapy used a roguelike shooting game delivered under binocular conditions through two independent channels with a real-time artificial intelligence visual engine. Assessments of distance visual acuity (DVA), near visual acuity (NVA), and SA were conducted at baseline and again at 4, 8, and 12 weeks. Results: At 12 weeks, the following significant improvements were noted: amblyopic eye DVA improved by 1.0 line (P=.01; d=0.77), binocular DVA improved by 0.7 lines (P=.006; d=1.00), and SA improved by 0.3 logarithm (log) arcseconds (P=.01; d=0.97). At 8 weeks, improvements included amblyopic eye DVA by 0.9 lines (P=.046; d=1.00) and SA by 0.28 log arcseconds (P=.02; d=0.90). No significant adverse events were observed, although one participant developed progressive esotropia. Conclusions: Binocular gamified digital therapy is effective and safe for improving visual outcomes in children aged 4-6 years with unilateral amblyopia. Trial Registration: Chinese Clinical Trial Registry ChiCTR2300072066; https://www.chictr.org.cn/showproj.html?proj=198625 UR - https://games.jmir.org/2025/1/e63384 UR - http://dx.doi.org/10.2196/63384 ID - info:doi/10.2196/63384 ER - TY - JOUR AU - Keim-Malpass, Jessica AU - Muir, Jane K. AU - Letzkus, C. Lisa AU - Scheer, Eleanore AU - Valdez, S. Rupa PY - 2024/12/30 TI - Examining the Spillover Economic Impacts of Caregiving Among Families of Children With Medical Complexity to Inform Inclusive Economic Models: Qualitative Study JO - J Particip Med SP - e60666 VL - 16 KW - caregiving KW - children with medical complexity KW - social network KW - qualitative KW - self-management KW - care coordination KW - economic evaluation KW - spillover KW - economic model KW - care KW - mobile phone N2 - Background: Children with medical complexity represent a heterogeneous group of children with multiple chronic health care conditions. Caregivers of children with medical complexity experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child?s life. The spillover, or indirect, economic impacts of caregiving are understudied in the context the family units of children with medical complexity. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease, because they lack direct caregiver voice and context of caregiving activities, and existing methods have been noted to be ableist. Objective: This study aimed to explore the economic spillover impacts of caregiving among families of children with medical complexity using their own words and perspectives, with the intent of expanding caregiver-centered perspectives when developing economic models. Methods: This study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of children with medical complexity and their social networks. Caregivers of children with medical complexity were recruited through a pediatric complex care clinic at an academic medical center in the mid-Atlantic region, United States. This study used inductive qualitative descriptive methods and a template to define features of the person impacted and to define the economic construct as either a direct or indirect (spillover) cost. Results: A total of 20 caregivers were included in this study. Perspectives from the caregivers of children with medical complexity revealed several key themes: (1) time lost from employment, impacting the primary caregivers; (2) physical and mental health impacts, impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care, impacting the child themselves, siblings, and the primary caregivers; and (4) impacts to the social network or social capital. Conclusions: The themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of children with medical complexity. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive. International Registered Report Identifier (IRRID): RR2-10.2196/14810 UR - https://jopm.jmir.org/2024/1/e60666 UR - http://dx.doi.org/10.2196/60666 UR - http://www.ncbi.nlm.nih.gov/pubmed/38758728 ID - info:doi/10.2196/60666 ER - TY - JOUR AU - Doyle, A. Tom AU - Vershaw, L. Samantha AU - Conboy, Erin AU - Halverson, E. Colin M. PY - 2024/12/30 TI - Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases JO - JMIR Hum Factors SP - e57833 VL - 11 KW - social media KW - rare disease KW - support groups KW - pediatric rare disease KW - Ehlers-Danlos syndrome KW - collagen disease KW - fibrillar collagen KW - cutis elastica KW - connective tissue disorders KW - hyperelasticity KW - hypermobility of joints, inherited KW - genetic disorder KW - genetics KW - pediatric N2 - Background: The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel uniquely isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what these groups are particularly useful or helpful for patients and parents of children with RDs. Objective: This study aimed to identify what specific features of disease-related support groups (DRSGs) the RD community finds particularly useful or supportive and provide a set of recommendations to improve social media?based RD support groups based on this information. Methods: Semistructured qualitative interviews were performed with patients and parents of patients with RDs. Interview participants had to be at least 18 years of age at the time of the interview, be seen by a genetics specialist at a partner health care institution and be proficient in the English language. Social media use was not a prerequisite for participation, so interview participants ranged from extensive users of social media to those who chose to remain off all social media. All interviews were conducted by phone, recorded, and then transcribed. Interview transcripts were then coded using the 6 steps outlined by Braun and Clarke. Three researchers (TAD, SLV, and CMEH) performed initial coding. After this, the study team conducted a review of themes and all members of the team agreed upon a final analysis and presentation of data. Results: We conducted 31 interviews (mean age 40, SD 10.04 years; n=27, 87% were women; n=30, 97% were non-Hispanic White). Thematic analysis revealed that social media DRSG users identified the informational usefulness of these groups as being related to the gathering and sharing of specific information about an RD, clarification about the importance and meaning of certain symptoms, and obtaining insight into an RD?s progression and prognosis. Participants also identified that DRSGs were useful sources of practical information, such as tips and tricks about managing RD-related issues and concerns. In addition, participants found DRSGs to be a useful space for sharing their disease-related stories but also highlighted a feeling of exhaustion from overexposure and overuse of DRSGs. Conclusions: This study identifies the usefulness of DRSGs for the RD community and provides a set of recommendations to improve future instances of DRSGs. These recommendations can be used to create DRSGs that are less prone to splintering into other DRSGs, thus minimizing the risk of having important RD-related information unhelpfully dispersed amongst a multitude of support groups. UR - https://humanfactors.jmir.org/2024/1/e57833 UR - http://dx.doi.org/10.2196/57833 UR - http://www.ncbi.nlm.nih.gov/pubmed/39752188 ID - info:doi/10.2196/57833 ER - TY - JOUR AU - Nakamura, Kanako AU - Hamada, Yuko AU - Fujita, Ayaka AU - Morokuma, Seiichi PY - 2024/12/18 TI - Factors That Affect the Quality of Life of Mothers Caring for Children With Medical Needs at Home: Cross-Sectional Questionnaire Study JO - Asian Pac Isl Nurs J SP - e63946 VL - 8 KW - home care KW - children with special health care needs KW - children with medical complexity KW - mother KW - quality of life KW - caregiver KW - questionnaire N2 - Background: The number of children requiring daily medical care is on the rise, with many being cared for at home. This situation places a significant burden on mothers, who often serve as the primary caregivers. Objective: This study aimed to clarify the factors that affect the quality of life of mothers with children who require home health care. Methods: A questionnaire study was conducted among mothers of children needing medical care at home, with 46 participants responding. The questionnaire included items regarding the child?s condition, the mother?s situation, and the World Health Organization Quality of Life-26scale. Results: Factors influencing the quality of life of mothers included whether the child attended daycare or school (?=.274; P=.04), the duration of home care (?=.305; P=.02), and the presence or absence of position changes (?=?.410; P=.003). The presence or absence of position changes had the most significant impact (adjusted R2=.327). Conclusions: The most significant factor affecting the quality of life of mothers of children requiring home medical care is the presence or absence of positional changes. UR - https://apinj.jmir.org/2024/1/e63946 UR - http://dx.doi.org/10.2196/63946 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63946 ER - TY - JOUR AU - Alzawahreh, Salah AU - Ozturk, Candan PY - 2024/12/10 TI - Improving Self-Efficacy, Quality of Life, and Glycemic Control in Adolescents With Type 1 Diabetes: Randomized Controlled Trial for the Evaluation of the Family-Centered Empowerment Model JO - JMIR Form Res SP - e64463 VL - 8 KW - adolescents KW - family-centered empowerment model KW - glycemic control KW - quality of life KW - self-efficacy KW - type 1 diabetes mellitus KW - T1DM KW - family-centered KW - teenager KW - glycemic KW - experimental evaluation KW - empowerment KW - Jordan KW - glycosylated hemoglobin KW - HbA1c KW - experimental study KW - family KW - care education KW - self-care KW - educational program KW - mobile phone N2 - Background: Poor glycemic management in adolescents with type 1 diabetes mellitus (T1DM) increases complications. Enhanced control is associated with other factors, such as cultural, socioeconomic, and health care system disparities specific to the Middle East, which can greatly influence individuals? ability to get and use health care services as well as their reaction to treatment approaches. Objective: This study aims to evaluate the impact of the family-centered empowerment model on Jordanian adolescents with T1DM, focusing on their glycosylated hemoglobin levels, self-efficacy, and quality of life (QOL). Methods: A randomized controlled trial involved 68 adolescents with T1DM visiting Jordanian Royal Medical Services? clinics. Two sets of participant groups were created: control (n=34) and intervention (n=34). Participants were randomly assigned to either the intervention group, receiving the family-centered empowerment model intervention, or the control group, receiving standard care. Data were collected through face-to-face interviews and medical records. Results: From April to October 2023, a total of 68 adolescents with T1DM participated in the study at the Jordanian Royal Medical Services. QOL had significant improvement among 13 (38%) of the 34 participants in the intervention group, and the program significantly improved moderate self-efficacy levels in 12 (35%) patients (P<.001). In addition, the average glycosylated hemoglobin levels dropped from 11.25% to 10.23% (P<.001). Additionally, improvements were seen in stress management, communication, and treatment adherence, with a substantial decrease in treatment obstacles. The intervention was successful in improving both clinical and psychosocial outcomes, as evidenced by the fact that the control group showed no noticeable improvements in these parameters. Conclusions: The study suggests that patients with T1DM should receive continuous care education sessions, including self-care training, to improve their health. Nurses should also incorporate this training into treatment plans and educational programs for adolescents to enhance their QOL. Trial Registration: ClinicalTrials.gov NCT06694467; https://clinicaltrials.gov/study/NCT06694467 UR - https://formative.jmir.org/2024/1/e64463 UR - http://dx.doi.org/10.2196/64463 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64463 ER - TY - JOUR AU - Song, Kyungchul AU - Ko, Taehoon AU - Chae, Wook Hyun AU - Oh, Suk Jun AU - Kim, Ho-Seong AU - Shin, Joo Hyun AU - Kim, Jeong-Ho AU - Na, Ji-Hoon AU - Park, Jung Chae AU - Sohn, Beomseok PY - 2024/11/27 TI - Development and Validation of a Prediction Model Using Sella Magnetic Resonance Imaging?Based Radiomics and Clinical Parameters for the Diagnosis of Growth Hormone Deficiency and Idiopathic Short Stature: Cross-Sectional, Multicenter Study JO - J Med Internet Res SP - e54641 VL - 26 KW - dwarfism KW - pituitary KW - idiopathic short stature KW - child KW - adolescent KW - machine learning KW - magnetic resonance imaging KW - MRI N2 - Background: Growth hormone deficiency (GHD) and idiopathic short stature (ISS) are the major etiologies of short stature in children. For the diagnosis of GHD and ISS, meticulous evaluations are required, including growth hormone provocation tests, which are invasive and burdensome for children. Additionally, sella magnetic resonance imaging (MRI) is necessary for assessing etiologies of GHD, which cannot evaluate hormonal secretion. Recently, radiomics has emerged as a revolutionary technique that uses mathematical algorithms to extract various features for the quantitative analysis of medical images. Objective: This study aimed to develop a machine learning?based model using sella MRI?based radiomics and clinical parameters to diagnose GHD and ISS. Methods: A total of 293 children with short stature who underwent sella MRI and growth hormone provocation tests were included in the training set, and 47 children who met the same inclusion criteria were enrolled in the test set from different hospitals for this study. A total of 186 radiomic features were extracted from the pituitary glands using a semiautomatic segmentation process for both the T2-weighted and contrast-enhanced T1-weighted image. The clinical parameters included auxological data, insulin-like growth factor-I, and bone age. The extreme gradient boosting algorithm was used to train the prediction models. Internal validation was conducted using 5-fold cross-validation on the training set, and external validation was conducted on the test set. Model performance was assessed by plotting the area under the receiver operating characteristic curve. The mean absolute Shapley values were computed to quantify the impact of each parameter. Results: The area under the receiver operating characteristic curves (95% CIs) of the clinical, radiomics, and combined models were 0.684 (0.590-0.778), 0.691 (0.620-0.762), and 0.830 (0.741-0.919), respectively, in the external validation. Among the clinical parameters, the major contributing factors to prediction were BMI SD score (SDS), chronological age?bone age, weight SDS, growth velocity, and insulin-like growth factor-I SDS in the clinical model. In the combined model, radiomic features including maximum probability from a T2-weighted image and run length nonuniformity normalized from a T2-weighted image added incremental value to the prediction (combined model vs clinical model, P=.03; combined model vs radiomics model, P=.02). The code for our model is available in a public repository on GitHub. Conclusions: Our model combining both radiomics and clinical parameters can accurately predict GHD from ISS, which was also proven in the external validation. These findings highlight the potential of machine learning?based models using radiomics and clinical parameters for diagnosing GHD and ISS. UR - https://www.jmir.org/2024/1/e54641 UR - http://dx.doi.org/10.2196/54641 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54641 ER - TY - JOUR AU - McCullough, May Julie Elizabeth AU - Sinclair, Marlene AU - Gillender, Jonathan AU - McCrossan, Brian AU - Slater, F. Paul AU - Browne, Rosie AU - Casey, Frank PY - 2024/10/22 TI - Touching Technology?Parents? Experiences of Remote Consultations for Children With Severe Congenital Cardiac Conditions: Quasi-Experimental Cohort Study JO - JMIR Pediatr Parent SP - e54598 VL - 7 KW - congenital heart disease KW - pediatric cardiology KW - pediatric cardiologist KW - pediatric KW - parent KW - digital health KW - digital technology KW - digital intervention KW - telemedicine KW - telehealth KW - virtual care KW - virtual health KW - virtual medicine KW - remote consultation KW - telephone consultation KW - video consultation KW - remote patient monitoring KW - technology acceptance KW - videoconferencing consultations N2 - Background: Remote consultations (RCs) using videoconferencing was recommended by the General Medical Council as the method for clinicians to provide patient consultations during the COVID-19 pandemic. Facilitating this while providing high-quality care depends on the usability and acceptability of the technology. Objective: This project aimed to investigate parents? experiences of using videoconferencing technology for real-time RCs with children who had congenital heart defects during the COVID-19 pandemic lockdown. Methods: This study?s design was quasi-experimental and was underpinned by the Unified Theory of Acceptance and Use of Technology model that seeks to explain and predict an individual?s intention to use a technology. Parents were informed of this study by the medical team, posters were made available in the wards and clinics, and leaflets were left for browsing. Clinician screening of potential participants led to the identification of 33 children and parents who were enrolled on this study. The intervention was a web-based RC by medical staff using a secure, interactive videoconferencing platform (Pexip). Each child and their mother or father received 8 RCs with the same specialist doctor or nurse. Measurements were taken using web-based questionnaires pre and post consultation at the first, middle, and last events; questions were focused on the acceptability, usability, and clinical applicability of RCs. Parents? experiences were explored using recorded interviews and analyzed thematically. Results: In total, 29 children aged 4?1052 (mean 95, SD 191.14) days completed the project, receiving a total of 189 RCs as part of their routine care. Parents? prior experience of consultation via videoconference was low; however, as time progressed, their use and acceptance of the technology increased. The intervention was warmly received by all parents who found the face-to-face component particularly useful for discussion with their child?s medical team. Furthermore, parents noted the savings on time, money, and childcare. Conclusions: While in-person consultations are considered the gold standard of patient care, increasing pressures on health services and staff reduce availability. Given the ease of access and additional benefits experienced by parents and their children, it is proposed that hybrid models of consultation and care provision are equal, if not superior, to in-person consultations in the management of children with severe congenital heart defects while reducing costs and pressure on the health service and parents. UR - https://pediatrics.jmir.org/2024/1/e54598 UR - http://dx.doi.org/10.2196/54598 ID - info:doi/10.2196/54598 ER - TY - JOUR AU - Trnka, Pavel AU - Aldaghi, Tahmineh AU - Muzik, Jan PY - 2024/10/10 TI - Categorization of mHealth Coaching Technologies for Children or Adolescents With Type 1 Diabetes: Systematic Review JO - JMIR Pediatr Parent SP - e50370 VL - 7 KW - type 1 diabetes KW - adolescents KW - children KW - parents KW - mHealth KW - information technology KW - PRISMA N2 - Background: Managing type 1 diabetes in children and adolescents can be difficult for parents, health care professionals, and even patients. However, over the last decades, the quality of services provided to patients with diabetes has increased due to advances in IT. Objective: This study aims to comprehensively document the range of IT tools used in the management of diabetes among children and adolescents, with a focus on identifying the technologies most commonly used based on their frequency. In addition, the study aims to explore relevant methodologies for developing diabetes technology and provide valuable information to developers by delineating essential phases of the design process. Methods: The literature search was focused on MEDLINE (PubMed), Web of Science, and Google Scholar for relevant studies. Keywords such as ?type 1 diabetes,? ?adolescents,? ?kids,? ?mHealth,? ?children,? and ?coaching? were combined using Boolean operators. The inclusion criteria were open access, English-language papers published between 2012 and 2023 focusing on patients younger than 18 years and aligned with our research goal. The exclusion criteria included irrelevant topics and papers older than 18 years. By applying the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) method, 2080 studies were recognized, and after selection, 33 papers were agreed upon between the researchers. Results: Four primary categories were defined: types of IT, methodology identification, purpose identification, and feature determination. Among these, mobile health (mHealth) apps emerged as the predominant type of information, garnering 27 mentions. In particular, user-centered design was identified as the most prevalent methodology, cited 22 times. The primary purpose of self-monitoring blood glucose values was mentioned 20 times, while patient education was the highest among common characteristics, with 23 mentions. Conclusions: Based on our research, we advocate for developers to focus on creating an mHealth app that integrates gamification techniques to develop innovative diabetes management solutions. This app should include vital functionalities such as blood glucose monitoring, strategies to improve hemoglobin A1c levels, carbohydrate tracking, and comprehensive educational materials for patients and caregivers. By prioritizing these features, developers can enhance the usability and effectiveness of the technology, thereby better supporting children or adolescents with diabetes in their daily management endeavors. UR - https://pediatrics.jmir.org/2024/1/e50370 UR - http://dx.doi.org/10.2196/50370 ID - info:doi/10.2196/50370 ER - TY - JOUR AU - Deribe, Leul AU - Girma, Eshetu AU - Lindström, Nataliya AU - Gidey, Abdulkadir AU - Teferra, Solomon AU - Addissie, Adamu PY - 2024/10/10 TI - Association of Family-Centered Care With Psychological Distress Among Caregivers of Children With Cancer at a Tertiary-Level Hospital in Ethiopia: Cross-Sectional Study JO - JMIR Cancer SP - e54715 VL - 10 KW - child cancer KW - psychological distress KW - Ethiopia KW - parent KW - caregivers KW - family N2 - Background: Psychological distress (PD) is a common mental health problem faced by caregivers of children with cancer. The involvement of families in childcare was found to be associated with lower levels of distress. Objective: The study aims to determine the associations between family-centered care (FCC) and PD among caregivers of children with cancer receiving treatment at Tikur Anbessa Specialized Hospital (TASH), Ethiopia. Methods: An institution-based, cross-sectional study was conducted from June to December 2022. Caregivers of children with cancer aged 0-14 years receiving cancer treatment at the pediatric oncology unit completed a face-to-face, interviewer-administered, structured questionnaire during a routine inpatient or outpatient visit. The questionnaire included questions on the characteristics of the child and caregiver, PD (measured by the Kessler Psychological Distress Scale [K10]), FCC (measured by the Measure of Processes of Care [MPOC-20]), and social support (measured by the Oslo-3 Social Support Scale [OSS-3]). Data were collected using the Kobo toolbox and exported to SPSS (version 26; IBM Corp) for cleaning and analysis. A multivariable logistic regression model was used. An odds ratio with a 95% CI was calculated, and a P value less than .05 was considered statistically significant. Results: A total of 384 caregivers of children with cancer participated in the study. The total PD score ranged from 10 to 50, with a mean score of 17.30 (SD 8.96; 95% CI 16.84-18.60). The proportion of caregivers found to have mild, moderate, and severe levels of PD was 43 (11.2%), 35 (9.1%), and 51 (13.3%), respectively. The overall prevalence of mild to severe PD symptoms was 33.6% (95% CI 28.9%-38.3%). A statistically significant negative association was found between FCC and PD (adjusted odds ratio [AOR] 0.68, 95% CI 0.53-0.86). In addition, having no formal education (AOR 2.87, 95% CI 1.28-6.45), having a history of relapse (AOR 3.24, 95% CI 1.17-9.02), beginning cancer treatment at TASH (AOR 2.82, 95% CI 1.4-4.85), beginning treatment within the last 3 months (AOR 3.99, 95% CI 1.73-9.23), and beginning treatment within the last 4 to 18 months (AOR 2.68, 95% CI 1.25-5.76) were significantly associated with higher level of PD. Conclusions: A total of 1 in 3 caregivers have reported PD. FCC was found to be protective of PD. The finding of this study suggests the need for FCC intervention to improve the mental health condition of caregivers. In addition, the intervention needs to consider the educational status of the caregivers, the time since the cancer diagnosis, and the history of relapse. UR - https://cancer.jmir.org/2024/1/e54715 UR - http://dx.doi.org/10.2196/54715 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54715 ER - TY - JOUR AU - Taylor, Marin AU - Bondi, Christina Bianca AU - Andrade, F. Brendan AU - Au-Young, H. Stephanie AU - Chau, Vann AU - Danguecan, Ashley AU - Désiré, Naddley AU - Guo, Ting AU - Ostojic-Aitkens, Dragana AU - Wade, Shari AU - Miller, Steven AU - Williams, Samantha Tricia PY - 2024/10/4 TI - Stepped-Care Web-Based Parent Support Following Congenital Heart Disease: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e64216 VL - 13 KW - congenital heart disease KW - neurodevelopmental outcomes KW - web-based mental health care KW - stepped care KW - positive parenting KW - family well-being KW - mental health KW - I-InTERACT-North N2 - Background: Early neurodevelopmental risks, compounded with traumatic medical experiences, contribute to emotional and behavioral challenges in as many as 1 in 2 children with congenital heart disease (CHD). Parents report a strong need for supports; yet, there remains a lack of accessible, evidence-based behavioral interventions available for children with CHD and their families. I-InTERACT-North is a web-based stepped-care mental health program designed to support family well-being and reduce behavioral concerns through positive parenting for children with early medical complexity. In previous pilot studies, the program was effective in increasing positive parenting skills and decreasing child behavior problems, with high parent-reported acceptability. This paper presents the protocol for the first randomized study of stepped-care parent support for families of children with CHD. Objective: This study will involve a single-site, 2-arm, single-blind randomized controlled trial to evaluate (1) the feasibility and acceptability of a web-based stepped-care parent support program (I-InTERACT-North) and (2) the effectiveness of the program in enhancing positive parenting skills and reducing behavioral concerns among families of children with CHD. Methods: Families will be randomized (1:1) to either receive treatment or continue with care as usual for 12 months. Randomization will be stratified by child?s sex assigned at birth and baseline parent-reported child behavior intensity. Primary outcomes include positive parenting skills and child behavior at baseline, 3 months, 6 months, and 12 months. Secondary outcomes include parental mental health, quality of life, service usage, and feasibility including program reach and adherence. A sample size of 244 families will provide >95% power to detect an effect size of d=0.64. Based on attrition data from pilot studies, a target of 382 families will be enrolled. Parent reports of acceptability, adoption, and suggested adaptability of the program will be examined using cross-case thematic analyses. Primary efficacy analysis will be conducted using an intent-to-treat approach. Generalized estimating equations will be used to examine changes in positive parenting. Child behavior, quality of life, and parent mental health will be tested with repeated-measures analyses. Additional sensitivity and replication analyses will also be carried out. Results: Recruitment began in February 2024, and recruitment and follow-up will continue until January 2029. We anticipate results in late 2029. Conclusions: This study aims to test the effectiveness of I-InTERACT-North web-based stepped-care parent support in improving positive parenting skills and reducing child behavior problems in families of children with CHD compared with a care as usual control group. Results will inform future clinical implementation and expansion of this program among families of children with early medical conditions. Trial Registration: ClinicalTrials.gov NCT06075251; https://clinicaltrials.gov/study/NCT06075251 International Registered Report Identifier (IRRID): DERR1-10.2196/64216 UR - https://www.researchprotocols.org/2024/1/e64216 UR - http://dx.doi.org/10.2196/64216 UR - http://www.ncbi.nlm.nih.gov/pubmed/39365658 ID - info:doi/10.2196/64216 ER - TY - JOUR AU - Werner, E. Nicole AU - Morgen, Makenzie AU - Kooiman, Sophie AU - Jolliff, Anna AU - Warner, Gemma AU - Feinstein, James AU - Chui, Michelle AU - Katz, Barbara AU - Storhoff, Brittany AU - Sodergren, Kristan AU - Coller, Ryan PY - 2024/9/9 TI - Effectiveness of a Mobile App (Meds@HOME) to Improve Medication Safety for Children With Medical Complexity: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e60621 VL - 13 KW - medication safety KW - children with medical complexity KW - caregiving KW - polypharmacy KW - medication management N2 - Background: This study will pilot-test the mobile app, Medication Safety @HOME?Meds@HOME intervention to improve medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management for children with medical complexity (CMC). The Meds@HOME app was co-designed with CMC families, secondary caregivers (SCGs), and health professionals to support medication management for primary caregivers (PCGs) and SCGs of CMC. We hypothesize that Meds@HOME will improve caregivers? medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management. Objective: This study aims to evaluate the effectiveness of Meds@HOME on medication administration accuracy for PCGs and SCGs. Methods: This study will recruit up to 152 PCGs and 304 SCGs of CMC who are prescribed at least 1 scheduled high-risk medication and receive care at the University of Wisconsin American Family Children?s Hospital. PCGs will be randomly assigned, for the 6-month trial, to either the control group (not trialing Meds@HOME) or the intervention group (trialing Meds@HOME) using 1:1 ratio. The Meds@HOME app allows caregivers to create a child profile, store medication and care instructions, and receive reminders for upcoming and overdue care routines and medication refills. Surveys completed both at the start and end of the trial measure demographics, medication delivery knowledge, confidence in the CMC?s caregiving network, and comfort with medical information. Univariate and multivariate generalized estimation equations will be used for primary statistical analysis. The primary outcome is the PCG?s rate of medication administration accuracy measured as correct identification of each of the following for a randomly selected high-risk medication: indication, formulation, dose, frequency, and route at baseline and after 6 months. Secondary outcomes include SCG medication administration accuracy (indication, formulation, dose, frequency, and route), count of University of Wisconsin hospital and emergency department encounters, PCG-reported medication adherence, count of deaths, and PCG medication confidence and understanding. Results: Recruitment for this study began on November 29, 2023. As of May 15, 2024, we have enrolled 94/152 (62%) PCGs. We expect recruitment to end by August 1, 2024, and the final participant will complete the study by January 28, 2025, at which point we will start analyzing the complete responses. We expect publication of results at the end of 2025. Conclusions: The Meds@HOME mobile app provides a promising strategy for improving PCG medication safety for CMC who take high-risk medications. In addition, this protocol highlights novel procedures for recruiting SCGs of CMC. In the future, this app could be used more broadly across diverse caregiving networks to navigate complex medication routines and promote medication safety. Trial Registration: ClinicalTrials.gov NCT05816590; https://clinicaltrials.gov/study/NCT05816590 International Registered Report Identifier (IRRID): DERR1-10.2196/60621 UR - https://www.researchprotocols.org/2024/1/e60621 UR - http://dx.doi.org/10.2196/60621 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60621 ER - TY - JOUR AU - Brands, R. Martijn AU - Haverman, Lotte AU - Muis, J. Jelmer AU - Driessens, E. Mariëtte H. AU - Meijer, Stephan AU - van der Meer, M. Felix J. AU - de Jong, Marianne AU - van der Bom, G. Johanna AU - Cnossen, H. Marjon AU - Fijnvandraat, Karin AU - Gouw, C. Samantha PY - 2024/9/3 TI - Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study JO - JMIR Hum Factors SP - e48359 VL - 11 KW - hemophilia KW - telemedicine KW - health records KW - personal KW - decision-making KW - shared KW - patient participation N2 - Background: To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care. We intend to co-design a nationwide digital personal health record (PHR) for patients to help manage their health information. For this, user perspectives are crucial. Objective: This study aims to assess patients? and health care providers? perspectives regarding the use of a PHR in hemophilia care in the Netherlands, required functionalities, and expectations and concerns. Methods: In this semistructured interview study, 19 pediatric and adult persons with hemophilia, parents, and women with other inherited bleeding disorders, as well as 18 health care providers working within and outside of hemophilia treatment centers, participated. Perspectives of patients and providers were explored separately. To explore requirements, participants were asked to prioritize functionalities. Results: Participants expected a PHR would increase the transparency of health information, improve patients? understanding of their illness, and help the coordination of care between health care providers and institutions. Prioritized functionalities included the integration of relevant health information and patient-entered data. Formulated expectations and concerns focused on 4 themes: usability, safety, inclusiveness, and implementation. While patients expressed worries over medicalization (ie, more confrontational reminders of their illness), providers were concerned about an increased workload. Conclusions: People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition. UR - https://humanfactors.jmir.org/2024/1/e48359 UR - http://dx.doi.org/10.2196/48359 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/48359 ER - TY - JOUR AU - Loo, Theoren AU - Altman, Myra AU - Grodberg, David AU - La Guardia, Jennifer AU - Bravata, Dena PY - 2024/8/26 TI - Telebehavioral Health for Caregivers of Children With Behavioral Health Needs to Address Caregiver Strain: Cohort Study JO - JMIR Pediatr Parent SP - e59475 VL - 7 KW - adolescent KW - child KW - caregiver KW - family health KW - resilience KW - psychological KW - mental health KW - pediatric KW - pediatrics KW - paediatric KW - paediatrics KW - children KW - youth KW - adolescents KW - teen KW - teens KW - teenager KW - teenagers KW - strain KW - burden KW - caregiving KW - caregivers KW - carer KW - carers KW - informal care KW - family care KW - spousal care KW - telehealth KW - telemedicine KW - technology-enabled KW - mobile phone N2 - Background: Behavioral health conditions among children have worsened over the past decade. Caregivers for children with behavioral health conditions are at risk for two types of caregiver strain: (1) an objective strain, that results directly from the child?s condition and (2) subjective strain, that arises from the caregiver?s feelings regarding these events. Objective: This study aimed to evaluate the impact of a technology-enabled pediatric and family behavioral health service on caregivers? strain among a commercially insured population. We also explore the common symptom clusters of caregiver strain to better understand the caregiver presentation to inform future care planning. Methods: We examined changes in caregiver strain using the Caregiver Strain Questionnaire-Short Form 7 over the course of their child?s web-based behavioral health care between 2021 and 2023 using a pre-post study design. Common caregiver strain symptom clusters were identified using Ward hierarchical agglomerative clustering. Results: The majority of children were White 60.8% (1002/1647), female 53.6% (882/1647), and aged between 5 and 9 years (33.7%, 555/1647). Families fall broadly into 4 groups based on what drives caregiver strain the most, namely those experiencing (1) disrupted family relationships and time interruption, (2) missed work, (3) worried about their child?s future and feeling tired and sad, and (4) financial strain. Caregiver strain, which was associated with the child?s disease severity (P<.001), decreased significantly in all therapeutic groups. Conclusions: Web-based family-oriented behavioral health care can improve caregiver strain and reduce family and time disruptions, missed work, and financial strain. Sources of caregiver strain vary and may be overlooked when relying on the conventional scoring of the Caregiver Strain Questionnaire-Short Form 7. UR - https://pediatrics.jmir.org/2024/1/e59475 UR - http://dx.doi.org/10.2196/59475 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59475 ER - TY - JOUR AU - Burke, Meghan AU - Li, Chak AU - Cheung, Catherine Waifong AU - Terol, Kaori Adriana AU - Johnston, Amanda AU - Schueller, M. Stephen PY - 2024/8/14 TI - Leveraging Feedback From Families of Children With Autism to Create Digital Support for Service Navigation: Descriptive Study JO - JMIR Form Res SP - e56043 VL - 8 KW - human-centered design KW - autism KW - service access KW - families KW - digital support KW - autistic children KW - autistic KW - children KW - child KW - app KW - apps KW - application KW - applications KW - digital tool KW - tool KW - tools N2 - Background: It is difficult for families to navigate and access services for their children with autism. Barriers to service access are compounded among families from low-resourced backgrounds. Objective: The purpose of our study was to explore the development of an app to facilitate access to services among families of children with autism from low-resourced backgrounds. Our specific aims were to explore feedback from an advisory board about the app and to explore feedback from navigators about the app. Methods: Via a multistage codevelopment process, we elicited feedback from 5 key parties: the research team, a community organization, the app development team, the advisory board, and family navigators. Collectively, 36 individuals provided feedback about the development of the app via individual interviews, focus groups, observations, and surveys. The key features of the app included a dashboard showing the service needs of the family and related resources, a messaging feature between the family, the navigator, and the supervisor, and a fidelity checklist and evaluation feature. Results: The advisory board provided feedback about the app to increase its user-friendliness, include the ability to develop an action plan, improve the identification of needed services, and add information about service providers. Navigators suggested that the app should connect navigators to one another, have a clearer purpose for the notes section, and reflect an easier log-in process. Navigators also wanted training to role-play using the app. After participating in a role play using the app, navigators reported significantly more satisfaction with the app and greater usefulness (P<.001). Conclusions: Our work sheds light on the importance of eliciting feedback from end users, especially users who are often overlooked by the research community and app developers. Further, it is important to elicit feedback in multiple ways to improve the app. UR - https://formative.jmir.org/2024/1/e56043 UR - http://dx.doi.org/10.2196/56043 UR - http://www.ncbi.nlm.nih.gov/pubmed/39141412 ID - info:doi/10.2196/56043 ER - TY - JOUR AU - Chu, Wai Joanna Ting AU - Wilson, Holly AU - Cai, Zhiyin Cynthia AU - McCormack, C. Jessica AU - Newcombe, David AU - Bullen, Chris PY - 2024/7/11 TI - Technologies for Supporting Individuals and Caregivers Living With Fetal Alcohol Spectrum Disorder: Scoping Review JO - JMIR Ment Health SP - e51074 VL - 11 KW - fetal alcohol KW - scoping review KW - technology KW - caregivers KW - diagnosis KW - support KW - intervention KW - fetal alcohol spectrum disorder KW - FASD KW - developmental disability KW - lifelong support KW - caregiver KW - accessibility KW - alcohol KW - alcohol intake KW - pregnant substance KW - pregnant KW - fetal KW - PRISMA KW - Preferred Reporting Items for Systematic Reviews and Meta-Analyses KW - mobile phone N2 - Background: Fetal alcohol spectrum disorder (FASD) is a common developmental disability that requires lifelong and ongoing support but is often difficult to find due to the lack of trained professionals, funding, and support available. Technology could provide cost-effective, accessible, and effective support to those living with FASD and their caregivers. Objective: In this review, we aimed to explore the use of technology available for supporting people living with FASD and their caregivers. Methods: We conducted a scoping review to identify studies that included technology for people with FASD or their caregivers; focused on FASD; used an empirical study design; were published since 2005; and used technology for assessment, diagnosis, monitoring, or support for people with FASD. We searched MEDLINE, Web of Science, Scopus, Embase, APA PsycINFO, ACM Digital Library, JMIR Publications journals, the Cochrane Library, EBSCOhost, IEEE, study references, and gray literature to find studies. Searches were conducted in November 2022 and updated in January 2024. Two reviewers (CZC and HW) independently completed study selection and data extraction. Results: In total, 17 studies exploring technology available for people with FASD showed that technology could be effective at teaching skills, supporting caregivers, and helping people with FASD develop skills. Conclusions: Technology could provide support for people affected by FASD; however, currently there is limited technology available, and the potential benefits are largely unexplored. Trial Registration: PROSPERO CRD42022364885; https://tinyurl.com/3zaatu9u UR - https://mental.jmir.org/2024/1/e51074 UR - http://dx.doi.org/10.2196/51074 ID - info:doi/10.2196/51074 ER - TY - JOUR AU - Tahmasebi, Neda AU - Zarifian, Talieh AU - Ashtari, Atieh AU - Biglarian, Akbar PY - 2024/4/19 TI - Telepractice Parent Training of Enhanced Milieu Teaching With Phonological Emphasis (EMT+PE) For Persian-Speaking Toddlers With Nonsyndromic Cleft Palate: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e54426 VL - 13 KW - telepractice KW - cleft palate KW - language intervention KW - parent training KW - Phonological Emphasis KW - Enhanced Milieu Teaching KW - Persian-speaking toddlers KW - toddler KW - toddlers KW - children KW - child KW - cleft lip KW - language development KW - speech sound disorders KW - speech sound disorder KW - effectiveness KW - parent-based KW - intervention KW - speech KW - therapy N2 - Background: Children born with a cleft palate with or without a cleft lip (CP/L) are at increased risk for delayed language development and speech sound disorders. Enhanced Milieu Teaching with Phonological Emphasis (EMT+PE) is a recommended naturalistic intervention for toddlers with CP/L. The parents? role in providing naturalistic interventions is critical and they need training based on learning principles to implement these interventions. Telepractice is an appropriate method for training parents and children with various speech-related disorders. Objective: This study aims to determine and compare the effectiveness of telepractice and the parent-implemented EMT+PE intervention on language and speech measures in toddlers with CP/L with usual interventions and determine the effectiveness maintenance of the intervention. Methods: A randomized controlled trial (RCT) will assess the efficacy of telepractice and the parent-implemented EMT+PE intervention in enhancing speech and language measures in toddlers with CP/L. Eligible participants will be randomly assigned to one of 2 groups: the conventional intervention group and the EMT+PE intervention group. Participants? speech and language measures will be evaluated remotely by trained raters before and after the intervention and 2 months after the intervention. Parents of participants in the intervention group will receive 3 months of training in speech and language supportive strategies from trained therapists using telehealth fidelity scales. Parents of participants in the control group will receive the conventional speech and language intervention by cleft team therapists. Study outcomes will include language variables (mean length of utterance) and speech production variables (percent correct consonants). Results: The protocol was approved by the Research Ethics Committee of the University of Social Welfare and Rehabilitation Sciences in February 2022. The selection process of participants, as well as training therapists and raters, commenced in January 2022, the therapy and follow-up period ended in June 2023, and pre- and postintervention assessments have been conducted. Data analysis is ongoing, and we expect to publish our results by the summer of 2024. Funding is yet to be received. Conclusions: The results of this study may help us develop a speech and language intervention with a different delivery model for toddlers with CP/L, and the cleft team care can use these results in service delivery. Consistent with our hypothesis, speech and language measures are expected to improve. International Registered Report Identifier (IRRID): DERR1-10.2196/54426 UR - https://www.researchprotocols.org/2024/1/e54426 UR - http://dx.doi.org/10.2196/54426 UR - http://www.ncbi.nlm.nih.gov/pubmed/38640014 ID - info:doi/10.2196/54426 ER - TY - JOUR AU - Ellis, Deborah AU - Carcone, Idalski April AU - Templin, Thomas AU - Evans, Meredyth AU - Weissberg-Benchell, Jill AU - Buggs-Saxton, Colleen AU - Boucher-Berry, Claudia AU - Miller, L. Jennifer AU - Drossos, Tina AU - Dekelbab, Bassem M. PY - 2024/4/9 TI - Moderating Effect of Depression on Glycemic Control in an eHealth Intervention Among Black Youth With Type 1 Diabetes: Findings From a Multicenter Randomized Controlled Trial JO - JMIR Diabetes SP - e55165 VL - 9 KW - adolescents KW - black KW - depression KW - eHealth KW - family intervention KW - randomized clinical trial KW - randomized controlled trial KW - T1D KW - type 1 diabetes N2 - Background: Black adolescents with type 1 diabetes (T1D) are at increased risk for suboptimal diabetes health outcomes; however, evidence-based interventions for this population are lacking. Depression affects a high percentage of youth with T1D and increases the likelihood of health problems associated with diabetes. Objective: Our aim was to test whether baseline levels of depression moderate the effects of a brief eHealth parenting intervention delivered to caregivers of young Black adolescents with T1D on youths? glycemic control. Methods: We conducted a multicenter randomized controlled trial at 7 pediatric diabetes clinics located in 2 large US cities. Participants (N=149) were allocated to either the intervention group or a standard medical care control group. Up to 3 intervention sessions were delivered on a tablet computer during diabetes clinic visits over a 12-month period. Results: In a linear mixed effects regression model, planned contrasts did not show significant reductions in hemoglobin A1c (HbA1c) for intervention adolescents compared to controls. However, adolescents with higher baseline levels of depressive symptoms who received the intervention had significantly greater improvements in HbA1c levels at 6-month follow-up (0.94%; P=.01) and 18-month follow-up (1.42%; P=.002) than those with lower levels of depression. Within the intervention group, adolescents had a statistically significant reduction in HbA1c levels from baseline at 6-month and 18-month follow-up. Conclusions: A brief, culturally tailored eHealth parenting intervention improved health outcomes among Black adolescents with T1D and depressive symptoms. Trial Registration: ClinicalTrials.gov NCT03168867; https://clinicaltrials.gov/study/NCT03168867 UR - https://diabetes.jmir.org/2024/1/e55165 UR - http://dx.doi.org/10.2196/55165 UR - http://www.ncbi.nlm.nih.gov/pubmed/38593428 ID - info:doi/10.2196/55165 ER - TY - JOUR AU - Hölgyesi, Áron AU - Luczay, Andrea AU - Tóth-Heyn, Péter AU - Muzslay, Eszter AU - Világos, Eszter AU - Szabó, J. Attila AU - Baji, Petra AU - Kovács, Levente AU - Gulácsi, László AU - Zrubka, Zsombor AU - Péntek, Márta PY - 2024/3/20 TI - The Impact of Parental Electronic Health Literacy on Disease Management and Outcomes in Pediatric Type 1 Diabetes Mellitus: Cross-Sectional Clinical Study JO - JMIR Pediatr Parent SP - e54807 VL - 7 KW - electronic health literacy KW - parents KW - caregivers KW - diabetes mellitus KW - child N2 - Background: Despite the growing uptake of smart technologies in pediatric type 1 diabetes mellitus (T1DM) care, little is known about caregiving parents? skills to deal with electronic health information sources. Objective: We aimed to assess the electronic health literacy of parents caring for children with T1DM and investigate its associations with disease management and children?s outcomes. Methods: A cross-sectional survey was performed involving 150 parent-child (8-14 years old with T1DM) dyads in a university pediatric diabetology center. Parents? electronic health literacy (eHealth Literacy Scale [eHEALS]), general health literacy (Chew questionnaire and Newest Vital Sign [NVS]), and attitudes toward T1DM care (Parental Self-Efficacy Scale for Diabetes Management [PSESDM] and Hypoglycemia Fear Survey [HFS]) were investigated. Children?s treatment, HbA1c level, and quality of life (Pediatric Quality of Life Inventory Diabetes Module [PedsQL Diab] and EQ-5D-Y-3L) were assessed. Multiple linear regression analysis was performed to investigate the determining factors of 6-month average HbA1c. Results: Of the 150 children, 38 (25.3%) used a pen, 55 (36.7%) used a pen plus a sensor, 6 (4.0%) used an insulin pump, and 51 (34.0%) used an insulin pump plus a sensor. Parents? average eHEALS score (mean 31.2, SD 4.9) differed significantly by educational level (P=.04) and the children?s treatment (P=.005), being the highest in the pump + sensor subgroup. The eHEALS score showed significant Pearson correlations with the Chew score (r=?0.45; P<.001), NVS score (r=0.25; P=.002), and PSESDM score (r=0.35; P<.001) but not with the children?s HbA1c (r=?0.143; P=.08), PedsQL Diab (r=?0.0002; P>.99), and EQ-5D-Y-3L outcomes (r=?0.13; P=.12). Regression analysis revealed significant associations of the child?s HbA1c level with sex (?=0.58; P=.008), treatment modality (pen + sensor: ?=?0.66; P=.03; pump + sensor: ?=?0.93; P=.007), and parents? self-efficacy (PSESDM; ?=?0.08; P=.001). Conclusions: Significantly higher parental electronic health literacy was found in T1DM children using a glucose sensor. The electronic health literacy level was associated with parents? diabetes management attitude but not with the child?s glycemic control. Studies further investigating the role of parental electronic health literacy in T1DM children managed at different levels of care and the local context are encouraged. UR - https://pediatrics.jmir.org/2024/1/e54807 UR - http://dx.doi.org/10.2196/54807 UR - http://www.ncbi.nlm.nih.gov/pubmed/38506893 ID - info:doi/10.2196/54807 ER - TY - JOUR AU - Burns, K. Sarah AU - Krishnamurti, Tamar AU - Doan, T. Tran AU - Hanmer, Janel AU - Hoberman, Alejandro AU - Kahn, M. Jeremy AU - Schweiberger, Kelsey AU - Ray, N. Kristin PY - 2024/1/16 TI - Parent Perceptions of Telemedicine for Acute Pediatric Respiratory Tract Infections: Sequential Mixed Methods Study JO - JMIR Pediatr Parent SP - e49170 VL - 7 KW - telemedicine KW - telehealth KW - acute care KW - acute KW - pediatrics KW - pediatric KW - family medicine KW - family-centered KW - child KW - children KW - parent KW - parents KW - attitude KW - attitudes KW - opinion KW - perception KW - perceptions KW - perspective KW - perspectives KW - expectation KW - expectations N2 - Background: Since 2020, parents have had increasing opportunities to use telemedicine for their children, but how parents decide whether to use telemedicine for acute pediatric care relative to alternative sites of care is not clear. One of the most common reasons parents seek acute care for their children is for acute respiratory tract infections (ARTIs). Objective: This study aims to examine parental expectations of care via telemedicine for pediatric ARTIs, contrasting expectations of care delivered via primary care telemedicine and direct-to-consumer (DTC) telemedicine. Methods: We performed a sequential mixed methods analysis to examine how parents assess telemedicine for their children?s acute care. We used ARTIs as a case study for examining parent perceptions of telemedicine. First, we analyzed semistructured interviews focused on parent responses about the use of telemedicine. Each factor discussed by parents was coded to reflect whether parents indicated it incentivized or disincentivized their preferences for telemedicine versus in-person care. Results were organized by a 7-dimension framework of parental health care seeking that was generated previously, which included dimensions related to care sites (expected access, affordability, clinical quality, and site quality) and dimensions related to child or family factors (perceived illness severity, perceived child susceptibility, and parent self-efficacy). Second, we analyzed responses to a national survey, which inquired about parental expectations of primary care telemedicine, commercial DTC telemedicine, and 3 in-person sites of care (primary care, urgent care, and emergency department) across 21 factors identified through prior qualitative work. To assess whether parents had different expectations of different telemedicine models, we compared survey responses for primary care telemedicine and commercial DTC telemedicine using weighted logistic regression. Results: Interview participants (n=40) described factors affecting their perceptions of telemedicine as a care modality for pediatric ARTIs. Generally, factors aligned with access and affordability (eg, decreased wait time and lower out-of-pocket cost) were discussed as potential incentives for telemedicine use, while factors aligned with perceived illness severity, child susceptibility, and clinician quality (eg, trustworthiness) were discussed as potential disincentives for telemedicine use. In survey responses (n=1206), primary care and commercial DTC telemedicine were rated similarly on items related to expected accessibility and affordability. In contrast, on items related to expected quality of care, primary care telemedicine was viewed similarly to in-person primary care, while commercial DTC telemedicine was rated lower. For example, 69.7% (weighted; 842/1197) of respondents anticipated their children would be comfortable and cooperative with primary care telemedicine versus 49.7% (weighted; 584/1193) with commercial DTC telemedicine (P<.001). Conclusions: In a mixed methods analysis focused on telemedicine for ARTIs, parents expressed more concerns about telemedicine quality in commercial DTC models compared with primary care?based telemedicine. These results could help health systems better design telemedicine initiatives to support family-centered care. UR - https://pediatrics.jmir.org/2024/1/e49170 UR - http://dx.doi.org/10.2196/49170 UR - http://www.ncbi.nlm.nih.gov/pubmed/38227360 ID - info:doi/10.2196/49170 ER - TY - JOUR AU - Strouf Motley, Haley AU - Kerr, Bradley AU - Sklansky, J. Daniel AU - Eickhoff, Jens AU - Moreno, A. Megan AU - Babal, C. Jessica PY - 2023/12/13 TI - Parent Perceptions of Trainees in Pediatric Care: Cross-Sectional Study JO - JMIR Form Res SP - e46631 VL - 7 KW - latent class analysis KW - medical student KW - resident KW - trainee KW - medical education KW - trust KW - comfort KW - parents KW - pediatrics KW - parent perception KW - pediatric care KW - clinical autonomy N2 - Background: Clinical experience and progressive autonomy are essential components of medical education and must be balanced with patient comfort. While previous studies have suggested that most patients accept trainee involvement in their care, few studies have focused specifically on the views of parents of pediatric patients or examined groups who may not report acceptance. Objective: This study aims to understand parental profiles of resident and medical student involvement in pediatric care and to use latent class analysis (LCA) methodology to identify classes of responses associated with parent demographic characteristics. Methods: We used data from a national cross-sectional web-based survey of 3000 parents. The survey used a 5-point Likert scale to assess 8 measures of parent perceptions of residents and medical students. We included participants who indicated prior experience with residents or medical students. We compared responses about resident involvement in pediatric care with responses about student involvement, used LCA to identify latent classes of parent responses, and compared demographic features between the latent classes. Results: Of the 3000 parents who completed the survey, 1543 met the inclusion criteria for our study. Participants reported higher mean scores for residents than for medical students for perceived quality of care, comfort with autonomously performing an examination, and comfort with autonomously giving medical advice. LCA identified 3 latent classes of parent responses: Trainee-Hesitant, Trainee-Neutral, and Trainee-Supportive. Compared with the Trainee-Supportive and Trainee-Neutral classes, the Trainee-Hesitant class had significantly more members reporting age <30 years, household income < US $50,000, no college degree, and lesser desire to receive future care at a teaching hospital (all P<.05). Conclusions: Parents may prefer greater clinical autonomy for residents than medical students. Importantly, views associated with the Trainee-Hesitant class may be held disproportionately by members of historically and currently socially marginalized demographic groups. Future studies should investigate underlying reasons for trainee hesitancy in these groups, including the possibility of mistrust in medicine. UR - https://formative.jmir.org/2023/1/e46631 UR - http://dx.doi.org/10.2196/46631 UR - http://www.ncbi.nlm.nih.gov/pubmed/38090789 ID - info:doi/10.2196/46631 ER - TY - JOUR AU - Pogge, Gabrielle AU - Fedele, A. David AU - Waters, A. Erika AU - Maki, Julia AU - Hunleth, M. Jean AU - Prabhakaran, Sreekala AU - Bowen, J. Deborah AU - Shepperd, A. James PY - 2023/8/2 TI - Exploring Caregiver Interest in and Preferences for Interventions for Children With Risk of Asthma Exacerbation: Web-Based Survey JO - JMIR Form Res SP - e46341 VL - 7 KW - asthma KW - children KW - caregivers KW - decision-making KW - intervention KW - asthma exacerbations N2 - Background: Maintaining control of asthma symptoms is the cornerstone of asthma treatment guidelines in the United States. However, suboptimal asthma control and asthma exacerbations among young people are common and are associated with many negative outcomes. Interventions to improve asthma control are needed. For such interventions to be successful, it is necessary to understand the types of interventions that are appealing to caregivers of children with different levels of risk of exacerbation. Objective: This study aimed to evaluate whether caregivers of children with high (vs low) risk of asthma exacerbation show different levels of interest in and preferences for potential intervention programs and delivery methods. Methods: We contracted with Ipsos to administer a web-based survey to caregivers of children with asthma who were residing in the United States. Caregivers (N=394) reported their interest (1=not at all; 3=a lot) in 9 possible intervention programs and 8 possible intervention delivery methods. Caregivers also indicated their preferences by selecting the 3 intervention programs and 3 delivery methods that ?most? interested them. Finally, caregivers completed 2 open-ended questions asking what other resources might be useful for managing their children?s asthma. We classified children as having a high risk of exacerbation if they had an exacerbation in the past 3 months (n=116) and a low risk of exacerbation if otherwise (n=278). Results: Caregivers reported higher levels of interest in all intervention programs and delivery methods if they cared for a child with a high risk rather than a low risk of exacerbation. However, regardless of the child?s risk status, caregivers expressed the highest levels of interest in programs to increase their child?s self-management skills, to help pay for asthma care, and to work with the school to manage asthma. Caregivers expressed the highest levels of interest in delivery methods that maintained personal control over accessing information (websites, videos, printed materials, and smartphone apps). Caregivers? preferences were consistent with their interests; programs and delivery methods that were rated as high in interest were also selected as one of the 3 that ?most? interested them. Although most caregivers did not provide additional suggestions for the open-ended questions, a few caregivers suggested intervention programs and delivery methods that we had not included (eg, education about avoiding triggers and medication reminders). Conclusions: Similar interests and preferences among caregivers of children with high and low risk of exacerbation suggest a broad need for support in managing childhood asthma. Providers could help caregivers by directing them toward resources that make asthma care more affordable and by helping their children with asthma self-management. Interventions that accommodate caregivers? concerns about having personal control over access to asthma information are likely to be more successful than interventions that do not. UR - https://formative.jmir.org/2023/1/e46341 UR - http://dx.doi.org/10.2196/46341 UR - http://www.ncbi.nlm.nih.gov/pubmed/37531188 ID - info:doi/10.2196/46341 ER - TY - JOUR AU - van der Kamp, R. Mattiènne AU - Hengeveld, S. Vera AU - Brusse-Keizer, J. Marjolein G. AU - Thio, J. Boony AU - Tabak, Monique PY - 2023/7/21 TI - eHealth Technologies for Monitoring Pediatric Asthma at Home: Scoping Review JO - J Med Internet Res SP - e45896 VL - 25 KW - telemedicine KW - wearable electronic devices KW - asthma KW - child KW - pediatrics KW - internet-based interventions KW - monitoring KW - computers KW - hand-held device KW - medication KW - spirometry N2 - Background: eHealth monitoring technologies offer opportunities to more objectively assess symptoms when they appear in daily life. Asthma is the most common chronic disease in childhood with an episodic course, requiring close follow-up of pediatric asthma control to identify disease deterioration, prevent exacerbations, and enhance quality of life. eHealth technologies in pediatric asthma care show promising results regarding feasibility, acceptability, and asthma-related health outcomes. However, broad systematic evaluations of eHealth technologies in pediatric asthma are lacking. Objective: The objective of this scoping review was to identify the types and applications of eHealth technologies for monitoring and treatment in pediatric asthma and explore which monitoring domains show the most relevance or potential for future research. Methods: A scoping review was conducted using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. A systematic and comprehensive search was performed on English papers that investigated the development, validation, or application of eHealth technologies for home monitoring or treatment of pediatric asthma in the following databases: PubMed, Cochrane Library, IEEE, Scopus, CINAHL, PsycINFO, and ACM Digital Library. Two authors independently assessed eligibility and extracted data. Data were presented by a descriptive analysis of characteristics and a narrative report for each eHealth domain. Results: The review included 370 manuscripts. The following 10 monitoring domains were identified: air quality, airway inflammation markers, lung function, physical activity, sleep, audiovisual, other physiological measurements, questionnaires, medication monitoring, and digital environment (ie, digital platforms, applications, websites, and software tools to monitor or support monitoring). Rising numbers of studies were seen, and the numbers accelerated in the last few years throughout most domains, especially medication monitoring and digital environment. Limited studies (35/370, 9.5%) of multiparameter monitoring strategies, using three or more domains, were found. The number of monitoring validation studies remained stable, while development and intervention studies increased. Intervention outcomes seemed to indicate the noninferiority and potential superiority of eHealth monitoring in pediatric asthma. Conclusions: This systematic scoping review provides a unique overview of eHealth pediatric asthma monitoring studies, and it revealed that eHealth research takes place throughout different monitoring domains using different approaches. The outcomes of the review showed the potency for efficacy of most monitoring domains (especially the domains of medication monitoring, lung function, and digital environment). Future studies could focus on modifying potentially relevant hospital-based diagnostics for the home setting to investigate potential beneficial effects and focus on combining home-monitoring domains to facilitate multiparameter decision-making and personalized clinical decision support. UR - https://www.jmir.org/2023/1/e45896 UR - http://dx.doi.org/10.2196/45896 UR - http://www.ncbi.nlm.nih.gov/pubmed/37477966 ID - info:doi/10.2196/45896 ER - TY - JOUR AU - Abdulhussein, S. Fatema AU - Pinkney, Susan AU - Görges, Matthias AU - van Rooij, Tibor AU - Amed, Shazhan PY - 2023/7/13 TI - Designing a Collaborative Patient-Centered Digital Health Platform for Pediatric Diabetes Care in British Columbia: Formative Needs Assessment by Caregivers of Children and Youths Living With Type 1 Diabetes and Health Care Providers JO - JMIR Pediatr Parent SP - e46432 VL - 6 KW - application design KW - challenge KW - child KW - design KW - development KW - diabetes KW - diabetic KW - digital health KW - digital solution KW - engagement KW - feature KW - needs assessment KW - patient engagement KW - patient need KW - pediatric KW - perception KW - privacy KW - secure KW - security KW - trust KW - Type 1 diabetes KW - Type 1 KW - usage KW - user centered KW - user need KW - youth N2 - Background: Digital health apps are becoming increasingly available for people living with diabetes, yet data silos continue to exist. This requires health care providers (HCPs) and patients to use multiple digital platforms to access health data. Objective: In this study, we gathered the perspectives of caregivers of children and youths living with type 1 diabetes (T1D) and pediatric diabetes HCPs in the user-centered design of TrustSphere, a secure, single-point-of-access, integrative digital health platform. Methods: We distributed web-based surveys to caregivers of children and youths living with T1D and pediatric diabetes HCPs in British Columbia, Canada. Surveys were designed using ordinal scales and had free-text questions. Survey items assessed key challenges, perceptions about digital trust and security, and potential desirable features for a digital diabetes platform. Results: Similar challenges were identified between caregivers of children and youths living with T1D (n=99) and HCPs (n=49), including access to mental health support, integration of diabetes technology and device data, and the ability to collaborate on care plans with their diabetes team. Caregivers and HCPs identified potential features that directly addressed their challenges, such as more accessible diabetes data and diabetes care plans. Caregivers had more trust in sharing their child?s data digitally than HCPs. Most caregivers and HCPs stated that an integrative platform for T1D would support collaborative patient care. Conclusions: Caregiver and HCP perspectives gathered in this study will inform the early prototype of an integrative digital health platform. This prototype will be presented and iterated upon through a series of usability testing sessions with caregivers and HCPs to ensure the platform meets end users? needs. UR - https://pediatrics.jmir.org/2023/1/e46432 UR - http://dx.doi.org/10.2196/46432 UR - http://www.ncbi.nlm.nih.gov/pubmed/37440296 ID - info:doi/10.2196/46432 ER - TY - JOUR AU - van der Kamp, Mattienne AU - Hengeveld, Vera AU - Willard, Nico AU - Thio, Boony AU - de Graaf, Pascal AU - Geven, Inge AU - Tabak, Monique PY - 2023/7/3 TI - Remote Patient Monitoring and Teleconsultation to Improve Health Outcomes and Reduce Health Care Utilization of Pediatric Asthma (ALPACA Study): Protocol for a Randomized Controlled Effectiveness Trial JO - JMIR Res Protoc SP - e45585 VL - 12 KW - asthma KW - children KW - telemedicine KW - home monitoring KW - randomized controlled trial KW - health care utilization KW - health care costs KW - protocol KW - spirometry KW - adherence KW - nebulizer KW - pediatric care KW - utilization KW - remote monitoring KW - asthma care N2 - Background: Childhood asthma is imposing a great financial burden on the pediatric health care system. Asthma costs are directly related to the level of asthma control. A substantial part of these costs may be preventable by the timely and adequate assessment of asthma deterioration in daily life and proper asthma management. The use of eHealth technology may assist such timely and targeted medical anticipation. Objective: This paper describes the Ambulatory Pediatric Asthma Care (ALPACA) study protocol to investigate the effectiveness of an eHealth intervention consisting of remote patient monitoring and teleconsultation integrated into the daily clinical care of pediatric patients with asthma. This intervention aims to reduce health care utilization and costs and improve health outcomes compared to a control group that receives standard care. In addition, this study aims to improve future eHealth pediatric asthma care by gaining insights from home-monitoring data. Methods: This study is a prospective randomized controlled effectiveness trial. A total of 40 participants will be randomized to either 3 months of eHealth care (intervention group) or standard care (control group). The eHealth intervention consists of remote patient monitoring (spirometry, pulse oximetry, electronic medication adherence tracking, and asthma control questionnaire) and web-based teleconsultation (video sharing, messages). All participants will have a 3-month follow-up with standard care to evaluate whether the possible effects of eHealth care are longer lasting. During the entire study and follow-up period, all participants will use blinded observational home monitoring (sleep, cough/wheeze sounds, air quality in bedroom) as well. Results: This study was approved by the Medical Research Ethics Committees United. Enrollment began in February 2023, and the results of this study are expected to be submitted for publication in July 2024. Conclusions: This study will contribute to the existing knowledge on the effectiveness of eHealth interventions that combine remote patient monitoring and teleconsultation for health care utilization, costs, and health outcomes. Furthermore, the observational home-monitoring data can contribute to improved identification of early signs of asthma deterioration in pediatric patients. Researchers and technology developers could use this study to guide and improve eHealth development, while health care professionals, health care institutions, and policy makers may employ our results to make informed decisions to steer toward high-quality, efficient pediatric asthma care. Trial Registration: ClinicalTrials.gov NCT05517096; https://clinicaltrials.gov/ct2/show/NCT05517096 International Registered Report Identifier (IRRID): PRR1-10.2196/45585 UR - https://www.researchprotocols.org/2023/1/e45585 UR - http://dx.doi.org/10.2196/45585 UR - http://www.ncbi.nlm.nih.gov/pubmed/37399066 ID - info:doi/10.2196/45585 ER - TY - JOUR AU - Canter, S. Kimberly AU - Ritterband, Lee AU - Freyer, R. David AU - Askins, A. Martha AU - Bava, Laura AU - Loucas, Caitlyn AU - Arasteh, Kamyar AU - You, Wen AU - Kazak, E. Anne PY - 2023/6/2 TI - The Electronic Surviving Cancer Competently Intervention Program?a Psychosocial Digital Health Intervention for English- and Spanish-Speaking Parents of Children With Cancer: Protocol for Randomized Controlled Trial JO - JMIR Res Protoc SP - e46339 VL - 12 KW - pediatric cancer KW - digital health KW - parents KW - caregivers KW - psychosocial intervention KW - family systems KW - cultural and linguistic adaptation N2 - Background: The psychosocial needs and risks of children with cancer and their families are well-documented including increased risk of parental distress, posttraumatic stress, and anxiety. There is a critical need to provide evidence-based psychosocial care to parents and caregivers of children with cancer. Digital health interventions are important to address many barriers to in-person intervention delivery but are not widely used in pediatric psychosocial cancer care. The COVID-19 pandemic has reinforced the need for flexible, acceptable, and accessible psychosocial digital health interventions. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is an innovative digital health intervention for parents and caregivers of children with cancer, delivered through a combination of self-guided web-based content and supplemented by 3 telehealth follow-up sessions with a trained telehealth guide. A Spanish language adaptation of eSCCIP, El Programa Electronico de Intervencion para Superar Cancer Competentemente (eSCCIP-SP), has been developed. The self-guided web-based cores of eSCCIP/eSCCIP-SP are a mix of didactic video content, multifamily video discussion groups featuring parents of children with cancer, and hands-on web-based activities. Objective: The objective of this study is to test eSCCIP/eSCCIP-SP in a multisite randomized controlled trial, compared to an internet-based education control condition consisting of information specifically focused on concerns relevant to parents and caregivers of children with cancer. Methods: Using a randomized controlled clinical trial design, 350 eligible parents and caregivers of children with cancer will be randomly assigned to the intervention (eSCCIP/eSCCIP-SP) or an education control condition. Data will be collected at 3 time points: preintervention (prior to randomization), immediately post intervention (after 6 weeks), and at a 3-month follow-up (from baseline). Participants randomized to either condition will receive study material (eSCCIP/eSCCIP-SP intervention or education control website) in English or Spanish, based on the primary language spoken in the home and participant preference. Results: The primary study end point is a reduction in acute distress from baseline to postintervention, with secondary end points focused on reductions in symptoms of posttraumatic stress and anxiety, and improvements in coping self-efficacy and cognitive coping. An additional exploratory aim will be focused on implementation strategies and potential costs and cost-savings of eSCCIP/eSCCIP-SP, laying the groundwork for future trials focused on dissemination and implementation, stepped-care models, and intervention refinement. Conclusions: This trial will provide necessary data to evaluate the efficacy of eSCCIP/eSCCIP-SP. This intervention has the potential to be an easily scalable and highly impactful psychosocial treatment option for parents and caregivers of children with cancer. Trial Registration: ClinicalTrials.gov NCT05294302; https://clinicaltrials.gov/ct2/show/NCT05294302 International Registered Report Identifier (IRRID): PRR1-10.2196/46339 UR - https://www.researchprotocols.org/2023/1/e46339 UR - http://dx.doi.org/10.2196/46339 UR - http://www.ncbi.nlm.nih.gov/pubmed/37267038 ID - info:doi/10.2196/46339 ER - TY - JOUR AU - Hjorth-Johansen, Elin AU - Børøsund, Elin AU - Martinsen Østen, Ingeborg AU - Holmstrøm, Henrik AU - Moen, Anne PY - 2023/4/5 TI - Acceptability and Initial Adoption of the Heart Observation App for Infants With Congenital Heart Disease: Qualitative Study JO - JMIR Form Res SP - e45920 VL - 7 KW - congenital heart disease KW - readiness for discharge KW - mobile app KW - follow-up, health services KW - mHealth N2 - Background: Approximately 1% of all infants are born with a congenital heart disease (CHD). Internationally CHD remains a major cause of infant death, some of which occur unexpectedly after a gradual deterioration at home. Many parents find it difficult to recognize worsening of symptoms. Objective: This study aims to report the acceptability and initial adoption of a mobile app, the Heart Observation app (HOBS), aiming to support parents? understanding and management of their child?s condition and to increase quality in follow-up from health care professionals in complex health care services in Norway. Methods: A total of 9 families were interviewed on discharge from the neonatal intensive care unit and after 1 month at home. The infant?s primary nurse, community nurse, and cardiologist were also interviewed regarding their experiences about collaboration with the family. The interviews were analyzed inductively with thematic content analysis. Results: The analysis generated 4 main themes related to acceptability and adoption: (1) Individualize Initial Support, (2) Developing Confidence and Coping, (3) Normalize When Appropriate, and (4) Implementation in a Complex Service Pathway. The receptivity of parents to learn and attend in the intervention differs according to their present situation. Health care professionals emphasized the importance of adapting the introduction and guidance to parents? receptivity to ensure comprehension, self-efficacy, and thereby acceptance before discharge (Individualize Initial Support). Parents perceived that HOBS served them well and nurtured confidence by teaching them what to be aware of. Health care professionals reported most parents as confident and informed. This potential effect increased the possibility of adoption (Developing Confidence and Coping). Parents expressed that HOBS was not an ?everyday app? and wanted to normalize everyday life when appropriate. Health care professionals suggested differentiating use according to severity and reducing assessments after recovery to adapt the burden of assessments when appropriate (Normalize When Appropriate). Health care professionals? attitude to implement HOBS in their services was positive. They perceived HOBS as useful to systemize guidance, to enhance communication regarding an infant?s condition, and to increase understanding of heart defects in health care professionals with sparse experience (Implementation in a Complex Service Pathway). Conclusions: This feasibility study shows that both parents and health care professionals found HOBS as a positive addition to the health care system and follow-up. HOBS was accepted and potentially useful, but health care professionals should guide parents initially to ensure comprehension and adapt timing to parents? receptivity. By doing so, parents may be confident to know what to look for regarding their child?s health and cope at home. Differentiating between various diagnoses and severity is important to support normalization when appropriate. Further controlled studies are needed to assess adoption, usefulness, and benefits in the health care system. UR - https://formative.jmir.org/2023/1/e45920 UR - http://dx.doi.org/10.2196/45920 UR - http://www.ncbi.nlm.nih.gov/pubmed/37018028 ID - info:doi/10.2196/45920 ER - TY - JOUR AU - Alcón Nájera, Sara AU - González-Gil, Teresa Maria PY - 2023/3/22 TI - Parent Experiences of Child Loss and End-of-Life Care in a Pediatric Intensive Care Unit: Protocol for a Qualitative Study JO - JMIR Res Protoc SP - e43756 VL - 12 KW - hospice and palliative care nursing KW - intensive care units KW - pediatric KW - patient-centered care KW - family nursing KW - death KW - qualitative research N2 - Background: Death of a child in the pediatric intensive care unit is a rare event that can occur after failed cardiopulmonary resuscitation efforts, after a brain death diagnosis, or after a decision to limit therapeutic efforts. Nevertheless, even in the case of children with terminal and progressive illnesses, death is a crisis that comes as a surprise to parents and is perceived as unexpected. In the final stage of a child?s life, health care staff play a key role in sharing feelings and experiences with the family and in supporting them throughout the process in order to facilitate the grieving process. Objective: The aim of this study is to explore the experiences of parents whose children have died in a pediatric intensive care unit. Methods: To address the study aims, a qualitative phenomenological study based on the van Manen proposal will be carried out. The study will be conducted in the pediatric intensive care unit of a tertiary care hospital. The study population will be parents or guardians (older than 18 years) of children who have died in the unit at least 6 months prior to potential participation in the study. Purposive sampling will be used to ensure sample diversity in relation to experiential variables. Families will be initially contacted by letter sent alongside the standard letter of condolences from the hospital, and then recruited in a subsequent telephone call. The sample size will be determined by data saturation. In-depth interviews will be conducted individually or in pairs. Parents will decide when, how, and where to conduct the interviews, which will be transcribed verbatim and examined using thematic discourse analysis. Results: This study was awarded a grant in December 2020 and was approved by the Medical and Health Research Ethics Committee on December 21, 2020. Data collection started in April 2021, and the results are expected to be published in 2023. Conclusions: This project is intended to maintain, strengthen, and build on a particular line of research on end-of-life care with a focus on effective coping, spiritual well-being, and the adaptive grieving process. The results will contribute to establishing action guidelines that are both based on the discourses of parents who have experienced the death of a child and geared toward high-quality end-of-life care through dignified death and adaptive grief management. International Registered Report Identifier (IRRID): DERR1-10.2196/43756 UR - https://www.researchprotocols.org/2023/1/e43756 UR - http://dx.doi.org/10.2196/43756 UR - http://www.ncbi.nlm.nih.gov/pubmed/36693628 ID - info:doi/10.2196/43756 ER - TY - JOUR AU - Ruan, Hui AU - Eungpinichpong, Wichai AU - Wu, Hua AU - Aonsri, Chanada PY - 2023/2/8 TI - Physiological and Psychological Effects of Parent-Delivered Traditional Thai Massage in Children With Autism: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e41839 VL - 12 KW - autism KW - massage KW - randomized controlled trial KW - protocol N2 - Background: Although many autistic children receive massage as a complementary therapy, it is not included in evidence-based practice for autism because evidence of its efficacy is lacking. Further, prior studies have failed to identify objective indicators of core symptoms or elucidate their mechanisms. Objective: We developed a parent-delivered traditional Thai massage (TTM) intervention for children with autism, aiming to experimentally determine whether children with autism truly experience positive effects from parent-delivered TTM and determine possible mechanisms of the observed effects. Methods: A 2-armed, parallel randomized controlled trial was conducted between February 2022 and June 2022. Forty-eight children with autism (aged 7-12 years) were recruited from the Hainan Special Education School and randomly assigned to either a parental TTM or control group at a ratio of 1:1 based on random numbers generated with Online Research Randomizer. The generated sequences were concealed in an opaque envelope. Individuals in the parental TTM group received 16 parent-delivered TTM sessions over 8 weeks at the school?s health room after school, and the control group maintained a normal daily routine. Outcomes were assessed on admission, after 8 weeks, and at a 2-month follow-up and included the effect of massage treatment on autism symptoms, measured with the Autism Treatment Evaluation Checklist score (evaluated by parents and a blinded teacher), physiological parameters (ie, heart rate variability and gait), and the Parenting Stress Index, Fourth Edition?Short Form. Results: We finished all data collection on June 20, 2022. Data analysis will be started, and we expect to publish results in 2023. Conclusions: This study will provide further evidence for massage treatment of autism and provide support for family-based care. Trial Registration: Chinese Clinical Trial Registry ChiCTR2100051355; https://tinyurl.com/3dwjxsw5 International Registered Report Identifier (IRRID): DERR1-10.2196/41839 UR - https://www.researchprotocols.org/2023/1/e41839 UR - http://dx.doi.org/10.2196/41839 UR - http://www.ncbi.nlm.nih.gov/pubmed/36753320 ID - info:doi/10.2196/41839 ER - TY - JOUR AU - Tenfelde, Kim AU - Antheunis, Marjolijn AU - Krahmer, Emiel AU - Bunt, Erik Jan PY - 2023/2/7 TI - Using Digital Communication Technology to Improve Neonatal Care: Two-Part Explorative Needs Assessment JO - JMIR Pediatr Parent SP - e38435 VL - 6 KW - mobile health KW - mHealth KW - physician-patient communication KW - questions asking KW - needs assessment KW - explorative KW - mobile phone N2 - Background: The birth of a premature infant and subsequent hospitalization are stressful events for parents. Therefore, accurate and easy-to-understand communication between parents and health care professionals is crucial during this period. Mobile health (mHealth) technologies have the potential to improve communication with parents at any time and place and possibly reduce their stress. Objective: We aimed to conduct a 2-part explorative needs assessment in which the interaction between the pediatrician and parents was examined along with their digital communication technology needs and interest in an mHealth app with the aim of improving interpersonal communication and information exchange. Methods: Overall, 19 consultations between parents of preterm infants and pediatricians were observed to determine which themes are discussed the most and the number of questions asked. Afterward, the parents and the pediatrician were interviewed to evaluate the process of communication and gauge their ideas about a neonatal communication mHealth app. Results: The observations revealed the following most prevalent themes: breastfeeding, criteria for discharge, medication, and parents? personal life. Interview data showed that the parents were satisfied with the communication with their pediatrician. Furthermore, both parents and pediatricians expected that a neonatal mHealth app could further improve the communication process and the hospital stay. Parents valued app features such as asking questions, growth graphs, a diary function, hospital-specific information, and medical rounds reports. Conclusions: Both parents of hospitalized preterm infants and pediatricians expect that the hypothetical mHealth app has the potential to cater to the most prevalent themes and improve communication and information exchange. Recommendations for developing such an app and its possible features are also discussed. On the basis of these promising results, it is suggested to further develop and study the effects of the mHealth app together with all stakeholders. UR - https://pediatrics.jmir.org/2023/1/e38435 UR - http://dx.doi.org/10.2196/38435 UR - http://www.ncbi.nlm.nih.gov/pubmed/36749606 ID - info:doi/10.2196/38435 ER - TY - JOUR AU - Holtz, Bree AU - Mitchell, Katharine PY - 2023/2/3 TI - Supporting Parents of Children With Type 1 Diabetes: Experiment Comparing Message and Delivery Types JO - JMIR Form Res SP - e41193 VL - 7 KW - caregiving KW - children KW - development KW - diabetes KW - diagnosis KW - effectiveness KW - email KW - intervention KW - management KW - social support KW - stress KW - support KW - type 1 diabetes N2 - Background: Type 1 diabetes (T1D) is a chronic condition that typically affects young age group people and is estimated to afflict approximately 154,000 people younger than 20 years in the United States. Since T1D typically impacts children, parents must play an active role in helping their child manage the condition. This creates a substantial burden and responsibility for the parents. Objective: This pilot study sought to find ways to help parents with children with T1D in coping with stresses related to managing and monitoring their child?s disease by providing informational support, either about parenting a child with T1D or general parenting messages through different channels. Methods: Parents (N=120) of children with T1D were recruited through an email listserv through local T1D Facebook groups. A total of 102 participants were included in the analysis. We conducted a 2×2 experimental study over an 8-week period to test 2 types of messages (diabetes specific vs general parenting) and the medium in which the messages were delivered (Facebook vs SMS text message). Diabetes behavior, informational support, emotional support, and quality of life were the main outcomes of interest. Results: The results suggested that the participants in the diabetes message groups showed improvement in diabetes behaviors (F1,99=3.69; P=.05) and were more satisfied with the intervention (F3,98=4.59; P=.005). There were no differences between message and medium groups on informational support, emotional support, or quality of life. Conclusions: The results of this study demonstrate that the medium?Facebook or SMS text messaging?does not matter for parents? perceptions of social support or quality of life. The diabetes message group reported higher levels of disease management. Finally, the groups with the diabetes support messages were more satisfied than those who received general parenting messages. The findings provide starting guidance for the development of social support interventions for this population. UR - https://formative.jmir.org/2023/1/e41193 UR - http://dx.doi.org/10.2196/41193 UR - http://www.ncbi.nlm.nih.gov/pubmed/36735338 ID - info:doi/10.2196/41193 ER - TY - JOUR AU - McCall, P. Madison AU - Hineline, T. Megan AU - Anton, T. Margaret AU - Highlander, April AU - Jones, J. Deborah PY - 2022/11/30 TI - The Socioeconomic Indicators Linked to Parent Health-Related Technology Use: Cross-sectional Survey JO - J Med Internet Res SP - e37455 VL - 24 IS - 11 KW - parenting KW - child KW - health behavior KW - information seeking KW - health-related technology use KW - health information KW - digital health KW - mobile health KW - socioeconomic status KW - accessibility N2 - Background: Despite the prevalence of parent health information seeking on the internet and its impact on parenting behavior, there is a paucity of research on parents of young children (ages 3 to 8 years). Given the importance of this developmental period, exploring how family socioeconomic indicators linked to the digital divide and health inequities affect parent proxy- and self-seeking is critical to further understanding variability in health information seeking and associated outcomes. Objective: This study aimed to explore parental health-related technology use (HTU), the process by which parents engage in support, advice, and information-seeking behavior related to their (self-seeking) and their children?s (proxy seeking) health across a range of hardware devices (eg, tablet, wearable, smartphone, laptop, and desktop computer) and sources (eg, search engines, mobile applications, social media, and other digital media). Methods: A cross-sectional study including 313 parents and guardians of children ages 3 to 8 years recruited through Amazon Mechanical Turk (MTurk) was conducted. Parents were asked to complete a self-administered questionnaire on a broad range of parenting and parent-related constructs, including sociodemographic information, technology device ownership, and engagement in and use, features, and perceptions of HTU. Descriptive and bivariate analyses (chi-square tests) were performed to identify patterns and investigate associations between family socioeconomic indicators and parent HTU. Results: The overwhelming majority (301/313, 96%) of parents of young children reported engaging in HTU, of which 99% (300/301) reported using search engines (eg, Google), followed by social media (62%, 188/301), other forms of digital media (eg, podcasts; 145/301, 48%), and mobile applications (114/301, 38%). Parents who engaged in HTU reported seeking information about their child?s behavior and discipline practices (260/313, 83%), mental or physical health (181/313, 58%), and academic performance (142/313, 45%). Additionally, nearly half (134/313, 43%) of parents reported searching for advice on managing their stress. Among parents who reported using each source, an overwhelming majority (280/300, 93%) indicated that search engines were a helpful online source for proxy- and self-seeking, followed by social media (89%, 167/188), other digital media (120/145, 83%), and mobile apps (87/114, 76%). Among parents who reported using any technology source, approximately one-fifth reported that technology sources were most comfortable (61/311, 20%), most understanding (69/311, 22%), and most influential toward behavior change (73/312, 23%) compared to traditional sources of health information?seeking, including mental health professionals, other health care professionals, school professionals, community leaders, friends, and family members. Indicators of family socioeconomic status were differentially associated with frequency and perceptions of and search content associated with parent HTU across technology sources. Conclusions: The findings of this study underscore critical considerations in the design and dissemination of digital resources, programs, and interventions targeting parent and child health, especially for families in traditionally underserved communities. UR - https://www.jmir.org/2022/11/e37455 UR - http://dx.doi.org/10.2196/37455 UR - http://www.ncbi.nlm.nih.gov/pubmed/36449346 ID - info:doi/10.2196/37455 ER - TY - JOUR AU - Lou, M. Terry AU - Zhang, L. Kenneth AU - Slesinger, C. Noël AU - Taddeo, Michelle AU - Serrano, Eloisa AU - Begolka, Smith Wendy AU - Capozza, Korey AU - Paller, S. Amy AU - Griffith, W. James AU - Fishbein, B. Anna PY - 2022/9/14 TI - Positive Psychology Themes in Interviews of Children With Atopic Dermatitis: Qualitative Study JO - JMIR Pediatr Parent SP - e38725 VL - 5 IS - 3 KW - positive psychology KW - PERMA KW - positive emotion, engagement, relationships, meaning, and accomplishment KW - atopic dermatitis KW - pediatric KW - dermatology KW - children N2 - Background: Atopic dermatitis is a pruritic chronic condition associated with significant sleep disturbance, inattention, and sometimes behavioral problems. Enhancing resiliency in children with atopic dermatitis may promote coping strategies to improve quality of life. Positive psychology is one strategy that can be used to strengthen resiliency. Objective: Our objective was to identify positive psychology concepts mentioned by children with atopic dermatitis and their parent to inform strategies to strengthen resiliency in children with atopic dermatitis. Methods: A total of 20 patient-parent dyads were interviewed to share their experience with atopic dermatitis to help develop a novel psychologic intervention for atopic dermatitis. Patients were 8 to 17 years old and diagnosed with atopic dermatitis. Trained coders analyzed transcripts using a coding dictionary developed based on Seligman?s PERMA (positive emotion, engagement, relationships, meaning, and accomplishment) model of positive psychology. The frequency of unprompted mentions of PERMA themes and relevant quotations was captured. Transcripts were also separately coded for resiliency, which is the ultimate goal of PERMA. Results: Positive psychology concepts were mentioned by 100% (20/20) of children and 95% (19/20) of parents. Engagement and relationships, both negative and positive aspects, were the most common unprompted PERMA themes mentioned by children (14/20, 70%) and parents (13/20, 65%). Emotion elicited the most negative comments from children (19/20, 95%) and parents (17/20, 85%). When analyzed for resiliency, 8 participants were identified with at least one resiliency code. On average, participants with a resiliency code mentioned PERMA concepts 9.1 (SD 4.7) times compared to those who mentioned none (mean 5.9, SD 4.6) (P=.14). When participants were stratified by disease severity, on average, more positive psychology concepts were mentioned by patients with mild atopic dermatitis (mean 13, SD 3.0) than those with moderate symptoms (mean 6.2, SD 4.9) or severe symptoms (mean 6.1, SD 4.0) (P=.03). Conclusions: Among PERMA themes, engagement and relationships are the two most commonly mentioned categories for children with atopic dermatitis. Strategies targeting PERMA such as affirmations and positive reframing may improve psychosocial well-being and resiliency in pediatric atopic dermatitis. Future directions will look at incorporating ?positive medicine? into atopic dermatitis treatment to not only relieve symptoms but also strengthen positive aspects of life. UR - https://pediatrics.jmir.org/2022/3/e38725 UR - http://dx.doi.org/10.2196/38725 UR - http://www.ncbi.nlm.nih.gov/pubmed/36103242 ID - info:doi/10.2196/38725 ER - TY - JOUR AU - Novak-Pavlic, Monika AU - Rosenbaum, Peter AU - Gazzi Macedo, Luciana AU - Di Rezze, Briano AU - Yong, Joshua AU - Noori, Atefeh AU - Hughes, Debra PY - 2022/7/28 TI - Effectiveness of Interventions to Promote Physical, Psychological, and Socioeconomic Well-being Outcomes of Parents of Children With Neurodevelopmental Disabilities: Protocol for a Systematic Review JO - JMIR Res Protoc SP - e38686 VL - 11 IS - 7 KW - childhood disability KW - developmental disability KW - family KW - health KW - parent intervention KW - pediatric KW - children KW - parenting KW - rehabilitation KW - child development KW - health intervention KW - peer support KW - socioeconomic well-being KW - parent support KW - meta-analysis KW - quality of life N2 - Background: It is well recognized that parents of children with neurodevelopmental disabilities can experience a considerable burden of care associated with their child?s disability, which can potentially impact their functioning and quality of life. Historically, the intervention efforts in pediatric rehabilitation have focused primarily on the child?s development and well-being and much less on parental and family well-being. The impact that a child?s diagnosis might have on parents remains unclear, and it is unknown how we can best support parents on their journey of childhood disability. It is, therefore, important to synthesize the published evidence on interventions for parents of children with neurodevelopmental disabilities so that clinicians can be better informed about the ways in which families they work with can be supported. Objective: This manuscript presents the protocol for a systematic review of the effectiveness of interventions aiming to improve the physical, psychological, or socioeconomic well-being of parents of children with neurodevelopmental disabilities when compared to usual care or no care. Methods: We will systematically search 4 databases (MEDLINE, Embase, PsycINFO, and CINAHL) from the year 2000 until the search date, for randomized controlled trials that evaluated the effectiveness of interventions to improve parental physical, psychological, or socioeconomic well-being. Two authors will independently screen the titles and abstracts, which will then be followed by full-text screening. After the eligibility assessment, two reviewers will independently extract data and conduct a risk of bias assessment using the Cochrane risk-of-bias tool. We will assess the quality of evidence using the Grading of Recommendations, Assessment, Development and Evaluation approach. If the data allow, we will perform a pairwise meta-analysis or network meta-analysis. We plan to evaluate the coherence of the network with a global test by using the node-splitting method. Results: As of May 30, 2022, there have been two searches of data initiated: in September 2020 for articles published since 2000 and an updated search in January 2022 for articles published since 2020. We have screened all the titles and abstracts and performed eligibility assessment. However, the final number of references is still not available due to the additional information needed for some of the potentially eligible studies. The results from this systematic review will be published in an indexed journal within a year after this protocol is published. Conclusions: This study is expected to identify a variety of programs to address the well-being needs of parents of children with neurodevelopmental disabilities and provide directions on how parents can best be supported within health care. Such interventions might help professionals and stakeholders in creating service delivery models that can enhance parental well-being and minimize the risks to their physical, psychological, and socioeconomic functioning. Trial Registration: PROSPERO CRD42021230706; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=230706 International Registered Report Identifier (IRRID): DERR1-10.2196/38686 UR - https://www.researchprotocols.org/2022/7/e38686 UR - http://dx.doi.org/10.2196/38686 UR - http://www.ncbi.nlm.nih.gov/pubmed/35900806 ID - info:doi/10.2196/38686 ER - TY - JOUR AU - Chudleigh, Jane AU - Shakespeare, Lynette AU - Holder, Pru AU - Chinnery, Holly AU - Hack, Gemma AU - Gill, Tanya AU - Gould, Rachel AU - Southern, W. Kevin AU - Olander, K. Ellinor AU - Morris, Stephen AU - Bonham, R. James AU - Simpson, Alan AU - Moody, Louise PY - 2022/7/27 TI - Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study JO - J Particip Med SP - e33485 VL - 14 IS - 1 KW - experience-based co-design KW - neonatal screening KW - health communication KW - participatory research N2 - Background: Each year in England, almost 10,000 parents are informed of their child?s positive newborn bloodspot screening (NBS) results. This occurs approximately 2 to 8 weeks after birth depending on the condition. Communication of positive NBS results is a subtle and skillful task, demanding thought, preparation, and evidence to minimize potentially harmful negative sequelae. Evidence of variability in the content and the way the result is currently communicated has the potential to lead to increased parental anxiety and distress. Objective: This study focused on the development of co-designed interventions to improve the experiences of parents receiving positive NBS results for their children and enhance communication between health care professionals and parents. Methods: An experience-based co-design approach was used to explore experiences and co-design solutions with 17 health professionals employed in 3 National Health Service Trusts in England and 21 parents (13/21, 62% mothers and 8/21, 38% fathers) of 14 children recruited from the same 3 National Health Service Trusts. Experiences with existing services were gathered via semistructured interviews with health professionals. Filmed narrative interviews with parents were developed into a composite film. The co-design process identified priorities for improving communication of positive NBS results through separate parent and health professional feedback events followed by joint feedback events. In total, 4 interventions were then co-designed between the participants through a web-based platform. Results: Parents and health professionals provided positive feedback regarding the process of gathering experiences and identifying priorities. Themes identified from the parent interviews included impact of initial communication, parental reactions, attending the first clinic appointment, impact of health professionals? communication strategies and skills, impact of diagnosis on family and friends, improvements to the communication of positive NBS results, and parents? views on NBS. Themes identified from the health professional interviews included communication between health professionals, process of communicating with the family, parent- and family-centered care, and availability of resources and challenges to effective communication. In response to these themes, 4 interventions were co-designed: changes to the NBS card; standardized laboratory proformas; standardized communication checklists; and an email or letter for providing reliable, up-to-date, condition-specific information for parents following the communication of positive NBS results. Conclusions: Parents and health professionals were able to successfully work together to identify priorities and develop co-designed interventions to improve communication of positive NBS results to parents. The resulting co-designed interventions address communication at different stages of the communication pathway to improve the experiences of parents receiving positive NBS results for their children. International Registered Report Identifier (IRRID): RR2-10.1186/s40814-019-0487-5 UR - https://jopm.jmir.org/2022/1/e33485 UR - http://dx.doi.org/10.2196/33485 UR - http://www.ncbi.nlm.nih.gov/pubmed/35896023 ID - info:doi/10.2196/33485 ER - TY - JOUR AU - Braune, Katarina AU - Krug, Niklas AU - Knoll, Christine AU - Ballhausen, Hanne AU - Thieffry, Axel AU - Chen, Yanbing AU - O'Donnell, Shane AU - Raile, Klemens AU - Cleal, Bryan PY - 2022/7/14 TI - Emotional and Physical Health Impact in Children and Adolescents and Their Caregivers Using Open-source Automated Insulin Delivery: Qualitative Analysis of Lived Experiences JO - J Med Internet Res SP - e37120 VL - 24 IS - 7 KW - automated insulin delivery KW - closed-loop KW - do-it-yourself KW - open source KW - peer support KW - patient-reported outcomes KW - lived experiences KW - qualitative analysis KW - mobile phone N2 - Background: Given the limitations in the access and license status of commercially developed automated insulin delivery (AID) systems, open-source AID systems are becoming increasingly popular among people with diabetes, including children and adolescents. Objective: This study aimed to investigate the lived experiences and physical and emotional health implications of children and their caregivers following the initiation of open-source AID, their perceived challenges, and sources of support, which have not been explored in the existing literature. Methods: Data were collected through 2 sets of open-ended questions from a web-based multinational survey of 60 families from 16 countries. The narratives were thematically analyzed, and a coding framework was identified through iterative alignment. Results: A range of emotions and improvements in quality of life and physical health were reported, as open-source AID enabled families to shift their focus away from diabetes therapy. Caregivers were less worried about hypoglycemia at night and outside their family homes, leading to increased autonomy for the child. Simultaneously, the glycemic outcomes and sleep quality of both the children and caregivers improved. Nonetheless, the acquisition of suitable hardware and technical setup could be challenging. The #WeAreNotWaiting community was the primary source of practical and emotional support. Conclusions: Our findings show the benefits and transformative impact of open-source AID and peer support on children with diabetes and their caregivers and families, where commercial AID systems are not available or suitable. Further efforts are required to improve the effectiveness and usability and facilitate access for children with diabetes, worldwide, to benefit from this innovative treatment. International Registered Report Identifier (IRRID): RR2-10.2196/15368 UR - https://www.jmir.org/2022/7/e37120 UR - http://dx.doi.org/10.2196/37120 UR - http://www.ncbi.nlm.nih.gov/pubmed/35834298 ID - info:doi/10.2196/37120 ER - TY - JOUR AU - Bylund, L. Carma AU - Wollney, N. Easton AU - Campbell-Salome, Gemme AU - Applebaum, J. Allison AU - Paige, R. Samantha AU - DeGruccio, Kennan AU - Weiss, Elisa AU - Sae-Hau, Maria AU - Arnold, Jason AU - Durante, Domenic AU - Amin, B. Tithi AU - Hampton, N. Chelsea AU - Fisher, L. Carla PY - 2022/7/5 TI - Improving Clinical and Family Communication for Adult Child Caregivers of a Parent With a Blood Cancer: Single-Arm Pre-Post Pilot Intervention JO - JMIR Cancer SP - e38722 VL - 8 IS - 3 KW - caregiver KW - clinician-patient communication KW - healthy communication practice KW - eHealth literacy KW - family communication KW - feasibility KW - acceptability KW - oncology KW - blood cancer KW - cancer patent KW - web-based information seeking KW - health information KW - clinical communication KW - smartphone KW - mobile phone N2 - Background: Adult child caregivers of parents with cancer may face challenges when communicating with the patient and other family members, communicating during clinical interactions, and navigating web-based information seeking. Objective: We developed and pilot-tested the Healthy Communication Practice program for adult child caregivers of parents with a blood cancer, which aims to help participants learn and implement communication skills central to caregiving. We assessed the feasibility and acceptability of the training. Methods: Eligible participants completed a preprogram survey. We assessed the feasibility of participants completing the intervention in the allotted time. Participants had 2 weeks to complete the 2-part, 90-minute online program and completed a postprogram survey that included program evaluation items and the Acceptability of Intervention Measure (AIM) using a 1-5 rating scale (5=strongly agree). Results: Of 50 caregivers who initially expressed interest, 34 consented, and 30 completed the program and both surveys (88% completion rate). Caregivers had a mean age of 45.07 (SD 11.96) years and provided care for parents who had a mean age of 73.31 (SD 9.38) years. Caregivers were primarily daughters (n=22, 73%). Overall, scores on the AIM scale were high (mean 4.48, SD 0.67). Specifically, caregivers felt the content met their communication needs (mean 4.58, SD 0.62) and their own needs as a caregiver of a parent with a blood cancer (mean 4.39, SD 0.72). Conclusions: We demonstrated the feasibility and acceptability of the Healthy Communication Practice program, which aims to enhance family and clinical communication skills among caregivers of a parent with a blood cancer. Future studies will examine the efficacy of the program and its impact on both caregiver and patient communication and health outcomes. UR - https://cancer.jmir.org/2022/3/e38722 UR - http://dx.doi.org/10.2196/38722 UR - http://www.ncbi.nlm.nih.gov/pubmed/35788019 ID - info:doi/10.2196/38722 ER - TY - JOUR AU - Cederved, Catarina AU - Back, Jon AU - Ångström-Brännström, Charlotte AU - Ljungman, Gustaf AU - Engvall, Gunn PY - 2022/5/31 TI - Co-creation of a Serious Game About Radiotherapy: Participatory Action Research Study With Children Treated for Cancer JO - JMIR Hum Factors SP - e34476 VL - 9 IS - 2 KW - children KW - participatory action research KW - game design KW - radiotherapy KW - education KW - supportive care KW - oncology N2 - Background: Children with cancer who have to undergo radiotherapy can experience fear, because they have no prior knowledge of the treatment. One way of teaching children about the treatment and reducing their fear is to prepare them for it through serious games. Involvement of the end user in the design process within medicine is a way of ensuring that the product being developed will fit the intended user. Objective: The aim was to outline the contributions made by children and their parents through participatory action research when designing a serious game about radiotherapy. Methods: By means of participatory action research, children and their parents participated in the development of a serious game about radiotherapy. Nine children (7-10 years old) were included, each with an accompanying parent. A qualitative approach was used that included interviews and participant observation. Six rounds of iterative development process were used with the children and their parents. Meetings with the children were held either face-to-face or online. Each round resulted in a list of suggestions for changes to the game. A thematic analysis was performed based on the list of proposed changes, underpinned by all gathered data, to highlight how the children?s participation changed the game. Results: Two main themes were identified. The first theme was ?The children?s participation was affected by their health and treatment? and included the following subthemes: ?an opportunity to share emotions and perceptions of radiotherapy? and ?the possibility to participate was affected by the severity of the disease.? The second theme was ?participation allowed becoming an active part of game development? and included the following subthemes: ?the opportunity to express sentiments about the game,? ?the emergence of a playable game through the children?s contributions,? and ?the necessity of understanding the text.? Conclusions: The method used in this study made the children active participants, and our results suggest that this method can be used by health care researchers to cocreate serious games with children. It is necessary to inform the children involved that the process takes time, and that the process can be altered to allow as much participation as possible without placing a burden on them. The children?s illness affected their possibility to take part; thus, it is crucial to accommodate the children?s needs when conducting similar studies. The parents? participation facilitated the meetings for their children, even though their involvement in the game design was negligible. UR - https://humanfactors.jmir.org/2022/2/e34476/ UR - http://dx.doi.org/10.2196/34476 UR - http://www.ncbi.nlm.nih.gov/pubmed/35639467 ID - info:doi/10.2196/34476 ER - TY - JOUR AU - Mulligan, Kathleen AU - Hirani, P. Shashivadan AU - Harris, Sally AU - Taylor, Jo AU - Wedderburn, R. Lucy AU - Newman, Stanton AU - PY - 2022/5/12 TI - The Effects of a Web-Based Tool for Parents of Children With Juvenile Idiopathic Arthritis: Randomized Controlled Trial JO - J Med Internet Res SP - e29787 VL - 24 IS - 5 KW - parenting stress KW - juvenile idiopathic arthritis KW - web-based intervention KW - randomized controlled trial KW - parenting KW - pediatrics KW - arthritis KW - RCT KW - rheumatology KW - children KW - youth KW - web-based tool KW - mobile phone N2 - Background: Juvenile idiopathic arthritis (JIA) is a group of autoinflammatory diseases that cause pain and disability if not controlled by treatment. Parenting a child with JIA is stressful for parents, who express concerns about their child?s treatment and may experience anxiety and powerlessness concerning their child?s illness. Parenting stress is greater in parents of children with chronic illness than in those with healthy children and is related to poorer psychological adjustment in both parents and children. It is therefore important to develop interventions to support parents. This paper reports the evaluation of a web-based tool that provides information and practical skills to help increase parents? confidence in managing their child?s illness and reduce parenting stress. Objective: The aim of this study is to evaluate the benefits of a web-based tool (WebParC) for parents of children with recently diagnosed JIA. Methods: A multicentered randomized controlled trial was conducted at pediatric rheumatology centers in England. We recruited parents of children aged ?12 years who had been diagnosed with JIA within the previous 6 months. They were randomized to the intervention (WebParC access plus standard care) or the control (standard care alone) and followed up 4 months and 12 months after randomization. Where both parents participated, they were randomized by household to the same trial arm. The WebParC intervention consists of information about JIA and its treatment plus a toolkit, based on cognitive behavioral therapy, to help parents develop skills to manage JIA-related issues. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress. The secondary outcomes were parental mood, self-efficacy, coping, effectiveness of participation in their child?s health care, satisfaction with health care, and child?s health-related quality of life. Results: A total of 203 households comprising 220 parents were randomized to the intervention (100/203, 49.3%) or control (103/203, 50.7%) arm. Follow-up assessments were completed by 65.5% (133/203) of the households at 4 months (intervention 60/100, 60%, and control 73/103, 70.9%) and 61.1% (124/203) of the households at 12 months (intervention 58/100, 58%, and control 66/103, 64.1%). A main effect of the trial arm was found on the Pediatric Inventory for Parents: the intervention participants reported less frequency (subscales communication F1,120627=5.37; P=.02, and role function F1,27203=5.40; P=.02) and difficulty (subscales communication F1,2237=7.43; P=.006, medical care F1,2907=4.04; P=.04, and role function F1,821=4.37, P=.04) regarding illness-related stressful events than the control participants. Conclusions: The WebParC website for parents of children with JIA reduced illness-related parenting stress. This web-based intervention offers a feasible preventive approach for parents of children with JIA and potentially could be adapted and evaluated for parents of children with other chronic illnesses. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN) 13159730; http://www.isrctn.com/ISRCTN13159730 UR - https://www.jmir.org/2022/5/e29787 UR - http://dx.doi.org/10.2196/29787 UR - http://www.ncbi.nlm.nih.gov/pubmed/35551065 ID - info:doi/10.2196/29787 ER - TY - JOUR AU - Cunningham, Chentel AU - Sung, Hyelin AU - Benoit, James AU - Conway, Jennifer AU - Scott, D. Shannon PY - 2022/3/21 TI - Multimedia Knowledge Translation Tools for Parents About Childhood Heart Failure: Environmental Scan JO - JMIR Pediatr Parent SP - e34166 VL - 5 IS - 1 KW - environmental scan KW - pediatrics heart failure KW - parent audience KW - knowledge translation KW - web-based educational tools N2 - Background: Childhood heart failure is a factor in many hospital admissions each year. It can impose a steep learning curve for parents who need to learn the key information to care for their child at home. In this study, we conducted an environmental scan to identify and assess web-based knowledge translation tools about childhood heart failure for parent audiences developed within North America. Objective: The aim of this study is to inventory tools publicly available to parents about childhood heart failure from popular web-based venues, assess how each tool communicates health information, and explore how they were developed. Methods: Our search strategy included two commonly used multimedia-based platforms: two app stores (Google Play and Apple App Store) and one search engine (Advanced Google Search). Common search terms were used, and results were uploaded to Microsoft Excel for screening between 2 reviewers. The inclusion criteria for the tools were as follows: content focused on educating parents about their child?s heart failure, developed in the English language, and originating within Canada and the United States. A total of 2 reviewers screened the app store and internet search results for relevant tools. Each tool was assessed using the Suitability Assessment of Materials (SAM), a validated tool that objectively assesses the suitability of how health information is communicated to a particular audience. Key informants who were involved in tool development were identified and invited for a qualitative interview using a semistructured format to provide data about the development process. Key themes were identified in the semistructured interview process. Results: Frequencies and SAM percent ratings of eligible tools were reported. No apps exist for parents relating to pediatric heart failure. Overall, 17 relevant internet tools were identified, and their suitability was assessed for the parent audience. Most tools scored well in layout and type, but they scored lower in readability and graphics. Qualitative interviews with key informants revealed three key themes: timely and introductory knowledge, credible and trustworthy knowledge, and challenges and evolution in knowledge. Conclusions: This is the first environmental scan looking for parent tools relating to childhood heart failure in Canada and the United States. Findings from this study reveal that there are no apps on this topic and there is a small number of tools for parents on the internet (n=17). Using the SAM, no tools scored in the superior range, and further work in knowledge translation strategies needs to be done in this area to improve more effective education to parents and caregivers who have a child with heart failure. These findings will inform the development of a new resource on children?s heart failure that targets parents and caregiver audiences. UR - https://pediatrics.jmir.org/2022/1/e34166 UR - http://dx.doi.org/10.2196/34166 UR - http://www.ncbi.nlm.nih.gov/pubmed/35311676 ID - info:doi/10.2196/34166 ER - TY - JOUR AU - Sonney, Jennifer AU - Cho, E. Emily AU - Zheng, Qiming AU - Kientz, A. Julie PY - 2022/2/17 TI - Refinement of a Parent?Child Shared Asthma Management Mobile Health App: Human-Centered Design Study JO - JMIR Pediatr Parent SP - e34117 VL - 5 IS - 1 KW - parent?child shared management KW - school-age children KW - asthma KW - participatory design KW - mHealth KW - prototype KW - usability KW - family health informatics N2 - Background: The school-age years, approximately ages 7 through 11, represent a natural transition when children begin assuming some responsibility for their asthma management. Previously, we designed a theoretically derived, tailored parent?child shared asthma management mobile health app prototype, Improving Asthma Care Together (IMPACT). Objective: The purpose of this study was to use human-centered design (HCD) to iteratively refine IMPACT to optimize user experience and incorporate evidence-based longitudinal engagement strategies. Methods: This study used a mixed methods design from December 2019 to April 2021. Our app refinement used the HCD process of research, ideation, design, evaluation, and implementation, including 6 cycles of design and evaluation. The design and evaluation cycles focused on core app functionality, child engagement, and overall refinement. Evaluation with parent?child dyads entailed in-person and remote concept testing and usability testing sessions, after which rapid cycle thematic analyses identified key insights that informed future design refinement. Results: Twelve parent?child dyads enrolled in at least one round of this study. Eight of the 12 child participants were male with a mean age of 9.9 (SD 1.6) years and all parent participants were female. Throughout evaluation cycles, dyads selected preferred app layouts, gamification concepts, and overall features with a final design prototype emerging for full-scale development and implementation. Conclusions: A theoretically derived, evidence-based shared asthma management app was co-designed with end users to address real-world pain points and priorities. An 8-week pilot study testing app feasibility, acceptability, and preliminary efficacy is forthcoming. UR - https://pediatrics.jmir.org/2022/1/e34117 UR - http://dx.doi.org/10.2196/34117 UR - http://www.ncbi.nlm.nih.gov/pubmed/35175214 ID - info:doi/10.2196/34117 ER - TY - JOUR AU - Buchanan, Francine AU - Lai, Claudia AU - Cohen, Eyal AU - Milo-Manson, Golda AU - Shachak, Aviv PY - 2022/1/17 TI - Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis JO - J Particip Med SP - e31699 VL - 14 IS - 1 KW - shared decision-making KW - activity theory KW - parental decision-making KW - parenting KW - participatory medicine KW - pediatric KW - caregiving N2 - Background: Shared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs. Objective: The goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity. Methods: We interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context. Results: Parents of CMCs in our study made decisions based on a mental model of their child?s illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions. Conclusions: Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child?s unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values. UR - https://jopm.jmir.org/2022/1/e31699 UR - http://dx.doi.org/10.2196/31699 UR - http://www.ncbi.nlm.nih.gov/pubmed/35037890 ID - info:doi/10.2196/31699 ER - TY - JOUR AU - Adib, Riddhiman AU - Das, Dipranjan AU - Ahamed, Iqbal Sheikh AU - Lerret, Marie Stacee PY - 2022/1/4 TI - An mHealth App-Based Self-management Intervention for Family Members of Pediatric Transplant Recipients (myFAMI): Framework Design and Development Study JO - JMIR Nursing SP - e32785 VL - 5 IS - 1 KW - pediatric patients KW - transplant KW - mobile health KW - mHealth KW - family self-management KW - smartphone N2 - Background: Solid-organ transplantation is the treatment of choice for children with end-stage organ failure. Ongoing recovery and medical management at home after transplant are important for recovery and transition to daily life. Smartphones are widely used and hold the potential for aiding in the establishment of mobile health (mHealth) protocols. Health care providers, nurses, and computer scientists collaboratively designed and developed mHealth family self-management intervention (myFAMI), a smartphone-based intervention app to promote a family self-management intervention for pediatric transplant patients? families. Objective: This paper presents outcomes of the design stages and development actions of the myFAMI app framework, along with key challenges, limitations, and strengths. Methods: The myFAMI app framework is built upon a theory-based intervention for pediatric transplant patients, with aid from the action research (AR) methodology. Based on initially defined design motivation, the team of researchers collaboratively explored 4 research stages (research discussions, feedback and motivations, alpha testing, and deployment and release improvements) and developed features required for successful inauguration of the app in the real-world setting. Results: Deriving from app users and their functionalities, the myFAMI app framework is built with 2 primary components: the web app (for nurses? and superadmin usage) and the smartphone app (for participant/family member usage). The web app stores survey responses and triggers alerts to nurses, when required, based on the family members? response. The smartphone app presents the notifications sent from the server to the participants and captures survey responses. Both the web app and the smartphone app were built upon industry-standard software development frameworks and demonstrate great performance when deployed and used by study participants. Conclusions: The paper summarizes a successful and efficient mHealth app-building process using a theory-based intervention in nursing and the AR methodology in computer science. Focusing on factors to improve efficiency enabled easy navigation of the app and collection of data. This work lays the foundation for researchers to carefully integrate necessary information (from the literature or experienced clinicians) to provide a robust and efficient solution and evaluate the acceptability, utility, and usability for similar studies in the future. International Registered Report Identifier (IRRID): RR2-10.1002/nur.22010 UR - https://nursing.jmir.org/2022/1/e32785 UR - http://dx.doi.org/10.2196/32785 UR - http://www.ncbi.nlm.nih.gov/pubmed/34780344 ID - info:doi/10.2196/32785 ER - TY - JOUR AU - Mörelius, Evalotte AU - Robinson, Suzanne AU - Arabiat, Diana AU - Whitehead, Lisa PY - 2021/12/22 TI - Digital Interventions to Improve Health Literacy Among Parents of Children Aged 0 to 12 Years With a Health Condition: Systematic Review JO - J Med Internet Res SP - e31665 VL - 23 IS - 12 KW - child KW - child health services KW - digital technology KW - health literacy KW - infant KW - internet-based intervention KW - parents KW - patient compliance KW - pediatric hospitals N2 - Background: Parental health literacy is associated with child health outcomes. Parents are increasingly turning to the internet to obtain health information. In response, health care providers are using digital interventions to communicate information to assist parents in managing their child?s health conditions. Despite the emergence of interventions to improve parental health literacy, to date, no systematic evaluation of the effectiveness of the interventions has been undertaken. Objective: The aim of this review is to examine the effect of digital health interventions on health literacy among parents of children aged 0-12 years with a health condition. This includes evaluating parents? engagement (use and satisfaction) with digital health interventions, the effect of these interventions on parental health knowledge and health behavior, and the subsequent impact on child health outcomes. Methods: This systematic review was registered a priori on PROSPERO (International Prospective Register of Systematic Reviews) and developed according to the Joanna Briggs Institute methodology for systematic reviews. The databases CINAHL, MEDLINE, and PsycINFO were searched for relevant literature published between January 2010 and April 2021. Studies were included if they were written in English. A total of 2 authors independently assessed the search results and performed a critical appraisal of the studies. Results: Following the review of 1351 abstracts, 31 (2.29%) studies were selected for full-text review. Of the 31 studies, 6 (19%) studies met the inclusion criteria. Of the 6 studies, 1 (17%) was excluded following the critical appraisal, and the 5 (83%) remaining studies were quantitative in design and included digital health interventions using web-based portals to improve parents? health knowledge and health behavior. Owing to heterogeneity in the reported outcomes, meta-analysis was not possible, and the findings were presented in narrative form. Of the 5 studies, satisfaction was measured in 3 (60%) studies, and all the studies reported high satisfaction with the digital intervention. All the studies reported improvement in parental health literacy at postintervention as either increase in disease-specific knowledge or changes in health behavior. Of the 5 studies, only 1 (20%) study included child health outcomes, and this study reported significant improvements related to increased parental health knowledge. Conclusions: In response to a pandemic such as COVID-19, there is an increased need for evidence-based digital health interventions for families of children living with health conditions. This review has shown the potential of digital health interventions to improve health knowledge and behavior among parents of young children with a health condition. However, few digital health interventions have been developed and evaluated for this population. Future studies with robust research designs are needed and should include the potential benefits of increased parent health literacy for the child. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42020192386; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=192386 UR - https://www.jmir.org/2021/12/e31665 UR - http://dx.doi.org/10.2196/31665 UR - http://www.ncbi.nlm.nih.gov/pubmed/34941559 ID - info:doi/10.2196/31665 ER - TY - JOUR AU - Petrenko, McGee Christie Lynn AU - Kautz-Turnbull, Christine Carson AU - Roth, Rose Alicia AU - Parr, Elizabeth Jennifer AU - Tapparello, Cristiano AU - Demir, Utku AU - Olson, Carmichael Heather PY - 2021/12/2 TI - Initial Feasibility of the ?Families Moving Forward Connect? Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach JO - JMIR Form Res SP - e29687 VL - 5 IS - 12 KW - fetal alcohol spectrum disorders KW - fetal alcohol syndrome KW - intervention KW - mobile health KW - mHealth KW - parenting KW - children KW - prenatal alcohol KW - digital health KW - user-centered design KW - mobile phone N2 - Background: Fetal alcohol spectrum disorders (FASD) are prevalent neurodevelopmental conditions. Significant barriers prevent family access to FASD-informed care. To improve accessibility, a scalable mobile health intervention for caregivers of children with FASD is under development. The app, called Families Moving Forward (FMF) Connect, is derived from the FMF Program, a parenting intervention tailored for FASD. FMF Connect has 5 components: Learning Modules, Family Forum, Library, Notebook, and Dashboard. Objective: This study assesses the feasibility of FMF Connect intervention prototypes. This includes examining app usage data and evaluating user experience to guide further refinements. Methods: Two rounds of beta-testing were conducted as part of a systematic approach to the development and evaluation of FMF Connect: (1) an iOS prototype was tested with 20 caregivers of children (aged 3-17 years) with FASD and 17 providers for the first round (April-May 2019) and (2) iOS and Android prototypes were tested with 25 caregivers and 1 provider for the second round (November-December 2019). After each 6-week trial, focus groups or individual interviews were completed. Usage analytics and thematic analysis were used to address feasibility objectives. Results: Across beta-test trials, 84% (38/45) of caregivers and 94% (17/18) of providers installed the FMF Connect app. Technological issues were tracked in real time with updates to address problems and expand app functionalities. On use days, caregivers averaged 20 minutes using the app; most of the time was spent watching videos in Learning Modules. Caregiver engagement with the Learning Modules varied across 5 usage pattern tiers. Overall, 67% (30/45) of caregivers posted at least once in the Family Forum. Interviews were completed by 26 caregivers and 16 providers. App evaluations generally did not differ according to usage pattern tier or demographic characteristics. Globally, app users were very positive, with 2.5 times more positive- than negative-coded segments across participants. Positive evaluations emphasized the benefits of accessible information and practical utility of the app. Informational and video content were described as especially valuable to caregivers. A number of affective and social benefits of the app were identified, aligning well with the caregivers? stated motivators for app use. Negative evaluations of user experience generally emphasized technical and navigational aspects. Refinements were made on the basis of feedback during the first beta test, which were positively received during the second round. Participants offered many valuable recommendations for continuing app refinement, which is useful in improving user experience. Conclusions: The results demonstrate that the FMF Connect intervention is acceptable and feasible for caregivers raising children with FASD. They will guide subsequent app refinement before large-scale randomized testing. This study used a systematic, user-centered design approach for app development and evaluation. The approach used here may illustrate a model that can broadly inform the development of mobile health and digital parenting interventions. UR - https://formative.jmir.org/2021/12/e29687 UR - http://dx.doi.org/10.2196/29687 UR - http://www.ncbi.nlm.nih.gov/pubmed/34860661 ID - info:doi/10.2196/29687 ER - TY - JOUR AU - Luo, Yuanhui AU - Xia, Wei AU - Cheung, Tan Ankie AU - Ho, Kwan Laurie Long AU - Zhang, Jingping AU - Xie, Jianhui AU - Xiao, Pin AU - Li, William Ho Cheung PY - 2021/11/29 TI - Effectiveness of a Mobile Device?Based Resilience Training Program in Reducing Depressive Symptoms and Enhancing Resilience and Quality of Life in Parents of Children With Cancer: Randomized Controlled Trial JO - J Med Internet Res SP - e27639 VL - 23 IS - 11 KW - depressive symptoms KW - pediatric cancer KW - parents KW - quality of life KW - resilience KW - mobile phone N2 - Background: Caring for children with cancer can be a stressful experience for parents and may have negative effects on their physical and psychological well-being. Although evidence has shown that resilience is associated with positive psychological well-being, few interventions have been specifically designed to enhance the resilience of parents of children with cancer. Objective: The aim of this study is to examine the effectiveness of a mobile device?based resilience training program in reducing depressive symptoms and enhancing resilience and quality of life (QoL) in parents of children with cancer. Methods: Parents of children diagnosed with cancer were recruited from the pediatric oncology wards of 3 tertiary hospitals in China. The participants were randomly assigned to either the experimental group (52/103, 50.5%) to undergo an 8-week mobile device?based resilience training program or to the control group (51/103, 49.5%) to receive an 8-week program of placebo information. The study outcomes included resilience, depressive symptoms, and QoL, as measured by the Connor?Davidson Resilience Scale, the Self-Rating Depression Scale, and the Short Form of the 6-Dimension Health Survey, respectively. All data were collected at baseline and at 2 and 6 months of follow-up. The data analysis followed the intention-to-treat principle. A generalized estimating equation was used to examine the effects of the intervention. Results: The participants were mostly female (72/103, 69.9%), and their mean age was 33.6 (SD 5.2) years. The participants in the experimental group showed significantly higher levels of resilience (mean 67.96, SD 15.8 vs mean 58.27, SD 19.0; P<.001) and lower levels of depressive symptoms (mean 40.17, SD 9.9 vs mean 46.04, SD 10.9; P<.001) than those in the control group at 6 months of follow-up. The intervention showed statistically significant effects in improving resilience (?=6.082; P=.01) and decreasing depressive symptoms (?=?2.772; P=.04) relative to the control group. The QoL score in the experimental group was higher than that in the control group at 6 months of follow-up (mean 0.79, SD 0.2 vs mean 0.76, SD 0.3; P=.07); however, no statistically significant intervention effect was detected (?=.020; P=.38). Conclusions: The mobile device?based resilience training program effectively enhanced resilience and alleviated depressive symptoms in parents of children with cancer. It is highly recommended that health care professionals incorporate this resilience training program when providing psychological care to parents of children with cancer. Trial Registration: Clinical.Trials.gov NCT04038242; http://clinicaltrials.gov/ct2/show/NCT04038242 UR - https://www.jmir.org/2021/11/e27639 UR - http://dx.doi.org/10.2196/27639 UR - http://www.ncbi.nlm.nih.gov/pubmed/34847060 ID - info:doi/10.2196/27639 ER - TY - JOUR AU - Woodford, Joanne AU - Farrand, Paul AU - Hagström, Josefin AU - Hedenmalm, Li AU - von Essen, Louise PY - 2021/7/22 TI - Internet-Administered Cognitive Behavioral Therapy for Common Mental Health Difficulties in Parents of Children Treated for Cancer: Intervention Development and Description Study JO - JMIR Form Res SP - e22709 VL - 5 IS - 7 KW - parents KW - eMental health KW - internet-administered cognitive behavioral therapy KW - ICBT KW - TIDieR KW - CBT self-help KW - low-intensity CBT KW - mobile phone N2 - Background: Following the end of a child?s treatment for cancer, parents may report psychological distress. However, there is a lack of evidence-based interventions that are tailored to the population, and psychological support needs are commonly unmet. An internet-administered low-intensity cognitive behavioral therapy (LICBT)?based intervention (EJDeR [internetbaserad självhjälp för föräldrar till barn som avslutat en behandling mot cancer]) may provide a solution. Objective: The first objective is to provide an overview of a multimethod approach that was used to inform the development of the EJDeR intervention. The second objective is to provide a detailed description of the EJDeR intervention in accordance with the Template for Intervention Description and Replication (TIDieR) checklist. Methods: EJDeR was developed through a multimethod approach, which included the use of existing evidence, the conceptualization of distress, participatory action research, a cross-sectional survey, and professional and public involvement. Depending on the main presenting difficulty identified during assessment, LICBT behavioral activation or worry management treatment protocols are adopted for the treatment of depression or generalized anxiety disorder when experienced individually or when comorbid. EJDeR is delivered via the Uppsala University Psychosocial Care Programme (U-CARE) portal, a web-based platform that is designed to deliver internet-administered LICBT interventions and includes secure videoconferencing. To guide parents in the use of EJDeR, weekly written messages via the portal are provided by e-therapists comprising final year psychology program students with training in cognitive behavioral therapy. Results: An overview of the development process and a description of EJDeR, which was informed by the TIDieR checklist, are presented. Adaptations that were made in response to public involvement are highlighted. Conclusions: EJDeR represents a novel, guided, internet-administered LICBT intervention for supporting parents of children treated for cancer. Adopting the TIDieR checklist offers the potential to enhance fidelity to the intervention protocol and facilitate later implementation. The intervention is currently being tested in a feasibility study (the ENGAGE study). International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2018-023708 UR - https://formative.jmir.org/2021/7/e22709 UR - http://dx.doi.org/10.2196/22709 UR - http://www.ncbi.nlm.nih.gov/pubmed/34142662 ID - info:doi/10.2196/22709 ER - TY - JOUR AU - Yuwen, Weichao AU - Duran, Miriana AU - Tan, Minghui AU - Ward, M. Teresa AU - Cheng, Chieh Sunny AU - Ramirez, Magaly PY - 2021/6/22 TI - Self-Care Needs and Technology Preferences Among Parents in Marginalized Communities: Participatory Design Study JO - JMIR Pediatr Parent SP - e27542 VL - 4 IS - 2 KW - asthma KW - caregiving KW - self-care KW - parents KW - qualitative research KW - culturally appropriate technology KW - minority groups KW - marginalization N2 - Background: Ten million parents provide unpaid care to children living with chronic conditions, such as asthma, and a high percentage of these parents are in marginalized communities, including racial and ethnic minority and low-income families. There is an urgent need to develop technology-enabled tailored solutions to support the self-care needs of these parents. Objective: This study aimed to use a participatory design approach to describe and compare Latino and non-Latino parents? current self-care practices, needs, and technology preferences when caring for children with asthma in marginalized communities. Methods: The participatory design approach was used to actively engage intended users in the design process and empower them to identify needs and generate design ideas to meet those needs. Results: Thirteen stakeholders participated in three design sessions. We described Latino and non-Latino parents? similarities in self-care practices and cultural-specific preferences. When coming up with ideas of technologies for self-care, non-Latino parents focused on improving caregiving stress through journaling, daily affirmations, and tracking feelings, while Latino parents focused more on relaxation and entertainment. Conclusions: Considerations need to be taken beyond language differences when developing technology-enabled interventions for diverse populations. The community partnership approach strengthened the study?s inclusive design. UR - https://pediatrics.jmir.org/2021/2/e27542 UR - http://dx.doi.org/10.2196/27542 UR - http://www.ncbi.nlm.nih.gov/pubmed/34156343 ID - info:doi/10.2196/27542 ER - TY - JOUR AU - Kanitkar, Anuprita AU - Parmar, Tejraj Sanjay AU - Szturm, J. Tony AU - Restall, Gayle AU - Rempel, Gina AU - Sepehri, Nariman PY - 2021/5/31 TI - Parents' Perspectives on a Computer Game?Assisted Rehabilitation Program for Manual Dexterity in Children With Cerebral Palsy: Qualitative Analysis of Expectations, Child Engagement, and Benefits JO - JMIR Rehabil Assist Technol SP - e24337 VL - 8 IS - 2 KW - cerebral palsy KW - parents' expectations KW - fine motor function KW - object manipulation KW - computer game?based treatment protocol KW - parents KW - motor function KW - computer games, rehabilitation KW - game-based rehabilitation KW - gross movement KW - children N2 - Background: Children with motor impairments affecting the upper extremity benefit from task-specific therapy, such as constraint-induced movement therapy. However, there is a need to improve engagement and compliance with task-specific exercise programs that target manual dexterity for children with cerebral palsy (CP). A computer game?based rehabilitation (GRP) platform was developed that combines fine manipulation and gross movement exercises with engaging game activities appropriate for young children with CP. Objective: The objectives of this qualitative analysis were to compare parents? perspectives and opinions about expectations, challenges, and benefits between 2 interventions. Methods: A mixed methods, randomized controlled trial (RCT) was conducted to examine the feasibility and estimate the effect size of 2 exercise programs for rehabilitation of manual dexterity of children with CP using either GRP or conventional therapy. Parents of 26 of the children who completed the GRP program (n=33) and parents of 15 of the children who completed the conventional therapy program (n=27) participated in the interviews. A general conductive approach was used to analyze the data recorded during the parents? interviews. Results: Five themes captured the range of the parent?s experiences, viewpoints, and ideas: (1) parents? expectations, (2) child?s engagement with therapy, (3) positive effects of the interventions, (4) challenges, and (5) improving the protocol. Conclusions: Parents from both groups recognized that their expectations related to improving children?s object handling and manipulation skills including participation in activities of daily life were addressed during the 16-week therapy program. Parents perceived a change in the children?s level of independence in their daily tasks at home, school, and leisure activities. Trial Registration: ClinicalTrials.gov NCT02728375; https://clinicaltrials.gov/ct2/show/NCT02728375 UR - https://rehab.jmir.org/2021/2/e24337 UR - http://dx.doi.org/10.2196/24337 UR - http://www.ncbi.nlm.nih.gov/pubmed/34057424 ID - info:doi/10.2196/24337 ER - TY - JOUR AU - Hood, M. Anna AU - Strong, Heather AU - Nwankwo, Cara AU - Johnson, Yolanda AU - Peugh, James AU - Mara, A. Constance AU - Shook, M. Lisa AU - Brinkman, B. William AU - Real, J. Francis AU - Klein, D. Melissa AU - Hackworth, Rogelle AU - Badawy, M. Sherif AU - Thompson, A. Alexis AU - Raphael, L. Jean AU - Yates, M. Amber AU - Smith-Whitley, Kim AU - King, A. Allison AU - Calhoun, Cecelia AU - Creary, E. Susan AU - Piccone, M. Connie AU - Hildenbrand, K. Aimee AU - Reader, K. Steven AU - Neumayr, Lynne AU - Meier, R. Emily AU - Sobota, E. Amy AU - Rana, Sohail AU - Britto, Maria AU - Saving, L. Kay AU - Treadwell, Marsha AU - Quinn, T. Charles AU - Ware, E. Russell AU - Crosby, E. Lori PY - 2021/5/21 TI - Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial JO - JMIR Res Protoc SP - e27650 VL - 10 IS - 5 KW - dissemination KW - decisional uncertainty KW - quality of care KW - child health KW - NHLBI guidelines N2 - Background: Sickle cell anemia (SCA) is a genetic blood disorder that puts children at a risk of serious medical complications, early morbidity and mortality, and high health care utilization. Until recently, hydroxyurea was the only disease-modifying treatment for this life-threatening disease and has remained the only option for children younger than 5 years. Evidence-based guidelines recommend using a shared decision-making (SDM) approach for offering hydroxyurea to children with SCA (HbSS or HbS/?0 thalassemia) aged as early as 9 months. However, the uptake remains suboptimal, likely because caregivers lack information about hydroxyurea and have concerns about its safety and potential long-term side effects. Moreover, clinicians do not routinely receive training or tools, especially those that provide medical evidence and consider caregivers? preferences and values, to facilitate a shared discussion with caregivers. Objective: The aim of this study is to understand how best to help parents of young children with sickle cell disease and their clinicians have a shared discussion about hydroxyurea (one that considers medical evidence and parent values and preferences). Methods: We designed our study to compare the effectiveness of two methods for disseminating hydroxyurea guidelines to facilitate SDM: a clinician pocket guide (ie, usual care) and a clinician hydroxyurea SDM toolkit (H-SDM toolkit). Our primary outcomes are caregiver reports of decisional uncertainty and knowledge of hydroxyurea. The study also assesses the number of children (aged 0-5 years) who were offered and prescribed hydroxyurea and the resultant health outcomes. Results: The Ethics Committee of the Cincinnati Children?s Hospital Medical Center approved this study in November 2017. As of February 2021, we have enrolled 120 caregiver participants. Conclusions: The long-term objective of this study is to improve the quality of care for children with SCA. Using multicomponent dissemination methods developed in partnership with key stakeholders and designed to address barriers to high-quality care, caregivers of patients with SCA can make informed and shared decisions about their health. Trial Registration: ClinicalTrials.gov NCT03442114; https://clinicaltrials.gov/ct2/show/NCT03442114 International Registered Report Identifier (IRRID): DERR1-10.2196/27650 UR - https://www.researchprotocols.org/2021/5/e27650 UR - http://dx.doi.org/10.2196/27650 UR - http://www.ncbi.nlm.nih.gov/pubmed/34018965 ID - info:doi/10.2196/27650 ER - TY - JOUR AU - Sezgin, Emre AU - Noritz, Garey AU - Lin, Simon AU - Huang, Yungui PY - 2021/5/11 TI - Feasibility of a Voice-Enabled Medical Diary App (SpeakHealth) for Caregivers of Children With Special Health Care Needs and Health Care Providers: Mixed Methods Study JO - JMIR Form Res SP - e25503 VL - 5 IS - 5 KW - children with special health care needs KW - care management KW - care coordination KW - voice-enabled mobile app KW - health information technology KW - voice assistant KW - voice interaction KW - mobile phone N2 - Background: Children with special health care needs (CSHCN) require more than the usual care management and coordination efforts from caregivers and health care providers (HCPs). Health information and communication technologies can potentially facilitate these efforts to increase the quality of care received by CSHCN. Objective: In this study, we aim to assess the feasibility of a voice-enabled medical diary app (SpeakHealth) by investigating its potential use among caregivers and HCPs. Methods: Following a mixed methods approach, caregivers of CSHCN were interviewed (n=10) and surveyed (n=86) about their care management and communication technology use. Only interviewed participants were introduced to the SpeakHealth app prototype, and they tested the app during the interview session. In addition, we interviewed complex care HCPs (n=15) to understand their perception of the value of a home medical diary such as the SpeakHealth app. Quantitative data were analyzed using descriptive statistics and correlational analyses. Theoretical thematic analysis was used to analyze qualitative data. Results: The survey results indicated a positive attitude toward voice-enabled technology and features; however, there was no strong correlation among the measured items. The caregivers identified communication, information sharing, tracking medication, and appointments as fairly and highly important features of the app. Qualitative analysis revealed the following two overarching themes: enablers and barriers in care communication and enablers and barriers in communication technologies. The subthemes included parent roles, care communication technologies, and challenges. HCPs found the SpeakHealth app to be a promising tool for timely information collection that could be available for sharing information with the health system. Overall, the findings demonstrated a variety of needs and challenges for caregivers of CSHCN and opportunities for voice-enabled, interactive medical diary apps in care management and coordination. Caregivers fundamentally look for better information sharing and communication with HCPs. Health care and communication technologies can potentially improve care communication and coordination in addressing the patient and caregiver needs. Conclusions: The perspectives of caregivers and providers suggested both benefits and challenges in using the SpeakHealth app for medical note-taking and tracking health events at home. Our findings could inform researchers and developers about the potential development and use of a voice-enabled medical diary app. UR - https://formative.jmir.org/2021/5/e25503 UR - http://dx.doi.org/10.2196/25503 UR - http://www.ncbi.nlm.nih.gov/pubmed/33865233 ID - info:doi/10.2196/25503 ER - TY - JOUR AU - Kan, Kristin AU - Shaunfield, Sara AU - Kanaley, Madeleine AU - Chadha, Avneet AU - Boon, Kathy AU - Foster, C. Carolyn AU - Morales, Luis AU - Labellarte, Patricia AU - Vojta, Deneen AU - Gupta, S. Ruchi PY - 2021/4/23 TI - Parent Experiences With Electronic Medication Monitoring in Pediatric Asthma Management: Qualitative Study JO - JMIR Pediatr Parent SP - e25811 VL - 4 IS - 2 KW - pediatric asthma KW - digital health KW - outpatient care KW - asthma management KW - pediatric KW - asthma KW - parents KW - caregivers KW - Bluetooth sensors KW - inhaler N2 - Background: Electronic medication monitoring (EMM) is a digital tool that can be used for tracking daily medication use. Previous studies of EMM in asthma management have been conducted in adults or have examined pediatric interventions that use EMM for less than 1 year. To understand how to improve EMM-enhanced interventions, it is necessary to explore the experiences of parents of children with asthma, recruited from outpatient practices, who completed a 12-month intervention trial. Objective: The objective of our study was to use qualitative inquiry to answer the following questions: (1) how did using an EMM-enhanced intervention change parents'/caregivers? experiences of managing their child?s asthma, and (2) what do parents recommend for improving the intervention in the future? Methods: Parents were recruited from the intervention arm of a multicomponent health intervention enhanced by Bluetooth-enabled sensors placed on inhaler medications. Semistructured interviews were conducted with 20 parents of children aged 4-12 years with asthma. Interviews were audio-recorded, transcribed, and inductively analyzed using a constant comparative approach. Results: Interview participants reflected an even mix of publicly and privately insured children and a diverse racial-ethnic demographic. Parents discussed 6 key themes related to their experience with the EMM-enhanced intervention for the management of their child's asthma: (1) compatibility with the family's lifestyle, (2) impact on asthma management, (3) impact on the child?s health, (4) emotional impact of the intervention, (5) child?s engagement in asthma management with the intervention, and (6) recommendations for future intervention design. Overall, parents reported that the 12-month EMM intervention was compatible with their daily lives, positively influenced their preventive and acute asthma management, and promoted their child's engagement in their own asthma management. While parents found the intervention acceptable and generally favorable, some parents identified compatibility issues for families with multiple caregivers and frustration when the technology malfunctioned. Conclusions: Parents generally viewed the intervention as a positive influence on the management of their child's asthma. However, our study also highlighted technology challenges related to having multiple caregivers, which will need to be addressed in future iterations for families. Attention must be paid to the needs of parents from low socioeconomic households, who may have more limited access to reliable internet or depend on other relatives for childcare. Understanding these family factors will help refine how a digital tool can be adopted into daily disease management of pediatric asthma. UR - https://pediatrics.jmir.org/2021/2/e25811 UR - http://dx.doi.org/10.2196/25811 UR - http://www.ncbi.nlm.nih.gov/pubmed/33890861 ID - info:doi/10.2196/25811 ER - TY - JOUR AU - Gamble, Abigail AU - Beech, M. Bettina AU - Wade, C. Breanna AU - Sutton, D. Victor AU - Lim, Crystal AU - Sandridge, Shanda AU - Welsch, A. Michael PY - 2021/3/31 TI - Telehealth Diabetes Prevention Intervention for the Next Generation of African American Youth: Protocol for a Pilot Trial JO - JMIR Res Protoc SP - e25699 VL - 10 IS - 3 KW - prediabetic state KW - child obesity KW - telehealth KW - obesity management KW - behavioral science KW - implementation science KW - Jackson Heart Study KW - Centers for Disease Control and Prevention KW - preventive medicine KW - mobile phone N2 - Background: In 1999, type 2 diabetes mellitus (T2DM) was identified as an emerging epidemic in youth, and racial and ethnic minority youth were identified with high risk. Two decades later, no gold standard T2DM prevention intervention has been established for this population. Objective: This study tests the efficacy of a telehealth diabetes prevention intervention for African American (AA) families with children with risk for T2DM. Concurrently, investigators aim to evaluate an implementation strategy for the uptake of the intervention by the University of Mississippi Medical Center?s (UMMC) pediatric weight management clinic. Methods: This single-arm trial will enroll 20 parents with overweight or obesity of children (8-11 years) with overweight or obesity, both of whom are at risk for T2DM. Parents will meet in small groups (5 parents per group) weekly for 11 weeks and then monthly for 4 monthly maintenance sessions via videoconference using Wi-Fi?enabled iPads with cellular connectivity. The intervention will be adapted from the National Diabetes Prevention Program and Power to Prevent, a diabetes prevention program tailored for AA families. The same lifestyle intervention facilitated by a racially concordant lifestyle coach trained in the Diabetes Prevention Program will be delivered to all groups (n=4). Participants will be recruited in-person during patient encounters at the UMMC?s pediatric weight management clinic. Sessions will consist of dietary and physical activity behavior change strategies facilitated using problem-solving and goal-setting skills. The implementation strategy has 2 targets: the pediatric weight management clinic site and clinical team and parents of children at risk for T2DM engaged in intensive obesity treatment to prevent T2DM. The multifaceted implementation protocol includes 4 discrete strategies: creating a new clinical team, changing the service site, intervening with families, and promoting organizational readiness for change. Results: Recruitment and enrollment began in December 2020, and the intervention is scheduled to be delivered to the first cohort of parents in March 2021. The results are expected to be submitted for publication beginning in November 2021 through 2022. The primary outcome measure for the pilot trial will include changes from baseline to 12 and 30 weeks in the child BMI z score and parent BMI. The implementation evaluation will include multiple measures of feasibility, acceptability, appropriateness, fidelity, and efficacy. This protocol was approved by the UMMC?s Institutional Review Board (#2020V0249). Conclusions: The proposed intervention approach is supported by the scientific literature and is scalable given the current and future health care subsidies for telehealth. Findings from this pilot trial will begin to address critical barriers to defining a gold standard lifestyle intervention for AA families with children at risk for T2DM. If effective, the intervention could be feasibly disseminated to treat obesity and prevent T2DM in high-risk AA pediatric populations. International Registered Report Identifier (IRRID): PRR1-10.2196/25699 UR - https://www.researchprotocols.org/2021/3/e25699 UR - http://dx.doi.org/10.2196/25699 UR - http://www.ncbi.nlm.nih.gov/pubmed/33787504 ID - info:doi/10.2196/25699 ER - TY - JOUR AU - Kowatsch, Tobias AU - Schachner, Theresa AU - Harperink, Samira AU - Barata, Filipe AU - Dittler, Ullrich AU - Xiao, Grace AU - Stanger, Catherine AU - v Wangenheim, Florian AU - Fleisch, Elgar AU - Oswald, Helmut AU - Möller, Alexander PY - 2021/2/17 TI - Conversational Agents as Mediating Social Actors in Chronic Disease Management Involving Health Care Professionals, Patients, and Family Members: Multisite Single-Arm Feasibility Study JO - J Med Internet Res SP - e25060 VL - 23 IS - 2 KW - digital health intervention KW - intervention design KW - mHealth KW - eHealth KW - chatbot KW - conversational agent KW - chronic diseases KW - asthma KW - feasibility study N2 - Background: Successful management of chronic diseases requires a trustful collaboration between health care professionals, patients, and family members. Scalable conversational agents, designed to assist health care professionals, may play a significant role in supporting this collaboration in a scalable way by reaching out to the everyday lives of patients and their family members. However, to date, it remains unclear whether conversational agents, in such a role, would be accepted and whether they can support this multistakeholder collaboration. Objective: With asthma in children representing a relevant target of chronic disease management, this study had the following objectives: (1) to describe the design of MAX, a conversational agent?delivered asthma intervention that supports health care professionals targeting child-parent teams in their everyday lives; and (2) to assess the (a) reach of MAX, (b) conversational agent?patient working alliance, (c) acceptance of MAX, (d) intervention completion rate, (e) cognitive and behavioral outcomes, and (f) human effort and responsiveness of health care professionals in primary and secondary care settings. Methods: MAX was designed to increase cognitive skills (ie, knowledge about asthma) and behavioral skills (ie, inhalation technique) in 10-15-year-olds with asthma, and enables support by a health professional and a family member. To this end, three design goals guided the development: (1) to build a conversational agent?patient working alliance; (2) to offer hybrid (human- and conversational agent?supported) ubiquitous coaching; and (3) to provide an intervention with high experiential value. An interdisciplinary team of computer scientists, asthma experts, and young patients with their parents developed the intervention collaboratively. The conversational agent communicates with health care professionals via email, with patients via a mobile chat app, and with a family member via SMS text messaging. A single-arm feasibility study in primary and secondary care settings was performed to assess MAX. Results: Results indicated an overall positive evaluation of MAX with respect to its reach (49.5%, 49/99 of recruited and eligible patient-family member teams participated), a strong patient-conversational agent working alliance, and high acceptance by all relevant stakeholders. Moreover, MAX led to improved cognitive and behavioral skills and an intervention completion rate of 75.5%. Family members supported the patients in 269 out of 275 (97.8%) coaching sessions. Most of the conversational turns (99.5%) were conducted between patients and the conversational agent as opposed to between patients and health care professionals, thus indicating the scalability of MAX. In addition, it took health care professionals less than 4 minutes to assess the inhalation technique and 3 days to deliver related feedback to the patients. Several suggestions for improvement were made. Conclusions: This study provides the first evidence that conversational agents, designed as mediating social actors involving health care professionals, patients, and family members, are not only accepted in such a ?team player? role but also show potential to improve health-relevant outcomes in chronic disease management. UR - http://www.jmir.org/2021/2/e25060/ UR - http://dx.doi.org/10.2196/25060 UR - http://www.ncbi.nlm.nih.gov/pubmed/33484114 ID - info:doi/10.2196/25060 ER - TY - JOUR AU - Liu, Guihua AU - Wang, Shuo AU - Liao, Jinhua AU - Ou, Ping AU - Huang, Longsheng AU - Xie, Namei AU - He, Yingshuang AU - Lin, Jinling AU - He, Hong-Gu AU - Hu, Rongfang PY - 2021/2/10 TI - The Efficacy of WeChat-Based Parenting Training on the Psychological Well-being of Mothers With Children With Autism During the COVID-19 Pandemic: Quasi-Experimental Study JO - JMIR Ment Health SP - e23917 VL - 8 IS - 2 KW - coronavirus disease 2019 KW - autism spectrum disorder KW - parenting training KW - psychological well-being KW - social media KW - WeChat KW - COVID-19 KW - autism KW - parenting KW - mental health KW - well-being KW - anxiety KW - depression KW - stress N2 - Background: During the COVID-19 pandemic, special education schools for children in most areas of China were closed between the end of January and the beginning of June in 2020. The sudden interruption in schooling and the pandemic itself caused parents to be anxious and even to panic. Mobile-based parenting skills education has been demonstrated to be an effective method for improving the psychological well-being of mothers with children with autism. However, whether it can improve the psychological states of mothers in the context of the COVID-19 pandemic is a subject that should be urgently investigated. Objective: The aim of this study is to evaluate the efficacy of WeChat-based parenting training on anxiety, depression, parenting stress, and hope in mothers with children with autism, as well as the feasibility of the program during the COVID-19 pandemic. Methods: This was a quasi-experimental trial. A total of 125 mothers with preschool children with autism were recruited in January 2020. The participants were assigned to the control group (n=60), in which they received routine care, or the intervention group (n=65), in which they received the 12-week WeChat-based parenting training plus routine care, according to their preferences. Anxiety, depression, parenting stress, hope, satisfaction, and adherence to the intervention were measured at three timepoints: baseline (T0), postintervention (T1), and a 20-week follow-up (T2). Results: In total, 109 mothers completed the T1 assessment and 104 mothers completed the T2 assessment. The results of the linear mixed model analysis showed statistically significant group × time interaction effects for the intervention on anxiety (F=14.219, P<.001), depression (F=26.563, P<.001), parenting stress (F=68.572, P<.001), and hope (F=197.608, P<.001). Of all mothers in the intervention group, 90.4% (48.8/54) reported that they were extremely satisfied with the WeChat-based parenting training. In total, 40.0% (26/65) logged their progress in home training each week and 61.5% (40/65) logged their progress more than 80% of the time for all 20 weeks. Conclusions: The WeChat-based parenting training is acceptable and appears to be an effective approach for reducing anxiety, depression, and parenting stress, as well as increasing hope in mothers with children with autism during the global COVID-19 pandemic. Future studies with rigorous designs and longer follow-up periods are needed to further detect the effectiveness of the WeChat-based parenting training. Trial Registration: Chinese Clinical Trial Registry ChiCTR2000031772; http://www.chictr.org.cn/showproj.aspx?proj=52165 UR - https://mental.jmir.org/2021/2/e23917 UR - http://dx.doi.org/10.2196/23917 UR - http://www.ncbi.nlm.nih.gov/pubmed/33481751 ID - info:doi/10.2196/23917 ER - TY - JOUR AU - Brew-Sam, Nicola AU - Chhabra, Madhur AU - Parkinson, Anne AU - Hannan, Kristal AU - Brown, Ellen AU - Pedley, Lachlan AU - Brown, Karen AU - Wright, Kristine AU - Pedley, Elizabeth AU - Nolan, J. Christopher AU - Phillips, Christine AU - Suominen, Hanna AU - Tricoli, Antonio AU - Desborough, Jane PY - 2021/2/2 TI - Experiences of Young People and Their Caregivers of Using Technology to Manage Type 1 Diabetes Mellitus: Systematic Literature Review and Narrative Synthesis JO - JMIR Diabetes SP - e20973 VL - 6 IS - 1 KW - type 1 diabetes mellitus KW - diabetes KW - children KW - adolescents KW - technology KW - self-management KW - experiences KW - perspectives KW - systematic review N2 - Background: In the last decade, diabetes management has begun to transition to technology-based care, with young people being the focus of many technological advances. Yet, detailed insights into the experiences of young people and their caregivers of using technology to manage type 1 diabetes mellitus are lacking. Objective: The objective of our study was to describe the breadth of experiences and perspectives on diabetes technology use among children and adolescents with type 1 diabetes mellitus and their caregivers. Methods: This systematic literature review used integrated thematic analysis to guide a narrative synthesis of the included studies. We analyzed the perspectives and experiences of young people with type 1 diabetes mellitus and their caregivers reported in qualitative studies, quantitative descriptive studies, and studies with a mixed methods design. Results: Seventeen articles met the inclusion criteria, and they included studies on insulin pump, glucose sensors, and remote monitoring systems. The following eight themes were derived from the analysis: (1) expectations of the technology prior to use, (2) perceived impact on sleep and overnight experiences, (3) experiences with alarms, (4) impact on independence and relationships, (5) perceived usage impact on blood glucose control, (6) device design and features, (7) financial cost, and (8) user satisfaction. While many advantages of using diabetes technology were reported, several challenges for its use were also reported, such as cost, the size and visibility of devices, and the intrusiveness of alarms, which drew attention to the fact that the user had type 1 diabetes mellitus. Continued use of diabetes technology was underpinned by its benefits outweighing its challenges, especially among younger people. Conclusions: Diabetes technologies have improved the quality of life of many young people with type 1 diabetes mellitus and their caregivers. Future design needs to consider the impact of these technologies on relationships between young people and their caregivers, and the impact of device features and characteristics such as size, ease of use, and cost. UR - http://diabetes.jmir.org/2021/1/e20973/ UR - http://dx.doi.org/10.2196/20973 UR - http://www.ncbi.nlm.nih.gov/pubmed/33528374 ID - info:doi/10.2196/20973 ER - TY - JOUR AU - Yang, Siyu AU - Chen, Yijing AU - Zhou, Leshan AU - Huang, Yuting AU - Dai, Jiahui PY - 2021/1/27 TI - Willingness to Adopt mHealth Among Chinese Parents During the COVID-19 Outbreak: Cross-sectional Questionnaire Study JO - JMIR Mhealth Uhealth SP - e23155 VL - 9 IS - 1 KW - mHealth KW - parents KW - child health at home KW - COVID-19 N2 - Background: Parental involvement in mobile health (mHealth) to consult with medical professionals appears to be prevalent in China with the rapid development of the internet. More parents with busy jobs have chosen to use mHealth. During the ongoing COVID-19 outbreak, mHealth can assist with health promotion, directions for medication use, and disease diagnosis via online chat and video consultation without contacting others. To our knowledge, no studies have been performed to explore the role of mHealth in parents? attitudes toward child health care at home during the COVID-19 outbreak. Objective: This study aims to identify the associated factors of willingness to adopt mHealth among Chinese parents during the COVID-19 outbreak and to explore the correlation between the frequency of adopting mHealth and parents? attitudes toward child health care at home. Methods: Chinese parents were asked to complete an online survey from January 25 to February 15, 2020. The questionnaire comprised of two parts with a total of 16 items, including parents? demographic variables and attitudes toward child health care at home. By multivariate logistic regression, we explored factors associated with parents? willingness to adopt mHealth during the COVID-19 outbreak. Pearson chi-square tests were used to reveal the correlation between the frequency of adopting mHealth and parents? attitudes toward child health care at home. Results: A total of 254 parents enrolled, and 202 (79.5%) parents were willing to adopt mHealth during the COVID-19 outbreak. Parents? age (26-35 years: adjusted odds ratio [AOR] 8.114, 95% CI 1.471-44.764), parents? interest in the COVID-19 pandemic (moderate: AOR 8.753, 95% CI 2.009-38.127; high: AOR 22.194, 95% CI 5.509-89.411), the source that recommended mHealth (medical health providers: AOR 4.257, 95% CI 1.439-12.596), the presence of chronic disease in their children (yes: AOR 20.844, 95% CI 4.600-94.443), parents? duration of daily internet use (4-6 hours: AOR 6.487, 95% CI 1.870-22.495; >6 hours: AOR 8.766, 95% CI 1.883-40.804), and adoption of mHealth before the COVID-19 outbreak (yes: AOR 3.413, 95% CI 1.234-9.444) were significantly correlated with the parents? willingness to adopt mHealth during the COVID-19 outbreak. The frequency of mHealth use among parents was correlated with their behaviors in regard to handwashing (?26=18.967, P=.004), mask wearing (?26=45.364, P<.001), frequency of leaving the home (?26=16.767, P=.01), room disinfection and ventilation (?26=19.515, P=.003), temperature checking (?26=17.47, P=.007), and mental health care of children (?26=63.810, P<.001) during the COVID-19 pandemic. Conclusions: We found various objective factors that were associated with parents? willingness to adopt mHealth during the COVID-19 outbreak. Overall, parents? willingness to adopt mHealth was high. The frequency of mHealth use among parents was correlated with their attitudes toward child health care at home. The option of mHealth to patients at home during the COVID-19 outbreak would be beneficial for education and improvement in self-management of child health care at home. UR - http://mhealth.jmir.org/2021/1/e23155/ UR - http://dx.doi.org/10.2196/23155 UR - http://www.ncbi.nlm.nih.gov/pubmed/33406052 ID - info:doi/10.2196/23155 ER - TY - JOUR AU - Rutland, B. Sarah AU - Bergquist, Palmer Rikard AU - Hager, Andreas AU - Geurs, Robin AU - Mims, Cathy AU - Gutierrez, H. Hector AU - Oates, R. Gabriela PY - 2021/1/26 TI - A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings JO - JMIR Form Res SP - e19413 VL - 5 IS - 1 KW - cystic fibrosis KW - mHealth N2 - Background: Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision making. Objective: The aim of this study is to adapt a mobile health (mHealth) app originally developed in Sweden to the needs of patients, families, and health care providers in a CF center in the United States and to test it as a platform for sharing patient-generated health data with the CF health care team. Methods: Focus groups with health care providers of patients with CF, adolescents with CF, and caregivers of children with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of patient-generated health data to a secure Research Electronic Data Capture database was tested. Protocols for data management and clinical follow-up were also developed. Results: A total of 5 focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the health care team; language and presentation; sharing and privacy; and settings and accounts. Overall, health care providers recommended changes to align the mHealth platform with US standards of care, people with CF and their caregivers requested more tracking functionalities, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta testers of the modified platform reported issues related to translatability to US environment and various bugs. Conclusions: This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered to meet both end users? needs and evidence-based practice recommendations. UR - http://formative.jmir.org/2021/1/e19413/ UR - http://dx.doi.org/10.2196/19413 UR - http://www.ncbi.nlm.nih.gov/pubmed/33496667 ID - info:doi/10.2196/19413 ER - TY - JOUR AU - Ferré-Grau, Carme AU - Raigal-Aran, Laia AU - Lorca-Cabrera, Jael AU - Lluch-Canut, Teresa AU - Ferré-Bergadà, Maria AU - Lleixá-Fortuño, Mar AU - Puig-Llobet, Montserrat AU - Miguel-Ruiz, Dolores Maria AU - Albacar-Riobóo, Núria PY - 2021/1/22 TI - A Mobile App?Based Intervention Program for Nonprofessional Caregivers to Promote Positive Mental Health: Randomized Controlled Trial JO - JMIR Mhealth Uhealth SP - e21708 VL - 9 IS - 1 KW - clinical trial KW - caregiver KW - mobile phone app KW - intervention program KW - positive mental health KW - mobile health KW - health promotion KW - randomized controlled trial KW - nursing KW - caregiving KW - technology N2 - Background: While nonprofessional caregivers often experience a sense of fulfillment when they provide care, there is also a significant risk of emotional and physical burnout. Consequently, this can negatively affect both the caregiver and the person being cared for. Intervention programs can help empower nonprofessional caregivers of people with chronic diseases and develop solutions to decrease the physical and psychological consequences resulting from caregiving. However, most clinically tested intervention programs for nonprofessional caregivers require face-to-face training, and many caregivers encounter obstacles that hinder their participation in such programs. Consequently, it is necessary to design internet-based intervention programs for nonprofessional caregivers that address their needs and test the efficacy of the programs. Objective: The aim of this study was to evaluate the effectiveness of a smartphone app?based intervention program to increase positive mental health for nonprofessional caregivers. Methods: This study was a randomized controlled trial of 3 months? duration. A total of 152 caregivers over 18 years of age with a minimum of 4 months? experience as nonprofessional caregivers were recruited from primary health care institutions. Nonprofessional caregivers were randomized into two groups. In the intervention group, each caregiver installed a smartphone app and used it for 28 days. This app offered them daily activities that were based on 10 recommendations to promote positive mental health. The level of positive mental health, measured using the Positive Mental Health Questionnaire (PMHQ), and caregiver burden, measured using the 7-item short-form version of the Zarit Caregiver Burden Interview (ZBI-7), were the primary outcomes. Users? satisfaction was also measured. Results: In all, 113 caregivers completed the study. After the first month of the intervention, only one factor of the PMHQ, F1?Personal satisfaction, showed a significant difference between the groups, but it was not clinically relevant (0.96; P=.03). However, the intervention group obtained a higher mean change for the overall PMHQ score (mean change between groups: 1.40; P=.24). The results after the third month of the intervention showed an increment of PMHQ scores. The mean difference of change in the PMHQ score showed a significant difference between the groups (11.43; P<.001; d=0.82). Significant changes were reported in 5 of the 6 factors, especially F5?Problem solving and self-actualization (5.69; P<.001; d=0.71), F2?Prosocial attitude (2.47; P<.001; d=1.18), and F3?Self-control (0.76; P=.03; d=0.50). The results of the ZBI-7 showed a decrease in caregiver burden in the intervention group, although the results were inconclusive. Approximately 93.9% (46/49) of the app users indicated that they would recommend the app to other caregivers and 56.3% (27/49) agreed that an extension of the program?s duration would be beneficial. Conclusions: The app-based intervention program analyzed in this study was effective in promoting positive mental health and decreasing the burden of caregivers and achieved a high range of user satisfaction. This study provides evidence that mobile phone app?based intervention programs may be useful tools for increasing nonprofessional caregivers? well-being. The assessment of the effectiveness of intervention programs through clinical trials should be a focus to promote internet-based programs in health policies. Trial Registration: ISRCTN Registry ISRCTN14818443; http://www.isrctn.com/ISRCTN14818443 International Registered Report Identifier (IRRID): RR2-10.1186/s12889-019-7264-5 UR - http://mhealth.jmir.org/2021/1/e21708/ UR - http://dx.doi.org/10.2196/21708 UR - http://www.ncbi.nlm.nih.gov/pubmed/33480852 ID - info:doi/10.2196/21708 ER - TY - JOUR AU - Thompson, P. Alison AU - MacDonald, E. Shannon AU - Wine, Eytan AU - Scott, D. Shannon PY - 2021/1/20 TI - Understanding Parents? Experiences When Caring for a Child With Functional Constipation: Interpretive Description Study JO - JMIR Pediatr Parent SP - e24851 VL - 4 IS - 1 KW - constipation KW - child KW - parents KW - caregivers KW - qualitative research N2 - Background: Pediatric functional constipation (FC) is a common but serious medical condition. Despite significant effects on children, families, and the health care system, the condition is typically undertreated. Parents carry the primary responsibility for complex treatment programs; therefore, understanding their experiences and needs may offer a critical perspective toward improving clinical care. Objective: The aim of this study is to understand and give voice to parents? experiences and information needs when caring for a child with FC. The ultimate objective is to build an evidence base suitable for creating a digital knowledge translation tool to better support parents caring for a child with FC. Methods: This qualitative design used an interpretive description methodology to generate findings aimed at improving clinical care. One-on-one, in-depth interviews were completed either in person or through web-based teleconferencing to explore parents? perspectives. Data collection and analysis occurred concurrently. Results: Analysis of 16 interviews generated 4 major themes: living in the shadows; not taken seriously, with a subtheme of persevering and advocating; missing information and misinformation; and self-doubt and strained relationships. One minor theme of affirmative influences that foster resilience and hope was identified. Conclusions: Parents have unmet needs for support and information related to pediatric FC. To address gaps in current care provision, decision makers may consider interventions for clinicians, resources for parents, and shifting care models to better meet parents? needs. UR - http://pediatrics.jmir.org/2021/1/e24851/ UR - http://dx.doi.org/10.2196/24851 UR - http://www.ncbi.nlm.nih.gov/pubmed/33470939 ID - info:doi/10.2196/24851 ER - TY - JOUR AU - Su, Pen-Hua AU - Yang, Chen AU - Chao, Mei-Chyn AU - Chiang, Chung-Lin PY - 2021/1/15 TI - Monitoring Adherence Rate to Growth Hormone Therapy and Growth Outcomes in Taiwanese Children Using Easypod Connect: Observational Study JO - JMIR Pediatr Parent SP - e14774 VL - 4 IS - 1 KW - growth hormone KW - adherence KW - easypod KW - eHealth N2 - Background: Adherence to growth hormone therapy is difficult to detect reliably. Devices such as easypod have been developed for electronic recording of injections. The easypod connect observational study (ECOS) was an open-label, observational, multinational, phase IV study conducted in 24 countries around the world. The final results from ECOS in the Taiwanese cohort are reported in this paper. Objective: This study aimed to evaluate the adherence and long-term outcomes of growth hormone therapy in pediatric subjects using the easypod electromechanical device. Methods: Subjects (aged 2-18 years or >18 years without fusion of growth plates) who received Saizen (recombinant human growth hormone, somatropin) via the easypod device were enrolled in this study. The primary objective was to assess the level of adherence in subjects receiving Saizen via easypod. Results: In Taiwan, a total of 35 and 13 children fulfilled the criteria of full analysis set and complete analysis set, respectively. The mean (SD) age of the complete analysis set was 12.08 (2.72) years. All subjects were growth hormone?naïve, with 38% (5/13) females. The mean adherence rates of 13 subjects were 87.6% at 3 months and 84.3% at 6 months, that of 8 subjects was 81.0% at 9 months, and that of 4 subjects was 91.6% at 1 year. After 1 year of treatment, subjects had a median (Q1:Q3) change in height SD score of 0.30 (0.06:0.48), median height velocity of 6.50 (4.33:8.24) cm/year, and median change in height velocity SD score of 1.81 (?0.04:3.52). Conclusions: With the easypod device, patients with inadequate adherence and poor response to treatment can be identified. Adherence to growth hormone therapy administered via easypod was generally high in the first year of treatment but the adherence gradually decreased over time. Overall, growth outcomes after 1 year indicated a positive growth response to growth hormone treatment. Future efforts should be focused on personalized management of adherence by using the easypod system. UR - https://pediatrics.jmir.org/2021/1/e14774 UR - http://dx.doi.org/10.2196/14774 UR - http://www.ncbi.nlm.nih.gov/pubmed/33448936 ID - info:doi/10.2196/14774 ER - TY - JOUR AU - Patel, T. Atul AU - Wein, Theodore AU - Bahroo, B. Laxman AU - Wilczynski, Ophélie AU - Rios, D. Carl AU - Murie-Fernández, Manuel PY - 2020/12/7 TI - Perspective of an International Online Patient and Caregiver Community on the Burden of Spasticity and Impact of Botulinum Neurotoxin Therapy: Survey Study JO - JMIR Public Health Surveill SP - e17928 VL - 6 IS - 4 KW - spasticity KW - activities of daily living KW - quality of life KW - survey methodology N2 - Background: Patient- and caregiver-reported data are lacking on the burden of spasticity, and the impact of botulinum neurotoxin type A (BoNT-A) treatment for this condition, on patients' daily lives. As recommended in recent guidance from the US Food and Drug Administration, online patient communities can represent a platform from which to gather specific information outside of a clinical trial setting on the burden of conditions experienced by patients and caregivers and their views on treatment options in order to inform evidence-based medicine and drug development. Objective: The objective of our study is to characterize spasticity symptoms and their associated burdens on Western European and US patients and caregivers in the realms of work, daily activities, quality of life (QoL), as well as the positive and negative impacts of treatment with BoNT-A (cost, time, QoL) using Carenity, an international online community for people with chronic health conditions. Methods: We performed a noninterventional, multinational survey. Eligible participants were 18 years old or older and had, or had cared for, someone with spasticity who had been treated with BoNT-A for at least 1 year. Patients and caregivers were asked to complete an internet-based survey via Carenity; caregivers reported their own answers and answered on behalf of their patients. Questions included the burden of spasticity on the ability to work, functioning, daily-living activities, and QoL, the impact of BoNT A therapy on patients' lives, and the potential benefits of fewer injections. Results: There were 615 respondents (427 patients and 188 caregivers). The mean age of patients and caregivers was 41.7 years and 38.6 years, respectively, and the most commonly reported cause of spasticity was multiple sclerosis. Caregivers were most often the parents (76/188, 40%) or another family member (51/188, 27%) of their patients. Spasticity had a clear impact on patients' and caregivers' lives, including the ability to work and injection costs. For patients, spasticity caused difficulties with activities of daily living and reduced QoL indices. The median number of BoNT-A injections was 4 times per year, and 92% (393/427) of patients reported that treatment improved their overall satisfaction with life. Regarding the BoNT-A injection burden, the greatest patient-reported challenges were the cost and availability of timely appointments. Overall, 86% (368/427) of patients believed that a reduced injection frequency would be beneficial. Caregivers answering for their patients gave largely similar responses to those reported by patients. Conclusions: Spasticity has a negative impact on both patients' and caregivers' lives. All respondents reported that BoNT A treatment improved their lives, despite the associated challenges. Patients believed that reducing the frequency of BoNT-A injections could alleviate practical issues associated with treatment, implying that a longer-acting BoNT-A injection would be well received. UR - http://publichealth.jmir.org/2020/4/e17928/ UR - http://dx.doi.org/10.2196/17928 UR - http://www.ncbi.nlm.nih.gov/pubmed/33284124 ID - info:doi/10.2196/17928 ER - TY - JOUR AU - Beran, Tanya AU - Pearson, Reynolds Jacqueline AU - Lashewicz, Bonnie AU - Baggott, Sandy PY - 2020/11/19 TI - Perspectives of Child Life Specialists After Many Years of Working With a Humanoid Robot in a Pediatric Hospital: Narrative Design JO - J Med Internet Res SP - e23496 VL - 22 IS - 11 KW - child life KW - support KW - pediatric KW - distraction KW - robotics KW - human-robot interaction N2 - Background: Child life specialists (CLSs) play an important role in supporting patients and their families during their visits to a children?s hospital. Although CLSs are equipped with considerable expertise to support families during some of the most difficult moments of their lives, we introduced an additional resource to them in the form of a humanoid robot named MEDi. Objective: The aim of this study is to explore the experiences of CLSs using a robot to support children. Methods: We interviewed 7 CLSs who had worked with this robot for several years. The transcribed interviews were analyzed using open and axial coding. Results: The first main theme that emerged was the process of navigating from fear to friendship in learning to use a humanoid robot for therapeutic support. The second major theme was MEDi as a source of connection and support to children. CLSs? perceptions of MEDi as an adaptable resource and working with the limits of MEDi constituted the last 2 themes. Conclusions: These descriptions show how CLSs can incorporate a robot into their practice. UR - http://www.jmir.org/2020/11/e23496/ UR - http://dx.doi.org/10.2196/23496 UR - http://www.ncbi.nlm.nih.gov/pubmed/33211014 ID - info:doi/10.2196/23496 ER - TY - JOUR AU - Titgemeyer, Catrin Sarah AU - Schaaf, Patrick Christian PY - 2020/11/19 TI - Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis JO - JMIR Pediatr Parent SP - e21694 VL - 3 IS - 2 KW - pediatric rare diseases KW - rare diseases KW - support group KW - online support KW - Facebook support group KW - social media KW - parent support KW - support group privacy KW - counseling N2 - Background: Loneliness, social isolation, and feeling disconnected from society are commonly experienced by parents of children with rare diseases and are, among others, important reasons for special supportive care needs. Social networking platforms are increasingly used for health communication, information exchange, and support. In the field of rare pediatric diseases, qualitative studies have shown that Facebook online support groups are utilized by and beneficial for persons affected by rare pediatric diseases. Nonetheless, the extent of this usage has not been investigated. Objective: This study aims to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for rare pediatric disease support groups and to explore factors that influence a disease?s representation on Facebook. These results potentially offer important insights for future public health initiatives and give direction to further research that can give much needed support to parents of children with rare diseases. Methods: We determined rare pediatric diseases using the inventory of the online portal Orphanet. Facebook support groups were identified by searching 5 synonymous disease descriptions using the group category search bar. Disease- and group-describing parameters were statistically analyzed using standard descriptive statistical methods. Results: 6398 Facebook support groups, representing 826 diseases (19.5% of all searched diseases), were found. 69% are private groups. Group type, size, activity (sum of posts, comments, and reactions calculated by Facebook), new memberships, and language varied largely between groups (member count: minimum 1, maximum 23,414; activity last 30 days: minimum 0, maximum 3606). The highest percentage of awareness and information groups was found for teratogenic diseases (18/68, 26%). The odds of finding a Facebook group increased according to the level of information available about the disease: known prevalence (odds ratio [OR] 3.98, 95% CI 3.39-4.66, P<.001), known disease type (OR 3.15, 95% CI 2.70-3.68, P<.001), and known inheritance mode (OR 2.06, 95% CI 1.68-2.52, P<.001) were all associated with higher odds of finding a Facebook group, as was dominant compared to nondominant inheritance (OR 2.05, 95% CI 1.74-3.42, P<.001). The number of groups per disease increased with higher prevalence. Conclusions: Facebook is widely used as a tool for support groups for rare pediatric diseases and continues to be relevant. Two-thirds of the groups are private groups, indicating group participants? need for privacy, which should be further explored. The advantages and limitations of Facebook as a tool for support groups in the field of rare diseases should be further investigated as it will allow health professionals to use Facebook more meaningfully in their counseling and guidance of affected individuals and their family members. UR - http://pediatrics.jmir.org/2020/2/e21694/ UR - http://dx.doi.org/10.2196/21694 UR - http://www.ncbi.nlm.nih.gov/pubmed/33211019 ID - info:doi/10.2196/21694 ER - TY - JOUR AU - Pletta, H. Karen AU - Kerr, R. Bradley AU - Eickhoff, C. Jens AU - Allen, S. Gail AU - Jain, R. Sanjeev AU - Moreno, A. Megan PY - 2020/11/9 TI - Pediatric Asthma Action Plans: National Cross-Sectional Online Survey of Parents' Perceptions JO - JMIR Pediatr Parent SP - e21863 VL - 3 IS - 2 KW - pediatric asthma KW - asthma action plan KW - parent KW - online survey KW - self-efficacy KW - daily living factors KW - parental work KW - school absence KW - school management KW - caregiver management KW - child activity KW - primary care provider KW - pediatrician KW - asthma specialist N2 - Background: Asthma Action Plans (AAPs) are recommended for pediatric patients to help improve asthma control. Studies have shown variable results for unscheduled doctor and emergency room visits. AAPs may have an impact on parental self-efficacy for asthma management as well as on other daily living factors that are valuable for patients and families, such as the number of missed school days and parental workdays, and on school and caregiver management. Objective: The purpose of this study is to understand parent perceptions of AAPs. The goals of this analysis were threefold, including examining (1) the association between pediatric AAPs and parental self-efficacy, (2) parent perceptions of the helpfulness of an AAP for daily living factors, and (3) associations with the type of provider who gave the AAP (a primary care provider or an asthma specialist). Methods: A national cross-sectional online survey was completed in October 2018 by parents of children with asthma aged 0-17 years. Survey questions included the presence or absence of a pediatric AAP, the Bursch Parental Self-efficacy for Asthma scale, parental perceptions of the AAP's helpfulness with regard to daily living factors ranked on a 5-point Likert scale, and the provider type who gave the AAP. Survey responses were summarized in terms of percentages or means and standard deviations. A 2-sample t test and analysis of covariance were used to compare self-efficacy for asthma and parental-perception-of-helpfulness scores between subjects with an AAP versus subjects without an AAP. All reported P values were 2-sided. Results: A total of 704 parents with a child with asthma completed the survey. The parents had a mean age of 37.5 years (SD 10.9), and 82% (577/704) were women and 18% (127/704) were men. Most (564/704, 80%) parents had an AAP for their child; 65% (367/564) were written, 51% (286/564) were online, and 84% (474/564) were available at school. The Bursch Self-efficacy scale was significantly higher for parents with an AAP (mean 57.7, SD 8.6) versus no AAP (mean 55.1, SD 9.9; P<.001). Parents reported that they agreed/strongly agreed that an AAP was helpful for daily living factors, including managing asthma (446/544, 82%), decreased parental missed workdays (367/544, 68%), decreased child missed-school days (396/542, 73%), and for when a child is at school (422/541 78%), with other caregivers (434/543, 80%), doing normal activities (421/540 78%), and leading a normal life (437/540 81%). Parents agreed/strongly agreed that an AAP was helpful from all provider types: a pediatric provider (583/704, 82.8%), a family practice provider (556/704, 79%), and an asthma specialist (594/704, 84.4%). There was no significant difference (P=.53) between the type of provider who gave the AAP. Conclusions: Parents who had pediatric AAPs for their children reported increased parental self-efficacy compared to those who did not have AAPs. Parents found AAPs helpful for decreasing missed time from work and school, and for asthma management when at home, school, and with other caregivers. Significant AAP helpfulness was seen regardless of the provider who gave the AAP, the parent's education, and income level. Findings support the usefulness of pediatric AAPs for families and the development of easily sharable electronic AAPs for children. UR - https://pediatrics.jmir.org/2020/2/e21863 UR - http://dx.doi.org/10.2196/21863 UR - http://www.ncbi.nlm.nih.gov/pubmed/33164900 ID - info:doi/10.2196/21863 ER - TY - JOUR AU - Xu, Xiaomeng AU - Griva, Konstadina AU - Koh, Mark AU - Lum, Elaine AU - Tan, Shin Woan AU - Thng, Steven AU - Car, Josip PY - 2020/10/29 TI - Creating a Smartphone App for Caregivers of Children With Atopic Dermatitis With Caregivers, Health Care Professionals, and Digital Health Experts: Participatory Co-Design JO - JMIR Mhealth Uhealth SP - e16898 VL - 8 IS - 10 KW - atopic dermatitis KW - eczema KW - mobile phone KW - telehealth N2 - Background: Smartphone apps could support patients and caregivers in disease self-management. However, as patients? experiences and needs might not always align with clinical judgments, the eliciting and engaging of perspectives of all stakeholders in the smartphone app design process is of paramount importance. Objective: The aims of this study are to better understand the needs of and challenges facing caregivers and health care professionals (HCPs) who care for children with atopic dermatitis (AD) and to explore the desirable features and content of a smartphone app that would support AD self-management. Methods: This study adopted a qualitative participatory co-design methodology involving 3 focus group discussions: workshop one focused on caregivers; workshop two engaged with HCPs; and in the last workshop, caregivers and digital health experts were asked to design the wireframe prototype. The participants completed a sociodemographic questionnaire, a technology acceptance questionnaire, and a workshop evaluation form. Results: Twelve caregivers participated in the first workshop, and 10 HCPs participated in the second workshop. Eight caregivers and 4 digital health experts attended the third workshop. Three superordinate themes that reflected caregivers? and HCPs? challenges and needs were identified: empowerment by education, confusion over treatment, and emotional impact. Workshop participants also raised a series of suggestions on the features and contents of the AD self-management app, which informed the last co-design workshop, and described their needs and challenges. In the last workshop, the participants developed a wireframe prototype of the app following the identified requirements and recommendations. Conclusions: The co-design approach was found to be a successful way of engaging with the participants, as it allowed them to express their creativity and helped us to articulate the root of the clinical problems. The co-design workshop was successful in creating and generating new ideas and solutions for smartphone app development. UR - http://mhealth.jmir.org/2020/10/e16898/ UR - http://dx.doi.org/10.2196/16898 UR - http://www.ncbi.nlm.nih.gov/pubmed/33118949 ID - info:doi/10.2196/16898 ER - TY - JOUR AU - Rabba, Stacey Aspasia AU - Dissanayake, Cheryl AU - Barbaro, Josephine PY - 2020/9/30 TI - Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design JO - JMIR Pediatr Parent SP - e15786 VL - 3 IS - 2 KW - autism KW - diagnosis KW - parents KW - support KW - co-design KW - eHealth N2 - Background: The internet provides an ideal avenue to share information, advice, and support regarding autism. However, many websites lack quality control and rarely provide a one-stop resource for families to access necessary, evidence-based information. Objective: This study aims to use participatory action research (PAR) with end users (ie, parents) and clinicians to develop a web-based resource (Pathways Beyond Diagnosis) to improve timely access to quality, evidence-based information, and support for families after their child is diagnosed with autism. Methods: The PAR approach involves 4 phases: (1) cooperative researcher-stakeholder planning, (2) cooperative researcher-stakeholder?based action, (3) stakeholder observation, and (4) cooperative researcher-stakeholder reflection. A total of 15 participants (parents, n=3; clinicians, n=9; and researchers, n=3) attended individual or group participatory design workshops. This was followed by the translation of knowledge and ideas generated during the workshops to produce mockups of webpages and content, rapid prototyping, and one-on-one consultations with end users to assess the usability of the website developed. Results: A total of 3 participatory design workshops were held with the participants, each followed by a knowledge translation session. At the end of the PAR cycle, an alpha prototype of the website was built and a series of one-on-one end user consultation sessions were conducted. The PAR cycle revealed the importance of 6 key topic areas (understanding autism, accessing services, support, gaining funding, putting it all together, and looking into the future) associated with the time of diagnosis, which were incorporated into the beta version of the website. Conclusions: The development of the Pathways Beyond Diagnosis website using PAR ensures that families have ready access to practical and evidence-based information following a young child?s diagnosis. The website guides families to access relevant, reputable, and evidence-based information in addition to summarizing key challenges encountered after diagnosis (ie, grief, sharing the diagnosis) and the importance of self-care. UR - http://pediatrics.jmir.org/2020/2/e15786/ UR - http://dx.doi.org/10.2196/15786 UR - http://www.ncbi.nlm.nih.gov/pubmed/32996890 ID - info:doi/10.2196/15786 ER - TY - JOUR AU - Siedlikowski, Maia AU - Rauch, Frank AU - Tsimicalis, Argerie PY - 2020/9/22 TI - Giving Children With Osteogenesis Imperfecta a Voice: Participatory Approach for the Development of the Interactive Assessment and Communication Tool Sisom OI JO - J Med Internet Res SP - e17947 VL - 22 IS - 9 KW - child health KW - symptom assessment, communication, mobile apps, software N2 - Background: Children with osteogenesis imperfecta (OI) experience acute and chronic symptoms that expose them to physical, mental, and social challenges. Empowering these children by involving them in their care can help them to cope with OI. Sisom is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic illnesses express their symptoms. This tool has not yet been adapted to the unique needs of OI. Objective: The aim of this study was to develop a Sisom OI paper prototype by seeking the perspectives of end users. Methods: A participatory approach was adopted to develop the prototype overseen by an expert panel of 9 clinicians at a university-affiliated pediatric hospital. Purposive sampling was used to recruit 12 children with OI who were aged 6-12 years. The study was carried out over the course of 3 feedback cycles. Data were deductively interpreted using content analysis techniques. Results: Overall, 64% (57/89) of the Sisom symptoms were deemed relevant for inclusion in Sisom OI, with 42% (37/89) directly incorporated and 22% (20/89) incorporated with changes. In total, 114 symptoms were used to create the prototype, of which 57 were newly generated. The relevant symptoms addressed children?s thoughts and feelings about hospitalization and their wishes for participation in their own care. The new symptoms addressed fractures, body image, and social isolation related to difficulties with accessibility and intimidation. Conclusions: Once developed, Sisom OI will offer clinicians an innovative and child-centered approach to capture children?s perspectives on their condition. UR - http://www.jmir.org/2020/9/e17947/ UR - http://dx.doi.org/10.2196/17947 UR - http://www.ncbi.nlm.nih.gov/pubmed/32960176 ID - info:doi/10.2196/17947 ER - TY - JOUR AU - Kubb, Christian AU - Foran, M. Heather PY - 2020/8/25 TI - Online Health Information Seeking by Parents for Their Children: Systematic Review and Agenda for Further Research JO - J Med Internet Res SP - e19985 VL - 22 IS - 8 KW - information seeking behavior KW - parents KW - child KW - internet KW - health behavior KW - digital health N2 - Background: Parents commonly use the internet to search for information about their child?s health-related symptoms and guide parental health-related decisions. Despite the impact of parental online health seeking on offline health behaviors, this area of research remains understudied. Previous literature has not adequately distinguished searched behaviors when searching for oneself or one`s child. Objective: The purpose of this review is to examine prevalences and associated variables of parent-child online health information seeking; investigate parents? health-related online behavior regarding how they find, use, and evaluate information; and identify barriers and concerns that they experience during the search. Based on this analysis, we develop a conceptual model of potentially important variables of proxy online health information seeking, with a focus on building an agenda for further research. Methods: We conducted a comprehensive systematic literature review of the PsycINFO, JMIR, and PubMed electronic databases. Studies between January 1994 and June 2018 were considered. The conceptual model was developed using an inductive mixed methods approach based on the investigated variables in the study sample. Results: A total of 33 studies met the inclusion criteria. Findings suggest that parents worldwide are heavy online users of health-related information for their children across highly diverse circumstances. A total of 6 studies found high parental health anxiety, with prevalences ranging from 14% to 52%. Although parents reported wishing for more guidance from their pediatrician on how to find reliable information, they rarely discussed retrieved information from the web. The conceptual model of proxy online health information seeking includes 49 variables. Conclusions: This systematic review identifies important gaps regarding the influence of health-related information on parents? health behavior and outcomes. Follow-up studies are required to offer parents guidance on how to use the web for health purposes in an effective way, as well as solutions to the multifaceted problems during or after online health information seeking for their child. The conceptual model with the number of studies in each model category listed highlights how previous studies have hardly considered relational variables between the parent and child. An agenda for future research is presented. UR - http://www.jmir.org/2020/8/e19985/ UR - http://dx.doi.org/10.2196/19985 UR - http://www.ncbi.nlm.nih.gov/pubmed/32840484 ID - info:doi/10.2196/19985 ER - TY - JOUR AU - Iio, Misa AU - Miyaji, Yumiko AU - Yamamoto-Hanada, Kiwako AU - Narita, Masami AU - Nagata, Mayumi AU - Ohya, Yukihiro PY - 2020/8/24 TI - Beneficial Features of a mHealth Asthma App for Children and Caregivers: Qualitative Study JO - JMIR Mhealth Uhealth SP - e18506 VL - 8 IS - 8 KW - children KW - caregivers KW - asthma KW - mobile app KW - proposed beneficial features N2 - Background: mHealth and uHealth apps are available for children with asthma and their caregivers. However, previous studies on mHealth apps for children older than 7 years old with asthma are limited, and most studies on asthma apps do not consider interactions involving communication between children and caregivers. Therefore, a prototype mHealth child asthma app was developed for children and their caregivers, with features of tailored feedback messages in continuing self-management and interactions between children and caregivers. Objective: The aim of this study was to identify the beneficial features of a prototype mHealth app developed for children with asthma and their caregivers. Methods: Children diagnosed with persistent asthma by allergy specialists at the National Center for Child Health and Development were recruited. The features of a prototype mHealth app for children with asthma and their caregivers were investigated using semistructured interviews after they tried the app. Data were analyzed using thematic analysis. Content-characteristic words were named and grouped together as categories to explore themes. Results: We recruited 27 children with asthma aged 2 to 12 years and 26 their caregivers. Findings on the good aspects of the app for children older than 7 years old and caregivers suggested 4 themes (confirmation of asthma knowledge, child-caregiver interaction, design of the app, and child?s interest), and 6 categories were identified. Findings on the good aspects of app for children 7 to 12 years old and caregivers suggested 5 themes (new knowledge, manga as a Japanese-style comic, child?s interest, trigger of self-management, and design and operability), and 11 categories were identified. Findings on the beneficial features of app suggested 6 themes (asthma knowledge, elements for continuous, universal design, notification, monitoring, and functions), and 12 categories were identified. Conclusions: Children with asthma and their caregivers perceived that the good aspects of the app were learning asthma knowledge with fun, including manga; interaction between child and caregiver; and easy-to-read design, such as colors. They wanted not only the asthma knowledge but also the universal design and enhanced elements, monitoring, and notification functions of the app. UR - http://mhealth.jmir.org/2020/8/e18506/ UR - http://dx.doi.org/10.2196/18506 UR - http://www.ncbi.nlm.nih.gov/pubmed/32831181 ID - info:doi/10.2196/18506 ER - TY - JOUR AU - Patton, R. Susana AU - McConville, Andrew AU - Marker, M. Arwen AU - Monzon, D. Alexandra AU - Driscoll, A. Kimberly AU - Clements, A. Mark PY - 2020/8/18 TI - Reducing Emotional Distress for Childhood Hypoglycemia in Parents (REDCHiP): Protocol for a Randomized Clinical Trial to Test a Video-Based Telehealth Intervention JO - JMIR Res Protoc SP - e17877 VL - 9 IS - 8 KW - diabetes mellitus, type 1 KW - telemedicine KW - eHealth KW - child KW - parents KW - hypoglycemia KW - fear N2 - Background: Despite the introduction of new insulin analogs, insulin pumps, and continuous glucose monitoring (CGM), young children with type 1 diabetes mellitus (T1D) remain vulnerable to episodes of hypoglycemia because of their unpredictable eating and activity patterns and high degree of insulin sensitivity. Caregivers and young children living with T1D learn to fear hypoglycemia because it is uncomfortable, unpredictable, and dangerous. Up to 60% of caregivers of young children with T1D report moderate to severe levels of fear of hypoglycemia, and caregiver fear of hypoglycemia relates to lower quality of life for families and suboptimal child glycemic control. Yet, until recently, there have been no studies reporting on a targeted intervention to treat caregiver fear of hypoglycemia in families of young children. Objective: The aim of this project is to conduct a randomized clinical trial of an innovative, video-based telehealth intervention to treat fear of hypoglycemia in caregivers of young children with T1D versus a relevant, age-appropriate attention control intervention. Methods: We created the Reducing Emotional Distress for Childhood Hypoglycemia in Parents (REDCHiP) intervention by merging age-appropriate T1D education and behavioral parenting strategies with cognitive behavioral therapy strategies that are effective for reducing fear and promoting adaptive coping. REDCHiP uses 10 video-based telehealth sessions that are a combination of group and individual sessions. We will recruit up to 180 families of young children with T1D to participate in this clinical trial from two pediatric diabetes clinics located in the midwestern and southern United States. Once families have been enrolled, we will randomize caregivers based on child age (age 2-3 years or 4-5 years), child sex, and family CGM use to participate in the REDCHiP or attention control intervention. Families will complete 3 assessment visits that coincide with study entry, end of treatment, and 3-month posttreatment. At each assessment visit, we will collect questionnaire data from caregivers, accelerometry data from caregivers and children, CGM data from children, and a blood sample to measure glycated hemoglobin levels from children. Results: Recruitment began in July 2019, and enrollment is ongoing. The first wave of intervention delivery began in December 2019. We anticipate completing enrollment in 2023. Final reporting of results will occur within 12 months of the primary completion date. Conclusions: If the REDCHiP intervention is efficacious, next steps will be to examine multiple implementation strategies to determine how best to disseminate the intervention to pediatric diabetes clinics around the world. Trial Registration: ClinicalTrials.gov NCT03914547; https://clinicaltrials.gov/ct2/show/NCT03914547 International Registered Report Identifier (IRRID): PRR1-10.2196/17877 UR - http://www.researchprotocols.org/2020/8/e17877/ UR - http://dx.doi.org/10.2196/17877 UR - http://www.ncbi.nlm.nih.gov/pubmed/32808936 ID - info:doi/10.2196/17877 ER - TY - JOUR AU - Fedele, A. David AU - Cushing, C. Christopher AU - Koskela-Staples, Natalie AU - Patton, R. Susana AU - McQuaid, L. Elizabeth AU - Smyth, M. Joshua AU - Prabhakaran, Sreekala AU - Gierer, Selina AU - Nezu, M. Arthur PY - 2020/5/6 TI - Adaptive Mobile Health Intervention for Adolescents with Asthma: Iterative User-Centered Development JO - JMIR Mhealth Uhealth SP - e18400 VL - 8 IS - 5 KW - asthma KW - mobile health KW - adherence KW - adolescence KW - self-regulation KW - problem-solving KW - adolescent KW - youth N2 - Background: Adolescents diagnosed with persistent asthma commonly take less than 50% of their prescribed inhaled corticosteroids (ICS), placing them at risk for asthma-related morbidity. Adolescents? difficulties with adherence occur in the context of normative developmental changes (eg, increased responsibility for disease management) and rely upon still developing self-regulation and problem-solving skills that are integral for asthma self-management. We developed an adaptive mobile health system, Responsive Asthma Care for Teens (ReACT), that facilitates self-regulation and problem-solving skills during times when adolescents? objectively measured ICS adherence data indicate suboptimal rates of medication use. Objective: The current paper describes our user-centered and evidence-based design process in developing ReACT. We explain how we leveraged a combination of individual interviews, national crowdsourced feedback, and an advisory board comprised of target users to develop the intervention content. Methods: We developed ReACT over a 15-month period using one-on-one interviews with target ReACT users (n=20), national crowdsourcing (n=257), and an advisory board (n=4) to refine content. Participants included 13-17?year-olds with asthma and their caregivers. A total of 280 adolescents and their caregivers participated in at least one stage of ReACT development. Results: Consistent with self-regulation theory, adolescents identified a variety of salient intrapersonal (eg, forgetfulness, mood) and external (eg, changes in routine) barriers to ICS use during individual interviews. Adolescents viewed the majority of ReACT intervention content (514/555 messages, 93%) favorably during the crowdsourcing phase, and the advisory board helped to refine the content that did not receive favorable feedback during crowdsourcing. Additionally, the advisory board provided suggestions for improving additional components of ReACT (eg, videos, message flow). Conclusions: ReACT involved stakeholders via qualitative approaches and crowdsourcing throughout the creation and refinement of intervention content. The feedback we received from participants largely supported ReACT?s emphasis on providing adaptive and personalized intervention content to facilitate self-regulation and problem-solving skills, and the research team successfully completed the recommended refinements to the intervention content during the iterative development process. UR - https://mhealth.jmir.org/2020/5/e18400 UR - http://dx.doi.org/10.2196/18400 UR - http://www.ncbi.nlm.nih.gov/pubmed/32374273 ID - info:doi/10.2196/18400 ER - TY - JOUR AU - Otis, Marisa AU - Zhu, Jack AU - Mustafa-Kutana, N. Suleiman AU - Bernier, V. Angelina AU - Ma Shum, Julio AU - Soros Dupre, A. Arlette AU - Wang, L. Monica PY - 2020/5/1 TI - Testing Usability and Feasibility of a Mobile Educator Tool for Pediatric Diabetes Self-Management: Mixed Methods Pilot Study JO - JMIR Form Res SP - e16262 VL - 4 IS - 5 KW - diabetes mellitus KW - self-management KW - health education KW - mHealth KW - mobile health KW - child health N2 - Background: Mobile interventions hold promise as an intervention modality to engage children in improving diabetes self-management education, attitudes, and behaviors. Objective: This pilot study aimed to explore the usability, acceptability, and feasibility of delivering a mobile diabetes educational tool to parent-child pairs in a clinical setting. Methods: This mixed methods pilot study comprised two concurrent phases with differing study participants. Phase 1 used user testing interviews to collect qualitative data on the usability and acceptability of the tool. Phase 2 used a single-arm pre- and poststudy design to quantitatively evaluate the feasibility and preliminary efficacy of the intervention. Study participants (English-speaking families with youth aged 5-14 years with insulin-dependent diabetes) were recruited from an urban hospital in Massachusetts, United States. In phase 1, parent-child pairs were invited to complete the intervention together and participate in 90-min user testing interviews assessing the tool?s usability and acceptability. Interview transcripts were analyzed using a directed content analysis approach. In phase 2, parent-child pairs were invited to complete the intervention together in the clinical setting. Measures included parental and child knowledge, attitudes, and behaviors related to diabetes management (self-report surveys) and child hemoglobin A1c levels (medical record extractions); data were collected at baseline and 1-month follow-up. Pre- and postoutcomes were compared using paired t tests and the Fisher exact test. Results: A total of 11 parent-child pairs (N=22) participated in phase 1 of the study, and 10 parent-child pairs (N=20) participated in phase 2 of the study. Participants viewed the mobile educational tool as acceptable (high engagement and satisfaction with the layout, activities, and videos) and identified the areas of improvement for tool usability (duration, directions, and animation). Conclusions: The findings from this pilot study suggest that the mobile educational tool is an informative, engaging, and feasible way to deliver diabetes self-management education to parents and children in an urban hospital setting. Data will inform future iterations of this mobile diabetes educational intervention to improve usability and test intervention efficacy. UR - https://formative.jmir.org/2020/5/e16262 UR - http://dx.doi.org/10.2196/16262 UR - http://www.ncbi.nlm.nih.gov/pubmed/32356773 ID - info:doi/10.2196/16262 ER - TY - JOUR AU - Lee, Rachael Rebecca AU - Shoop-Worrall, Stephanie AU - Rashid, Amir AU - Thomson, Wendy AU - Cordingley, Lis PY - 2020/1/30 TI - ?Asking Too Much??: Randomized N-of-1 Trial Exploring Patient Preferences and Measurement Reactivity to Frequent Use of Remote Multidimensional Pain Assessments in Children and Young People With Juvenile Idiopathic Arthritis JO - J Med Internet Res SP - e14503 VL - 22 IS - 1 KW - mHealth KW - pain KW - pain assessment KW - juvenile idiopathic arthritis KW - patient reported outcomes KW - pediatrics N2 - Background: Remote monitoring of pain using multidimensional mobile health (mHealth) assessment tools is increasingly being adopted in research and care. This assessment method is valuable because it is challenging to capture pain histories, particularly in children and young people in diseases where pain patterns can be complex, such as juvenile idiopathic arthritis (JIA). With the growth of mHealth measures and more frequent assessment, it is important to explore patient preferences for the timing and frequency of administration of such tools and consider whether certain administrative patterns can directly impact on children?s pain experiences. Objective: This study aimed to explore the feasibility and influence (in terms of objective and subjective measurement reactivity) of several time sampling strategies in remote multidimensional pain reporting. Methods: An N-of-1 trial was conducted in a subset of children and young people with JIA and their parents recruited to a UK cohort study. Children were allocated to 1 of 4 groups. Each group followed a different schedule of completion of MPT for 8 consecutive weeks. Each schedule included 2 blocks, each comprising 4 different randomized time sampling strategies, with each strategy occurring once within each 4-week block. Children completed MPT according to time sampling strategies: once-a-day, twice-a-day, once-a-week, and as-and-when pain was experienced. Adherence to each strategy was calculated. Participants completed the Patient-Reported Outcomes Measurement Information System Pain Interference Scale at the end of each week to explore objective reactivity. Differences in pain interference scores between time sampling strategies were assessed graphically and using Friedman tests. Children and young people and their parents took part in a semistructured interview about their preferences for different time sampling strategies and to explore subjective reactivity. Results: A total of 14 children and young people (aged 7-16 years) and their parents participated. Adherence to pain reporting was higher in less intense time sampling strategies (once-a-week=63% [15/24]) compared with more intense time sampling strategies (twice-a-day=37.8% [127/336]). There were no statistically significant differences in pain interference scores between sampling strategies. Qualitative findings from interviews suggested that children preferred once-a-day (6/14, 43%) and as-and-when pain reporting (6/14, 43%). Creating routine was one of the most important factors for successful reporting, while still ensuring that comprehensive information about recent pain was captured. Conclusions: Once-a-day pain reporting provides rich contextual information. Although patients were less adherent to this preferred sampling strategy, once-a-day reporting still provides more frequent assessment opportunities compared with other less intense or overburdensome schedules. Important issues for the design of studies and care incorporating momentary assessment techniques were identified. We demonstrate that patient reporting preferences are key to accommodate and are important where data capture quality is key. Our findings support frequent administration of such tools, using daily reporting methods where possible. UR - http://www.jmir.org/2020/1/e14503/ UR - http://dx.doi.org/10.2196/14503 UR - http://www.ncbi.nlm.nih.gov/pubmed/32012051 ID - info:doi/10.2196/14503 ER - TY - JOUR AU - Sinclair, Marlene AU - McCullough, EM Julie AU - Elliott, David AU - Latos-Bielenska, Anna AU - Braz, Paula AU - Cavero-Carbonell, Clara AU - Jamry-Dziurla, Anna AU - João Santos, Ana AU - Páramo-Rodríguez, Lucía PY - 2019/11/25 TI - Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study JO - J Med Internet Res SP - e15847 VL - 21 IS - 11 KW - e-forum KW - social media KW - Web-based survey KW - Facebook KW - STAI KW - Down syndrome KW - cleft lip with or without cleft palate KW - congenital heart defects KW - spina bifida KW - parents KW - ocularcentrism KW - coproduction N2 - Background: Using social media for research purposes is novel and challenging in terms of recruitment, participant knowledge about the research process, and ethical issues. This paper provides insight into the recruitment of European parents of children with specific congenital anomalies to engage in coproduction research by using social media. Secret Facebook groups, providing optimal security, were set up for newly recruited research-aware parents (RAPs) to communicate privately and confidentially with each other and for the research team to generate questions and to interpret findings. Objective: This study aimed to use social media for the recruitment and engagement of parents in research and to determine the research priorities of parents who have children with Down syndrome, cleft lip with or without cleft palate, congenital heart defects, and spina bifida. Methods: The design was exploratory and descriptive with 3 phases. Phase 1 included the recruitment of RAPs and generation of research questions important to them; phase 2 was a Web-based survey, designed using Qualtrics software, and phase 3 included analysis and ranking of the top 10 research questions using an adapted James Lind Alliance approach. Simple descriptive statistics were used for analysis, and ethical approval was obtained from the Ethics Filter Committee of the Institute of Nursing and Health Research, Ulster University. Results: The recruitment of 32 RAPs was a sensitive process, varying in the time taken to consent (mean 51 days). However, parents valued the screening approach using the State-Trait Anxiety Inventory as a measure to ensure their well-being (mean 32.5). In phase 1, RAPs generated 98 research questions. In phase 2, 251 respondents accessed the Web-based survey, 248 consented, and 80 completed the survey, giving a completeness rate of 32.3% (80/248). Most parents used social media (74/80, 92%). Social media, online forums, and meeting in person were ranked the most preferable methods for communication with support groups networks and charities. Most respondents stated that they had a good understanding of research reports (71/80, 89%) and statistics (68/80, 85%) and could differentiate among the different types of research methodologies (62/80, 78%). Phase 3 demonstrated consensus among RAPs and survey respondents, with a need to know the facts about their child?s condition, future health, and psychosocial and educational outcomes for children with similar issues. Conclusions: Social media is a valuable facilitator in the coproduction of research between parents and researchers. From a theoretical perspective, ocularcentrism can be an applicable frame of reference for understanding how people favor visual contact. UR - http://www.jmir.org/2019/11/e15847/ UR - http://dx.doi.org/10.2196/15847 UR - http://www.ncbi.nlm.nih.gov/pubmed/31763986 ID - info:doi/10.2196/15847 ER - TY - JOUR AU - McGar, Brook Ashley AU - Kindler, Christine AU - Marsac, Meghan PY - 2019/11/11 TI - Electronic Health Interventions for Preventing and Treating Negative Psychological Sequelae Resulting From Pediatric Medical Conditions: Systematic Review JO - JMIR Pediatr Parent SP - e12427 VL - 2 IS - 2 KW - telemedicine KW - children KW - caregivers KW - injury KW - chronic disease KW - wounds and injuries KW - depression KW - anxiety N2 - Background: Pediatric medical conditions have the potential to result in challenging psychological symptoms (eg, anxiety, depression, and posttraumatic stress symptoms [PTSS]) and impaired health-related quality of life in youth. Thus, effective and accessible interventions are needed to prevent and treat psychological sequelae associated with pediatric medical conditions. Electronic health (eHealth) interventions may help to meet this need, with the capacity to reach more children and families than in-person interventions. Many of these interventions are in their infancy, and we do not yet know what key components contribute to successful eHealth interventions. Objective: The primary objective of this study was to conduct a systematic review to summarize current evidence on the efficacy of eHealth interventions designed to prevent or treat psychological sequelae in youth with medical conditions. Methods: MEDLINE (PubMed) and PsycINFO databases were searched for studies published between January 1, 1998, and March 1, 2019, using predefined search terms. A total of 2 authors independently reviewed titles and abstracts of search results to determine which studies were eligible for full-text review. Reference lists of studies meeting eligibility criteria were reviewed. If the title of a reference suggested that it might be relevant for this review, the full manuscript was reviewed for inclusion. Inclusion criteria required that eligible studies (1) had conducted empirical research on the efficacy of a Web-based intervention for youth with a medical condition, (2) had included a randomized trial as part of the study method, (3) had assessed the outcomes of psychological sequelae (ie, PTSS, anxiety, depression, internalizing symptoms, or quality of life) in youth (aged 0-18 years), their caregivers, or both, (4) had included assessments at 2 or more time points, and (5) were available in English language. Results: A total of 1512 studies were reviewed for inclusion based on their title and abstracts; 39 articles qualified for full-text review. Moreover, 22 studies met inclusion criteria for the systematic review. Of the 22 included studies, 13 reported results indicating that eHealth interventions significantly improved at least one component of psychological sequelae in participants. Common characteristics among interventions that showed an effect included content on problem solving, education, communication, and behavior management. Studies most commonly reported on child and caregiver depression, followed by child PTSS and caregiver anxiety. Conclusions: Previous research is mixed but suggests that eHealth interventions may be helpful in alleviating or preventing problematic psychological sequelae in youth with medical conditions and their caregivers. Additional research is needed to advance understanding of the most powerful intervention components and to determine when and how to best disseminate eHealth interventions, with the goal of extending the current reach of psychological interventions. UR - http://pediatrics.jmir.org/2019/2/e12427/ UR - http://dx.doi.org/10.2196/12427 UR - http://www.ncbi.nlm.nih.gov/pubmed/31710299 ID - info:doi/10.2196/12427 ER - TY - JOUR AU - Gaziel Yablowitz, Michal AU - Dölle, Sabine AU - Schwartz, G. David AU - Worm, Margitta PY - 2019/08/22 TI - Proximity-Based Emergency Response Communities for Patients With Allergies Who Are at Risk of Anaphylaxis: Clustering Analysis and Scenario-Based Survey Study JO - JMIR Mhealth Uhealth SP - e13414 VL - 7 IS - 8 KW - consumer health informatics KW - anaphylaxis KW - emergency responders KW - social networking KW - telemedicine N2 - Background: Anaphylaxis is a potentially fatal allergic reaction. However, many patients at risk of anaphylaxis who should permanently carry a life-saving epinephrine auto injector (EAI) do not carry one at the moment of allergen exposure. The proximity-based emergency response communities (ERC) strategy suggests speeding EAI delivery by alerting patient-peers carrying EAI to respond and give their EAI to a nearby patient in need. Objectives: This study had two objectives: (1) to analyze 10,000 anaphylactic events from the European Anaphylaxis Registry (EAR) by elicitor and location in order to determine typical anaphylactic scenarios and (2) to identify patients? behavioral and spatial factors influencing their response to ERC emergency requests through a scenario-based survey. Methods: Data were collected and analyzed in two phases: (1) clustering 10,000 EAR records by elicitor and incident location and (2) conducting a two-center scenario-based survey of adults and parents of minors with severe allergy who were prescribed EAI, in Israel and Germany. Each group received a four-part survey that examined the effect of two behavioral constructs?shared identity and diffusion of responsibility?and two spatial factors?emergency time and emergency location?in addition to sociodemographic data. We performed descriptive, linear correlation, analysis of variance, and t tests to identify patients? decision factors in responding to ERC alerts. Results: A total of 53.1% of EAR cases were triggered by food at patients? home, and 46.9% of them were triggered by venom at parks. Further, 126 Israeli and 121 German participants completed the survey and met the inclusion criteria. Of the Israeli participants, 80% were parents of minor patients with a risk of anaphylaxis due to food allergy; their mean age was 32 years, and 67% were women. In addition, 20% were adult patients with a mean age of 21 years, and 48% were female. Among the German patients, 121 were adults, with an average age of 47 years, and 63% were women. In addition, 21% were allergic to food, 75% were allergic to venom, and 2% had drug allergies. The overall willingness to respond to ERC events was high. Shared identity and the willingness to respond were positively correlated (r=0.51, P<.001) in the parent group. Parents had a stronger sense of shared identity than adult patients (t243= ?9.077, P<.001). The bystander effect decreased the willingness of all patients, except the parent group, to respond (F1,269=28.27, P<.001). An interaction between location and time of emergency (F1,473=77.304, P<.001) revealed lower levels of willingness to respond in strange locations during nighttime. Conclusions: An ERC allergy app has the potential to improve outcomes in case of anaphylactic events, but this is dependent on patient-peers? willingness to respond. Through a two-stage process, our study identified the behavioral and spatial factors that could influence the willingness to respond, providing a basis for future research of proximity-based mental health communities. UR - http://mhealth.jmir.org/2019/8/e13414/ UR - http://dx.doi.org/10.2196/13414 UR - http://www.ncbi.nlm.nih.gov/pubmed/31441432 ID - info:doi/10.2196/13414 ER - TY - JOUR AU - Albanese-O'Neill, Anastasia AU - Schatz, A. Desmond AU - Thomas, Nicole AU - Bernhardt, M. Jay AU - Cook, L. Christa AU - Haller, J. Michael AU - Bernier, V. Angelina AU - Silverstein, H. Janet AU - Westen, C. Sarah AU - Elder, H. Jennifer PY - 2019/08/06 TI - Designing Online and Mobile Diabetes Education for Fathers of Children With Type 1 Diabetes: Mixed Methods Study JO - JMIR Diabetes SP - e13724 VL - 4 IS - 3 KW - type 1 diabetes KW - mobile health KW - fathers KW - stakeholder participation N2 - Background: Fathers make unique and central contributions to the health of their children. However, research in type 1 diabetes (T1D) education largely ignores the needs of fathers, including during the development of online and mobile educational materials. Objective: The purpose of this study was to solicit and incorporate input from fathers of children with T1D into the design, content, and infrastructure of a suite of online diabetes self-management education and support (DSMES) resources. Methods: The study took part in three phases: (1) exploratory research, (2) website and subdomain development, and (3) evaluation. Fathers of children with T1D (n=30) completed surveys and semistructured qualitative interviews. Thematic content analysis was used to identify fathers? content and design preferences. An online DSMES website (T1DToolkit.org) and a separate mobile subdomain targeting fathers (Mobile Diabetes Advice for Dads, or mDAD) were developed. A prototype of the site for fathers was evaluated by 33 additional father participants. End user feedback was elicited via survey. Results: Participants in the exploratory phase were enthusiastic about the online diabetes resources. Preferences included high-quality design, availability via mobile phone and tablet, brief text content supplemented with multimedia and interactive features, reminders via text or email, endorsement by medical professionals, and links to scientific evidence. The mDAD subdomain received high usability and acceptability ratings, with 100% of participants very likely or likely to use the site again. Conclusions: The development of eHealth educational platforms for fathers of children with T1D remains an unmet need in optimizing diabetes management. This study incorporated fathers? feedback into the development of a suite of online diabetes education resources. The findings will serve as the basis for future research to assess the clinical efficacy of the website, its subdomain targeting fathers, and additional subdomains targeting unique populations. UR - http://diabetes.jmir.org/2019/3/e13724/ UR - http://dx.doi.org/10.2196/13724 UR - http://www.ncbi.nlm.nih.gov/pubmed/31389338 ID - info:doi/10.2196/13724 ER - TY - JOUR AU - Wysocki, Tim AU - Pierce, Jessica AU - Caldwell, Cindy AU - Aroian, Karen AU - Miller, Louis AU - Farless, Rebecca AU - Hafezzadeh, Ivy AU - McAninch, Terri AU - Lee, M. Joyce PY - 2018/12/17 TI - A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design JO - JMIR Diabetes SP - e16 VL - 3 IS - 4 KW - coping KW - mobile phone KW - parenting KW - social media KW - type 1 diabetes N2 - Background: Management of type 1 diabetes (T1D) among children aged <6 years is exceptionally challenging for parents and caregivers. Metabolic and psychosocial outcomes among very young children with T1D (YC-T1D) are tightly associated with their parents? ability to meet these challenges. There is scant research testing interventions targeting these issues and few resources to equip health care providers with feasible and effective coping strategies for these parents. User-centered design (UCD) of a continuously accessible Web-based resource could be a mechanism for helping parents of YC-T1D cope more effectively with the complex challenges they face by providing them with information, solutions, and emotional support. Objective: The objectives of this paper are to (1) describe the application of UCD principles to the development of a Web-based coping intervention designed by and for parents of very young children (<6 years old) with T1D; (2) illustrate the use of crowdsourcing methods in obtaining the perspectives of parents, health care providers, and Web development professionals in designing and creating this resource; and (3) summarize the design of an ongoing randomized controlled trial (RCT) that is evaluating the effects of parental access to this resource on pertinent child and parent outcomes. Methods: This paper illustrates the application of UCD principles to create a Web-based coping resource designed by and for parents of YC-T1D. A Web-based Parent Crowd, a Health Care Provider Crowd, and a Focus Group of minority parents provided input throughout the design process. A formal usability testing session and design webinars yielded additional stakeholder input to further refine the end product. Results: This paper describes the completed website and the ongoing RCT to evaluate the effects of using this Web-based resource on pertinent parent and child outcomes. Conclusions: UCD principles and the targeted application of crowdsourcing methods provided the foundation for the development, construction, and evaluation of a continuously accessible, archived, user-responsive coping resource designed by and for parents of YC-T1D. The process described here could be a template for the development of similar resources for other special populations that are enduring specific medical or psychosocial distress. The ongoing RCT is the final step in the UCD process and is designed to validate its merits. UR - http://diabetes.jmir.org/2018/4/e16/ UR - http://dx.doi.org/10.2196/diabetes.9926 UR - http://www.ncbi.nlm.nih.gov/pubmed/30559089 ID - info:doi/10.2196/diabetes.9926 ER - TY - JOUR AU - Wang, Jingting AU - Howell, Doris AU - Shen, Nanping AU - Geng, Zhaohui AU - Wu, Fulei AU - Shen, Min AU - Zhang, Xiaoyan AU - Xie, Anwei AU - Wang, Lin AU - Yuan, Changrong PY - 2018/11/19 TI - mHealth Supportive Care Intervention for Parents of Children With Acute Lymphoblastic Leukemia: Quasi-Experimental Pre- and Postdesign Study JO - JMIR Mhealth Uhealth SP - e195 VL - 6 IS - 11 KW - acute lymphoblastic leukemia KW - effectiveness KW - mHealth KW - mobile phone KW - parent KW - supportive care N2 - Background: Acute lymphoblastic leukemia (ALL) is the most common childhood malignancy. Caring for children with ALL is challenging for parents. A mobile health (mHealth) supportive care intervention was developed to meet parents? needs. Objective: This study aims to evaluate the potential effectiveness of this mHealth supportive care intervention on emotional distress, social support, care burden, uncertainty in illness, quality of life, and knowledge. Methods: We conducted a quasi-experimental pre- and postdesign study from June 2015 to January 2016. In total, 101 parents were enrolled in the study, with 50 in the observation group and 51 in the intervention group. Parents in the observation group received the standard health education and were observed for 3 months. Parents in the intervention group received the mHealth supportive care intervention, in addition to the standard health education. The intervention consisted of 2 parts?an Android smartphone app ?Care Assistant (CA)? and a WeChat Official Account. The CA with 8 modules (Personal Information, Treatment Tracking, Family Care, Financial and Social Assistance, Knowledge Center, Self- Assessment Questionnaires, Interactive Platform, and Reminders) was the main intervention tool, whereas the WeChat Official Account was supplementary to update information and realize interaction between parents and health care providers. Data of parents? social support, anxiety, depression, care burden, uncertainty in illness, quality of life, their existing knowledge of ALL and care, and knowledge need were collected before and after the 3-month study period in both groups. For the intervention group, parents? experience of receiving the intervention was also collected through individual interviews. Results: Overall, 43 parents in the observation group and 49 in the intervention group completed the study. Results found that the intervention reduced parents? anxiety (Dint(Post-Pre)=?7.0 [SD 13.1], Dobs(Post-Pre)=?0.4 [SD 15.8], t90=?2.200, P=.03) and uncertainty in illness (Dint(Post-Pre)=?25.0 [SD 8.2], Dobs(Post-Pre)=?19.8 [SD 10.1], t90=?2.761, P=.01), improved parents? social function (Dint(Post-Pre)=9.0 [SD 32.8], Dobs(Post-Pre)=?7.5 [SD 30.3], t90=2.494, P=.01), increased parents? knowledge of ALL and care (Dint(Post-Pre)=28.4 [SD 12.4], Dobs(Post-Pre)=17.2 [SD 11.9], t90=4.407, P<.001), and decreased their need for knowledge (Dint(Post-Pre)=?9.9 [SD 11.6], Dobs(Post-Pre)=?1.9 [SD 6.4], t90=?4.112, P<.001). Qualitative results showed that parents were satisfied with the intervention and their role in the caregiving process. Conclusions: The mHealth intervention in supporting parents of children with ALL is effective. This study is informative for other future studies on providing mHealth supportive care for parents of children with cancer. UR - http://mhealth.jmir.org/2018/11/e195/ UR - http://dx.doi.org/10.2196/mhealth.9981 UR - http://www.ncbi.nlm.nih.gov/pubmed/30455166 ID - info:doi/10.2196/mhealth.9981 ER - TY - JOUR AU - Sezgin, Emre AU - Weiler, Monica AU - Weiler, Anthony AU - Lin, Simon PY - 2018/09/06 TI - Proposing an Ecosystem of Digital Health Solutions for Teens With Chronic Conditions Transitioning to Self-Management and Independence: Exploratory Qualitative Study JO - J Med Internet Res SP - e10285 VL - 20 IS - 9 KW - chronic disease KW - chronic disease management KW - digital health KW - ecosystem KW - qualitative research KW - self-management KW - transition to independence KW - technology-based solutions N2 - Background: Chronic disease management is critical to quality of life for both teen patients with chronic conditions and their caregivers. However, current literature is largely limited to a specific digital health tool, method, or approach to manage a specific disease. Guiding principles on how to use digital tools to support the transition to independence are rare. Considering the physiological, psychological, and environmental changes that teens experience, the issues surrounding the transition to independence are worth investigating to develop a deeper understanding to inform future strategies for digital interventions. Objective: The purpose of this study was to inform the design of digital health solutions by systematically identifying common challenges among teens and caregivers living with chronic diseases. Methods: Chronically ill teens (n=13) and their caregivers (n=13) were interviewed individually and together as a team. Verbal and projective techniques were used to examine teens? and caregivers? concerns in-depth. The recorded and transcribed responses were thematically analyzed to identify and organize the identified patterns. Results: Teens and their caregivers identified 10 challenges and suggested technological solutions. Recognized needs for social support, access to medical education, symptom monitoring, access to health care providers, and medical supply management were the predominant issues. The envisioned ideal transition included a 5-component solution ecosystem in the transition to independence for teens. Conclusions: This novel study systematically summarizes the challenges, barriers, and technological solutions for teens with chronic conditions and their caregivers as teens transition to independence. A new solution ecosystem based on the 10 identified challenges would guide the design of future implementations to test and validate the effectiveness of the proposed 5-component ecosystem. UR - http://www.jmir.org/2018/9/e10285/ UR - http://dx.doi.org/10.2196/10285 UR - http://www.ncbi.nlm.nih.gov/pubmed/30190253 ID - info:doi/10.2196/10285 ER - TY - JOUR AU - Geense, W. Wytske AU - van Gaal, GI Betsie AU - Knoll, L. Jaqueline AU - Maas, M. Nienke AU - Kok, Gerjo AU - Cornelissen, AM Elisabeth AU - Nijhuis-van der Sanden, WG Maria PY - 2018/08/01 TI - Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial JO - J Med Internet Res SP - e245 VL - 20 IS - 8 KW - child KW - chronic kidney failure KW - chronic kidney disease KW - effect evaluation KW - health promotion KW - process evaluation N2 - Background: Parents of children with chronic kidney disease (CKD) experience high levels of stress in the daily management of their child?s illness. Parents need continuously available support and information, yet online support programs are lacking. e-Powered Parents was developed to fill this gap; it is an online program consisting of (1) medical information, (2) an interactive part, and (3) four training modules (stress management, setting limits, communication, and coping). Prior to a large-scale evaluation, we conducted a feasibility study that consisted of an effect study and a process evaluation. Objective: The objectives of our study were to (1) identify the outcome measures that are most likely to capture the potential benefit, (2) evaluate the potential effectiveness and effect size, and (3) evaluate recruitment, reach, the dose received, and context. Methods: We conducted a feasibility study with a two-armed, wait-list randomized controlled trial (RCT). Prior to baseline, parents (n=146) were randomly allocated to group 1 or group 2. After completing the baseline questionnaire, parents in group 1 were given access to e-Powered Parents, while those in group 2 received usual care. At the 6-month follow-up (T1), all parents received a questionnaire and parents in group 2 were given access to e-Powered Parents as well. After 1.5 years, through an extra measurement (T2), we evaluated the effect of long-term exposure. Outcomes were the child?s quality of life (Child Vulnerability Scale), parental stress (Pediatric Inventory for Parents) and fatigue (Multidimensional Fatigue Inventory), self-efficacy in communication with health care professionals (Perceived Efficacy in Patient-Physician Interactions, PEPPI-5), and parental perceptions of family management (Family Management Measure). Floor and ceiling effects and percentage of parents showing no change in scores were calculated. We used linear mixed models to evaluate the potential effectiveness and effect sizes using the intention-to-treat and per-protocol analyses. In the process evaluation, we evaluated recruitment, reach, the dose received, and context using a questionnaire sent to the parents, log-in data, and a focus group interview with health care professionals. Results: At T1 (n=86) and T2 (n=51), no significant effects were found on any of the five outcomes. The PEPPI-5 showed ceiling effects and high percentages of parents showing no change between the measurement times. The information and interactive part of the intervention were used by 84% (57/68) of the parents in group 1 and 49% (32/65) of the parents in group 2. The information pages were visited most often. Overall, 64% (85/133) of the parents logged in to the training platform and 31% (26/85) actually used the training modules. Conclusions: We did not observe any significant effect on any of the outcomes. This could possibly be explained by the minimal use of the intervention and by parents? heterogeneity. For continued participation, we recommend a tailored intervention and further studies to find out whether and how online programs could be used to support parents in the management of their child?s CKD. Trial Registration: Netherlands Trial Registry NTR4808; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4808 (Archived by WebCite at http://www.webcitation.org/719rCicvW) UR - http://www.jmir.org/2018/8/e245/ UR - http://dx.doi.org/10.2196/jmir.9547 UR - http://www.ncbi.nlm.nih.gov/pubmed/30068502 ID - info:doi/10.2196/jmir.9547 ER - TY - JOUR AU - Wikman, Anna AU - Kukkola, Laura AU - Börjesson, Helene AU - Cernvall, Martin AU - Woodford, Joanne AU - Grönqvist, Helena AU - von Essen, Louise PY - 2018/04/18 TI - Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer: Participatory Action Research Approach JO - J Med Internet Res SP - e133 VL - 20 IS - 4 KW - cognitive therapy KW - psychology, clinical KW - e-therapy KW - community participation KW - Sweden N2 - Background: Parenting a child through cancer is a distressing experience, and a subgroup of parents report negative long-term psychological consequences years after treatment completion. However, there is a lack of evidence-based psychological interventions for parents who experience distress in relation to a child?s cancer disease after end of treatment. Objective: One aim of this study was to develop an internet-administered, cognitive behavior therapy?based, psychological, guided, self-help intervention (ENGAGE) for parents of children previously treated for cancer. Another aim was to identify acceptable procedures for future feasibility and efficacy studies testing and evaluating the intervention. Methods: Participatory action research methodology was used. The study included face-to-face workshops and related Web-based exercises. A total of 6 parents (4 mothers, 2 fathers) of children previously treated for cancer were involved as parent research partners. Moreover, 2 clinical psychologists were involved as expert research partners. Research partners and research group members worked collaboratively throughout the study. Data were analyzed iteratively using written summaries of the workshops and Web-based exercises parallel to data collection. Results: A 10-week, internet-administered, cognitive behavior therapy?based, psychological, guided, self-help intervention (ENGAGE) was developed in collaboration with parent research partners and expert research partners. The content of the intervention, mode and frequency of e-therapist support, and the individualized approach for feedback were modified based on the research partner input. Shared solutions were reached regarding the type and timing of support from an e-therapist (eg, initial video or telephone call, multiple methods of e-therapist contact), duration and timing of intervention (eg, 10 weeks, 30-min assessments), and the removal of unnecessary support functions (eg, removal of chat and forum functions). Preferences for study procedures in future studies testing and evaluating the intervention were discussed; consensus was not reached for all aspects. Conclusions: To the best of our knowledge, this study is the first use of a participatory action research approach to develop a psychological intervention for parents of children previously treated for cancer and to identify acceptable study procedures. Involvement of parents with lived experience was vital in the development of a potentially relevant and acceptable intervention for this population. UR - http://www.jmir.org/2018/4/e133/ UR - http://dx.doi.org/10.2196/jmir.9457 UR - http://www.ncbi.nlm.nih.gov/pubmed/29669710 ID - info:doi/10.2196/jmir.9457 ER - TY - JOUR AU - McWilliams, Andrew AU - Reeves, Kelly AU - Shade, Lindsay AU - Burton, Elizabeth AU - Tapp, Hazel AU - Courtlandt, Cheryl AU - Gunter, Andrew AU - Dulin, F. Michael PY - 2018/03/22 TI - Patient and Family Engagement in the Design of a Mobile Health Solution for Pediatric Asthma: Development and Feasibility Study JO - JMIR Mhealth Uhealth SP - e68 VL - 6 IS - 3 KW - engagement KW - pediatric asthma KW - shared decision-making KW - health information technology N2 - Background: Asthma is a highly prevalent, chronic disease with significant morbidity, cost, and disparities in health outcomes. While adherence to asthma treatment guidelines can improve symptoms and decrease exacerbations, most patients receive care that is not guideline-based. New approaches that incorporate shared decision-making (SDM) and health information technology (IT) are needed to positively impact asthma management. Despite the promise of health IT to improve efficiency and outcomes in health care, new IT solutions frequently suffer from a lack of widespread adoption and do not achieve desired results, as a consequence of not involving end-users in design. Objective: To describe a case study of a pediatric asthma SDM health IT solution?s development and demonstrate a methodology for engaging actual patients and families in IT development. Perspectives are shared from the vantage point of the research team and a parent of a child with asthma, who participated on the development team. Methods: We adapted user-centric design principles to engage actual users across three main development phases: project initiation, ideation, and usability testing. To facilitate the necessary level of user engagement, our approach included: (1) a Development Workgroup consisting of patients, caregivers, and providers who met regularly with the research team; and (2) ?real-world users? consisting of patients, caregivers, and providers recruited from a variety of care locations, including safety-net clinics. Results: Using this methodology, we successful partnered with asthma patients and families to create an interactive, digital solution called Carolinas Asthma Coach. Carolinas Asthma Coach incorporates SDM principles to elicit patient information, including goals and preferences, and provides health-literate, tailored education with specific guideline-based recommendations for patients and their providers. Of the patients, caregivers, and providers surveyed, 100% (n=60) said they would recommend Carolinas Asthma Coach to a friend or colleague. Qualitative feedback from users provided support for the usability and engaging nature of the app. Conclusions: This project demonstrates the feasibility and benefits of deploying user-centric design methods that engage real patients and caregivers throughout the health IT design process. UR - http://mhealth.jmir.org/2018/3/e68/ UR - http://dx.doi.org/10.2196/mhealth.8849 UR - http://www.ncbi.nlm.nih.gov/pubmed/29567637 ID - info:doi/10.2196/mhealth.8849 ER - TY - JOUR AU - Hilliard, E. Marisa AU - Eshtehardi, S. Sahar AU - Minard, G. Charles AU - Saber, Rana AU - Thompson, Debbe AU - Karaviti, P. Lefkothea AU - Rojas, Yuliana AU - Anderson, J. Barbara PY - 2018/03/13 TI - Strengths-Based Behavioral Intervention for Parents of Adolescents With Type 1 Diabetes Using an mHealth App (Type 1 Doing Well): Protocol for a Pilot Randomized Controlled Trial JO - JMIR Res Protoc SP - e77 VL - 7 IS - 3 KW - adolescence KW - type 1 diabetes KW - parenting N2 - Background: Supportive parent involvement for adolescents? type 1 diabetes (T1D) self-management promotes optimal diabetes outcomes. However, family conflict is common and can interfere with collaborative family teamwork. Few interventions have used explicitly strengths-based approaches to help reinforce desired management behaviors and promote positive family interactions around diabetes care. Objective: The aim of this protocol was to describe the development of a new, strengths-based behavioral intervention for parents of adolescents with T1D delivered via a mobile-friendly Web app called Type 1 Doing Well. Methods: Ten adolescent-parent dyads and 5 diabetes care providers participated in a series of qualitative interviews to inform the design of the app. The 3- to 4-month pilot intervention will involve 82 parents receiving daily prompts to use the app, in which they will mark the diabetes-related strength behaviors (ie, positive attitudes or behaviors related to living with or managing T1D) their teen engaged in that day. Parents will also receive training on how to observe diabetes strengths and how to offer teen-friendly praise via the app. Each week, the app will generate a summary of the teen?s most frequent strengths from the previous week based on parent reports, and parents will be encouraged to praise their teen either in person or from a library of reinforcing text messages (short message service, SMS). Results: The major outcomes of this pilot study will include intervention feasibility and satisfaction data. Clinical and behavioral outcomes will include glycemic control, regimen adherence, family relationships and conflict, diabetes burden, and health-related quality of life. Conclusions: This strengths-based, mobile health (mHealth) intervention aims to help parents increase their awareness of and efforts to support their adolescents? engagement in positive diabetes-related behaviors. If efficacious, this intervention has the potential to reduce the risk of family conflict, enhance collaborative family teamwork, and ultimately improve diabetes outcomes. Trial Registration: ClinicalTrials.gov NCT02877680; https://clinicaltrials.gov/ct2/show/NCT02877680 (Archived by WebCite at http://www.webcitation.org/6xTAMN5k2) UR - http://www.researchprotocols.org/2018/3/e77/ UR - http://dx.doi.org/10.2196/resprot.9147 UR - http://www.ncbi.nlm.nih.gov/pubmed/29535081 ID - info:doi/10.2196/resprot.9147 ER - TY - JOUR AU - Holtz, E. Bree AU - Murray, M. Katharine AU - Hershey, D. Denise AU - Dunneback, K. Julie AU - Cotten, R. Shelia AU - Holmstrom, J. Amanda AU - Vyas, Arpita AU - Kaiser, K. Molly AU - Wood, A. Michael PY - 2017/04/19 TI - Developing a Patient-Centered mHealth App: A Tool for Adolescents With Type 1 Diabetes and Their Parents JO - JMIR Mhealth Uhealth SP - e53 VL - 5 IS - 4 KW - mHealth KW - qualitative research KW - type 1 diabetes KW - family N2 - Background: Type 1 diabetes (T1D) afflicts approximately 154,000 people under 20 years of age. Three-quarters of adolescents are not achieving glycosylated hemoglobin (HbA1c) targets, which leads to negative health outcomes. Mobile health (mHealth), the use of technology in health, has been used successfully to improve health in many chronic conditions, including diabetes. Objective: The purpose of this study was to use patient-centered research methods to inform and improve the design and functionality of our T1D app, MyT1DHero, and to provide insight for others who are designing a health app for adolescents and parents. Methods: This study included data from focus groups with participants recruited from the Juvenile Diabetes Research Foundation (JDRF) southeast Michigan?s family network. All data collected during the sessions were audio-recorded, transcribed, and coded. Results: Four key themes were identified: (1) diabetes is unpredictable, (2) negative and frustrated communication, (3) motivations to use an app, and (4) feedback specific to our app. Conclusions: A patient-centered approach was used to assist in the development of an app for adolescents with T1D. Participants were satisfied with overall app design; customization, interactivity, and tangible rewards were identified as being necessary for continued use. Participants believed the app would help improve the communication between parents and adolescents. Many apps developed in the health context have not used a patient-centered design method or have seen vast improvements in health. This paper offers suggestions to others seeking to develop apps for adolescents and their parents. UR - http://mhealth.jmir.org/2017/4/e53/ UR - http://dx.doi.org/10.2196/mhealth.6654 UR - http://www.ncbi.nlm.nih.gov/pubmed/28428167 ID - info:doi/10.2196/mhealth.6654 ER - TY - JOUR AU - Thompson, Debbe AU - Cullen, W. Karen AU - Redondo, J. Maria AU - Anderson, Barbara PY - 2016/07/28 TI - Use of Relational Agents to Improve Family Communication in Type 1 Diabetes: Methods JO - JMIR Res Protoc SP - e151 VL - 5 IS - 3 KW - adolescents KW - family communication KW - pre-adolescents KW - relational agent KW - type 1 diabetes N2 - Background: Physiological and environmental risk factors interact to undermine blood glucose control during early adolescence. This has been documented to be associated with family conflict and poor adherence to diabetes management tasks. Family Teamwork is an efficacious program demonstrated to enhance family communication and reduce conflict during this vulnerable period. It was designed to be delivered to families in-person, which limited reach and potential impact. Objective: The purpose of this paper is to present the protocol for adapting Family Teamwork for Web-based delivery. Methods: Formative research with health care providers, parents, and adolescents will help modify Family Teamwork for Web-based delivery by a relational agent (ie, a computerized character with human-like features and actions). Sessions will be interactive, requiring both parent and adolescent participation, with the relational agent serving as a health coach. After programming, usability testing will be conducted to help ensure the program is easy to use. Video and instructional materials will be developed to facilitate use, and a small pilot study will be conducted to assess feasibility. Families will provide written informed consent prior to participation in any phase of the study. The Institutional Review Board at Baylor College of Medicine reviewed and approved the protocol (H-37245). Results: Formative research is underway. No results are available at this time. Conclusions: This research has the potential to make an important contribution to diabetes management by using technology to enhance the reach of an efficacious program. UR - http://www.researchprotocols.org/2016/3/e151/ UR - http://dx.doi.org/10.2196/resprot.5817 UR - http://www.ncbi.nlm.nih.gov/pubmed/27468762 ID - info:doi/10.2196/resprot.5817 ER -