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 -