TY - JOUR AU - Decataldo, Alessandra AU - Paleardi, Federico AU - Lauritano, Giacomo AU - Figlino, Francesca Maria AU - Russo, Concetta AU - Novello, Mino AU - Fiore, Brunella AU - Ciuffo, Giulia AU - Ionio, Chiara PY - 2025/3/18 TI - Preventing Premature Family Maladjustment: Protocol for a Multidisciplinary eHealth Study on Preterm Parents? Well-Being JO - JMIR Res Protoc SP - e63483 VL - 14 KW - preterm birth KW - parental well-being KW - sociology of health KW - digital-based monitoring KW - mixed methods research KW - eHealth N2 - Background: The consequences of preterm birth extend beyond the clinical conditions of the newborn, profoundly impacting the functioning and well-being of families. Parents of preterm infants often describe the experience of preterm birth and subsequent admission to the neonatal intensive care unit (NICU) as a disruptive event in their lives, triggering feelings of guilt, helplessness, and fear. Although various research examines changes in parents? well-being and perception of self-efficacy during the stay in the NICU, there is a lack of research analyzing what happens in the transition phase at home after the baby?s discharge. Recently, scholars have advocated for the use of web-based support programs to monitor and prevent preterm family maladjustment and assist parents. Objective: This interdisciplinary research will develop a sociopsychological model focused on assessing the well-being of parents of premature infants during and after their stay in a NICU. Specifically, the study aims to (1) monitor the mental health of parents of premature infants both at the time of the child?s discharge from the NICU and in the first 6 months after discharge to prevent family maladjustment, (2) deepen our understanding of the role of digital tools in monitoring and supporting preterm parents? well-being, and (3) study the potential impact of the relationship with health care professionals on the overall well-being of parents. Methods: This project combines mixed methods of social research and psychological support with an eHealth approach. The well-being of parents of premature infants will be assessed using validated scales administered through a questionnaire to parents of preterm infants within 6 NICUs at the time of the child?s discharge. Subsequently, a follow-up assessment of parental well-being will be implemented through the administration of the validated scales in a web application. In addition, an ethnographic phase will be conducted in the NICUs involving observation of the interaction between health care professionals and parents as well as narrative interviews with health care staff. Finally, interactions within the digital environment of the web application will be analyzed using a netnographic approach. We expect to shed light on the determinants of well-being among parents of premature infants in relation to varying levels of prematurity severity; sociodemographic characteristics such as gender, age, and socioeconomic status; and parental involvement in NICU care practices. With the follow-up phase via web application, this project also aims to prevent family maladjustment by providing psychological support and using an eHealth tool. Results: The results are expected by October 2025, the expiration date of the Project of Relevant National Interest. Conclusions: The eHealth Study on Preterm Parents? Well-Being aims to improve preterm parents? well-being and, indirectly, children?s health by reducing social costs. Furthermore, it promotes standardized neonatal care protocols, reducing regional disparities and strengthening collaboration between parents and health care staff. International Registered Report Identifier (IRRID): PRR1-10.2196/63483 UR - https://www.researchprotocols.org/2025/1/e63483 UR - http://dx.doi.org/10.2196/63483 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63483 ER - TY - JOUR AU - Luo, Jessica AU - West, C. Nicholas AU - Pang, Samantha AU - Robillard, M. Julie AU - Page, Patricia AU - Chadha, K. Neil AU - Gan, Heng AU - Correll, R. Lynnie AU - Ridgway, Randa AU - Broemling, Natasha AU - Görges, Matthias AU - PY - 2024/12/20 TI - Parental Perspectives on Pediatric Surgical Recovery: Narrative Analysis of Free-Text Comments From a Postoperative Survey JO - JMIR Perioper Med SP - e65198 VL - 7 KW - narrative analysis KW - qualitative data KW - family feedback KW - narrative feedback KW - pediatric surgery KW - perioperative care KW - pain management KW - surgical recovery N2 - Background: Qualitative experience data can inform health care providers how to best support families during pediatric postoperative recovery. Patient experience data can also provide actionable information to guide health care quality improvement; positive feedback can confirm the efficacy of current practices and systems, while negative comments can identify areas for improvement. Objective: This study aimed to understand families? perspectives regarding their children?s surgical recovery using qualitative patient experience data (free-text comments) from a prospective cohort study conducted within a larger study developing a postoperative-outcome risk stratification model. Methods: Participants were parents or guardians of children aged 0-18 years who underwent surgery at a pediatric tertiary care facility; children undergoing either outpatient or inpatient procedures were eligible to be enrolled. Participants with English as a second language were offered translational services during the consent process and were included if any family member could translate the surveys into their preferred language. Participants were ineligible if they and their families could not understand English or the child had a neurodevelopmental disability. Perioperative data were collected from families using web-based surveys, including 1 preoperative survey and follow-up surveys sent on postoperative days 1, 2, 3, 7, 15, 30, and 90. Surveys were completed until the family indicated the child was fully recovered or until postoperative day 90 was reached. Follow-up surveys included opportunities to leave free-text comments on the child?s surgical experience. Results: In total, 91% (453/500) of enrolled families completed at least 1 postoperative survey; 53% (242/453) provided at least 1 free-text comment and were included in the presented analysis, based on a total of 485 comments. The patient?s age distribution was bimodal (modes at 2-3 and 14-15 years), with 66% (160/242) being male. Patients underwent orthopedic (60/242, 25%), urological (39/242, 16%), general (36/242,15%), otolaryngological (31/242, 13%), ophthalmological (32/242, 13%), dental (27/242, 11%), and plastic (17/242, 7%) surgeries. Largely positive comments (398/485, 82%) were made on the recovery and clinical care experience. A key theme for improvement included ?communication,? with subthemes highlighting parental concerns regarding the ?preoperative discussions,? ?clarity of discharge instructions,? and ?continuity of care.? Other themes included ?length of stay? and ?recovery experience.? Feedback also suggested survey design amendments for future iterations of this instrument. Conclusions: Collecting parental recovery feedback is feasible and valued by families. Findings underscored the significance of enhancing communication strategies between health care providers and parents to align expectations and support proactive family-centered care. Our postoperative surveys allowed families to provide actionable suggestions for improving their experience, which may not have been considered during their hospital encounter. Our longitudinal survey protocol may be expanded to support continuous quality improvement initiatives involving near-real-time patient feedback to improve the health care experience of patients and families. UR - https://periop.jmir.org/2024/1/e65198 UR - http://dx.doi.org/10.2196/65198 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65198 ER - TY - JOUR AU - Nakamura, Kanako AU - Hamada, Yuko AU - Fujita, Ayaka AU - Morokuma, Seiichi PY - 2024/12/18 TI - Factors That Affect the Quality of Life of Mothers Caring for Children With Medical Needs at Home: Cross-Sectional Questionnaire Study JO - Asian Pac Isl Nurs J SP - e63946 VL - 8 KW - home care KW - children with special health care needs KW - children with medical complexity KW - mother KW - quality of life KW - caregiver KW - questionnaire N2 - Background: The number of children requiring daily medical care is on the rise, with many being cared for at home. This situation places a significant burden on mothers, who often serve as the primary caregivers. Objective: This study aimed to clarify the factors that affect the quality of life of mothers with children who require home health care. Methods: A questionnaire study was conducted among mothers of children needing medical care at home, with 46 participants responding. The questionnaire included items regarding the child?s condition, the mother?s situation, and the World Health Organization Quality of Life-26scale. Results: Factors influencing the quality of life of mothers included whether the child attended daycare or school (?=.274; P=.04), the duration of home care (?=.305; P=.02), and the presence or absence of position changes (?=?.410; P=.003). The presence or absence of position changes had the most significant impact (adjusted R2=.327). Conclusions: The most significant factor affecting the quality of life of mothers of children requiring home medical care is the presence or absence of positional changes. UR - https://apinj.jmir.org/2024/1/e63946 UR - http://dx.doi.org/10.2196/63946 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63946 ER - TY - JOUR AU - DeMatteo, Carol AU - Randall, Sarah AU - Jakubowski, Josephine AU - Stazyk, Kathy AU - Obeid, Joyce AU - Noseworthy, Michael AU - Mazurek, Michael AU - Timmons, W. Brian AU - Connolly, John AU - Giglia, Lucia AU - Hall, Geoffrey AU - Lin, Chia-Yu AU - Perrotta, Samantha PY - 2024/10/9 TI - Fact or Fiction?Accelerometry Versus Self-Report in Adherence to Pediatric Concussion Protocols: Prospective Longitudinal Cohort Study JO - JMIR Pediatr Parent SP - e57325 VL - 7 KW - pediatric concussion KW - guidelines KW - adherence KW - return to school KW - return to sport KW - actigraphy N2 - Background: Concussion, or mild traumatic brain injury, is a growing public health concern, affecting approximately 1.2% of the population annually. Among children aged 1?17 years, concussion had the highest weighted prevalence compared to other injury types, highlighting the importance of addressing this issue among the youth population. Objective: This study aimed to assess adherence to Return to Activity (RTA) protocols among youth with concussion and to determine if better adherence affected time to recovery and the rate of reinjury. Methods: Children and youth (N=139) aged 5?18 years with concussion were recruited. Self-reported symptoms and protocol stage of recovery were monitored every 48 hours until symptom resolution was achieved. Daily accelerometry was assessed with the ActiGraph. Data were collected to evaluate adherence to the RTA protocol based on physical activity cutoff points corresponding to RTA stages. Participants were evaluated using a battery of physical, cognitive, and behavioral measures at recruitment, upon symptom resolution, and 3 months post symptom resolution. Results: For RTA stage 1, a total of 13% of participants were adherent based on accelerometry, whereas 11% and 34% of participants were adherent for stage 2 and 3, respectively. The median time to symptom resolution was 13 days for participants who were subjectively reported adherent to the RTA protocol and 20 days for those who were subjectively reported as nonadherent (P=.03). No significant agreement was found between self-report of adherence and objective actigraphy adherence to the RTA protocol as well as to other clinical outcomes, such as depression, quality of life, and balance. The rate of reinjury among the entire cohort was 2% (n=3). Conclusions: Overall, adherence to staged protocols post concussion was minimal when assessed with accelerometers, but adherence was higher by self-report. More physical activity restrictions, as specified in the RTA protocol, resulted in lower adherence. Although objective adherence was low, reinjury rate was lower than expected, suggesting a protective effect of being monitored and increased youth awareness of protocols. The results of this study support the move to less restrictive protocols and earlier resumption of daily activities that have since been implemented in more recent protocols. UR - https://pediatrics.jmir.org/2024/1/e57325 UR - http://dx.doi.org/10.2196/57325 ID - info:doi/10.2196/57325 ER - TY - JOUR AU - Jiang, Pei AU - Yan, Xiangyu AU - Cai, Tongjian AU - Huang, Longxin AU - Liu, Zhenzhong AU - Hao, Linhui AU - Huang, Tian AU - Yang, Haijun AU - Xu, Min AU - Shi, Wenhui AU - Shui, Tiejun PY - 2024/9/9 TI - Exploring the Birthday Week Effect on Hand, Foot, and Mouth Disease in Yunnan Province, China, From 2008 to 2022: Surveillance Data Analysis JO - JMIR Public Health Surveill SP - e59237 VL - 10 KW - hand, foot, and mouth disease KW - birthday week effect KW - infants KW - children KW - China KW - surveillance KW - HFMD N2 - Background: Hand, foot, and mouth disease (HFMD) is a notable infectious disease predominantly affecting infants and children worldwide. Previous studies on HFMD have primarily focused on natural patterns, such as seasonality, but research on the influence of important social time points is lacking. Several studies have indicated correlations between birthdays and certain disease outcomes. Objective: This study aimed to explore the association between birthdays and HFMD. Methods: Surveillance data on HFMD from 2008 to 2022 in Yunnan Province, China, were collected. We defined the period from 6 days before the birthday to the exact birthday as the ?birthday week.? The effect of the birthday week was measured by the proportion of cases occurring during this period, termed the ?birthday week proportion.? We conducted subgroup analyses to present the birthday week proportions across sexes, age groups, months of birth, and reporting years. Additionally, we used a modified Poisson regression model to identify conditional subgroups more likely to contract HFMD during the birthday week. Results: Among the 973,410 cases in total, 116,976 (12.02%) occurred during the birthday week, which is 6.27 times the average weekly proportion (7/365, 1.92%). While the birthday week proportions were similar between male and female individuals (68,849/564,725, 12.19% vs 48,127/408,685, 11.78%; ?21=153.25, P<.001), significant differences were observed among different age groups (?23=47,145, P<.001) and months of birth (?211=16,942, P<.001). Compared to other age groups, infants aged 0?1 year had the highest birthday week proportion (30,539/90,709, 33.67%), which is 17.57 times the average weekly proportion. Compared to other months, patients born from April to July and from October to December, the peak months of the HFMD epidemic, had higher birthday week proportions. Additionally, a decreasing trend in birthday week proportions from 2008 to 2022 was observed, dropping from 33.74% (3914/11,600) to 2.77% (2254/81,372; Cochran-Armitage trend test: Z=?102.53, P<.001). The results of the modified Poisson regression model further supported the subgroup analyses findings. Compared with children aged >7 years, infants aged 0?1 year were more likely to contract HFMD during the birthday week (relative risk 1.182, 95% CI 1.177?1.185; P<.001). Those born during peak epidemic months exhibited a higher propensity for contracting HFMD during their birthday week. Compared with January, the highest relative risk was observed in May (1.087, 95% CI 1.084?1.090; P<.001). Conclusions: This study identified a novel ?birthday week effect? of HFMD, particularly notable for infants approaching their first birthday and those born during peak epidemic months. Improvements in surveillance quality may explain the declining trend of the birthday week effect over the years. Higher exposure risk during the birthday period and potential biological mechanisms might also account for this phenomenon. Raising public awareness of the heightened risk during the birthday week could benefit HFMD prevention and control. UR - https://publichealth.jmir.org/2024/1/e59237 UR - http://dx.doi.org/10.2196/59237 ID - info:doi/10.2196/59237 ER - TY - JOUR AU - Mörelius, Evalotte AU - Robinson, Suzanne AU - Arabiat, Diana AU - Whitehead, Lisa PY - 2021/12/22 TI - Digital Interventions to Improve Health Literacy Among Parents of Children Aged 0 to 12 Years With a Health Condition: Systematic Review JO - J Med Internet Res SP - e31665 VL - 23 IS - 12 KW - child KW - child health services KW - digital technology KW - health literacy KW - infant KW - internet-based intervention KW - parents KW - patient compliance KW - pediatric hospitals N2 - Background: Parental health literacy is associated with child health outcomes. Parents are increasingly turning to the internet to obtain health information. In response, health care providers are using digital interventions to communicate information to assist parents in managing their child?s health conditions. Despite the emergence of interventions to improve parental health literacy, to date, no systematic evaluation of the effectiveness of the interventions has been undertaken. Objective: The aim of this review is to examine the effect of digital health interventions on health literacy among parents of children aged 0-12 years with a health condition. This includes evaluating parents? engagement (use and satisfaction) with digital health interventions, the effect of these interventions on parental health knowledge and health behavior, and the subsequent impact on child health outcomes. Methods: This systematic review was registered a priori on PROSPERO (International Prospective Register of Systematic Reviews) and developed according to the Joanna Briggs Institute methodology for systematic reviews. The databases CINAHL, MEDLINE, and PsycINFO were searched for relevant literature published between January 2010 and April 2021. Studies were included if they were written in English. A total of 2 authors independently assessed the search results and performed a critical appraisal of the studies. Results: Following the review of 1351 abstracts, 31 (2.29%) studies were selected for full-text review. Of the 31 studies, 6 (19%) studies met the inclusion criteria. Of the 6 studies, 1 (17%) was excluded following the critical appraisal, and the 5 (83%) remaining studies were quantitative in design and included digital health interventions using web-based portals to improve parents? health knowledge and health behavior. Owing to heterogeneity in the reported outcomes, meta-analysis was not possible, and the findings were presented in narrative form. Of the 5 studies, satisfaction was measured in 3 (60%) studies, and all the studies reported high satisfaction with the digital intervention. All the studies reported improvement in parental health literacy at postintervention as either increase in disease-specific knowledge or changes in health behavior. Of the 5 studies, only 1 (20%) study included child health outcomes, and this study reported significant improvements related to increased parental health knowledge. Conclusions: In response to a pandemic such as COVID-19, there is an increased need for evidence-based digital health interventions for families of children living with health conditions. This review has shown the potential of digital health interventions to improve health knowledge and behavior among parents of young children with a health condition. However, few digital health interventions have been developed and evaluated for this population. Future studies with robust research designs are needed and should include the potential benefits of increased parent health literacy for the child. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42020192386; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=192386 UR - https://www.jmir.org/2021/12/e31665 UR - http://dx.doi.org/10.2196/31665 UR - http://www.ncbi.nlm.nih.gov/pubmed/34941559 ID - info:doi/10.2196/31665 ER - TY - JOUR AU - Soltys, Coyle Frank AU - Spilo, Kimi AU - Politi, C. Mary PY - 2021/10/19 TI - The Content and Quality of Publicly Available Information About Congenital Diaphragmatic Hernia: Descriptive Study JO - JMIR Pediatr Parent SP - e30695 VL - 4 IS - 4 KW - congenital diaphragmatic hernia KW - prenatal counseling KW - fetal care KW - online information KW - parental decision making N2 - Background: Congenital diaphragmatic hernia (CDH) diagnosis in an infant is distressing for parents. Parents often feel unable to absorb the complexities of CDH during prenatal consultations and use the internet to supplement their knowledge and decision making. Objective: We aimed to examine the content and quality of publicly available, internet-based CDH information. Methods: We conducted internet searches across 2 popular search engines (Google and Bing). Websites were included if they contained CDH information and were publicly available. We developed a coding instrument to evaluate websites. Two coders (FS and KS) were trained, achieved interrater reliability, and rated remaining websites independently. Descriptive statistics were performed. Results: Searches yielded 520 websites; 91 met inclusion criteria and were analyzed. Most websites provided basic CDH information including describing the defect (86/91, 95%), need for neonatal intensive care (77/91, 85%), and surgical correction (79/91, 87%). Few mentioned palliative care, decisions about pregnancy termination (13/91, 14%), or support resources (21/91, 23%). Conclusions: Findings highlight the variability of information about CDH on the internet. Clinicians should work to develop or identify reliable, comprehensive information about CDH to support parents. UR - https://pediatrics.jmir.org/2021/4/e30695 UR - http://dx.doi.org/10.2196/30695 UR - http://www.ncbi.nlm.nih.gov/pubmed/34665147 ID - info:doi/10.2196/30695 ER - TY - JOUR AU - Meherali, Salima AU - Hartling, Lisa AU - Scott, D. Shannon PY - 2021/1/20 TI - Cultural Adaptation of Digital Knowledge Translation Tools for Acute Otitis Media in Low- to Middle-Income Countries: Mixed Methods Usability Study JO - JMIR Form Res SP - e13908 VL - 5 IS - 1 KW - acute otitis media KW - knowledge translation KW - pediatric KW - parent?s experiences KW - information needs KW - global health N2 - Background: Acute otitis media (AOM) is the most common pediatric bacterial ear infection. AOM presents challenges to parents who lack accurate information. Digital knowledge translation tools offer a promising approach to communicating complex health information. We developed AOM knowledge translation tools for Canadian parents and augmented them for Pakistani parent end users. Objective: This pilot study aimed to (1) develop AOM knowledge translation tools for Canadian parents, (2) adapt the knowledge translation tools across cultural contexts, and (3) evaluate the usability of the adapted knowledge translation tools. Methods: Parents? perceptions of the translated knowledge translation tools? usability were explored using a mixed-methods design. We recruited parent participants from a hospital in Pakistan to complete usability surveys (n=47) and focus group interviews (n=21). Descriptive statistics and content analysis were used to analyze data. Results: Usability results showed the usefulness and effectiveness of both adapted knowledge translation tools. Parents reported preferring a digital media narrative format in their own language. Findings revealed that culturally adapted knowledge translation tools are effective in transferring health information to parents. Conclusions: Digital knowledge translation tools offer a promising approach to improving health literacy and communicating complex health information to parents of children with AOM. Culturally adapting the tools generated important knowledge that will contribute to knowledge translation advancements. Evaluation of the tool effectiveness is a critical next step to exploring the impact of knowledge translation tools on child health outcomes. UR - http://formative.jmir.org/2021/1/e13908/ UR - http://dx.doi.org/10.2196/13908 UR - http://www.ncbi.nlm.nih.gov/pubmed/33470942 ID - info:doi/10.2196/13908 ER -