JMIR Pediatrics and Parenting最新文献

{"title":"A Primary Care Group Resilience Intervention Promotes Child and Caregiver Behavioral Health.","authors":"Joan Jeung, Andrew Nguyen, Jennifer Martinez, Li Zhang","doi":"10.2196/67638","DOIUrl":"10.2196/67638","url":null,"abstract":"<p><strong>Unlabelled: </strong>This pilot study of the redesigned Resilience Clinic, a group-based psychoeducational intervention designed to promote relational health and child and family resilience provides preliminary evidence that participation in this intervention is associated with decreased caregiver stress, anxiety, and child behavioral concerns.</p>","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e67638"},"PeriodicalIF":2.1,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11833186/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143392137","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementing Diabetes Distress Screening in a Pediatric Endocrinology Clinic Using a Digital Health Platform: Quantitative Secondary Data Analysis.","authors":"Nicole A Kahhan, Larry A Fox, Matthew Benson, Susana R Patton","doi":"10.2196/65107","DOIUrl":"10.2196/65107","url":null,"abstract":"<p><strong>Background: </strong>Type 1 diabetes (T1D) management requires following a complex and constant regimen relying on child or caregiver behaviors, skills, and knowledge. Psychological factors such as diabetes distress (DD), depression, and burnout are pertinent considerations in the treatment of pediatric T1D. Approximately 40% of youth and 61% of caregivers experience DD. Implementation of DD screening as part of clinical best practice is recommended and may facilitate treatment referral, perhaps leading to improved health or well-being for youth with T1D and their caregivers. By building on existing institutional infrastructure when available, screening via digital health platforms (applications, or \"apps\") may allow for timely screening of, and response to, DD.</p><p><strong>Objective: </strong>This work details the creation, implementation, and refinement of a process to screen for DD in youth and their caregivers in the context of routine T1D care using a digital health platform.</p><p><strong>Methods: </strong>DD screening was implemented in an outpatient endocrinology clinic over 1 year as part of a larger screen-to-treat trial for children aged 8-12.99 years and their caregivers. Validated measures were sent via digital health platform to be completed prior to the clinic visit. Results were initially reviewed manually, but a digital best practice alert (BPA) was later built to notify staff of elevated scores. Families experiencing DD received resources sent via the digital health platform. For this secondary analysis, child demographics and glycated hemoglobin A1c (HbA1c) were collected.</p><p><strong>Results: </strong>During the screening period, absolute completion rates were 36.78% and 38.83%, with adjusted screening rates at 52.02% and 54.48%, for children and caregivers, respectively. A total of 21 children (mean HbA1c 8.04%, SD 1.39%) and 26 caregivers (child mean HbA1c 8.04%, SD 1.72%) reported elevated DD. Prior to BPA development, resources were sent to all but 1 family. After BPA implementation, all families were sent resources.</p><p><strong>Conclusions: </strong>Early findings indicate that DD education, screening, and response can be integrated via digital platforms in a freestanding outpatient endocrinology clinic, thereby facilitating timely treatment referral and provision of resources for those identified with distress. Notably, in the observed 1-year screening period, screening rates were low, and barriers to implementation were identified. While some implementation challenges were iteratively addressed, there is a need for future quality improvement initiatives to improve screening rates and the identification of, or response to, DD in our pediatric patients and their families.</p>","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e65107"},"PeriodicalIF":2.1,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11825894/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143366183","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Digital Health Program to Support Family Caregivers of Children Undergoing Growth Hormone Therapy: Qualitative Feasibility Study.","authors":"Alba Jiménez-Díaz, Maitena Pierantonelli, Patricia Morte Coscolín, Amaia Salinas-Uhalte, Silvia Quer-Palomas, Octavio Rivera-Romero, Rocío Herrero, Luis Fernández-Luque, Rosa Baños, Ricardo C Berrios, Antonio de Arriba","doi":"10.2196/55023","DOIUrl":"10.2196/55023","url":null,"abstract":"<p><strong>Background: </strong>Caregivers of children with growth hormone deficiency often face emotional challenges (eg, stress) associated with their children's health conditions. This psychological burden might affect children's adherence to treatment and hinder their health-related quality of life (HrQoL). This assumption is leading to seriously considering multidimensional clinical approaches to pediatric health conditions where the emotional well-being of caregivers should be accounted for to optimize children's health outcomes. Novel mobile health (mHealth) solutions based on emotional and behavioral change techniques can play a promising role because they are increasingly used within different health areas to support adaptive psychological functioning. However, whether and how mHealth solutions of this type of emotional well-being support caregivers of children with growth-related problems is an issue that needs to be clarified.</p><p><strong>Objective: </strong>This study aimed to gather qualitative information to better understand individualized experiences of caregiving of children undergoing growth hormone therapy (GHt) and perceived barriers or facilitators for the adoption of an mHealth solution called Adhera Caring Digital Program (ACDP).</p><p><strong>Methods: </strong>A total of 10 family caregivers were recruited at Miguel Servet Children's Hospital, and they engaged with the ACDP for 1 month. The ACDP is a mobile-based digital intervention focused on promoting the overall well-being of family caregivers which provides access to personalized education, motivational mobile-based messages, and mental well-being exercises such as mindfulness or respiratory exercises. Subsequently, an individual semistructured interview was performed to gather qualitative user experience information.</p><p><strong>Results: </strong>The digital intervention was well-received. The ACDP was found to be useful, easy to use, and understandable, addressing all the difficulties expressed by caregivers. It was also noted to be particularly helpful at the beginning of the treatment and, for some families, became a natural tool that strengthened the parent-child relationship.</p><p><strong>Conclusions: </strong>The ACDP is a promising and well-accepted tool that enhances the experience of patients and caregivers. It improves the management of growth hormone deficiency and promotes the overall well-being of family caregivers.</p><p><strong>Trial registration: </strong>ClinicalTrials NCT04812665; https://clinicaltrials.gov/study/NCT04812665.</p><p><strong>International registered report identifier (irrid): </strong>RR2-10.1186/s12911-022-01935-1.</p>","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e55023"},"PeriodicalIF":2.1,"publicationDate":"2025-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11840389/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143190673","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using a Consumer Wearable Activity Monitoring Device to Study Physical Activity and Sleep Among Adolescents in Project Viva: Cohort Study.","authors":"Yutong Zhang, Nicole Bornkamp, Marie-France Hivert, Emily Oken, Peter James","doi":"10.2196/59159","DOIUrl":"10.2196/59159","url":null,"abstract":"<p><strong>Background: </strong>The increasing prevalence of physical inactivity and insufficient sleep in adolescents likely contribute to worsening cardiometabolic and mental health. However, obtaining accurate behavioral measures is a challenge. Consumer wearable devices offer a user-friendly method to assess physical activity and sleep.</p><p><strong>Objective: </strong>This study aimed to describe the process and the preliminary results of physical activity and sleep collected using a consumer wearable Fitbit device in an adolescent cohort.</p><p><strong>Methods: </strong>We provided Fitbit Charge 2 or Charge 3 wrist-worn activity monitors to adolescent participants in Project Viva, a Boston, Massachusetts area cohort, from 2017 to 2022. We invited participants to wear the devices for ≥7 days for 24 hours a day to measure their physical activity, heart rate, and sleep, and allowed them to keep the device as a participation incentive.</p><p><strong>Results: </strong>We collected over 7 million minutes of physical activity, heart rate, and sleep data from 677 participants, 53% (356/677) of whom were female. The mean (SD) age of participants was 17.7 (0.7) years. Among the 677 participants, 65% (n=439) were non-Hispanic White, 14% (n=947) were non-Hispanic Black, 10% (n=69) were Hispanic, 3.2% (n=22) were non-Hispanic Asian, and 7.8% (n=53) belonged to other races. Participants demonstrated a high adherence to the research protocol, with the mean (SD) wear duration of 7.5 (1.1) days, and 90% of participants (612/677) had 5 or more days wearing the device for >600 minutes/day. The mean (SD) number of steps was 8883 (3455) steps/day and the mean (SD) awake sedentary time was 564 (138) minutes/day. Male participants were more often engaged in very active (27 minutes/day) and moderately active physical activity (29 minutes/day) compared with female participants (15 and 17 minutes/day, respectively). Over 87% (588/677) of participants had sleep data available for 5 or more days, among whom the average nightly sleep duration was 7.9 (SD 0.9) hours.</p><p><strong>Conclusions: </strong>This study demonstrated the feasibility of using consumer wearable devices to measure physical activity and sleep in a cohort of US adolescents. The high compliance rates provide valuable insights into adolescent behavior patterns and their influence on chronic disease development and mental health outcomes.</p>","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e59159"},"PeriodicalIF":2.1,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11813160/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143190747","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of Chatbot-Based Oral Health Care for Young Children and Evaluation of its Effectiveness, Usability, and Acceptability: Mixed Methods Study.","authors":"Kittiwara Pupong, Jaranya Hunsrisakhun, Samerchit Pithpornchaiyakul, Supawadee Naorungroj","doi":"10.2196/62738","DOIUrl":"10.2196/62738","url":null,"abstract":"<p><strong>Background: </strong>Chatbots are increasingly accepted in public health for their ability to replicate human-like communication and provide scalable, 24/7 services. The high prevalence of dental caries in children underscores the need for early and effective intervention.</p><p><strong>Objective: </strong>This study aimed to develop the 30-Day FunDee chatbot and evaluate its effectiveness, usability, and acceptability in delivering oral health education to caregivers of children aged 6 to 36 months.</p><p><strong>Methods: </strong>The chatbot was created using the artificial intelligence (AI) chatbot behavior change model, integrating behavioral change theories into content designed for 3-5 minutes of daily use over 30 days. A pre-post experimental study was conducted from December 2021 to February 2022 in Hat Yai District, Songkhla Province, and Maelan District, Pattani Province, Thailand. Fifty-eight caregivers completed a web-based structured questionnaire at baseline and 2 months post baseline to evaluate knowledge, protection motivation theory-based perceptions, and tooth-brushing practices. Usability was assessed via chatbot logfiles and a web-based questionnaire at 2 months post baseline. Acceptability was evaluated through three methods: (1) open-ended chatbot interactions on day 30, (2) a web-based structured questionnaire at 2 months post baseline, and (3) semistructured telephone interviews with 15 participants 2 weeks post intervention. Participants for interviews were stratified by adherence levels and randomly selected from Hatyai and Maelan districts. All self-reported variables were measured on a 5-point Likert scale (1=lowest, 5=highest).</p><p><strong>Results: </strong>The chatbot was successfully developed based on the 4 components of the AI chatbot behavior change model. Participants had a mean age of 34.5 (SD 8.6) years. The frequency of tooth brushing among caregivers significantly improved, increasing from 72.4% at baseline to 93.1% two months post baseline (P=.006). Protection motivation theory-based perceptions also showed significant improvement, with mean scores rising from 4.0 (SD 0.6) at baseline to 4.5 (SD 0.6) two months post baseline (P<.001). The chatbot received high ratings for satisfaction (4.7/5, SD 0.6) and usability (4.7/5, SD 0.5). Participants engaged with the chatbot for an average of 24.7 (SD 7.2) days out of 30. Caregivers praised the chatbot's content quality, empathetic communication, and multimedia design, but noted the intervention's lengthy duration and messaging system as limitations.</p><p><strong>Conclusions: </strong>The 30-Day FunDee chatbot effectively enhanced caregivers' perceptions of oral health care and improved tooth-brushing practices for children aged 6-36 months. High user satisfaction and engagement demonstrate its potential as an innovative tool for oral health education. These findings warrant further validation through large-scale, randomized controlled trials.</p>","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e62738"},"PeriodicalIF":2.1,"publicationDate":"2025-02-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11809939/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143123807","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Parental Experiences of Administering Pediatric <i>Tuina</i> for Sleep and Appetite in Early School-Aged Children With Attention-Deficit/Hyperactivity Disorder: Qualitative Study in Hong Kong.","authors":"Shu-Cheng Chen, Kwai-Ching Lo, Han Li, Pong-Ming Wong, Lok-Yi Pang, Jing Qin, Wing-Fai Yeung","doi":"10.2196/65471","DOIUrl":"10.2196/65471","url":null,"abstract":"<p><strong>Background: </strong>Previous research suggested that parent-administered pediatric tuina could improve symptoms of attention-deficit/hyperactivity disorder (ADHD), such as sleep quality and appetite.</p><p><strong>Objective: </strong>This study aimed to explore the experiences and perceptions of parents administering pediatric tuina to school-aged children with ADHD in Hong Kong.</p><p><strong>Methods: </strong>This qualitative study was embedded in a pilot randomized controlled trial on parent-administered pediatric tuina for improving sleep and appetite in school-aged children diagnosed with ADHD. Purposive sampling was used to invite 12 parents who attended a pediatric tuina training program and delivered the intervention to their children at home for at least 8 weeks. Data were collected through semistructured focus group interviews and individual interviews, which were audio-recorded, transcribed verbatim, and analyzed using thematic analysis.</p><p><strong>Results: </strong>Two main themes emerged: (1) effects of parent-administered pediatric tuina and (2) parents' experience of administering pediatric tuina. Parents reported significant improvements in children's sleep quality, appetite, behavior, mental state, and academic performance. Facilitators provided professional guidance and applied a user-friendly course design. Challenges included difficulties in mastering techniques, locating acupuncture points, and time management. Participants suggested the need for more traditional Chinese medicine pattern diagnostic sessions, real-time supervision methods, and extended follow-up to better observe long-term effects.</p><p><strong>Conclusions: </strong>Parent-administered pediatric tuina was perceived to improve children's sleep quality and appetite significantly, along with other aspects of well-being. Professional guidance and a structured training program facilitated implementation, and challenges highlighted the need for more frequent diagnostic sessions, real-time supervision, and extended follow-up.</p>","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e65471"},"PeriodicalIF":2.1,"publicationDate":"2025-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11801773/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143068440","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Preoperative Anxiety Management Practices in Pediatric Anesthesia: Comparative Analysis of an Online Survey Presented to Experts and Social Media Users.","authors":"Armin Sablewski, Christine Eimer, Marcus Nemeth, Clemens Miller","doi":"10.2196/64561","DOIUrl":"10.2196/64561","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Managing preoperative anxiety in pediatric anesthesia is challenging, as it impacts patient cooperation and postoperative outcomes. Both pharmacological and nonpharmacological interventions are used to reduce children's anxiety levels. However, the optimal approach remains debated, with evidence-based guidelines still lacking. Health care professionals using social media as a source of medical expertise may offer insights into their management approaches.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;A public survey targeting health care professionals was disseminated via social media platforms to evaluate current practices in anxiety management in children. The same questions were posed during an annual meeting of pediatric anesthesiologists with their responses serving as reference. The primary objective was to compare pediatric anesthesia expertise between the groups, while secondary objectives focused on identifying similarities and differences in preoperative anxiety management strategies hypothesizing expertise differences between the groups.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Two surveys were conducted. The first survey targeted 100 attendees of the German Scientific Working Group on Pediatric Anesthesia in June 2023 forming the \"Expert Group\" (EG). The second open survey was disseminated on social media using a snowball sampling approach, targeting followers of a pediatric anesthesia platform to form the \"Social Media Group\" (SG). The answers to the 24 questions were compared and statistically analyzed. Questions were grouped into 5 categories (pediatric anesthesia expertise, representativity, structural conditions, practices of pharmacological management, and practices in nonpharmacological management).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;A total of 194 responses were analyzed (82 in EG and 112 in SG). The EG cohort exhibited significantly greater professional experience in pediatric anesthesia than the SG cohort (median 19 vs 10 y, P&lt;.001), higher specialist status (97.6% vs 64.6%, P&lt;.001), and a greater pediatric anesthesia volume (43.9% vs 12% with more than 500 cases per year, P&lt;.001). Regarding the representativity, 2 items out of 4 were statistically significant (level of care of institution, annual caseload of institution). Regarding the overall anxiety management practices used, there is a heterogeneous response pattern within both groups.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Despite heterogeneous approaches, health care professionals using social media demonstrated less expertise in pediatric anesthesia but showed minimal differences in the daily management of preoperative anxiety compared with pediatric anesthesia experts. Our study highlights the potential for meaningful use of social media but future studies should explore the impact of social media health care professionals' knowledge in other specific topics. Additionally, regarding preoperative anxiety, further recommendations are needed that could help to stan","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e64561"},"PeriodicalIF":2.1,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11790179/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143060818","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Children's and Their Parents' Experiences With Home-Based Guided Hypnotherapy: Qualitative Study.","authors":"Ilse N Ganzevoort, Adriëlla L van der Veen, Manna A Alma, Marjolein Y Berger, Gea A Holtman","doi":"10.2196/58301","DOIUrl":"10.2196/58301","url":null,"abstract":"<p><strong>Background: </strong>Management of children with functional abdominal pain (FAP) or irritable bowel syndrome (IBS) is difficult in primary care. When education and reassurance do not alleviate symptoms, primary care physicians lack treatment options for children with FAP or IBS. Home-based guided hypnotherapy is a promising treatment because of its accessibility. To address feasibility, it is of utmost importance to take experiences from children and their parents into account.</p><p><strong>Objective: </strong>We aimed to explore children's and their parents' experiences with home-based guided hypnotherapy for children with FAP or IBS.</p><p><strong>Methods: </strong>This qualitative study used open-ended questions from a questionnaire and in-depth semistructured interviews with children and their parents who had a hypnotherapy intervention prescribed. The interviews were audio-recorded and transcribed verbatim. Data were collected and analyzed iteratively using thematic content analysis.</p><p><strong>Results: </strong>A total of 76 children were eligible, and we collected questionnaire data from 56 children. A total of 23 interviews were conducted with 10 children and 15 parents. Six themes emerged from questionnaire data and interviews: impression of the exercises, not for everyone, influence of perceived effect, integrating exercises in daily life, content and practicalities of the website, and customization to personal preferences. Children with FAP or IBS experienced home-based guided hypnotherapy and the exercises differently, ranging from boring to fun. From interviews with the parents, it emerged that hypnotherapy is not suitable for everyone; for example, when children are very young or have a low developmental level, cannot sit still, cannot surrender to the exercises, or are too energetic or stressed, it might be difficult to comply. Experiences were shaped by the influence of a perceived effect and to which extent children were able to integrate exercises in daily life. The content and practicalities of the website also influenced experiences, and hypnotherapy that is adaptable to personal preferences, including by appearance and content, would be highly appreciated.</p><p><strong>Conclusions: </strong>The children and parents experienced home-based guided hypnotherapy differently, ranging from boring to fun. Hypnotherapy might be difficult or boring for some children. The children enjoyed hypnotherapy when they liked the topic or story, felt positive effects, could easily integrate exercises in daily life, or enjoyed the website in general. The children's experiences and adherence can be further improved by adding short exercises and customizing hypnotherapy to their personal preferences on the website's appearance and content. This could increase effectiveness but must be studied further.</p>","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e58301"},"PeriodicalIF":2.1,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11789690/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143053867","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Perspectives on Swedish Regulations for Online Record Access Among Adolescents With Serious Health Issues and Their Parents: Mixed Methods Study.","authors":"Josefin Hagström, Charlotte Blease, Arja Harila, Päivi Lähteenmäki, Isabella Scandurra, Maria Hägglund","doi":"10.2196/63270","DOIUrl":"10.2196/63270","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;With the increasing implementation of patient online record access (ORA), various approaches to access to minors' electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child's care and involve them in their care. However, the perspectives of adolescents with serious health issues and their parents have not been studied.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aims to qualitatively and quantitatively investigate the perceived benefits and risks of ORA and the awareness of and views on ORA regulations among adolescents with serious health issues and their parents in Sweden.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We used a convergent mixed methods (qualitative and quantitative) design, consisting of a survey and semistructured individual interviews with adolescents with serious health issues (aged 13-18 y) and their parents. Participants were recruited via social media and in clinics. Quantitative data were presented descriptively. Interviews were audio recorded, transcribed, and analyzed using inductive thematic content analysis.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The survey population included 88 individuals (adolescents: n=31, 35%; parents: n=57, 65%). Interviews were completed by 8 (26%) of the 31 adolescents and 17 (30%) of the 57 parents. The mean age of the surveyed adolescents was 16 (SD 1.458) years, and most of the parents (29/57, 51%) were aged 45 to 54 years. The surveys indicated that most of the parents (51/56, 91%) were critical of the access gap, and most of the adolescents (20/31, 65%) were unaware of the age at which they could gain access. In the interviews, adolescents and parents identified benefits related to ORA that were categorized into 6 themes (empowering adolescents, improved emotional state, enhanced documentation accuracy, improved partnership and communication, supported parental care management, and better prepared for appointments) and risks related to ORA that were categorized into 4 themes (emotional distress and confusion, threatened confidentiality, increased burden, and low usability). Adolescents' and parents' views on ORA regulations were categorized into 3 themes (challenges of the access gap, balancing respect for autonomy and support, and suggested regulatory change).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;In Sweden, ORA regulations and a lack of available information cause significant inconvenience for adolescents with serious health issues and their parents. Views on access age limits differed, with adolescents expressing their perceived need for independent access, while parents exhibited concerns about adolescents having ORA. The findings indicated the importance of increased education, dialogue, and flexibility to uphold confidential and consi","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e63270"},"PeriodicalIF":2.1,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11811660/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143053870","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring Health Educational Interventions for Children With Congenital Heart Disease: Scoping Review.","authors":"Neda Barbazi, Ji Youn Shin, Gurumurthy Hiremath, Carlye Anne Lauff","doi":"10.2196/64814","DOIUrl":"10.2196/64814","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Congenital heart disease (CHD) is the most common birth defect, affecting 40,000 births annually in the United States. Despite advances in medical care, CHD is often a chronic condition requiring continuous management and education. Effective care management depends on children's understanding of their condition. This highlights the need for targeted health educational interventions to enhance health literacy among children with CHD.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This scoping review aims to map and explore existing health educational interventions for children with CHD. The review identifies the types of interventions, target populations, delivery methods, and assessed outcomes. The goal is to consolidate fragmented research, identify gaps, and establish future research agendas.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Comprehensive searches were conducted in February 2024 using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) framework across multiple databases: APA PsycINFO, MedlinePlus via Ovid, Web of Science, ACM Digital Library, Scopus, and EBSCOhost (CINAHL Complete, CINAHL Ultimate, Health Source: Nursing/Academic Edition, and ERIC). The search covered health care, design, and human-computer interaction disciplines to capture the interdisciplinary nature of CHD health educational interventions. There was no predefined time limit due to the limited number of relevant studies. Eligible studies were in English, published in peer-reviewed journals, and focused on primary data about educational health interventions for children with CHD. We extracted and synthesized data using thematic analysis.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The review identified 11 studies: 9 randomized controlled trials and 2 observational studies. These used 6 educational strategies: 3D patient-specific models (n=3), habit formation interventions (n=2), empowerment-based health education programs (n=2), rehabilitation interventions (n=2), web-based portals (n=1), and videotape presentations (n=1). Interventions ranged from brief outpatient sessions to 1.5-year programs, with follow-up from none to 24 months. Studies aimed to improve coping, self-management, and knowledge for children with CHD and their families. The most frequently used assessment method was the independent samples t test (n=4) for pre- and postassessments, and all 11 studies used questionnaires, 8 of which incorporated qualitative feedback. The target participants for these interventions were children aged 13 years and older (n=3), parents (n=2), and children of various ages and their parents (n=6). Outcomes included improved children's health literacy, reduced parental burden, and increased health care provider efficiency.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;This review underscores the critical need for tailored educational interventions for children with CHD. Current research mainly focuses on adolescents and re","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":"8 ","pages":"e64814"},"PeriodicalIF":2.1,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11806270/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143034527","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}