JMIR Publications

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  Children and Youth with Disabilities

  Jan 8, 2020

  A Web-Based Intervention for Youth With Physical Disabilities: Comparing the Role of Mentors in 12- and 4-Week Formats

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  Authors List:

  • Sally Lindsay  
  • Elaine Cagliostro  

  Abstract:

  Background: Youths with physical disabilities face many barriers in society, including social exclusion, stigma, and difficulties finding employment. Electronic mentoring (e-mentoring) offers a promising opportunity for youths with disabilities and has the potential to improve their inclusion while enhancing career outcomes. However, little is known about the role of mentors in a Web-based e-mentoring format to improve employment outcomes. Objective: This study aimed to explore the role of mentors in engaging youths in an e-mentoring intervention and to compare and contrast mentors’ engagement strategies within a 12- and 4-week format. Methods: This paper drew on a pilot feasibility study, which is a group, Web-based employment readiness intervention involving a discussion forum for youths with physical disabilities. Our intervention involved having trained youth mentors (ie, near-peers who also had a disability) lead Web-based discussion forums while offering peer support and resources, which involved 12 modules completed over both a 12- or 4-week format. We used a mixed method approach including qualitative data (mentor interviews and discussion forum data) and quantitative data (pre-post survey data) comparison. Results: A total of 24 youths participated across 3 e-mentoring intervention groups: 9 in the 12-week format (mean age 17.7 years [SD 1.7]) and 15 in the 4-week format (mean age 19.5 years [SD 2.6]), led by 3 trained youth mentors with disabilities, 2 males and 1 female (mean age 22 years [SD 2.64]). Our findings revealed that mentors engaged youths in the e-mentoring program by providing informational, emotional, and tangible support. We noted more instances of mentors providing advice, empathy, and encouragement in the 12-week format compared with the 4-week format. We also found fewer examples of providing advice, developing a rapport, and social support from mentors in the 4-week format. Our findings revealed no significant differences between the 2 groups regarding time spent in the forum, number of logins, number of posts, and self-rated engagement. Conclusions: Mentors in the 12-week and 4-week format engaged participants differently in providing informational and emotional support, although there were no differences in tangible support provided. Mentors reported that the 12-week format was too long and lacked interaction between participants, whereas the 4-week format felt rushed and had fewer detailed responses from mentees.

  • JMIR Pediatr Parent 2020;3(1):e15813

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  Chronic Disease Self-Management in...

  Jan 7, 2020

  Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study

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  Authors List:

  • Anjelica C Saulsberry  
  • Jason R Hodges  
  • Audrey Cole  
  • Jerlym S Porter  
  • Jane Hankins  

  Abstract:

  Background: Advancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease knowledge and self-management skills before transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (STEP) is a public, Web-based, 6-module tool designed to increase transition readiness for youth with SCD. Objective: The objective of our study was to investigate the participation rate of youth with SCD in STEP and its association with transition readiness. Methods: This was a single-center, Institution Review Board–approved, retrospective cohort review. A total of 183 youths with SCD, aged between 12 and 15 years, were offered STEP as an adjunct to in-clinic disease education sessions. Participation rate (number of patients who used at least one STEP module divided by those approached) was calculated. The association among the number of STEP modules completed, disease knowledge, and self-management was explored. Results: Overall, 53 of the 183 approached adolescents completed at least one STEP module, yielding a participation rate in STEP of 29.0%. Of the 53 participants, 37 and 39 adolescents had disease knowledge and self-management confidence rating available, respectively. A positive correlation (r=0.47) was found between the number of STEP modules completed and disease knowledge scores (P=.003). No association was found between the number of modules completed and self-management confidence ratings. Disease knowledge scores were significantly higher among participants who completed ≥3 STEP modules compared with those who completed <3 STEP modules (U=149.00; P=.007). Conclusions: Improvement in disease knowledge in adolescence is critical to ensure the youth’s ability to self-care during the period of transition to adult care. Despite low participation, the cumulative exposure to the STEP program suggested greater promotion of disease knowledge among adolescents with SCD before transfer to adult care.

  • JMIR Pediatr Parent 2020;3(1):e15093

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  Social Media for Parenting

  Dec 20, 2019

  Voices in Evidence-Based Newborn Care: A How-to-Guide on Developing a Parent-Facing Podcast

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  Authors List:

  • Joanna Parga-Belinkie  
  • Raina M Merchant  

  Abstract:

  Podcasting is becoming a more popular form of media. Its use in medical education is being researched—but what about its use in public education? In this tutorial, the authors offer a how-to-guide on starting a public or patient-facing podcast. The authors hope to inspire more physicians to utilize this type of media to share evidence-based information. More research is needed looking into how podcasting can be used to help with patient education.

  • JMIR Pediatr Parent 2019;2(2):e16335

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  General Parenting Education and Training

  Nov 29, 2019

  A Pragmatic Internet Intervention to Promote Positive Parenting and School Readiness in Early Childhood: Initial Evidence of Program Use and Satisfaction

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  Authors List:

  • Lucy McGoron  
  • Hilary Horn Ratner  
  • Kathryn AG Knoff  
  • Erica Hvizdos  
  • Steven J Ondersma  

  Abstract:

  Background: Internet-based parenting programs have the potential to connect families to research-informed materials to promote positive child development. However, such programs can only succeed to the extent that the intended population engages with them. Objective: This study aimed to evaluate engagement in the 5-a-Day Parenting program, a technology-based program designed with low-income families in mind, to promote daily use of 5 specific parenting activities conducive to children’s school readiness. Following earlier pilot data, the program was enhanced with an initial motivational e-intervention and tailored text messages designed to promote engagement. Methods: Parents were recruited from local childcare centers and through a participant registry. We examined rates of receipt of program text messages and use of video-based content on the program website, 3 factors that may affect website use, and satisfaction with key program elements. Results: A total of 360 parents of young children learned about the study and had the opportunity to use the 5-a-Day Parenting website. Of these, 94 parents participated in the study, and 33% (31/94) accessed the video-based content on the website at least once. No association was found between website use and program recruitment approach, program-affiliation message, sociocontextual risk, and baseline use of the five parenting activities. Satisfaction with text messages and video-based content was high. Conclusions: For some parents, technology-based programs appear useful; however, engagement could still be enhanced. Additional research should seek innovative strategies for promoting engagement in Web-based parenting programs.

  • JMIR Pediatr Parent 2019;2(2):e14518

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  Pediatrics

  Nov 21, 2019

  Use of Synchronous Digital Health Technologies for the Care of Children With Special Health Care Needs and Their Families: Scoping Review

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  Authors List:

  • Marissa Bird  
  • Lin Li  
  • Carley Ouellette  
  • Kylie Hopkins  
  • Michael H McGillion  
  • Nancy Carter  

  Abstract:

  Background: Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their families at home has shown promise for improving outcomes and increasing access to care for this medically fragile and resource-intensive population. However, a comprehensive description of the various models of synchronous home digital health interventions does not exist, nor has the impact of such interventions been summarized to date. Objective: We aim to describe the various models of synchronous home digital health that have been used in pediatric populations with special health care needs, their outcomes, and implementation barriers. Methods: A systematic scoping review of the literature was conducted, guided by the Arksey and O’Malley Scoping Review Framework. MEDLINE, CINAHL, and EMBASE databases were searched from inception to June 2018, and the reference lists of the included systematic reviews and high-impact journals were hand-searched. Results: A total of 38 articles were included in this review. Interventional articles are described as feasibility studies, studies that aim to provide direct care to children with special health care needs, and studies that aim to support family members to deliver care to children with special health care needs. End-user involvement in the design and implementation of studies is evaluated using a human-centered design framework, and factors affecting the implementation of digital health programs are discussed in relation to technological, human, and systems factors. Conclusions: The use of digital health to care for children with special health care needs presents an opportunity to leverage the capacity of technology to connect patients and their families to much-needed care from expert health care providers while avoiding the expenses and potential harms of the hospital-based care system. Strategies to scale and spread pilot studies, such as involving end users in the co-design techniques, are needed to optimize digital health programs for children with special health care needs.

  • JMIR Pediatr Parent 2019;2(2):e15106

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  Parenting

  Nov 21, 2019

  Effectiveness of the Volunteer Family Connect Program in Reducing Isolation of Vulnerable Families and Supporting Their Parenting: Randomized Controlled...

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  Authors List:

  • Rebekah Grace  
  • Kelly Baird  
  • Emma Elcombe  
  • Vana Webster  
  • Jacqueline Barnes  
  • Lynn Kemp  

  Abstract:

  Background: Volunteer home visiting is a widely adopted community-based approach to support families by linking isolated or vulnerable families with community volunteers who visit their homes weekly over approximately 12 months. This study seeks to robustly evaluate the effectiveness of this model of support for families with young children. Objective: This paper reports the intention-to-treat analysis of primary and secondary outcomes for a pragmatic randomized controlled trial (RCT) of the Volunteer Family Connect intervention, a volunteer home-visiting program designed to support families with young children who experience social isolation or a lack of parenting confidence and skills. Methods: The RCT was conducted across seven sites in Australia. Overall, 341 families were recruited: 169 intervention (services as usual+volunteer home visits) and 172 control (services as usual) families. Intervention families received the program for 3-12 months. Participants were invited to complete six data collection points over a 15-month period. Primary outcomes were community connectedness and parenting competence. Secondary outcomes included parent physical and mental health, general parent wellbeing, parent empowerment, the sustainability of family routines, and the parent-child relationship. According to the protocol, the program would be judged to be effective if at least one of the primary outcomes was significantly positive and the other was neutral (ie, intervention families did not demonstrate positive or negative outcomes compared to the control group). Results: The intervention group demonstrated significant improvement in the primary outcome variable parenting sense of competence as compared to the control group. Overall, there was no significant difference between the intervention and control groups with regard to the primary outcome variable community connectedness, other than on the “Guidance” subscale of the Social Provisions Scale. Because there were statistically significant findings for the total score of one primary outcome variable “parenting sense of competence” and largely neutral findings for the primary outcome variable “community connectedness,” the program met the previously defined criteria for program effectiveness. In relation to secondary outcomes, intervention families reported significantly higher wellbeing and were significantly more likely to feel that life was improving. Conclusions: The Volunteer Family Connect intervention was considered an effective intervention, with a role to play on the landscape of services available to support vulnerable families with young children. Clinical Trial: Australian New Zealand Clinical Trial Registry ACTRN12616000396426; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370304

  • JMIR Pediatr Parent 2019;2(2):e13023

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  Parenting with Health/Mental...

  Nov 18, 2019

  A Parenting Behavior Intervention (the Strengthening Families Program) for Families: Noninferiority Trial of Different Program Delivery Methods

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  Authors List:

  • Karol Linda Kumpfer  
  • Jaynie Litster Brown  

  Abstract:

  Background: The Strengthening Families Program (SFP) is an evidence-based parent training and youth life skills and drug prevention program traditionally delivered in group settings. Families attend parent and youth classes conducted by trained facilitators. Recently, a 2-disk home-use DVD series was created with the same SFP skills as the group classes for parents and the youth to watch together at home. Additional lesson material was added that included healthy brain development, school success, anger management, dangers of alcohol and drugs, and mindfulness. The SFP DVD reduces SFP delivery costs for agencies and logistic burdens to families. Creative applications of the DVD include holding SFP DVD family discussion groups of multiple families and using SFP DVD video clips as part of a shorter 10-week group class version for parents and the youth. Objective: This study aimed to examine three different DVD implementation scenarios using a noninferiority trial, contrasting target outcomes with an age-matched sample culled from a national norm database of families who completed a standard SFP 14-week class. Methods: The partial eta-square was used to compare effect sizes between the different delivery modalities for relevant programmatic outcomes. We adjusted the effect sizes by demographic measures to determine whether there were site-specific features influencing program outcomes. Results: For the unadjusted effect size comparisons, 13 of the 15 indicated that the home-use DVD outperformed group norms with an average 0.13 effect size estimate difference across the comparisons (28% improvement in the effect size for DVD condition). Comparisons of the home-use DVD condition with the mixed DVD use conditions showed no discernable pattern where one condition consistently outperformed another. Adjusted effect sizes still reinforced the superiority of the DVD conditions; however, there was some shrinkage in the effect sizes as expected with the inclusion of relevant covariates. Conclusions: The home-use DVD shows that it is possible to effectively deliver an affordable family-based intervention using alternative technology outside of the traditional group-based class format. In almost all of the comparisons, the DVD conditions outperformed the group norms, underscoring that low-cost DVDs or viewing the videos on the Web may provide a useful surrogate for costly group-based formats. Future studies may want to improve on the quasi-experimental design by examining programmatic differences based on delivery format using a randomized controlled trial, thus strengthening the causal framework regarding program effects. In addition, the assessment protocol relied on retrospective reporting, which, although this can limit response shift bias, does not separate data collection in time as with a true pre- and posttest design.

  • JMIR Pediatr Parent 2019;2(2):e14751

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  Mental Health Issues in Adolescence

  Nov 11, 2019

  Electronic Health Interventions for Preventing and Treating Negative Psychological Sequelae Resulting From Pediatric Medical Conditions: Systematic Review

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  Authors List:

  • Ashley Brook McGar  
  • Christine Kindler  
  • Meghan Marsac  

  Abstract:

  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.

  • JMIR Pediatr Parent 2019;2(2):e12427

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  Children and Youth with Disabilities

  Oct 10, 2019

  Exploring an Existing Weight Management App for Use With Adolescents and Young Adults With Spina Bifida: Usability Study

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  Authors List:

  • Colleen Stiles-Shields  
  • Brittney Garcia  
  • Kimberly Villota  
  • Elicia Wartman  
  • Adrien M Winning  
  • Grayson N Holmbeck  

  Abstract:

  Background: Adolescents and young adults with spina bifida (AYA-SBs) have unique user needs, given their variable and complex symptom profile. Owing to multiple barriers to prevention and intervention treatments for secondary conditions (eg, obesity), AYA-SBs may benefit from the use of behavioral intervention technologies (BITs). However, as BITs are often designed and tested with typically developing individuals, it is unclear if existing BITs may be usable for AYA-SBs. Objective: This study aimed to evaluate the usability of a high-quality, publicly available, weight management–focused mobile BIT (smartphone app) for AYA-SBs. Methods: Overall, 28 AYA-SBs attending a Young Men’s Christian Association–based summer camp completed 4 structured usability tasks using a weight management app designed for the general public called My Diet Coach (Bending Spoons). Learnability was measured by (1) time to complete task, (2) number of user errors, and (3) correct entry of data when requested by the app. Satisfaction and general usability were measured via self-reported questionnaires and qualitative feedback following interactions with the app. Results: The majority of the sample were able to complete the tasks, with increased completion rates and improved times on second attempts of the tasks (Ps<.05). Errors were common, and discrepancies emerged between quantitative and qualitative feedback such that self-reported measures indicated dissatisfaction but qualitative feedback was generally positive. Suggested improvements to the app included (1) tutorials, (2) simplifying the design, (3) more activity options for those who ambulate by wheelchair, and (4) notifications to prompt use. Conclusions: AYA-SBs were able to learn how to complete specific tasks independently on a weight management app, but design changes consistent with previously proposed user needs were recommended. Rather than designing entirely new BITs, it may be possible to adapt existing technologies to personalize BITs for specific populations such as AYA-SBs.

  • JMIR Pediatr Parent 2019;2(2):e15153

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  Virtual Reality in Pediatrics

  Sep 30, 2019

  Virtual Reality Support for Joint Attention Using the Floreo Joint Attention Module: Usability and Feasibility Pilot Study

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  Authors List:

  • Vijay Ravindran  
  • Monica Osgood  
  • Vibha Sazawal  
  • Rita Solorzano  
  • Sinan Turnacioglu  

  Abstract:

  Background: Advances in virtual reality (VR) technology offer new opportunities to design supports for the core behaviors associated with autism spectrum disorder (ASD) that promote progress toward optimal outcomes. Floreo has developed a novel mobile VR platform that pairs a user receiving instruction on target skills with an adult monitor. Objective: The primary objective of this pilot study was to explore the feasibility of using Floreo’s Joint Attention Module in school-aged children with autism in a special education setting. A secondary objective was to explore a novel joint attention measure designed for use with school-aged children and to observe whether there was a suggestion of change in joint attention skills from preintervention to postintervention. Methods: A total of 12 participants (age range: 9 to 16 years) received training with the Joint Attention Module for 14 sessions over 5 weeks. Results: No serious side effects were reported, and no participants dropped out of the study because of undesirable side effects. On the basis of monitor data, 95.4% (126/132) of the time participants tolerated the headset, 95.4% (126/132) of the time participants seemed to enjoy using Floreo’s platform, and 95.5% (128/134) of the time the VR experience was reported as valuable. In addition, scoring of the joint attention measure suggested a positive change in participant skills related to the total number of interactions, use of eye contact, and initiation of interactions. Conclusions: The study results suggest that Floreo’s Joint Attention Module is safe and well tolerated by students with ASD, and preliminary data also suggest that its use is related to improvements in fundamental joint attention skills.

  • JMIR Pediatr Parent 2019;2(2):e14429

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  Kids' and Adolescents' Use of Technology

  Sep 27, 2019

  The Use of Information Communication Technologies Among Children With Autism Spectrum Disorders: Descriptive Qualitative Study

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  Authors List:

  • Theoneste Ntalindwa  
  • Tanjir Rashid Soron  
  • Mathias Nduwingoma  
  • Evariste Karangwa  
  • Rebecca White  

  Abstract:

  Background: The prevalence of Autism Spectrum Disorder (ASD) appears to be increasing globally due to the complex interaction of multiple biopsychosocial and environmental factors. Mobile phones, tablets, and other electronic gadgets have transformed our means of communication, and have also changed both healthcare and how we learn. These technological enhancements may have a positive impact on the lives of children, but there is currently a global scarcity of information on how information technology influences the education of children with ASD. Objective: This study was conducted in Rwandan schools and communities, and aimed to understand the perceptions of students with ASD, their parents, and their teachers, on the use of Information and Communication Technology (ICT) in the education of those with ASD. Methods: This qualitative descriptive study was conducted from December 2017 to July 2018. Researchers conducted four focus group discussions (FGDs) with 54 participants from different backgrounds: teachers, parents, and students with ASD. Each of the FGDs took approximately two and a half hours. A predefined set of open-ended questions were selected to discover people’s perceptions regarding assistive technologies used in ASD, their effectiveness, the scope of using them in their context, and upcoming challenges during implementation. The interviews were recorded, transcribed, and analyzed. Results: The findings of the study revealed seven key themes: (1) the use of ICT for the education of children with ASD; (2) existing augmentative facilities for learning; (3) current patterns of use of ICT in education; (4) preferred areas of learning for ASD students; (5) integration of ICT into educational programs; (6) areas of interest outside the classroom; and (7) future opportunities and challenges in Rwanda. We found most of the study participants assumed that appropriate technology and related innovations might solve the challenges faced by learners with ASD in classrooms. Moreover, they thought that children with ASD more so enjoyed watching television, playing digital games, and drawing objects using gadgets than interacting with people or playing with other children. Conclusions: The use of various low-cost technical devices can aid with teaching and the education of children with autism in Rwanda. However, this area requires further research to discover the impact ICT can have on the education of children with ASD, so this study may become a starting point for further research in the area.

  • JMIR Pediatr Parent 2019;2(2):e12176

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  Sex education, sex behavior and...

  Sep 17, 2019

  Gender Perspectives on Social Norms Surrounding Teen Pregnancy: A Thematic Analysis of Social Media Data

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  Authors List:

  • Kathryn M Barker  
  • S V Subramanian  
  • Robert Selman  
  • S Bryn Austin  

  Abstract:

  Background: Social concern with teen pregnancy emerged in the 1970s, and today’s popular and professional health literature continues to draw on social norms that view teen pregnancy as a problem—for the teen mother, her baby, and society. It is unclear, however, how adolescents directly affected by teen pregnancy draw upon social norms against teen pregnancy in their own lives, whether the norms operate differently for girls and boys, and how these social norms affect pregnant or parenting adolescents. Objective: This research aims to examine whether and how US adolescents use, interpret, and experience social norms against teen pregnancy. Methods: Online ethnographic methods were used for the analysis of peer-to-peer exchanges from an online social network site designed for adolescents. Data were collected between March 2010 and February 2015 (n=1662). Thematic analysis was conducted using NVivo software. Results: American adolescents in this online platform draw on dominant social norms against teen pregnancy to provide rationales for why pregnancy in adolescence is wrong or should be avoided. Rationales range from potential socioeconomic harms to life-course rationales that view adolescence as a special, carefree period in life. Despite joint contributions from males and females to a pregnancy, it is primarily females who report pregnancy-related concerns, including experiences of bullying, social isolation, and fear. Conclusions: Peer exchange in this online forum indicates that American adolescents reproduce prevailing US social norms of viewing teen pregnancy as a social problem. These norms intersect with the norms of age, gender, and female sexuality. Female adolescents who transgress these norms experience bullying, shame, and stigma. Health professionals must ensure that strategies designed to prevent unintended adolescent pregnancy do not simultaneously create hardship and stigma in the lives of young women who are pregnant and parent their children.

  • JMIR Pediatr Parent 2019;2(2):e13936

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