"Whenever you need support, you first turn to the group": motivations and functions of WhatsApp groups for youth living with HIV.

Social support is a critical component of achieving positive health outcomes for youth living with HIV (YLWH). Mobile health (mHealth) has significant potential for providing social support to YLWH. However, little is known about the domains of social support most needed by YLWH which mHealth interventions might address. Drawing on the spontaneous creation of WhatsApp support groups by YLWH in Nairobi, Kenya, we characterized Kenyan YLWH's social support needs and potential roles of social media groups in meeting them. We conducted interviews and focus-groups with 68 YLWH, 24 caregivers and 20 healthcare workers, and observed two YLWH-led WhatsApp groups for 6 weeks. Youth reported that existing support systems, including family and healthcare workers, already provided informational and instrumental support. However, they emphasized unmet companionship and emotional support needs, leading to isolation, hopelessness, and medication adherence challenges. Participants identified connection with other YLWH as a unique source of emotional and companionship support that allowed them to feel more secure and less isolated. Interviews and observed WhatsApp chats demonstrated that WhatsApp groups were a desirable medium for companionship support that overcame barriers to in-person connection.

A Social Media Group Cognitive Behavioral Therapy Intervention to Prevent Depression in Perinatal Youth: Stakeholder Interviews and Intervention Design.

BACKGROUND: Adolescents and young adults aged <25 years (youth) are at a higher risk of perinatal depression than older adults, and they experience elevated barriers to in-person care. Digital platforms such as social media offer an accessible avenue to deliver group cognitive behavioral therapy (CBT) to perinatal youth. OBJECTIVE: We aim to develop the Interactive Maternal Group for Information and Emotional Support (IMAGINE) intervention, a facilitated social media group CBT intervention to prevent perinatal depression in youth in the United States, by adapting the Mothers and Babies (MB) course, an evidence-based in-person group CBT intervention. In this study, we report perspectives of youth and health care providers on perinatal youths' mental health needs and document how they informed IMAGINE design. METHODS: We conducted 21 semistructured in-depth individual interviews with 10 pregnant or postpartum youths aged 14-24 years and 6 health care workers. All interviews were recorded, transcribed, and analyzed using deductive and inductive approaches to characterize perceptions of challenges and facilitators of youth perinatal mental health. Using a human-centered design approach, stakeholder perspectives were incorporated into the IMAGINE design. We classified MB adaptations to develop IMAGINE according to the Framework for Modification and Adaptation, reporting the nature, timing, reason, and goal of the adaptations. RESULTS: Youth and health care workers described stigma associated with young pregnancy and parenting, social isolation, and lack of material resources as significant challenges to youth mental wellness. They identified nonjudgmental support, peer companionship, and access to step-by-step guidance as facilitators of youth mental wellness. They endorsed the use of a social media group to prevent perinatal depression and recommended that IMAGINE facilitate peer support, deliver content asynchronously to accommodate varied schedules, use a confidential platform, and facilitate the discussion of topics beyond the MB curriculum, such as navigating support resources or asking medical questions. IMAGINE was adapted from MB to accommodate stakeholder recommendations and facilitate the transition to web-based delivery. Content was tailored to be multimodal (text, images, and video), and the language was shortened and simplified. All content was designed for asynchronous engagement, and redundancy was added to accommodate intermittent access. The structure was loosened to allow the intervention facilitator to respond in real time to topics of interest for youth. A social media platform was selected that allows multiple conversation channels and conceals group member identity. All adaptations sought to preserve the fidelity of the MB core components. CONCLUSIONS: Our findings highlight the effect of stigmatization of young pregnancy and social determinants of health on youth perinatal mental health. Stakeholders supported the use of a social media group to create a supportive community and improve access to evidence-based depression prevention. This study demonstrates how a validated intervention can be tailored to this unique group.

Digital Educational Support Groups Administered through WhatsApp Messenger Improve Health-Related Knowledge and Health Behaviors of New Adolescent Mothers in the Dominican Republic: A Multi-Method Study.

BACKGROUND: (1)In limited-resource settings such as the Dominican Republic, many factors contribute to poor health outcomes experienced by adolescent mothers, including insufficient support and/or health knowledge. In response, we designed a digital educational support group, administered through WhatsApp Messenger, for new adolescent mothers. The purpose of this study was to assess if participation in this digital support group could improve health outcomes and health behaviors. METHODS: (2)Participants completed questionnaires with a health literacy screener, demographic items, knowledge questions, the Index of Autonomous Functioning, and five Patient Reported Outcomes Measurement Information System scales before and after the moderator-led intervention. Differences between pre- and post-intervention scores were calculated and perceptions of the intervention were explored through in-depth interviews analyzed with content analysis. Participants' well-baby visit attendance and contraceptive use were compared to that of controls and a national sample. RESULTS: (3)Participants' (N = 58) knowledge scores increased (p < 0.05). Participants were 6.58 times more likely to attend well-baby visits than controls (95% CI: 2.23-19.4) and their contraceptive use was higher than that of the national sample (p < 0.05). Participants indicated the intervention was enjoyable and beneficial. CONCLUSION: (4)This adolescent-centered digital intervention is a promising method to improve health outcomes and health behaviors of young mothers in limited-resource settings.

Using Qualitative Perspectives of Adolescents with Sickle Cell Disease and Caregivers to Develop Healthcare Transition Programming.

Youth with sickle cell disease (SCD) are living longer, requiring transition from pediatric to adult health care. Transition programs have been created to improve transition readiness and help patients take responsibility for their health. The aim of this study was to explore the usefulness of current transition materials and identify unmet transition needs from the perspective of adolescents with sickle cell disease (SCD) and caregivers to refine transition programming and interventions. Focus groups were conducted with 14 adolescents with SCD (Mean age = 14.6 years, SD = 1.9) and 20 caregivers (Mean age = 43.2 years, SD = 9.3) to gather perspectives about transition to adult care, current transition program materials and recommendations for future programming. Four themes emerged: (a) transition skills and knowledge needs, (b) change in health care responsibility, (c) concerns with adult SCD care, and (d) useful transition readiness strategies and resources. The findings of this study were used to develop Web based educational modules, experiential transition skills learning, and an adolescent and caregiver hematology support group. Findings highlight the need to conduct periodic readiness assessments, provide opportunities and scaffolding to learn skills based on readiness level, and help build social support networks to encourage and facilitate learning.

Transition from pediatric to adult care in sickle cell disease: perspectives on the family role.

Transition from pediatric to adult care poses challenges for adolescents with sickle cell disease (SCD). This study explored the transition perspectives of adolescents with SCD, their siblings, and caregivers. Focus groups were conducted with 12 African American families. Adolescents, siblings, and caregivers demonstrated awareness of transition and need for disease management responsibility. Siblings' and caregivers' concerns included adolescent medication adherence. Family concerns included leaving the pediatric environment and adult providers' lack of knowledge. Families recommended more transition preparation opportunities. Family members' perspectives are valuable in informing transition planning. Family-focused interventions designed to prepare and support families during transition are necessary.

Impact of physicians' personal discomfort and patient prognosis on discussion of fertility preservation with young cancer patients.

OBJECTIVE: This study sought to determine if physician's personal discomfort with the topic of FP and a patient's prognosis would have an impact on the likelihood of discussing FP with cancer patients. METHODS: Data from larger studies of qualitative semi-structured interviews with pediatric and adult oncologists were analyzed using grounded theory and crystallizing immersion method to examine the themes of "personal comfort" and "patient prognosis" in relation to discussion. RESULTS: Results showed that, across both physician types, the majority of respondents' personal comfort with the topic of FP was related to the likelihood of discussion. Personal discomfort manifested as: (a) lack of knowledge; (b) language/cultural barriers; (c) perception that subject of FP adds more stress to situation; (d) general uncertainty about success of FP methods. Data also indicate physicians do not feel discussions are appropriate for patients with poor prognosis. CONCLUSION: Despite the ASCO guidelines suggesting physicians should discuss FP with all patients, the majority of physicians are not following these guidelines. PRACTICE IMPLICATIONS: Improved training on recognition of such biases and communication strategies may improve the quality and frequency of such discussions. Involving the entire healthcare team in discussions may alleviate the need for physicians to have sole responsibility.