Caregivers of individuals living with dementia are at increased risk for social isolation, stress-related illnesses, and other adverse outcomes. Participation in a caregiver support group can provide connections to others in similar situations and to resources and strategies, all of which likely reduce adverse outcomes. Prior to the COVID-19 pandemic, caregiver support groups were primarily conducted in-person. With the proliferation of online support groups post-pandemic, we believe a framework for optimal online support group management and implementation is needed to prioritize caregiver safety and well-being. Due to the COVID-19 pandemic, the Boston-area frontotemporal dementia (FTD) caregiver peer support group shifted to meeting weekly via Zoom in March 2020. Trained support group facilitators (SGFs) attended every meeting to manage online meeting technology, promote adherence to group guidelines, and record meeting notes. New members were screened to confirm FTD caregiver status and approved for registration. Once registered, they were added to the group mailing list and received weekly emails with meeting links and follow-up resources. Since March 2020, 282 unique caregivers have registered for support group and 228 have attended at least one session. Attendance each year has increased from 426 group attendees in to 914 in 2024. Average weekly attendance has grown from 11 members per meeting in 2020 to 18 in 2024. Support group members attended from fourteen states in 2024, including individuals from more rural areas without local in-person support groups. Barriers to attending support group have diminished due to online access. Support group members have provided qualitative feedback about areas of support group that were most valuable to them, including receiving weekly follow-up emails, ease of technology, and sense of community with other members. The framework and guidelines developed by the SGFs for this support group create a safe and welcoming environment for caregivers to share all aspects of their caregiving journey. Providing caregivers of PLWD with a regular online support group with established guidelines for behavior can diminish the isolation that dementia caregivers often experience, promoting opportunity for high quality care for care recipients.

ABSTRACT Objective Hoarding behaviour (HB) is associated with psychological distress and risk to personal and public safety. Despite the need for support, individuals with HB commonly do not seek or engage with help/treatment. The current study explored the experiences of help-seeking and barriers and facilitating factors to help-seeking in this population. Method Semi structured interviews were conducted with fourteen individuals who self-identified as engaging in HB. The data was analysed using reflexive thematic analysis. Results The most prominent theme (control) referred to the importance that participants’ placed on being ‘in control’ of the help-seeking process. Participants described feeling both helpless/out of control and requiring complete control at different points. Preferences towards forms of help-seeking which facilitated high levels of personal control were expressed (i.e. in-house item management support, online information and support help-seeking and in-person support groups). Themes of poor literacy around mental health/hoarding disorder and stigma were also identified. Conclusions This is the first study to identify how limited help-seeking in hoarding may be partially explained by specific perceptions of formal treatment (i.e. predicting a loss of control, likely stigma) with implications (e.g. pre-treatment education on the collaborative nature of CBT) for clinical pathways.

Breastfeeding rates among US mothers, particularly Black or African American mothers, fall short of recommended guidelines. Despite the benefits of human milk, only 24.9% of all infants receive human milk exclusively at 6 months. Our team previously explored the key content areas a mobile health intervention should address and the usability of an initial prototype of the Knowledge and Usage of Lactation using Education and Advice from Support Network (KULEA-NET), an evidence-based mobile breastfeeding app guided by preferences of Black or African American parents. This study aimed to identify the preferences and acceptability of additional features, content, and delivery methods for an expanded KULEA-NET app. Key social branding elements were defined to guide app development as a trusted adviser. The study also aimed to validate previous findings regarding approaches to supporting breastfeeding goals and cultural tailoring. We conducted a qualitative study using in-depth interviews and focus groups with potential KULEA-NET users. A health branding approach provided a theoretical framework. We recruited 24 participants across 12 interviews and 2 focus groups, each with 6 participants. The Data methods aligned with qualitative research principles and concluded once saturation was reached. Given the focus on cultural tailoring, team members who shared social identities with study participants completed data collection and coding. Two additional team members, 1 with expertise in social branding and 1 certified in lactation, participated in the thematic analysis. All participants identified as Black or African American mothers, and most interview participants (7/12, 58%) engaged in exclusive breastfeeding. In total, 4 themes were recognized. First, participants identified desired content, specifying peer support, facilitated access to experts, geolocation to identify resources, and tracking functions. Second, delivery of content differentiated platforms and messaging modality. Third, functionality and features were identified as key factors, highlighting content diversity, ease of use, credibility, and interactivity. Finally, appealing aspects of messaging to shape a social brand highlighted support and affirmation, inclusivity and body positivity, maternal inspiration, maternal identity, social norms, and barriers to alignment with aspirational maternal behaviors as essential qualities. Crosscutting elements of themes included a desire to communicate with other mothers in web-based forums and internet-based or in-person support groups to help balance the ideal medical recommendations for infant feeding with the contextual realities and motivations of mothers. Participants assigned high value to personalization and emphasized a need to achieve both social and factual credibility. This formative research suggested additional elements for an expanded KULEA-NET app that would be beneficial and desired. The health branding approach to establish KULEA-NET as a trusted adviser is appealing and acceptable to users. Next steps include developing full app functionality that reflects these findings and then testing the updated KULEA-NET edition in a randomized controlled trial.

Normal pressure hydrocephalus (NPH) is a neurodegenerative process for which our team previously demonstrated the efficacy of an in-person NPH support group. However, in this study, we aimed to examine the educational benefits and efficacy of a virtual NPH support group. Monthly virtual meetings were held from July 2022 to June 2023 for NPH patients and their friends/families. The format of each meeting consisted of a physician-led presentation, question and answer sessions, group discussions, and polls to evaluate the meeting. The survey included questions to gather participant demographics and evaluate the benefits of education, emotional well-being, and virtual format. Over one year, 11 virtual support group meetings were held and attended by 343 participants. The average survey ratings for gained knowledge, self-efficacy, and satisfaction ranged from 4.15 to 4.60 on a five-point scale, demonstrating strongly positive outcomes since a score above 3 is considered favorable. In this study, patients reported improved education, coping and communication skills, and emotional support. We also demonstrated high participant satisfaction and continued interest in meetings. This study demonstrates that virtual, physician-led support groups can be effective in providing education, emotional, and peer support for NPH patients and their friends/families. Improved knowledge and accessibility to educational and social resources can improve patient health outcomes by improving adherence to physician recommendations.

Rare forms of dementia bring unique difficulties related to age of onset, impact on family commitments, employment and finances, and also bring distinctive needs for support and care. The aim of the present study was to explore and better understand what the concept of support means for people living with different rare dementia (PLwRD) and their care-partners who attend ongoing support groups. Representing seven types of rare dementia, source material was collected from 177 PLwRD and care-partners attending in-person support groups, with the goal of developing research-informed group poems, co-constructed by a facilitating poet. Data were analyzed through a three-step process involving linguistic analysis followed by structured-tabular thematic analysis, relational analysis, and concluded with an online survey about participation in the study. Linguistic analysis found that co-constructed poems remained faithful to the original source material offered by participants. These results provided confidence to subsequently conduct a thematic analysis of eight completed poems, identifying 15 initial themes. A further relational analysis between themes drew on six relational forms and identified an overarching theme "A Community, Not an Intervention" that describes the process of support for this population. Survey results revealed a varied but generally positive response to writing whilst reactions to the completed poems reflected strong emotional connections that resonated with personal experience. This is the first study that we are aware of to explore the use of co-constructed research poetry to better understand how in-person support groups provide support for people impacted by different rare dementias. The poems portray the complex, dynamic and relational aspects of how support groups provide a necessary form of connection for this population. An overarching theme characterized the support groups as a community rather than an intervention. Findings are discussed within the theoretical context of positive social identity, social health and biosocial groups. The results also demonstrate that solicited words from participants can be faithfully portrayed in poems co-created by an experienced poet. This novel finding expands methodological options for the use of research poetry in healthcare and also offers support group members further creative choices for engagement, connection and communication.

Patients having bariatric surgery require comprehensive support both socially and professionally for successful surgery outcomes. With the outbreak of Coronavirus disease 2019 (COVID-19), many bariatric patients were negatively impacted due to stay-at-home orders and social distancing practices. This study used a qualitative research design using a phenomenological approach to gain a better understanding of bariatric patients’ difficulties and lifestyle challenges between 3 months and 6 years after having bariatric surgery, and to determine the impact that COVID-19 had on patients’ daily lives. A sample of 17 adults were recruited from three hospitals in the Western Cape Province of South Africa. In-depth interviews were conducted with open-ended questions that allowed participants to express their feelings and describe their lived experiences during the pandemic. The interviews were audio recorded and transcribed verbatim. The research data were analysed using inductive content analysis. Most participants were women (88.2%) and married (64.7%). The study identified five main categories: (1) physical impact; (2) psychological impact; (3) social impact; (4) medical and follow-up care; and (5) financial impact. The study yielded results that were in support of existing COVID-19 bariatric surgery literature. Many participants in the study regained weight during the pandemic due to stress and the disruption of physical routines and healthy eating habits. Many experienced an increased anxiety of contracting the virus due to a compromised immune system. The need for professional support during this time was emphasised. All follow-up appointments were cancelled due to the pandemic. Virtual support groups were not favoured above in-person support groups. This research study concluded that bariatric patients regained weight due to the pandemic because of their healthy routines being disrupted. Bariatric patients are reliant on social and professional support for successful outcomes. In-person support group meetings are highly favoured amongst these patients.

BackgroundInternally displaced persons (IDPs) in Nigeria face a high burden of mental health disorders, with limited access to evidence-based, culturally relevant interventions. Life skills education (LSE) is a promising approach to promote mental health and psychosocial well-being in humanitarian settings. This study aims to evaluate the effectiveness and implementation of a culturally adapted LSE program delivered through in-person and mobile platforms among IDPs in Northern Nigeria.MethodsThis cluster-randomized hybrid type 2 effectiveness-implementation trial will be conducted in 20 IDP camps or host communities in Maiduguri, Nigeria. Sites will be randomly assigned to receive a 12-week LSE program delivered either through in-person peer support groups or WhatsApp-facilitated mobile groups. The study will recruit 500 participants aged 13 years and older. Intervention effectiveness outcomes include the primary outcome of change in post-traumatic stress disorder (PTSD) symptoms assessed using the PCL-5 scale, and secondary outcomes of depression, anxiety, well-being, and life skills acquisition. Implementation outcomes will be assessed using the Acceptability of Intervention Measure (AIM), Intervention Appropriateness Measure (IAM), and Feasibility of Intervention Measure (FIM). Both sets of outcomes will be compared between the in-person and mobile delivery groups. Quantitative data will be analyzed using mixed-effects linear regression models, while qualitative data will be examined through reflexive thematic analysis. The study will be guided by the Reach-Effectiveness-Adoption-Implementation-Maintenance (RE-AIM) framework.DiscussionThe RESETTLE-IDPs study addresses key gaps in the evidence base on mental health interventions for conflict-affected populations. It focuses on underserved IDP populations, evaluates the comparative effectiveness of in-person and mobile-delivered LSE, and incorporates implementation science frameworks to assess contextual factors influencing adoption, fidelity, and sustainability. The study employs a community-based participatory approach to enhance cultural relevance, acceptability, and ownership. Findings will inform the development and scale-up of evidence-based, sustainable mental health interventions for IDPs in Nigeria and other humanitarian contexts.Trial sponsorDalhousie University, 6299 South St, Halifax, NS B3H 4R2, Canada.Trial registrationClinicalTrials.gov, NCT06412679 Registered 15 May 2024.

BackgroundThe Ukrainian crisis, sparked by the Russian invasion, has generated one of the most extensive refugee crises in modern history. Addressing the mental health challenges of Ukrainian refugees is critical to promoting their resilience and successful integration into host communities. Traditional support group interventions might be challenging to implement for geographically dispersed populations, making the metaverse an innovative and inclusive platform for providing much-needed support to such populations.Methods/designDisplaced Ukrainian refugee adults (18 years or older) without current psychiatric diagnoses or current involvement in therapeutic interventions are included in the study. Participants are randomized to one of three conditions: (1) Metaverse Support Groups, (2) In-Person Support Groups, or (3) Waitlist. Both intervention groups (Metaverse and In-Person) undergo 5 support group sessions, and data are collected at baseline, mid-intervention, post-intervention, and 3-month follow-up. Primary outcomes are depressive symptomatology and anxiety. Secondary outcomes are perceived social support, well-being, and gender-based violence awareness.DiscussionTo our knowledge, this is the first attempt to test the efficacy of support groups in the Metaverse for the Ukrainian refugee population. This study can thus add substantially to the body of knowledge on effective interventions and policies for refugees.Trial registrationClinicalTrials.gov Identifier: NCT06142032 (https://clinicaltrials.gov/study/NCT06142032). Registered on November 8, 2023.

Dermatological conditions are one of the most common reasons for clinical visits. Not only can they have a profound effect on patients' cosmetic appearances, but they also have a notable impact on their self-esteem, confidence, and body image, ultimately causing psychological distress. As social networking platforms become the new public space for discussion, patients have transitioned from in-person support groups to seeking online advice, support, and guidance. We conducted queries across various social networking platforms to identify and analyze active social networking support groups for common dermatological conditions. Thirty-six online support groups were identified for the top four dermatological conditions with the highest disability-adjusted life years (DALYs). We analyzed, recorded, and categorized each group according to target dermatological condition, social networking platform, support group host, engagement rate, and content of posts. In the groups identified, the majority were patient-driven (88.89%). When evaluating the engagement activity and frequency, 77.78% (n = 28) of groups had daily posts and 22.22% (n = 8) posted weekly. Additionally, we discovered a notable feature among support groups on Facebook and Reddit being more interactive and collaborative. This underscores the importance of enabling patients with dermatological conditions to generate posts and engage in open discourse, rather than absorbing single-user generated content from other popular platforms. Understanding the current landscape of social networking support groups can aid clinicians in disseminating information and resources for patients to create communities with other patients.

BackgroundSubstance use disorder treatment and recovery support services are critical for achieving and maintaining recovery. There are limited data on how structural and social changes due to the COVID-19 pandemic impacted individual-level experiences with substance use disorder treatment-related services among community-based samples of people who inject drugs.MethodsPeople with a recent history of injection drug use who were enrolled in the community-based AIDS Linked to the IntraVenous Experience study in Baltimore, Maryland participated in a one-time, semi-structured interview between July 2021 and February 2022 about their experiences living through the COVID-19 pandemic (n = 28). An iterative inductive coding process was used to identify themes describing how structural and social changes due to the COVID-19 pandemic affected participants’ experiences with substance use disorder treatment-related services.ResultsThe median age of participants was 54 years (range = 24–73); 10 (36%) participants were female, 16 (57%) were non-Hispanic Black, and 8 (29%) were living with HIV. We identified several structural and social changes due the pandemic that acted as barriers and facilitators to individual-level engagement in treatment with medications for opioid use disorder (MOUD) and recovery support services (e.g., support group meetings). New take-home methadone flexibility policies temporarily facilitated engagement in MOUD treatment, but other pre-existing rigid policies and practices (e.g., zero-tolerance) were counteracting barriers. Changes in the illicit drug market were both a facilitator and barrier to MOUD treatment. Decreased availability and pandemic-related adaptations to in-person services were a barrier to recovery support services. While telehealth expansion facilitated engagement in recovery support group meetings for some participants, other participants faced digital and technological barriers. These changes in service provision also led to diminished perceived quality of both virtual and in-person recovery support group meetings. However, a facilitator of recovery support was increased accessibility of individual service providers (e.g., counselors and Sponsors).ConclusionsStructural and social changes across several socioecological levels created new barriers and facilitators of individual-level engagement in substance use disorder treatment-related services. Multilevel interventions are needed to improve access to and engagement in high-quality substance use disorder treatment and recovery support services among people who inject drugs.

Abstract Background It is estimated that rare forms of dementia account for about 7% of all dementias and 10–20% of dementias for those under the age of 65. These conditions bring unique difficulties related to age of onset, impact on family commitments, employment and finances, and also bring distinctive needs for support and care in contrast to Alzheimer’s disease and vascular dementia, the two leading causes of dementia. The aim of the present study was to explore and better understand what the concept of support means for people living with different rare dementia (PLwRD) and their care-partners who attend ongoing support groups. Method Using research poetry, an arts-based health research methodology, this mixed-methods study solicited words (source material) from 177 PLwRD and care-partners at eight in-person support groups. Poems were co-created by participants representing seven types of rare dementia and a facilitating poet. The source material and completed poems were analysed through a three-step process involving linguistic analysis followed by structured-tabular thematic analysis, relational analysis, and concluded with an online survey about participation in the study. Results The results of the linguistic analysis found that co-constructed poems remained faithful to the original source material provided by PLwRD and care-partners. These results provided confidence to subsequently conduct a thematic analysis of eight completed poems, which identified 15 initial themes among seven rare dementia types and one mixed-rare dementia group. A further relational analysis between themes drew on 6 different relational forms (comparative, semiotic, evocative, contingency, reciprocal, conceptual part-whole) and identified an overarching theme ‘A Community, Not an Intervention’ that describes the process of support (Dynamic Sharing, Strategies and Information, Part of a Community, Connecting with Peers, Professional Input, Transcendence, Effectual Actions) for this population. Survey results revealed a varied but generally positive response to writing whilst reactions to reading and listening to the completed poems reflected strong emotional connections that resonated with personal experience. The poems were also seen as a vehicle to communicate with healthcare professionals and the general public about rare dementia. Conclusions This is the first study that we are aware of to explore the use of co-constructed research poetry to better understand how in-person support groups provide support for people impacted by different rare dementias. The poems portray the complex, dynamic and relational aspects of how support groups provide a necessary form of connection for this population. Through rigorous mixed-method analysis, multiple sub-themes and an overarching theme characterised the support groups as a community rather than an intervention. Findings are discussed within the theoretical context of positive social identity, social health and biosocial groups. The results also confidently demonstrate that solicited words from participants can be faithfully portrayed in poems co-created by an experienced poet. This novel finding expands methodological options for the use of research poetry co-constructed from personal experiences and also offers support group members further creative choices for engagement, connection and communication. Future research is proposed that uses research poetry to longitudinally explore biosociality, biosolidarity, agency and active citizenship for PLwRD and care-partners within support groups.

Autistic children and their caregivers in Argentina often lack access to information, resources and evidence-based interventions. Caregiver empowerment may help support families to uphold their child’s rights and access suitable education and support. This study aimed to examine the perceptions on empowerment of caregivers of autistic children in Argentina. This was a phenomenological, qualitative study. We conducted 32 semi-structured individual interviews remotely. Participants included caregivers, health service providers, non-governmental organisation representatives, special education teachers and policy representatives. Data were analysed thematically. We developed three main themes: Caregiver agency: from intuitive coping strategies to entrepreneurship; ‘I had to cut down on therapy’: Economic instability and inequality affecting service access; and Equipping caregivers to be empowered. Both caregivers and professionals talked about the contribution of socio-economic inequalities to caregivers’ sense of disempowerment. Caregivers identified coping strategies and discussed their experiences with advocacy. They expressed that in-person and online support groups have an empowering effect. Based on participant views, strategies supporting caregiver empowerment may involve: interventions are co-designed by professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.Lay abstractCaregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations’ representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.

Behçet disease (BD) is a type of vasculitis with relapsing episodes and multisystemic clinical features, associated with significant morbidity and impact on patients' lives. People affected by BD often participate in discussions of their illness experiences. In-person support groups have limited physical accessibility and a relative lack of anonymity; however, online communities have become increasingly popular. This study investigates the perspectives and experiences of people affected by BD by examining the content shared and discussed on a subforum of the website Reddit-a popular online space for anonymous discussions. All discussion threads posted between March 9, 2021, and March 12, 2022, including posts and comments, were examined from the subforum "r/Behcets," an anonymous online community of 1100 members as of March 2022. A Grounded Theory analysis was completed to identify themes and subthemes, and notable quotes were extracted from the threads. Parameters extracted from each post included the number of comments, net upvotes, category, and subcategories. Two research team members read the posts separately to identify initial codes and themes to ensure data saturation was achieved. Six recurring themes were identified: (1) finding connectedness and perspectives through shared experiences, (2) struggles of the diagnostic odyssey, (3) sharing or inquiring about symptoms, (4) expressing strong emotions relating to the experience of BD, (5) the impact of BD on quality of life and personal relationships, as well as (6) COVID-19 and the COVID-19 vaccination in relation to BD. Subthemes within each theme were also identified and explored. This novel study provides a qualitative exploration of the perspectives and experiences of people affected by BD, shared in the anonymous and accessible online community of Reddit. The study found that people impacted by an illness seek to connect and receive validation through shared conditions and experiences. By examining the content shared in r/Behcets, this study highlights the needs of people affected by BD, identifying gaps and areas for improvement in the in-person support they receive.

For adolescents and young adults, a cancer diagnoses can magnify feelings of social isolation at an inherently vulnerable developmental stage. Prior studies have highlighted the importance of peer groups during cancer treatment. Support groups help foster connection and resilience, but patients find in-person participation difficult due to a variety of factors. Additionally, physical changes brought on by cancer makes these patients hesitant to meet in person. The COVID-19 pandemic magnified these difficulties. Virtual reality (VR) allows for the creation of a therapist-curated, computer-generated social space that potentially enables support groups for this population. This protocol describes a pilot study examining the efficacy, feasibility, and acceptability of a social VR support group intervention for adolescent and young adult patients with cancer. We approached 20 participants aged 17-20 years, and 16 agreed to participate. Moreover, 1 participant dropped out due to hospitalization. Participants attended virtual, professionally facilitated support groups using Meta Quest VR headsets. The groups consisted of 4 participants and 1 facilitator, amounting to a total of 22 individual sessions. Each session lasted 45-60 minutes and took place weekly for 4-6 weeks. The primary aim of this study was to collect quantitative and qualitative data on the feasibility and acceptability of the intervention. Feasibility was measured through session participation rates and overall retention rates. The acceptability of the intervention was explored through brief in-person interviews with participants at the end of the final intervention session. The secondary aim of this study was to collect data on the preliminary efficacy of the intervention in decreasing symptoms of participant depression and anxiety and increasing positive affect and resiliency. In total, 15 patients aged 17-20 years participated in 22 sessions between November 5, 2019, and July 8, 2021. The median age was 19 (IQR 17-20) years. Overall, 10 (62%) participants identified as male, 5 (31%) as female, and 1 (6%) as transgender female. Furthermore, 5 (31%) participants identified as Hispanic, 1 (6%) identified as non-Hispanic Asian, 3 (19%) identified as non-Hispanic Black, 6 (38%) identified as non-Hispanic White, and 1 (6%) identified as other race or ethnicity. Hematologic malignancies or bone marrow failure was the most common diagnosis (8/16, 50%). The mean attendance rate was 72.8% (SD 25.7%) and retention was 86.7% (SD 0.35%). Moreover, 45% (10/22) of sessions had to be postponed by a week or more due to unexpected participant scheduling issues. The use of VR to deliver psychosocial support for adolescents and young adults with cancer may reduce common barriers associated with attending in-person peer support groups while improving quality-of-life measures. The data from this study will inform future studies focused on conducting VR support groups in other rare disease populations, including older adults with cancer. DERR1-10.2196/48761.

BackgroundLimited data exist regarding the type of support patients need when experiencing early pregnancy loss (EPL). The objective of this study is to explore how patients emotionally cope with EPL and to assess if there is interest in a peer EPL support program with a self-compassion component.MethodsWe conducted semi-structured interviews with patients who experienced EPL in the past two years. We evaluated the kinds of support that patients felt were most helpful, interest in a possible peer EPL support person, and suggestions for the creation of such a program. Content analysis was utilized to analyze the data and identify themes.ResultsTwenty-one individuals participated in the study. Approximately 52.3% (n = 11) of interviewees reported expectant management of their EPL, 23.8% (n = 5) reported medication management, and 23.8% (n = 5) reported undergoing dilation and curettage. We identified five themes: (1) therapy and in-person support groups are helpful when experiencing EPL, but are sometimes inaccessible; (2) social media support groups are initially advantageous for creating a sense of solidarity, but in the long term can be triggering; (3) support from a peer who has also experienced EPL is uniquely valuable; (4) developing self-compassion is important in emotionally coping with EPL; and (5) there is a demand for emotional and informational support following EPL.ConclusionsGiven the unique support participants identified receiving from a peer with shared lived experience, there is interest in a peer EPL support program with a self-compassion component for emotional and informational support following EPL.

Individuals suffering from Opioid Use Disorder and other socially stigmatized conditions often rely on peer support groups to find comfort and motivation while treating their condition. Many may face barriers in accessing peer support treatment, such as shame and social stigma, seclusion, or mobility restrictions. In this study, we quantitatively characterize the potential of the Reddit community in offering these individuals an online alternative to receiving peer support. By analyzing the social interactions of thousands of users during the start of opioid use recovery, we uncover that a particular Reddit community exhibits many characteristics similar to in-person peer support groups, featuring the exchange of support, trust, status, and similar experiences. We find that the supportive behavior of this community nudges users to change their personal behavior, and promotes abandoning opioid-related communities in favor of recovery-oriented relationships. Finally, we find that recognition, acknowledgment, and knowledge exchange are the most relevant factors in sustained engagement with the recovery community. Given this evidence, we suggest that this online community may constitute a complement or a surrogate to peer support groups when in-person meetings are not desirable or possible. Our work might inspire harm reduction policies and interventions to favor successful rehabilitation and is fundamental for future research about the use of digital media for recovery support.

INTRODUCTION: Limited data exist regarding the type of support patients need when experiencing early pregnancy loss (EPL). The objective of this study is to explore how patients emotionally cope with EPL and to assess whether there is interest in a peer EPL doula program with a self-compassion component. METHODS: We conducted semistructured interviews with 21 patients who had experienced EPL in the past 2 years. We evaluated the kinds of support that patients felt were most helpful, interest in a possible peer EPL doula intervention, and concerns or suggestions for the creation of such a program. Content analysis was utilized to process the data and identify themes. RESULTS: 52.38% (n=11) of interviewees reported expectant management of their EPL, 23.81% (n=5) reported medication management, and 23.81% (n=5) reported undergoing a dilation-and-curettage procedure. Participants represented various races and ethnicities, income brackets, and insurance statuses. We identified five themes: 1) therapy and in-person support groups are helpful when experiencing EPL, but are sometimes inaccessible; 2) social media support groups are initially advantageous for creating a sense of solidarity, but in the long term can be triggering; 3) support from a peer who has also experienced EPL is valuable; 4) developing self-compassion is important in emotionally coping with EPL; and 5) there is a demand for emotional and informational support after EPL. CONCLUSION: Given the unique types of support participants identified in this study, a peer EPL doula could feasibly provide the emotional and informational support patients desire when experiencing an EPL.

MP19-19 PRIORITIZED RESEARCH QUESTIONS ON THE USE OF ACTIVE SURVEILLANCE FOR THE MANAGEMENT OF PROSTATE CANCER: RESULTS FROM PCASRI CONFERENCE

Facebook groups for people who stutter: An extension of and supplement to in-person support groups

BackgroundPeople with young onset dementia can experience stigmatization and social isolation. Peer support provides an opportunity for social connection and support. However, access to in-person peer support groups varies across the UK, and during the COVID-19 pandemic in-person peer support groups moved online.ObjectivesWe explored the experiences of people with young onset dementia attending peer support meetings through online videoconferencing platforms, and identified barriers and facilitators.MethodsA focus group study with existing peer support groups for people with young onset dementia that had their meetings online was conducted. Participants were people living with young onset dementia. Participants were recruited through convenience and purposeful sampling. Initial contact was made with the group facilitator to discuss the study purposes and assess eligibility of the group members. The data was analysed thematically by two independent researchers, using an inductive approach.FindingsFour focus groups with UK-based peer support groups were conducted through the group’s usual platform, including 20 participants. Through online peer support people stayed connected during the pandemic. It provided opportunities to meet people from different places and be involved in research projects. People found it a convenient way of connecting with others without having to travel. However, some missed in-person interaction and digital exclusion and challenges to navigate different platforms were identified as barriers. Organisational skills of the facilitator and support with getting into meetings can help overcome these challenges.ConclusionOnline platforms can make peer support more accessible for people with young onset dementia as it overcomes geographical barriers as well as barriers for those who feel uncomfortable attending an in-person group. Researchers and policy makers should explore how to implement and overcome barriers to online peer support, so that peer support is more widely accessible and clearly signposted to people with young onset dementia.