Community-based Support Groups Research Articles

Leveraging natural language processing to enhance feedback-informed group therapy: A proof of concept.

Group therapy has evolved as a powerful therapeutic approach, facilitating mutual support, interpersonal learning, and personal growth among members. However, the complexity of studying communication dynamics, emotional expressions, and group interactions between multiple members and often coleaders is a frequent barrier to advancing group therapy research and practice. Fortunately, advances in machine learning technologies, for example, natural language processing (NLP), make it possible to study these complex verbal and behavioral interactions within a small group. Additionally, these technologies may serve to provide leaders and members with important and actionable feedback about group therapy sessions, possibly enhancing the utility of feedback-informed care in group therapy. As such, this study sought to provide a proof of concept for applying NLP technologies to automatically assess alliance ratings from participant utterances in two community-based online support groups for weight stigma. We compared traditional machine learning approaches with advanced transformer-based language models, including variants pretrained on mental health and psychotherapy data. Results indicated that several models detected relationships between participant utterances and alliance, with the best performing model achieving an area under the receiver operating characteristic curve of 0.654. Logistic regression analysis identified specific utterances associated with high and low alliance ratings, providing interpretable insights into group dynamics. While acknowledging limitations such as small sample size and the specific context of weight stigma groups, this study provides insights into the potential of NLP in augmenting feedback-informed group therapy. Implications for real-time process monitoring and future directions for enhancing model performance in diverse group therapy settings are discussed. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

A multilevel modeling analysis of community-based mental health and psychosocial support group intervention for refugee newcomers in the United States.

A growing number of resettlement agencies adopt and implement interventions and programs to promote community-based mental health and psychosocial support (CB-MHPSS) among refugees and asylum seekers in the United States. However, few studies examine how multilevel factors either facilitate or interfere with mental health and other associated outcomes. Adopting a realist evaluation approach, this study examines the effects of multilevel (i.e., community, group and individual) factors on mental health coping and emotional well-being (EW) among asylum seekers and refugee newcomers in CB-MHPSS group interventions. A total of 235 adult refugees and asylum seekers participated in 31 CB-MHPSS intervention groups implemented by 11 HIAS affiliate agencies in 2021. A series of bi-/multivariate and multilevel modeling analyses were conducted to investigate the impacts of individual, group or agency, and community-level factors on competency for coping and EW among intervention participants. Mental health and psychosocial support (MHPSS) interventions grounded to the local community help facilitate individual-level improvement in competencies for mental health care and EW. Multilevel modeling analyses attested to multilevel effects of individual, group, and community settings on MHPSS outcomes, highlighting the impacts of intervention facilitator types and group composition, as well as community's unemployment rates. This study sheds light on the value of community-based, participatory approaches to psychosocial interventions; focusing on the role of refugee community leaders and bicultural staff who deliver MHPSS activities, which was a key feature that enhanced the well-being and coping of refugee newcomers across various settings. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Supplemental Material for A Multilevel Modeling Analysis of Community-Based Mental Health and Psychosocial Support Group Intervention for Refugee Newcomers in the United States

Supplemental Material for A Multilevel Modeling Analysis of Community-Based Mental Health and Psychosocial Support Group Intervention for Refugee Newcomers in the United States

A community-based peer-facilitated psychological and social support model to improve retention in care among Cameroonian adolescents perinatally infected with human immunodeficiency virus: A randomized controlled trial

BackgroundPsychological and social support for adolescents living with HIV remains undocumented and unaddressed in Central Africa. This study aimed at assessing effectiveness of a peer-facilitated community-based support model in improving retention in care among adolescents living with HIV and attending care in Chantal Biya Foundation, Yaounde, Cameroon. Materials and methodsWe conducted an analysis of adolescents aged 10–19 years old, perinatally infected with HIV, on follow-up in the Day Care Unit of a reference hospital in Yaounde, Cameroon, and enrolled in the IAS-CIPHER-2021/1214-ATE-SMAVI, a individually randomized controlled trial. While the control arm only received routine care in the health facility, the intervention arm, in addition, was assigned to an HIV association for sustained support model, including support groups, leisure workshops and home visits. Structured questionnaires, including validated French versions of mental health scales, were quarterly administered to the study participants in both study arms by trained healthcare providers. The main outcome was maintaining retention in care beyond the first 15-month period of the study start. Kaplan-Meier and Cox regression models were fitted to assess association between intervention and outcome. Hazard Ratio (HR) across categories of exposure variables were compared using Wald's test. p-value <0.05 was considered significant. ResultsIn total, 305 adolescents were recruited in the study at a median age of 15.2 years old, including 162 (53.1 %) females and 153 individuals in the intervention arm. Mental health troubles were prevalent: severe depression (26.9 %), high or very high anxiety (28.9 %), and low self-esteem (84.9 %). Noteworthy, all of the baseline characteristics were balanced irrelevant to the study arm. Probability of maintaining good retention in care beyond the first 15-month period of study start remained higher in the intervention arm (82.0 % [95 %CI: 73.7 %-88.4 %]) versus the control arm (71.0 % [95 %CI: 63.2 %-78.1 %]), [cHR (95 %CI): 2.0 (1.1–3.3), p=0.044]. ConclusionsCapacity should be built in terms of implementing community-based peer-facilitated support groups in local organizations providing care to adolescents living with HIV.

Narratives of resilience: Understanding Iranian breast cancer survivors through health belief model and stress-coping theory for enhanced interventions

Breast cancer poses a significant global health challenge, with Iran experiencing particularly high incidence and mortality rates. Understanding the adaptation process of Iranian breast cancer survivors’ post-treatment is crucial. This study explores the health perceptions, barriers, and coping mechanisms of Iranian survivors by integrating Stress-Coping Theory (SCT) and the Health Belief Model (HBM). Semi-structured interviews were conducted with 17 survivors, and a grounded theory approach guided the deductive content analysis of the data. The findings reveal key themes, including perceived susceptibility, benefits, barriers to care, cues to action, self-efficacy, and appraisal of action. Perceived susceptibility highlights diagnostic challenges stemming from practitioner errors and symptom misconceptions. Perceived benefits underscore the importance of early detection and support from healthcare providers and families. Barriers include cultural and financial obstacles, while cues to action reflect the influence of media, family, and personal experiences on healthcare-seeking behavior. The study also examines coping strategies, such as problem-focused and emotion-focused approaches, along with family support and external stressors. To address these barriers and enhance support systems, the study suggests specific strategies for healthcare providers, including targeted training to improve diagnostic accuracy and patient communication. Culturally sensitive awareness campaigns can correct symptom misconceptions, while financial counseling can mitigate economic barriers. Establishing community-based support groups and involving family members in care plans can enhance emotional and psychological support. These strategies aim to overcome the identified barriers and improve support systems for Iranian breast cancer survivors, ultimately fostering better recovery outcomes.

The impact of tobacco use and nicotine addiction on health: A literature review of nursing interventions for smoking cessation

ABSTRACT Tobacco use remains one of the leading preventable causes of morbidity and mortality globally, with nicotine addiction significantly impacting health outcomes. This literature review explores the multifaceted nature of tobacco use and its health implications, emphasizing the role of nursing interventions in smoking cessation. The review highlights various strategies employed by nurses, including assessment, counseling, pharmacotherapy support, and behavioral interventions, which are essential for effective tobacco cessation. By analyzing current evidence-based practices, the study underscores the importance of comprehensive assessments and personalized care plans tailored to individual patient needs. It also addresses the significance of motivational interviewing and the 5 A’s framework in facilitating successful quit attempts. In addition, the review discusses the integration of cognitive-behavioral therapy and stress management techniques as vital components of behavioral interventions. Recommendations for improving tobacco cessation efforts include enhanced training for healthcare professionals, the establishment of community-based support groups, and advocacy for robust tobacco control policies. The findings underscore the critical need for ongoing research into the long-term effectiveness of cessation interventions across diverse populations. This study aims to inform nursing practice and public health policy, ultimately contributing to the reduction of tobacco-related health issues and promoting healthier communities.

Abstract B004: Reaching the Community: Collaborating with Black/African American Metastatic Breast Cancer Patients and Advocates

Abstract Background: In America, Black metastatic breast cancer (MBC) patients are disproportionately underrepresented in clinical research, of which the majority of participants are white - leaving research less representative of Black patients. Interventions: To increase the sustainable participation of Black MBC patients in clinical research, Count Me In (CMI)—a cancer research initiative based at the Broad Institute of MIT and Harvard—partnered with the Tigerlily Foundation (TLF), a patient advocacy organization, to develop an equitable, collaborative approach connecting CMI researchers with Black MBC patients to create culturally relevant educational materials for the Black MBC community. Findings: Participating Black MBC patients developed the following materials: a tri-fold brochure, two types of informational postcards, and a social media digital toolbox. The patients co-developed and approved the materials' content and design elements. Materials were also translated into Spanish. Three iterations were drafted until materials were submitted to CMI’s IRB at Dana-Farber Cancer Institute (DFCI) for approval. The distribution strategy for materials to the larger Black MBC community was designed collaboratively with patients. This included sharing information and resources with their local oncology nurse navigators, placing printed materials in community practices, enclosing materials in folders distributed at initial diagnosis, and further connecting with other community-based breast cancer support groups and organizations. During the pilot distribution period - from August 2023 to February 2024 - CMI sent informational packages with materials to 8 different community contacts across the United States. Participating patients had shared contact information of those in their own social network. By the end of the pilot period, 38 new patients registered in CMI identified as having MBC, with 18% self-identifying as Black/African American and 24% self-identifying as Hispanic/Latino - both of which are overrepresentative when compared to the general population of those who self-identify as Black/African American and Hispanic/Latino. Conclusion: CMI and TLF utilized an equitable approach that included patients at the initial planning of a project to the final production and distribution of the materials. Two recommendations could be provided to researchers and organizations from this successful collaborative partnership and pilot. First, patient advocates desire to be involved in creating and sharing resources with their communities. Organizations can honor their commitment with financial and non-financial opportunities. Second, partnering appropriately with patient advocates will increase clinical study representation. The success of this pilot demonstrates how researchers and patients can collectively close the inequities gap and pave the path forward for more equitable cancer research. Citation Format: Colleen M. Nguyen, Eboney D. Thompson, Juanita Miller, Shanette Caywood, Tiana Russell, Sue Steele, Virginia Leach, Lizzie Wittig, Taisha Hendrickson, Kolbe Phelps, Priyanka Bhakhri. Reaching the Community: Collaborating with Black/African American Metastatic Breast Cancer Patients and Advocates [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B004.

Volunteer listeners as co-producers of knowledge: exploring the lived experience of older people’s social isolation through peer research

ABSTRACT Social isolation and loneliness are reported as having significant impacts on health, especially for older people. Policy concern has led to the creation of interventions to try and tackle these issues, including the funding of community-based support groups. The National Lottery Ageing Better Fund, 2015–2022 supported voluntary and community sector projects across England, to work with people aged 50 and over to reduce social isolatioand loneliness, through the delivery of area-based activities. One organisation, adopted and implemented a peer research model named Volunteer Listeners, designed and executed by older people as part of their approach to their local evaluation of National Lottery funded projects. This paper documents the peer research model used, its challenges, and its successes, to add to the evidence base about the reality of using participatory approaches, specifically with and for older people researching a health and social care related topic. There are very few published studies discussing how and why older people become involved in evaluation work as peer researchers.

Strategic and operational issues in sustaining community-based dementia support groups: the Get Real with Meeting Centres realist evaluation part 2

Objectives Support for people with dementia in their communities is neither robust nor consistent in the UK, often bolstered by third sector/grass-roots initiatives facing formidable challenges in sustaining long-term. The Get Real with Meeting Centres project explored factors involved in sustaining one such form of community-based support. This is the second of two linked articles outlining learning from this realist evaluation of Meeting Centres (MCs) for people with dementia and carers, which focusses on findings regarding their operational and strategic running. Method Semi-structured interviews and focus group discussions were conducted with 77 participants across three MC sites in England and Wales, including people living with dementia, informal carers, staff, volunteers, trustees, and supporting professionals/practitioners. Data were themed, then analysed using soft systems methodology and realist logic of analysis. Results Forty-two ‘context-mechanism-outcome’ statements were generated, explaining how background circumstances might trigger responses/processes to produce wanted or unwanted outcomes regarding three key areas for MC sustainability: External relationships and collaboration; Internal relationships and practices; and Finances and funding. Conclusion Collaboration is essential to sustaining community-based initiatives such as MCs, particularly between local community and regional level. MCs need to be vigilant in mitigating pressures that create ‘mission drift’, as targeting a gap in the care pathway and maintaining a person-centred ethos are central to MCs’ appeal. Stable, ongoing funding is needed for stable, ongoing community dementia support. More formal recognition of the value of social model community-based initiatives, helped by improved data collection, would encourage more robust and consistent community dementia support.

Reaching people and managing membership in community-based dementia support groups: the Get Real with Meeting Centres realist evaluation part 1

Objectives There is a need to improve the provision and reach of community services for people living with dementia, a goal in which community-based support groups can play a key role. The Get Real with Meeting Centres project aimed to explore factors involved in the success and sustainability of Meeting Centres (MCs) a form of community-based support proliferating in the UK. This is the first of two linked articles outlining learning from this realist evaluation of MCs, which focusses on findings around reach and membership. Method Semi-structured interviews and focus group discussions were conducted with 77 participants across three case study MC sites in England and Wales, including people living with dementia, informal carers, staff, volunteers, trustees, and supporting professionals/practitioners. Data were themed, then analysed using both soft systems methodology and realist logic of analysis. Results Fifty-two ‘context-mechanism-outcome’ statements were generated, explaining how background circumstances might trigger responses/processes to produce wanted or unwanted outcomes regarding four key areas for MC sustainability: Referrals and the dementia care pathway; Reaching people and membership; Carer engagement and benefit; and Venue and location. Conclusion Strong links with formal services and a well-functioning dementia care pathway are essential to sustaining community-based group support such as MCs; group support is also well-placed to assist work to improve pathway issues. Clarity of offer (including benefit to carers), and a wide range of activities, are key to appeal and reach; transport to, and use of, venue are challenges, as are pressures to support people with more advanced dementia.

Determinants of Exclusive Breastfeeding Among Mothers of Infants Less Than Six Months of Age in Mogadishu: A Facility-Based Cross-Sectional Study

Background Breastfeeding is a vital practice for infant health and well-being, with exclusive breastfeeding (EBF) during the first six months being particularly crucial. Despite its benefits, EBF is sub-optimally practiced in many low-to-middle income countries. This study focuses on Somalia, a country with historical political instability and poor health indicators, aiming to identify the prevalence and determinants of exclusive breastfeeding among women with infants under six months attending SOS Mother and Child Hospital in Mogadishu. Methods A hospital-based cross-sectional design was used, and data were collected through a structured questionnaire. The study sample consisted of 345 mothers, selected using a systematic sampling technique. Descriptive, bivariate, and multivariate analyses were conducted to assess breastfeeding practices and determine factors influencing exclusive breastfeeding prevalence. Result The study found that the prevalence of exclusive breastfeeding among the study population in Somalia was 44%, influenced by factors such as maternal education, employment, and utilization of antenatal and postnatal care services. Male infants and younger infants had higher odds of being exclusively breastfed. Conclusion and recommendations The study emphasizes the importance of promoting exclusive breastfeeding as the optimal feeding practice for infants in Somalia, highlighting the need for comprehensive health education during antenatal care visits and postnatal counseling. It recommends the development of supportive policies, such as maternity leave and workplace accommodations, along with community-based initiatives and support groups to facilitate and encourage exclusive breastfeeding practices.

Barriers and Facilitators to Implementing a Community-Based Psychosocial Support Intervention Conducted In-Person and Remotely: A Qualitative Study in Quibdó, Colombia.

Community-based psychosocial support group (CB-PSS) interventions using task-shifting approaches are well suited to provide culturally appropriate services in low- and middle-income countries. However, contextual barriers and facilitators must be considered to tailor interventions effectively, particularly considering the challenges introduced by the COVID-19 pandemic. We explore the barriers, facilitators, and psychosocial changes associated with implementing a CB-PSS group intervention delivered by local lay providers to conflict-affected adults in Quibdó, Colombia, using both in-person and remote modalities. Data were analyzed from 25 individual interviews with participants and a focus group discussion involving staff members, including 7 community psychosocial agent facilitators and 2 mental health professional supervisors. The analysis used a thematic approach grounded in a descriptive phenomenology to explore the lived experiences of participants and staff members during implementation. Participant attendance in the in-person modality was compromised by factors such as competing work and family responsibilities and disruption caused by the COVID-19 pandemic. Participants in the remote modality faced challenges concerning unstable Internet connectivity, recurrent power outages caused by heavy rain, distractions, interruptions, and threats to confidentiality by family and coworkers. Despite these challenges, data revealed key contextual facilitators, including the community-based knowledge of facilitators and integration of traditional practices, such as the comadreo (informal talks and gatherings). Respondents shared that the CB-PSS groups promoted stronger community relationships and created opportunities for participants to exchange peer support, practice leadership skills, develop problem-solving skills based on peers' experiences, and enhance emotional regulation skills. Differences and similarities across in-person and remote modalities are discussed, as are key considerations for practitioners and policymakers.

Changing maternal and child nutrition practices through integrating social and behavior change interventions in community-based self-help and support groups: literature review from Bangladesh, India, and Vietnam.

Self-help groups (SHGs) and Support Groups (SGs) are increasingly recognized as effective mechanisms for improving maternal and young child nutrition due to their decentralized, community-based structures. While numerous studies have evaluated the outcomes and impact of SHGs and SGs on nutrition practices, there remains a gap in the literature. To address this, we conducted a literature review to examine the role of SHGs and SGs in improving health and nutrition outcomes, focusing on marginalized women, especially pregnant and lactating women (PLW), in India, Bangladesh, and Vietnam, with an emphasis on programs supported by the international non-governmental initiative, Alive & Thrive. We conducted a literature review to assess various models, summarizing findings from 34 documents, including research studies, evaluation reports, program materials, strategies, annual reports, work plans, and toolkits. Relevant information from these documents was extracted using predetermined forms. In India, the models used SHGs with 10-20 women, federated into larger village and district organizations. Bangladesh and Vietnam SGs have similar structures but with local leaders and committees playing key roles. In all three countries, interventions aimed to improve health and nutrition practices through social behavior change (SBC) interventions, including peer-to-peer learning, interpersonal communication, home visits, and community meetings. Outcomes of the interventions showed that SHG members had increased knowledge of breastfeeding, complementary feeding, and improved dietary diversity compared to non-SHG participants. Interventions helped improve infant and young child feeding practices. Common challenges included sustaining the SHGs, ensuring adequate participation, socio-cultural barriers, and logistical difficulties in reaching PLW in remote areas. Limited time for health topics during SHG meetings and the dissolution of older SHGs were also significant issues. SHG and SG models demonstrate success in improving health and nutrition outcomes but face challenges in scale, sustainability, and participation. Integrating nutrition-focused SBC interventions into SHGs and SGs requires significant capacity building for technical and counseling skills. Ensuring comprehensive coverage and robust quality assessment during community-based rollouts is essential. To sustain these interventions, it is crucial to prevent group dissolution, allow time for maturation, and secure strong stakeholder engagement and political support.

A square peg in a round hole: treating hepatitis C.

Several barriers along the cascade of care reduce hepatitis C treatment access. We propose an investment in patient-centered care strategies to initiate and engage this vulnerable population with curative treatment, such as the implementation of community-based educational peer support groups. Barriers to implementing these patient-centered care strategies remain.

Implementation Evaluation of Community-Based Mental Health and Psychosocial Support Intervention for Refugee Newcomers in the United States

Refugee newcomers resettled in the United States face numerous challenges impacting their mental health and overall well-being. Despite extensive research on clinical interventions, multimodal interventions with peer-based group models in resettlement contexts remain scarce. Adopting a realist evaluation approach, this study aims to conduct a comprehensive implementation evaluation of a complex community-based mental health and psychosocial support (CB-MHPSS) group intervention, examining its mechanisms and processes while considering the interplay among context, implementing agents, and community settings. Qualitative and quantitative data on the implementation process were collected from 11 refugee agencies, involving trained resettlement staffers (n = 32) and refugee community facilitators (n = 31) who implemented the 31 CB-MHPSS psychosocial groups in 2021. The analysis included fidelity reports, process reflections, and follow-up survey responses, utilizing a structured template based on the CB-MHPSS Theory of Change (ToC) and Medical Research Council (MRC) guidance. Results of an in-depth exploration of complex relations between context and implementation processes reveal the vital role that adaptability to socio-ecological circumstances during the global coronavirus pandemic played in achieving successful implementation of psychosocial group interventions. Striking a balance between fidelity and refinement of intervention of the intervention curriculum emerged as crucial factors for aligning facilitation goals with newcomer needs. This approach maintained the integrity and appropriateness of the intervention, requiring implementers to utilize local knowledge of community resources and their understanding of lived experience of forced migrants and their within the community. Furthermore, exploring intervention barriers and facilitators revealed merits aligned with program change theories and areas for adjustment, while cataloged guidelines addressed community needs, showcasing competence beyond standard checkboxes. Strategic dissemination guidance provided by the central office in a supportive and nonintrusive manner facilitated uptake in a participatory and context-specific manner. This study emphasizes the importance of leveraging community partnerships and local knowledge to result in sustained improvements in the mental health and well-being of refugees.

Piloting a community-based psychosocial group intervention designed to reduce distress among conflict-affected adults in Colombia: a mixed-method study of remote, hybrid, and in-person modalities during the COVID-19 pandemic

BackgroundCommunity members in Quibdó (Choco, Colombia) are highly vulnerable to psychosocial problems associated with the internal armed conflict, poverty, and insufficient public services, and exacerbated by the COVID-19 pandemic. A pilot study was conducted with conflict-affected adults in Quibdó to assess feasibility and outcomes of a community-based psychosocial support group intervention using three different intervention modalities: in-person, remote (conducted online), and hybrid (half of sessions in-person, half-remote). This group model integrated problem-solving and culturally based expressive activities and was facilitated by local community members with supervision by mental health professionals.MethodsThis study utilized a mixed-explanatory sequential design (a quantitative phase deriving in a qualitative phase) with 39 participants and 8 staff members. Participants completed quantitative interviews before and after an eight-week group intervention. A subset of 17 participants also completed in-depth qualitative interviews and a focus group discussion was conducted with staff at post-intervention.ResultsFrom pre- to post-intervention, participants in all modalities demonstrated improved wellbeing and reduced symptoms of generalized distress, anxiety, depression, and posttraumatic stress. Use of coping skills varied across modalities, with remote groups associated with a decrease in some forms of coping, including use of social support. In qualitative interviews and the focus group discussion, participants and staff described logistical challenges and successes, as well as facilitators of change such as problem resolution, emotional regulation and social support with variations across modalities, such that remote groups provided fewer opportunities for social support and cohesion.ConclusionsResults offer preliminary evidence that this model can address psychosocial difficulties across the three modalities, while also identifying potential risks and challenges, therefore providing useful guidance for service delivery in conflict-affected settings during the COVID-19 pandemic and other challenging contexts. Implications of this study for subsequent implementation of a Randomized Control Trial (RCT) are discussed.

The feasibility of establishing parent support groups for children with congenital Zika syndrome and their families: a mixed-methods study.

Background: The 2015 - 2016 Zika epidemic highlighted gaps in health and social care services for parents of children with developmental disabilities. In response, we developed the 'Juntos' intervention, a 10 week community-based early intervention support group for parents of children with congenital Zika syndrome (CZS). The intervention's components include participatory learning sessions, practical skill acquisition, peer support, and psychological support, aiming to improve caregiver's knowledge and confidence in caring for their children. This study aimed to evaluate the feasibility of implementing 'Juntos' in Colombia. Methods: Two facilitators delivered 'Juntos' to four groups of 8-10 caregivers between 2017 and 2018. One researcher observed each group. Data were collected from: observation notes from 40 sessions, focus group discussions held after each session, pre- post intervention questionnaires with 34 caregivers, and semi-structured interviews conducted with four facilitators, 12 caregivers and three stakeholders. We used the Bowen framework in data analysis. Results:The feasibility evaluation revealed that 'Juntos' was highly acceptable and in demand among the target population. The intervention was predominantly delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Additional organisational and social media support was required for successful implementation. Community health worker training may support integration and the established groups could facilitate programme expansion. However, participants perceived lack of prioritisation as a limitation within existing health systems. Participants' knowledge and confidence to care for their child improved after programme enrolment. Conclusion:The 'Juntos' intervention demonstrated high acceptability, demand, and practicality in supporting parents of children with CZS in Colombia. However, its implementation faces challenges due to existing gaps in health system support for children with CZS.

The feasibility of establishing parent support groups for children with congenital Zika syndrome and their families: a mixed-methods study

Background: The 2015 – 2016 Zika epidemic highlighted gaps in health and social care services for parents of children with developmental disabilities. In response, we developed the ‘Juntos’ intervention, a 10 week community-based early intervention support group for parents of children with congenital Zika syndrome (CZS). The intervention's components include participatory learning sessions, practical skill acquisition, peer support, and psychological support, aiming to improve caregiver’s knowledge and confidence in caring for their children. This study aimed to evaluate the feasibility of implementing ‘Juntos’ in Colombia. Methods: Two facilitators delivered ‘Juntos’ to four groups of 8-10 caregivers between 2017 and 2018. One researcher observed each group. Data were collected from: observation notes from 40 sessions, focus group discussions held after each session, pre- post intervention questionnaires with 34 caregivers, and semi-structured interviews conducted with four facilitators, 12 caregivers and three stakeholders. We used the Bowen framework in data analysis. Results: The feasibility evaluation revealed that 'Juntos' was highly acceptable and in demand among the target population. The intervention was predominantly delivered with fidelity. Practicality was facilitated by providing transport costs and selecting convenient locations. Additional organisational and social media support was required for successful implementation. Community health worker training may support integration and the established groups could facilitate programme expansion. However, participants perceived lack of prioritisation as a limitation within existing health systems. Participants’ knowledge and confidence to care for their child improved after programme enrolment. Conclusion: The 'Juntos' intervention demonstrated high acceptability, demand, and practicality in supporting parents of children with CZS in Colombia. However, its implementation faces challenges due to existing gaps in health system support for children with CZS.

"He told me my pain was in my head": mitigating testimonial injustice through peer support.

Women with disabilities are exposed to sexism and ableism, earn less income, and work in exceptionally challenging conditions compared to women without disabilities and men with or without disabilities. Adolescent girls living with scoliosis may begin experiencing this compounding bias during their encounters with healthcare from the moment they start noticing differences in their bodies. Being significantly more likely than boys to progress to a curve angle where painful treatment such as bracing or spinal fusion surgery is required, adolescent girls living with scoliosis are therefore more likely to experience chronic pain. The long-term impact of pain and pain-related stigma includes lower educational attainments, decreased vocational functionality, and social impairments in adults after having experienced chronic pain in adolescence. In this article, the authors will explore the effects and mechanisms of gender-specific peer support in disrupting this trajectory to adverse outcomes. Through individual interviews consisting of open-ended questions, the researchers gathered narrative data from Curvy Girls members, a community-based peer support group for girls and young women living with scoliosis. The data was analyzed using an applied philosophical hermeneutics approach, with intersectionality and testimonial injustice as their framework. They found that the study participants had their pain narratives reinterpreted by the adults in their lives, including their parents and healthcare practitioners, leading them to question and doubt their own experiences. These negative outcomes were mitigated through the peer support they received and offered from Curvy Girls. Participants reported having gained confidence and a sense of belonging after they joined this group, allowing them to better cope with their condition more effectively in different facets of their lives.

A holistic approach to well-being and neglected tropical diseases: evaluating the impact of community-led support groups in Nigeria using community-based participatory research.

Neglected tropical diseases (NTDs) affect around 1 billion people, many living in the poorest parts of the world. NTDs often lead to serious long-term physical impairments. Stigma, disability, poverty and social isolation interact, resulting in poor quality of life and significant psychosocial impacts. The holistic health and psychosocial needs of persons affected by NTDs are often overlooked in integrated NTD programme design and research. Furthermore, the viewpoints of persons affected are often absent and spaces for empowerment and advocacy are limited. Using a community-based participatory research design, our study partnered with persons affected and caregivers as co-researchers to address this gap. Through the process, we co-designed and implemented community-based support groups in Kaduna and Kwara, Nigeria, where NTDs are endemic. This paper utilises photovoice with support group facilitators (persons affected); participant observation of group meetings; rapid micronarratives with support group members; and key informant interviews with programme implementers at the state and local government area levels to explore the impact of the support groups from the perspective of people affected by NTDs and other health system actors. Perceived impacts of the support groups included a sense of ownership and empowerment, stigma reduction, improved self-esteem, improved health knowledge and health outcomes and capacity strengthening through vocational training. Support groups, as community spaces of healing, offer a low-cost holistic intervention for chronic disease and disability.