Community-based Group Research Articles

The Comprehensive Resilience-building psychosocial Intervention (CREST) for people with dementia in the community: a feasibility and acceptability study

BackgroundA dementia diagnosis can lead to a decline in cognitive, social, and physical health, but people with dementia can live meaningful lives and participate actively in society with psychosocial support. This single-arm, non-randomised feasibility study explored the feasibility and acceptability of a Comprehensive REsilience-building psychoSocial intervenTion (CREST) for people with dementia, their caregivers, General Practitioners (GPs), and the public.MethodsNine people with dementia and their primary caregivers living in the community (n = 9 dyads) completed the CREST intervention which had three components (cognitive stimulation therapy [CST], physical exercise, and dementia education). Quantitative secondary outcomes were assessed at baseline and following the 15-week intervention; qualitative interviews were conducted during and post-intervention. All study components were assessed against pre-defined criteria, to determine the feasibility of conducting a future definitive trial.ResultsRecruitment of people with dementia and their caregiver was a significant challenge and led to considerable delays to the onset and conduct of the intervention. Only 13% of eligible GP practices agreed to assist in recruitment and achieved a 6% enrolment rate; a community-based recruitment strategy proved more effective, yielding a 29% enrolment rate. However, once recruited, participants maintained high attendance and adherence to the content of each component with average adherence rates of 98% for CST, exercise sessions and caregiver education. Adherence to secondary exercise measures was lower, with home exercise diary completion at 37% and Fitbit wear adherence at 80% during the day and 67% at night. The people with dementia felt their concentration and fitness had improved over the 15-week intervention and particularly enjoyed the social aspects (e.g. group classes, exercising with partners from the community). Caregivers felt they had better knowledge and understanding following their education component and reported that the social aspects (interacting and sharing experiences with each other) were important. Overall, participants reported that the three components of the intervention were feasible and acceptable. In addition, the quantitative measures and health economic tools employed were feasible. However, the secondary elements of the exercise component (recording home exercise diaries and Fitbit use) were not considered feasible. Overall, pre-defined criteria for progression to a definitive intervention were fulfilled in terms of acceptability, retention and fidelity but not recruitment.ConclusionWhile overall, the CREST intervention was feasible and acceptable to participants, significant difficulties with recruitment of people with dementia and their caregiver through GP practices impacted the viability of delivering the intervention. Recruitment through community-based groups proved a more feasible option and further work is needed to overcome barriers to recruiting this cohort before a larger-scale trial can be conducted.Trial registrationISRCTN25294519.

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 Comparative Analysis of Neurocognitive Function in Community- and Hospital-Based Patients With Schizophrenia.

The study compared differences in various neurocognitive characteristics across treatment modalities among schizophrenia patients recruited in one city between July 2020 and June 2023 who were on regular medication. Of the 151 participants, 113 were included in the analysis. Participants were divided into community-based and hospital-based groups, and their demographics and clinical characteristics, including insight, quality of life, positive and negative symptoms, and personal and social functioning, were examined. In addition, several aspects of cognition were assessed using neurocognitive assessments such as the Trail Making Test (TMT), Stroop test, and Wisconsin Card Sorting Test (WCST). After adjusting for age differences between groups, the final analysis included data from 42 participants in the community-based group and 33 participants in the hospital-based group. Hospital-based group participants completed Stroop-W more rapidly, excelled in Rey-Osterrieth Complex Figure Test recall and recognition, and incurred fewer TMT Part B (TMT-B) and Stroop-C errors. Additionally, they outperformed in WCST total, non-persistent errors, and categories completed. Contrastingly, community-based group participants showed superior outcomes in WCST persistent responses and errors, suggesting specific neurocognitive strengths. We found differences in neurocognitive characteristics between the two groups. These differences were consistent across a range of cognitive domains, including attention, visual discrimination, memory, and executive functioning. Further large-scale study is needed to generalize cognitive characteristics across treatment modalities.

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.

“I’m a Monster, but I’m Not a Monster”: Symbolic and Social Identity Work Among Child Sexual Exploitation Material Users

Child sexual exploitation material (CSEM) users elicit strong negative reactions from society and people within their networks. There are symbolic and social boundaries that these individuals have transgressed, and subsequent identity work involves the negotiation of self and self-presentation. This article combines results from two studies to explore negotiation of identity, symbolic and social boundaries, and associated narratives among 103 CSEM users. One study was an anthropological ethnography with 17 months of UK fieldwork in community-based group programs, and the other involved four months of interviews in sexual offense treatment units of a US prison. Participants’ identity work had commonalities: distinguishing between acts vs identities; differentiating crimes from identities; comparing offenses to others viewed as worse; framing childhood experiences as influencing offending; and situating both offending and post-offending identities within larger society. Results are discussed in the context of debates about risk, treatment, prevention, harm, denial/downplay/minimization, and reintegration. Furthermore, we highlight how identity work occurs within potentially competing/contrasting personal, judicial, treatment, media, and societal reactions to and expectations of individuals who have committed sexual offenses. Finally, we demonstrate the methodological and analytical value of cross-disciplinary comparative qualitative research by showing similarities across participants from different countries, settings, timeframes, and interventions.

Business Expansion and Downsizing and Its Factors in Community-Based Group Farms: Empirical Study Based on the Questionnaire in Yamaguchi Prefecture

Business Expansion and Downsizing and Its Factors in Community-Based Group Farms: Empirical Study Based on the Questionnaire in Yamaguchi Prefecture

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.

A parenting program delivered through existing community-based peer groups to improve early child development in Homabay and Busia Counties, Kenya: study protocol for a cluster-randomized controlled trial

BackgroundPoor early childhood development (ECD) is a major global health concern that is associated with various adverse outcomes over the lifecourse. Parenting interventions especially during the earliest years of life can benefit ECD. However, there is limited evidence from Kenya about the effectiveness of parenting interventions for improving ECD outcomes especially across rural disadvantaged communities. This paper describes the study protocol for an impact and implementation evaluation of a community-based group parenting program that aims to improve ECD in rural Kenya.MethodsWe will conduct a cluster-randomized controlled trial to determine the effectiveness of a parenting program for caregivers of young children in Homabay and Busia counties in Western Kenya. Sixty-four village clusters will be randomly assigned to either the parenting intervention arm or the waitlist control arm with stratification by county. In each village, 10 primary caregivers with a child aged 0–24 months will be enrolled. The parenting program will be delivered through existing peer groups within communities whereby caregivers will receive counseling and psychosocial support to enhance their parenting skills and wellbeing to in turn promote ECD. The intervention curriculum comprises 21 sessions targeting various nurturing care messages, including early learning, responsive caregiving, child nutrition, health, protection, and caregiver mental health. Group sessions are facilitated by a trained volunteer biweekly for a total of 11 months. The primary trial outcome is an overall measure of ECD using the Global Scales of Early Development long form version. Secondary outcomes include various caregiver outcomes (e.g., parenting practices, mental health) and other child outcomes (e.g., socioemotional development, dietary diversity). All outcomes will be assessed at baseline and endline. We will also conduct a qualitative implementation evaluation at endline and interview various stakeholders to assess program fidelity, quality, and sustainability.DiscussionThis trial will evaluate the effectiveness of a parenting intervention on ECD and caregiving outcomes and assess program implementation quality as delivered through existing community-based peer groups. This study will provide rigorous evidence that can be used to inform scale-up of this program model that leverages existing community social networks and resources for improving caregivers’ parenting skills and promoting ECD in rural Kenya and other similar settings across LMICs.Trial registrationClinicalTrials.gov #NCT06165315. Registered on December 11, 2023.

Effectiveness of a community-based intervention in changing knowledge of and attitudes towards early marriage in The Gambia.

A study was conducted to assess the effects of a multi-component community-based project intervention on changing knowledge of, and attitudes towards early marriage for girls in The Gambia. The study involved a cross-sectional household survey of 201 male and female parents and 296 adolescent boys and girls aged 10-19. It also included two community-based focus group discussions and six key informant interviews. The study compared the project baseline and midline data in the analysis of the survey data. The findings show a significant increase from a baseline of (44.8%) to (70.7%) at midline among the parents who have the view that the girl needs to come of age (18 years) before going into marriage. At both baseline and midline, there is a fear that girls may break their virginity by indulging in premarital sex if they do not marry early. However, there was a significant decrease from (51.7%) at baseline to (10%) (p-value <0.001) in the proportion of parents who think girls must marry early to avoid premarital sex. The findings show between (2%) and (7%) increase from baseline to midline on the view among adolescent boys and girls that girls have the right to choose who to marry. Findings from the focus group discussions and key informant interviews directly linked the changes in knowledge of attitudes towards early marriage among parents and adolescents to the project intervention.

Finding the beat: A partnership to address the relationship between a music program and health among youth who have experienced trauma.

Expertise on treating trauma and traumatic stress sequelae has been siloed in the mental health professions, although somatic psychotherapies and adjuncts to treatment are gaining attention. Alternative and accessible interventions are needed, especially for youth who have experienced trauma. Lost Voices is a community-based group providing trauma-informed music therapy to youth who have experienced trauma in southern Michigan. The purpose of this program evaluation was to use a community-based participatory research approach to create a thoughtful partnership between an academic partner and a nonprofit organization in order to evaluate the outcomes of a music therapy intervention currently being delivered by professional musicians to youth who have experienced trauma. This program evaluation used semistructured interviews with 19 key stakeholders (e.g., youth participants, facility staff, musicians) from two residential youth programs in southern Michigan. A total of four themes were identified from the interviews, including (a) processing emotion, (b) building trust, (c) self-expression, and (d) future orientation. Subthemes included individual story and coping within the theme processing emotion, a focus on outside role models and peer connection within the theme building trust, the fun aspect of the intervention and confidence as part of the theme self-expression, and future orientation encompassed the motivation that youth participants gained as well as forward thinking. This program evaluation provides data to help build the evidence for alternative mental health treatments that specifically reach those impacted by a lack of access and availability of treatments due to social determinants of health. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

A qualitative exploration of the experiences of individuals with spinal cord injury participating in a community-based online intervention to support posttraumatic growth

Purpose To date, no evidence-based, community-based online group intervention has been designed specifically to enhance posttraumatic growth (PTG), quality of life (QoL), sense of meaning and purpose, and satisfaction with life following a spinal cord injury (SCI). This qualitative study aims to describe participants’ experiences of participating in such a program. Methods Semi-structured interviews were conducted with 17 people with SCI and analysed using a thematic analysis approach. Results Five major themes were identified: longing for connection; empowerment through education and participation; journeying through common experiences; connecting to the program content; and continuing to contemplate PTG and meaning and purpose. The themes represent how participants were drawn to the program because they longed to connect with others in similar situations. Participants engaged in a shared group process of learning and reflection as well as an individual journey in which they connected with different elements of the program. As a result, PTG was seen as a continuous and individual process that evolved out of shared group processes. Conclusions This study highlights the importance of addressing psychological needs alongside physical rehabilitation for individuals with SCI. Shared experiences and strength-based approaches can be valuable tools in promoting positive psychological outcomes.

On the Move in the community: Protocol for a hybrid 1 trial examining effectiveness and fidelity of a community-based group exercise program for older adults

On the Move (OTM), a group exercise program to improve mobility in older adults, is efficacious when delivered by research staff. The next step in the development of OTM as a fully implementable intervention is to conduct an effectiveness study in which the intervention is delivered in community settings by community providers. We describe the methods of a hybrid 1 cluster randomized, single-blind, intervention trial to compare the effectiveness of OTM to a delayed intervention control in 502 community-dwelling older adults across 44 sites. OTM classes are taught by certified instructors in the community twice a week for 12weeks. Control centers receive no intervention for the first 12weeks followed by 12-weeks of OTM classes. Participants are assessed at baseline, 12 and 24weeks. The primary outcome is gait speed. Intervention fidelity, measured by adherence and competence in intervention delivery, is assessed by review of instructor intervention diaries and observation. Organizational, instructor, and participant-level factors which may impact fidelity are assessed using questionnaires, focus groups, and structured interviews. The findings of this trial will 1) establish the effectiveness of OTM on improvements in walking and post-intervention persistence of benefits, 2) assess intervention fidelity and identify the impact of organizational, instructor, and participant level factors on fidelity, and 3) determine the extent to which fidelity moderates the effectiveness of OTM. The information derived from this project will provide valuable insight into the real-world effectiveness of OTM as a health promotion program for improving mobility in older adults.

Substance use as subtext to health narratives: Identifying opportunities for improving care from community member perspectives

ObjectiveTo analyze patient and caregiver narratives addressing experiences related to substance use and substance use disorder (SUD). MethodsThirty audio-narratives from the MyPaTH Story Booth archive addressed substance use between 5/20/2016 and 2/24/21. Two coders established an average Cohen’s kappa statistics of 0.81 over 16 stories. The primary coder coded and summarized additional narratives and conducted content and thematic analyses. The final analytic sample addressed perspectives of individuals with SUD, caregivers for individuals with SUD and individuals who have used opioids to manage pain. ResultsStorytellers’ average age was 51, 55 % were female and 85 % were white. Participants with SUD and caregivers described frustration with the current treatment system, reported limited treatment of SUD in medical settings, and noted relying on community-based groups for ongoing care. Individuals with chronic pain felt stigmatized and resented perceived restrictions on pain treatment due to the opioid epidemic. ConclusionsUnstructured narratives provide insights into the lived experiences of people impacted by SUD. Participants reported struggling with the effects of SUD and failing to find adequate treatment from the medical system. Stories highlight SUD-related stigma. Practice implicationsUnderstanding patient and caregiver perspectives related to SUD can be a critical step towards developing effective interventions.

Social media and inclusive humanitarian intervention: the case of Cyclone Idai in Chimanimani district, Zimbabwe

Purpose The world-over, it is evident that, numbers and frequency of natural disasters have increased tremendously. The effects have given birth to a worldwide, all-inclusive humanitarian response and preparedness. In Zimbabwe, Cyclone Idai has ushered in the exploitation of various social media platforms by humanitarian organisations as a way of reaching out to the wider population on critical issues pertaining to the devastating effects of the cyclone. This study herein, aims to interrogate the efficacy of various social media platforms that were exploited by various humanitarian organisation involved in the Cyclone Idai humanitarian response. The various social media platforms are interrogated to establish their contribution to inclusivity or lack of it in relaying humanitarian interventions. Design/methodology/approach A mixed-method approach was used to conduct the research. Quantitative and qualitative methods were applied to gather the data. Quantitative data was collected using questionnaires with Likert scales and other closed questions provided. These were administered to representatives from the government, United Nations, donors, non-governmental organisations (NGOs), and members of the community. On the contrary, qualitative data was gathered from members of the community and humanitarian organisations through open-ended responses provided from interviews. Quantitative data was collected from a total of 384 stakeholder representatives who were randomly selected from Chimanimani district of Manicaland province. In addition, 12 interview participants were purposively selected to complement the research tools listed above. Findings The study findings show that social media platforms to a greater extent are effective tools for creating inclusive humanitarian response. The study findings reveal that social media has a significant positive influence on inclusive humanitarian response, with a 5% level of significance. These quantitative results agree with results obtained from interviewed participants. Managers of NGOs, community-based groups, government agencies and churches engaged in managing rescue, relief and humanitarian aid are supposed to access the study's findings in the future, and may find the results resourceful. Research limitations/implications This study's generalisability to other districts and countries is constrained because it was conducted in the setting of the Chimanimani district. Future research can therefore be expanded to other Zimbabwean areas as well as to other countries in the Southern African region and beyond. Practical implications Humanitarian supply chain managers engaged in managing rescue, relief and humanitarian aid are proposed as having access to the study's findings in the future as they may find them useful. Originality/value This study contributes to the literature by providing insights that can improve information flow. This can be achieved by including different stakeholders in decision-making through the use of social media during disaster preparedness and response processes and helping them to better prepare for and respond to future disasters.

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.

Sex hormone binding globulin (SHBG) serum levels and insulin resistance in men on chronic hemodialysis

BackgroundIn males with end stage renal disease biochemical hypogonadism is a frequent finding. Testosterone and sex hormone binding globulin (SHBG) have been associated with insulin resistance, a well-known condition in uremia. The aim of the present study was to investigate in males on chronic hemodialysis the relationship of testosterone and SHBG serum levels with insulin resistance.MethodsIn a cross-sectional study we enrolled men treated with chronic hemodialysis who did not suffer from an acute illness or other endocrinopathy, as well as primary hypogonadism, and were not hospitalised. Diabetes mellitus, diabetic nephropathy or previous transplantation were not exclusion criteria. As controls we used a community-based group of healthy males matched for age and Body Mass Index (BMI). We assessed the BMI (kg/m2) from body weight and height, the body fat content (%) by bioelectrical impedance and serum testosterone (ng/ml), SHBG (nmol/L) and estradiol (pg/ml) by standard methods. Testosterone < 3.25 ng/ml defined biochemical hypogonadism. In non-diabetic males, we calculated the homeostasis model assessment index (HOMA-R), an estimate of insulin resistance, from serum fasting insulin and glucose.Results27 men (age 54.4 ± 19 years) on chronic hemodialysis (treatment duration 29.1 ± 14.4 months) and 51 healthy men (age 47.1 ± 9.6 years) were included. In men on hemodialysis vs. healthy men there were increased serum levels of SHBG (40.9 ± 26.9 vs. 27.6 ± 11.9 nmol/L; p = 0.031) and a significantly enhanced frequency of biochemical hypogonadism (22.2 vs. 3.9%; p = 0.011). In cases without diabetes (n = 22) a significant correlation was observed between the HOMA-R (r = -0.586, p = 0.004) and the fasting insulin levels (r = -0.650, p = 0.001) on the one hand and the serum SHBG levels on the other.ConclusionsOur findings confirm enhanced prevalence of biochemical hypogonadism in males on chronic hemodialysis. In non-diabetic cases the serum levels of SHBG correlated with serum insulin and insulin resistance.

Capturing the HIV-related social exclusion practices experienced by key populations through photovoice: an interpretative phenomenological study

BackgroundKey populations are defined as groups that are susceptible to HIV, including Men Sex with Men (MSM), Transgender (TG), Persons who Inject Drug (PID), and Female Sex Worker (FSW). These key populations groups are among the fastest-growing populations in Indonesia. These vulnerable groups are ostracized by society and health services, which makes it difficult to get treatment. This project was carried out to investigate the different experiences and perspectives of these key populations in facing and addressing social and spiritual exclusion.MethodsA qualitative phenomenological study using photovoice was carried out from July to December 2022. Key populations comprising MSM, TG, PID, and FSW were recruited from community-based peer groups in West Bandung Regency using snowball sampling. This was followed by the Photovoice stages, from workshops to focus group discussions and interviews with audio recordings. Furthermore, thematic data analysis was carried out by interpretative participant narratives and photographs supported by Atlas.ti software.ResultEighteen participants comprising four MSM, five TG, four PIDs, and five FSWs participated in this research. Among these eighteen participants, six were HIV-negative, including 3 PIDs and 3 FSWs, while the remaining were positive. The analysis of the collected data identified four main themes: 1) limited access like unequal treatment, disadvantage, and harassment, 2) social and spiritual impact, 3) coping mechanisms, and 4) self-reflection through photovoice. These results showed that social exclusion occurred in an environment where community values, beliefs, and norms dehumanised these key populations, and where removal of support and care was prominent. Despite these challenges, participant resilience was evidenced by using internal resources and peer support as coping mechanisms. The participants considered photovoice as a tool to foster self-confidence and self-awareness through a reflective process.ConclusionsThe findings of this study highlight the emphasis on participants' openness in sharing their experiences, which can build empathy and promote a more inclusive community in HIV prevention efforts. This research findings can be used to inform HIV policy and practice and inclusion of these key populations in the community. We advocate making the photovoice efforts accessible to a wider audience through exhibitions and various media.

Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease

BackgroundPatients living with various rare or orphan diseases (ROD) experience common psychosocial difficulties. Those need emerge from a combination of factors, such as the large variety of patients and the rarity of resources, as well as concentrated efforts on physical health needs that yielded increases in life expectancy and quality in patients. A gap is therefore rising in the consideration of psychosocial needs of patients, such as coping with the impacts of physical limitations, reducing social isolation and distress. To contribute to address this gap, we developed, pilot-tested and evaluated the acceptability, feasibility, implementation, and short-term effects of Connect-ROD, an online group intervention to support adult patients with a ROD (AP-ROD), which aims to improve coping mechanisms, reinforce sense of control, and support personal goals of AP-ROD.A qualitative study comprising of in-depth pretests, post-test interviews and standardized questionnaires, was conducted with 14 participants in two consecutive intervention groups.ResultsThe Connect-ROD intervention is strongly anchored in acceptance and commitment therapy as well as community psychology approaches. A pilot test allowed us to improve on the initial structure and to produce a manualized 10-week program delivered online, made up of 2-h sessions comprising formal activities, exchanges and homework. The evaluation showed satisfactory acceptability and accessibility, compliant delivery by facilitators, and promising short-term effects on personal objectives, sense of control, coping mechanisms, symptom management, acceptance of the emotions associated with the disease, distress, self-efficacy, social support and connectedness. The program did not show short-term effects on overall quality of life.ConclusionIt is recommended that Connect-ROD is evaluated on a larger scale. It seems promising to support various AP-ROD who live with the complex psychosocial consequences of their disease.

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.