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Journal of Burn Care & Research :... Sep 2022Disparities in psychosocial outcomes after burn injury exist in patients from racial or ethnic minority groups in the United States. Peer support groups can help...
Disparities in psychosocial outcomes after burn injury exist in patients from racial or ethnic minority groups in the United States. Peer support groups can help patients with many psychosocial aspects of recovery from burns; however, access to such support among patients of racial and ethnic minority or low socioeconomic groups are unknown. The present study examined participation rates in outpatient peer support within this patient population. Patients attending outpatient clinic at an urban safety-net hospital and regional burn center with a majority minority patient population were asked about participation in burn survivor group, interest in joining a group, and given validated survey questions about managing emotions and social interactions since injury. Current or past participation in peer support was low (4.2%), and 30.3% of patients not already in support group were interested in joining. Interest in future participation in peer support was highest among Hispanic patients (37.0%) and lowest among Black patients (0%). Logistic regression models demonstrated that increased total body surface area burned, hospital length of stay, and need for surgical intervention were associated with interest in joining or having joined a peer support group. Effectiveness of management of emotions and social interactions were not associated with interest in joining peer support in the future. These findings demonstrate a considerable difference between levels of interest and participation in peer support within this population. Improving access to and education about benefits of peer support in underresourced communities may help to address the variation in psychosocial outcomes of patients across racial or ethnic minority groups recovering from burns.
Topics: Burns; Ethnicity; Hispanic or Latino; Humans; Minority Groups; Self-Help Groups; United States
PubMed: 35781574
DOI: 10.1093/jbcr/irac086 -
Clinical Rheumatology Jun 2020Peer support is important for psychosocial well-being in patients with rheumatoid arthritis (RA). Our objective was to assess the interactions, engagement, and... (Randomized Controlled Trial)
Randomized Controlled Trial
OBJECTIVE
Peer support is important for psychosocial well-being in patients with rheumatoid arthritis (RA). Our objective was to assess the interactions, engagement, and perceptions of participants in an online support group for patients with RA.
METHODS
Participants were 18 years or older, diagnosed with RA within 10 years, and residing in the USA or Canada. All participated in a closed Facebook online support group. Membership was by invitation only, and discussions were visible only to members, moderators, and two research staff. Each week, participants discussed a topic posted by a moderator. They also shared other disease-relevant information beside the topics posted. We assessed participants' engagement and qualitatively analyzed the content of their postings in the first 5 weeks of participation.
RESULTS
The group had 90 participants: 94% were female and 83% white. Median age was 54 (24-84) years. Mean number of contributors per week was 50 (range, 42-62); 10% of participants never contributed to the discussions. Participation in discussions declined over time. Over three-quarters of participant posting were about information sharing. Participants shared information on disease experiences, medications, social lives (including pictures of themselves, families, and pets), online resources on RA, frustrations, messages of encouragement, and satirical depictions of their disease experience. Many expressed gratitude for the social support provided.
CONCLUSION
Participants were generally enthusiastic and shared disease-related information and personal experiences. Social media groups may provide alternative means of providing education and peer support often lacking in traditional models of care.Key Points• The study examines how patients with rheumatoid arthritis engage in an online support group and the nature of their interactions.• This study reveals that social media platforms could provide viable options or complements to the traditional face-to-face small group patient support system.• It may be necessary to pay special attention to how to ensure a sustained participant interest in online social support group among patients with rheumatoid arthritis.
Topics: Adaptation, Psychological; Adult; Aged; Aged, 80 and over; Arthritis, Rheumatoid; Disease Management; Female; Health Education; Humans; Male; Middle Aged; Perception; Self-Help Groups; Social Media; Social Support; Young Adult
PubMed: 32006180
DOI: 10.1007/s10067-020-04967-y -
International Journal of Environmental... Mar 2022Suicide bereavement support groups are a widely available format of postvention service. Although other reviews have addressed peer-led bereavement interventions, no... (Review)
Review
Suicide bereavement support groups are a widely available format of postvention service. Although other reviews have addressed peer-led bereavement interventions, no review has focused specifically on peer-led support for people bereaved by suicide. Informed by a framework for undertaking scoping reviews, we conducted a systematic review according to PRISMA-ScR guidelines. Searches conducted in May 2021 of peer-reviewed literature in MEDLINE (EBSCO), CINAHL Complete (EBSCO), PsycINFO (EBSCO), EMBASE (Elsevier), AMED (EBSCO), ERIC (EBSCO), Web of Science (Core Collection), ASSIA (Proquest), and Global Index Medicus. The search was not limited by language, and all studies were included to full text screening. The search identified 10 studies conducted between 1994 and 2020 in five countries. The selected papers were subjected to quality assessment. The interventions included face-to-face groups, telephone and online groups/forums and were evaluated using a variety of methodologies, which made comparison and synthesis challenging. Thematic analysis resulted in four themes: motivation, impact, aspects of intervention which hindered/enhanced outcomes, and recommendations for the practice of peer support made by the authors. While there were methodological limitations to most studies included in this review; the studies do indicate the potential benefit of peer-led support to those bereaved through suicide. Future studies should provide a definition of 'peer' and a clear description of the intervention being evaluated. As the field matures there is a need for more rigorous evaluation of peer interventions with representative samples, studies that compare the impact of various types of peer interventions, and studies of the peer group processes.
Topics: Bereavement; Grief; Humans; Self-Help Groups; Suicide
PubMed: 35329171
DOI: 10.3390/ijerph19063485 -
Journal of Psychiatric Research Jan 2021This study sought to examine the trends in Internet support group (ISG) participation among U.S. adults and to investigate the sociodemographic and behavioral health...
PURPOSE
This study sought to examine the trends in Internet support group (ISG) participation among U.S. adults and to investigate the sociodemographic and behavioral health profiles of ISG participants.
METHODS
Data was derived from the National Survey on Drug Use and Health (2004-2018, n = 625,883). Logistic regression was used to examine significance of trend year and correlates of ISG participation. Latent class analysis was conducted to identify subtypes of ISG participants.
RESULTS
The proportion of U.S. adults participating in ISG increased significantly from 2.29% (2004-2007) to 3.55% (2016-2018). ISG participants were less likely to be male, 35 or older, be part of an ethnic/racial minority group, or have household incomes between $20,000 and $49,999. Black/African American participants and those classified as "other" race showed the largest percent increases, while Hispanics showed no change. ISG participants were more likely to have experienced a depressive episode and to have used cannabis. Three subtypes of ISG participants were identified, including the Lower Behavioral Health Risk group (62%), the Elevated Behavioral Health Risk group (24%), and the Depression, Cigarettes, and Cannabis group (14%).
CONCLUSION
Overall, we found an increasing trend in seeking mental health care through ISG among US adults since the early 2000s. While disparities among some disadvantaged groups such as Blacks/African Americans and individuals with lower household income were diminishing, continuing efforts to engage men, older adults, and Hispanics in ISG are needed. This investigation also identified distinct subtypes of ISG participants and provides important implications for future research on ISG.
Topics: Aged; Ethnicity; Hispanic or Latino; Humans; Internet; Male; Mental Health; Self-Help Groups; United States
PubMed: 33091688
DOI: 10.1016/j.jpsychires.2020.10.012 -
Experimental and Clinical... Jun 2016Liver transplant recipients must adapt to a new life after transplant. We report the effects of a support group on physical and psychosocial adaptation of liver...
OBJECTIVES
Liver transplant recipients must adapt to a new life after transplant. We report the effects of a support group on physical and psychosocial adaptation of liver transplant recipients.
MATERIALS AND METHODS
The study used a quasi-experimental design, comparing an intervention group and a control group. Data were collected between January 2011 and May 2012 with 73 liver transplant recipients. A patient identification form, Modified Transplant Symptom Occurrence and Symptom Distress Scale - 58, and SF-36 were used for data collection. The intervention group attended support group meetings, while the control group received a routine follow-up. Data were analyzed with t test and The Repeated Measures ANOVA with 1 between-group factor.
RESULTS
The results indicated that the support group intervention increases physical, psychological, and social adaptation of liver transplant recipients. Specifically, this effect of the support group was accrued after support group intervention and decreased 3 months after intervention.
CONCLUSIONS
A support group intervention can have a positive effect on liver transplant recipients' physical, psychological, and social adaptations.
Topics: Adaptation, Physiological; Adaptation, Psychological; Adult; Analysis of Variance; Female; Humans; Liver Transplantation; Male; Middle Aged; Peer Group; Psychiatric Status Rating Scales; Self-Help Groups; Social Behavior; Statistics, Nonparametric; Surveys and Questionnaires; Time Factors; Transplant Recipients; Treatment Outcome; Turkey
PubMed: 25890597
DOI: 10.6002/ect.2014.0220 -
Orphanet Journal of Rare Diseases Oct 2022More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease... (Randomized Controlled Trial)
Randomized Controlled Trial
Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial.
BACKGROUND
More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively by researchers, peer support group leaders, and patient organization leaders, compared to waitlist control, on peer leader self-efficacy among scleroderma support group leaders.
METHODS
The trial was a pragmatic, two-arm partially nested randomised controlled trial with 1:1 allocation into intervention or waitlist control. Eligible participants were existing or candidate peer support group leaders affiliated with a scleroderma patient organization. Leader training was delivered in groups of 5-6 participants weekly for 13 weeks in 60-90 min sessions via the GoToMeeting® videoconferencing platform. The program included 12 general leader training modules and one module specific to scleroderma. Primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were leader self-efficacy 3 months post-intervention; emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention; and program satisfaction among intervention participants post-intervention.
RESULTS
One hundred forty-eight participants were randomised to intervention (N = 74) or waitlist (N = 74). Primary outcome data were provided by 146 (99%) participants. Mean number of sessions attended was 11.4 (standard deviation = 2.6). Mean program satisfaction score (CSQ-8) was 30.3 (standard deviation = 3.0; possible range 8-32). Compared to waitlist control, leader self-efficacy was higher post-intervention [SGLSS; 16.7 points, 95% CI 11.0-22.3; standardized mean difference (SMD) 0.84] and 3 months later (15.6 points, 95% CI 10.2-21.0; SMD 0.73); leader volunteer satisfaction was significantly higher at both assessments, emotional distress was lower post-intervention but not 3 months later, and leader burnout was not significantly different at either assessment.
CONCLUSIONS
Peer support group leader education improved leader self-efficacy substantially. The program could be easily adapted for support group leaders in other rare diseases.
TRIAL REGISTRATION
NCT03965780 ; registered on May 29, 2019.
Topics: Humans; Self Efficacy; Rare Diseases; Self-Help Groups; Peer Group; Health Personnel; Scleroderma, Localized; Quality of Life
PubMed: 36307891
DOI: 10.1186/s13023-022-02552-x -
International Journal of Environmental... Aug 2022Research has shown that people bereaved by suicide have an increased risk of mental health problems, suicidality and associated stigma, as well as higher rates of sick...
Research has shown that people bereaved by suicide have an increased risk of mental health problems, suicidality and associated stigma, as well as higher rates of sick leave and increased rates of receiving disability pensions. Peer-led suicide bereavement support groups are perceived to enhance people's recovery by enabling shared experiences with others who are bereaved in similar circumstances. The aim of the research was to explore the viewpoints of participants living in Denmark and the Republic of Ireland on these peer-led support groups. This study focused on how the participants experienced being part of the peer-led support and how the participation affected them. We conducted four focus groups, two in Denmark and two in the Republic of Ireland, and two individual interviews, involving a total of 27 people bereaved by suicide. Data were analyzed thematically. The participants' experiences in the peer-led support groups were in contrast to what they had experienced in their daily lives. They felt alienated in daily living, as they believed that people could not comprehend their situation, which in turn led participants to search for people with similar experiences and join the peer-led support groups. While peer-led support groups may not be helpful for everyone, they created 'supportive spaces' that potentially affected the participants' recovery processes, from which we generated three key themes: (i) 'A transformative space', describing how the peer-led support group created a place to embrace change, learning and knowledge about suicide and suicide bereavement and the making of new connections; (ii) 'An alternative space for belonging and grieving', describing how the participants felt allowed to and could give themselves permission to grieve; and (iii) 'A conflicted space' describing how it was troublesome to belong to and participate in the peer-led support groups. In conclusion, despite the two cultural settings and different organizational approaches, the experiences were comparable. Peer-led support groups can, despite being a conflicted space for some, provide supportive spaces aiding the participants' recovery process.
Topics: Bereavement; Denmark; Focus Groups; Humans; Ireland; Qualitative Research; Self-Help Groups; Suicide
PubMed: 36011534
DOI: 10.3390/ijerph19169898 -
Supportive Care in Cancer : Official... Jul 2015Latino cancer survivors experience lower psychosocial well-being compared to non-Latino Whites. This study describes the development of a culturally appropriate support...
PURPOSE
Latino cancer survivors experience lower psychosocial well-being compared to non-Latino Whites. This study describes the development of a culturally appropriate support group and reports on feasibility of implementation and preliminary outcomes.
METHODS
Promotores (lay health workers) conducted all aspects of data collection and program implementation. Participants were 29 Spanish-speaking Latino cancer survivors (n = 12 men, 17 women) who took part in one of three study phases. Phase 1 included one-on-one interviews and focus groups (n = 14) to investigate psychosocial needs of survivors. During phase 2, a 10-week program was developed that integrated data from phase 1 and culturally relevant concepts. Session topics included stress, nutrition, physical activity, body image, sexuality, medical advocacy, and social support. In phase 3, the program was implemented within gender-specific groups (n = 15). Within-group pre-post comparisons of distress (distress thermometer, salivary cortisol) and quality of life (FACIT) were conducted. Follow-up focus groups assessed participant experience
RESULTS
Phase 1 activities identified survivor needs and interests (e.g., isolation, family and spirituality, supporting other Latinos with cancer). Evidence of program feasibility was demonstrated (e.g., 90-100% attendance, 100% data completion). While interpretation of significance is limited due to sample size, improvements in quality of life [functional (p = 0.05), social (p = 0.02), and meaning/purpose (p = 0.05)] were observed among women but not men. Qualitative follow-up revealed high satisfaction with group participation, but discomfort with the topic of sexuality in women.
CONCLUSIONS
This project demonstrates development and feasibility outcomes for providing culturally appropriate psychosocial support to Latino cancer survivors. Limitations, including lack of control group, and future directions are discussed.
Topics: Female; Health Services; Hispanic or Latino; Humans; Language; Male; Middle Aged; Neoplasms; Quality of Life; Self-Help Groups; Sexual Behavior; Social Support; Survivors
PubMed: 25556609
DOI: 10.1007/s00520-014-2549-9 -
BMC Health Services Research Jul 2021A subset of patients experience psychological distress following insertion of an implantable cardioverter-defibrillator (ICD) and ICD support groups are recommended,...
Delivering an efficient and effective support group for patients with implantable cardioverter-defibrillators (ICDs): patient perspectives of key concerns and predictors of inclination to attend.
BACKGROUND
A subset of patients experience psychological distress following insertion of an implantable cardioverter-defibrillator (ICD) and ICD support groups are recommended, however access to these groups is limited. This study aimed: to gauge a better understanding of patients' key ICD-related concerns; to determine patient interest in a support group and topics deemed helpful to address in a support group; and to examine factors which affect patient inclination to attend.
METHODS
One hundred and thirty nine patients completed the ICD Patient Concerns Questionnaire - Brief (ICDC-B) and a semi-structured survey. Non-parametric tests were used to examine associations and differences in the quantitative data. Qualitative data were analysed using thematic analysis.
RESULTS
42% of respondents said they would attend a support group and inclination to attend was associated with higher ICD concerns and a shorter time since implant. Topics considered important to address in a group were information about heart conditions and devices, the impact of an ICD on daily life and coping with fear of shocks.
CONCLUSION
We concluded that there is interest in further support amongst many patients and that ICD support groups may be delivered efficiently by targeting patients who have higher levels of ICD concerns and within the first few years after implant.
Topics: Adaptation, Psychological; Defibrillators, Implantable; Humans; Psychological Distress; Self-Help Groups; Surveys and Questionnaires
PubMed: 34315446
DOI: 10.1186/s12913-021-06735-3 -
The Permanente Journal 2018This article explores the efficacy of writing and reading poetry as a means to help people living with chronic pain to explore and express their narratives in their own...
This article explores the efficacy of writing and reading poetry as a means to help people living with chronic pain to explore and express their narratives in their own unique way. Throughout our narrative we have interwoven poems from Eugene Feig, one of the authors of this article. His poetry is sent out almost weekly to the members of our pain support group as a method of sharing his own experiences of living with pain, as well as to support and to inspire hope in others. The style of poetry we are presenting is that of a person who is not knowledgeable about poetry in a formal sense but who has an understanding of how it has helped him learn to live with his own chronic pain and suffering. These poems are the author's expression of the meaning of living with chronic pain for over 20 years. This article is a philosophical hermeneutic conversation about pain and poetry.
Topics: Chronic Pain; Fear; Humans; Narration; Poetry as Topic; Reading; Self-Help Groups; Stress, Psychological; Writing
PubMed: 30005728
DOI: 10.7812/TPP/17-196