Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL.
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ABSTRACT: Background
The Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as 'buddies') organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. The attendees are young people who still have to transfer to adult care. This study aimed to explore the effects of this specific form of peer-to-peer support on the self-management of young people (16-25 years) with ESRD who participated in Camp COOL (CC) (hereafter referred to as 'participants').Methods
A mixed methods research design was employed. Semi-structured interviews (n = 19) with initiators/staff, participants, and healthcare professionals were conducted. These were combined with retrospective and pre-post surveys among participants (n = 62), and observations during two camp weeks.Results
Self-reported effects of participants were: increased self-confidence, more disease-related knowledge, feeling capable of being more responsible and open towards others, and daring to stand up for yourself. According to participants, being a buddy or having one positively affected them. Self-efficacy of attendees and independence of buddies increased, while attendees' sense of social inclusion decreased (measured as domains of health-related quality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader.Conclusions
Camp COOL allowed young people to support each other in adjusting to everyday life with ESRD. Participating in the camp positively influenced self-management in this group. Peer-to-peer support through buddies was much appreciated. Support from young adults was not only beneficial for adolescent attendees, but also for young adult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Together with nephrologists in adult care, they could take on a role in selecting buddies.
SUBMITTER: Sattoe JN
PROVIDER: S-EPMC3878094 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundPatients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role.MethodsThis qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention.DiscussionThe needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers' preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.
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Project description: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.
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Project description:BackgroundOnline support groups (OSGs) are one way for people with chronic diseases, their family or friends, and health professionals to communicate, gain information, and provide social support. As the number of peer-to-peer OSGs for chronic musculoskeletal conditions grows, it is important to gain insight into the different designs of groups available, who is accessing them, if and how they may be effective, and what strategies are being used to implement or increase consumer engagement.ObjectiveThe objectives of this systematic review of people with musculoskeletal conditions were to (1) describe the design features (functions, usage options, moderation, and expert input) of peer-to-peer OSGs, (2) describe the characteristics of the individuals using peer-to-peer OSGs, (3) synthesize the evidence on outcomes of participation, and (4) identify strategies used in the delivery and maintenance of OSGs.MethodsA search comprising terms related to the population (people with musculoskeletal disorders) and the intervention (peer-to-peer OSGs) was conducted in 6 databases. Results were filtered from 1990 (internet inception) to February 2019. Studies identified in the search were screened according to predefined eligibility criteria using a 2-step process. Quantitative studies were appraised by 2 reviewers using the Risk Of Bias In Non-Randomized Studies of Interventions tool. Qualitative studies were appraised by 2 different reviewers using the Critical Appraisal Skills Programme checklist. Extracted data were synthesized narratively.ResultsWe examined 21 studies with low to moderate risk of bias. Of these studies, 13 studies included OSGs hosted on public platforms, 11 studies examined OSGs that were conducted in English, and 6 studies used moderators or peer leaders to facilitate engagement. Studies either reported the number of OSG members (n=1985 across all studies) or the number of posts (range: 223-200,000). The majority of OSG members were females who were not full-time employees and with varied levels of education. There were no randomized controlled trials measuring the efficacy of OSGs. Qualitative and quantitative studies identified empowerment, social support, self-management behavior, and health literacy as primary constructs to measure OSG efficacy. Neutral or marginal improvement was reported in these constructs. Sharing experiences and a greater level of engagement appeared to have an important influence on OSGs efficacy. The extent to which members posted on the website influenced engagement.ConclusionsAcross a diverse range of designs, languages, included features, and delivery platforms, peer-to-peer OSGs for chronic musculoskeletal conditions attract predominantly female participants of all ages and education levels. The level of participation of a member appears to be related to their perceived benefit, health literacy, and empowerment. Future studies are needed to identify which design and maintenance strategies have superior efficacy and whether there are concomitant improvements in health outcomes for people with chronic musculoskeletal conditions resulting from participation in OSGs.Trial registrationPROSPERO International Prospective Register of Systematic Reviews CRD42018090326; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018090326.
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Project description:Homeless people are increasingly supported by peer workers in one-on-one mentorship relations called intentional unidirectional peer support (IUPS). Insight is therefore needed into the application and outcome of IUPS for this vulnerable population. This study examined the outcomes, critical elements, and working mechanisms of IUPS within homeless services from the perspective of both clients receiving IUPS and peer workers providing IUPS. Semi-structured face-to-face interviews were held with ten homeless clients and ten peer workers. According to participants, IUPS enhances clients' self-image, advances their personal growth, and results in better engagement with needed services. Rapport and empathy, a trustworthy and empowering relationship, as well as support, guidance, and mediation are what makes IUPS work according to the participants. The inclusion of both perspectives has led to a deeper understanding of what makes IUPS work for homeless people. Implications for practice are discussed.
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Project description:IntroductionPhysical, psychological, and emotional trauma experienced while incarcerated influences subsequent mental health outcomes. Upon release, there is a fragmented landscape of mental health services and many of the existing services do not account for the root causes of challenges faced by formerly incarcerated people (FIP). To address the unmet social, psychological, behavioral, and emotional needs of FIP in Louisiana, the Formerly Incarcerated Peer Support (FIPS) Group developed a twelve-unit curriculum in 2019.MethodsWe detail the evolution, development, and evaluation of the FIPS Group program. Additionally, we describe the community-driven process for developing the curriculum.ResultsThe FIPS Group has grown from informal meetings of a handful of FIP in New Orleans, Louisiana, into a multi-state, interdisciplinary network of more than 150 stakeholders. FIPS Group has developed the only peer support curriculum we are aware of that is designed by FIP, for FIP, and uses the shared experience of incarceration and reentry as its organizing principle. Limitations of the model include the lack of pending evaluation data and challenges with technological proficiency among FIP.ConclusionsThe FIPS Group model may be generalized in a number of settings. Similar approaches may benefit the mental health of the millions of Americans involved in the criminal-legal system.
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