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The effectiveness of support groups: a literature review

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Abstract

Purpose Support groups are a common feature of the mental health support engaged by carers and consumers. The purpose of this paper is to update and consolidate the knowledge and the evidence for the effectiveness of mental health support groups. Design/methodology/approach This paper is based on a systematic literature review of relevant databases around support groups for mental health. Support groups are defined as meetings of people with similar experiences, such as those defined as carers of a person living with a mental illness or a person living with a mental illness. These meetings aim to provide support and companionship to one another. Findings The results show that there is a consistent pattern of evidence, over a long period of time, which confirms the effectiveness of mental health support groups for carers and people living with mental illness. There is strong, scientifically rigorous evidence which shows the effectiveness of professionally facilitated, family-led support groups, psychoeducation carers support groups, and professionally facilitated, program-based support groups for people living with mental illness. Research limitations/implications This research implies the use of support groups is an important adjunct to the support of carers and people with mental illness, including severe mental illness. Originality/value This research brings together a range of studies indicating the usefulness of support groups as an adjunct to mental health therapy.

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... Over the years, to respond to the gaps in treatment services and to establish, foster and reinforce social networks, support groups are being initiated and established to become a valuable component of healthcare (Mancini et al., 2013;Worrall et al., 2018). Support groups are defined as meeting "for the purpose of giving emotional support and information to persons with a common problem" (Kurtz, 1997, p. 4). ...
... Research on the effectiveness of support groups for people with mental illness indicate that support groups can be a significant adjunct in supporting people with mental illness (Worrall et al., 2018). The studies indicate that support groups for people with lived experience of mental illness have positive and effective outcomes, such as improvements of self-efficacy, enhancing coping skills, self-esteem and social support and reduction of psychiatric symptoms (Mancini et al., 2013;Worrall et al., 2018). ...
... Research on the effectiveness of support groups for people with mental illness indicate that support groups can be a significant adjunct in supporting people with mental illness (Worrall et al., 2018). The studies indicate that support groups for people with lived experience of mental illness have positive and effective outcomes, such as improvements of self-efficacy, enhancing coping skills, self-esteem and social support and reduction of psychiatric symptoms (Mancini et al., 2013;Worrall et al., 2018). Studies have further demonstrated that people attending support groups have increased knowledge of mental illness and mental health services which resulted in improving morale (Pasold et al., 2010). ...
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Purpose The aim of the study is to explore the experience of eating disorder support group participants. The research question is “What is the experience of adults recovering from an eating disorder in a professionally-led monthly support group?” Design/methodology/approach This qualitative study explored the experience of adults recovering from an eating disorder in a professionally-led monthly support group. Participants were 18 adults recovering from an eating disorder who attended a monthly support group. The data were collected using an online anonymous survey and then analysed using a thematic analysis. Findings The main themes that emerged were: (1) sharing the pain and promise, (2) cautions and concerns and (3) facilitators have influence. The findings indicate that the support group provided a safe space to share their lived experience, that it reduced stigma and isolation, and improved participants' motivation and engagement. Moreover, the results revealed some challenges to the functioning of the group. These included management of discussions and dominant members, need for psycho-educational information and managing intense feelings, relating to body-related comparison and other mental disorder comorbidities. Originality/value This is the first study highlighting the valuable role of the facilitator in balancing content with compassion, in ensuring safety in the group, and potentially fulfilling a valuable education function in supporting participants in their eating disorder recovery journey.
... Over the years, to respond to the gaps in treatment services and to establish, foster, and reinforce social networks, support groups are being initiated and established to become a valuable component of health care (Mancini et al., 2013;Worrall et al., 2018). Support groups are defined as meetings 'to give emotional support and information to persons with a common problem' (Kurtz, 1997, p. 4). ...
... Studies indicate that support groups for people with lived experience of mental illness have positive and effective outcomes, such as improvements in self-efficacy, enhancing coping skills, self-esteem and social support, and reduction of psychiatric symptoms (Mancini et al., 2013;Worrall et al., 2018). Studies have further demonstrated that people attending support groups have increased knowledge of mental illness and mental health services, improving morale (Pasold et al., 2010). ...
... Studies have further demonstrated that people attending support groups have increased knowledge of mental illness and mental health services, improving morale (Pasold et al., 2010). Overall, support groups seem to play a vital role in providing a forum for participants to discuss their problems and shared experiences and information (Worrall et al., 2018). More research is needed to explore the effectiveness of professionally-led support groups for people with eating disorders. ...
Article
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Professionally-led support groups are becoming a valuable component of health care. Professionally-led support groups are led by a professional or agency-based facilitator. The purpose of this paper is to consolidate the knowledge and the evidence for the effectiveness of professionally-led eating disorder support groups. The overall findings of the review suggest that professionally-led support groups increased social networks, learning coping strategies, reduction in psychological symptoms, and increased perceptions of the well-being of people living with eating disorders. Moreover, the professional-facilitator role in promoting trust and a sense of safety in the group and providing information support was also vital in supporting the participants. Future research ideas are presented.
... However, despite not demonstrating continued effects on symptom-specific outcome measures, aftercare support group attendance may have had transdiagnostic beneficial effects. Worrall et al. (2018) found that support groups are effective at reducing symptoms, substance misuse, hospitalizations and use of services, as well as improving social competence and increasing healthy behaviours, self-esteem and perceptions of overall wellbeing. In addition, participants across studies reported many of the same perceived benefits from attending support groups: fostering hope; learning coping strategies; building social and support networks; learning from successful role models; feeling more in control of their situation; and overcoming stigma (Worrall et al., 2018). ...
... Worrall et al. (2018) found that support groups are effective at reducing symptoms, substance misuse, hospitalizations and use of services, as well as improving social competence and increasing healthy behaviours, self-esteem and perceptions of overall wellbeing. In addition, participants across studies reported many of the same perceived benefits from attending support groups: fostering hope; learning coping strategies; building social and support networks; learning from successful role models; feeling more in control of their situation; and overcoming stigma (Worrall et al., 2018). Anecdotally, people have attended the support group intermittently for many years, suggesting an intrinsic motivation to participate. ...
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Background Empirical research demonstrates the short- to medium-term efficacy and effectiveness of cognitive behavioural group therapy (CBGT) for social anxiety disorder (SAD). Little is known about the durability of gains beyond 1 year following treatment in real-life clinical settings. Literature regarding the impact of aftercare programs as an adjunct to CBGT treatment on SAD is scarce. Aims To evaluate the long-term effectiveness of CBGT for SAD in a community sample and to explore the relationship between long-term treatment outcomes and aftercare support group attendance. Method A longitudinal cohort design evaluated changes in standardized psychological measures assessing aspects of SAD, anxiety and depression. Questionnaires were completed before the program (time 1, N = 457), after the program (time 2, n = 369) and at an average of 4.6 years follow-up (time 3, n = 138). Results Large treatment effect sizes at post-intervention were maintained at long-term follow-up on measures of SAD, anxiety and depression. There was no statistically significant relationship between frequency of attendance at an aftercare support group and degree of improvement from post-treatment severity on any measure. Conclusions CBGT is an effective intervention in the long-term in a routine clinical setting and should be considered a viable treatment option for SAD. Recommendations for future research, treatment implications and study limitations are considered.
... Community support groups are becoming increasingly popular due to their informal nature (Liddon et al., 2018) and therapeutic contribution to the management of mental health conditions, such as depression (NICE, 2020;Worrall et al., 2018). Men appear to prefer group support significantly more than women (Liddon et al., 2018), potentially due to their difficulty to discuss intimate or personal emotional experiences with professionals on an individual basis (Clement et al., 2015). ...
... Our findings imply that group support may be useful as a gateway to formal mental health services. Though long waiting lists may be of particular concern in the Greater Manchester region where the study took place (Baker, 2019), our findings are consistent with previous research which suggests support groups as an effective bridge to formal mental health support (Worrall et al., 2018). This may be a reasonable approach to address service gaps and facilitate transition to formal support via less intrusive interventions, as suggested by the National Collaborating Center for Mental Health guidelines (NICE, 2018). ...
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Approximately 10% of the general population will experience depression in adulthood. Concerningly, men with depression are more likely to take their own lives and less likely to seek professional support. Given men's preference for community-based support, this study employed interviews with service providers to explore the barriers and facilitators involved in community support groups for men living with depression. Nine interviews were conducted with service providers across Greater Manchester, UK. Data were analyzed via thematic analysis and revealed four themes: 'Mental Health as a Weakness,' 'Empowering Practice,' 'Trust and Security' and 'Group Support as a Gateway to Treatment.' Men living with depression experience identity conflict, which reduces help-seeking. Community support groups facilitate access and engagement with treatment by providing safe spaces to resolve internal conflicts. Gender-specific group support may facilitate access to support and address long waiting lists of statutory services. Implications for practice, policy and future research are discussed.
... They include family-focused interventions, such as family counselling; group workmutual support and social activity groups; and self-care strategies focusing on 'issues of self-esteem, insight into an adaption to illness and its consequences, communication, social functioning and relationships' (National Council for Hospice and Specialist Palliative Care Services, cited in Hudson et al., 2010: 1). Worrall et al (2018) write that carer support groups aim: ...
... In keeping with this suggestion of the tailoring of interventions to specific groups of carers, Worrall et al (2018) showed a consistent pattern of evidence, generated over many years, which confirms the effectiveness of support groups for carers of people with mental illness. Professionally facilitated group work for carers of people with severe mental illness can assist them by: providing education and information in order to increase knowledge and understanding of the disorder; encouraging an atmosphere of mutual trust through which they could explore strategies for coping; and providing emotional support conducive to an open and honest sharing of feelings. ...
Technical Report
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The overall objective was to gain an understanding of current research and debates relevant to the focus areas of the NSW Carers Strategy 2014-2019, and to draw upon this synthesis to suggest future research directions. Literature published in English between 2008 and 2018 was considered for inclusion and a narrative approach was adopted to critically appraise the texts. The literature review provides insights that enable the identified areas of strategic importance for carers to be empirically grounded, and that point to directions for future research. Carer participation in employment and education The literature recognises the need for policies, programs and services to support increasing numbers of citizens who, in light of demographic, socioeconomic and service system factors, need to balance work and care responsibilities. Commentators also recognise that a focus on carer participation, especially for younger carers, benefits when a 'social inclusion' framework is used to develop a more comprehensive account of carers' lives and relationships. Social inclusion for carers would place a holistic focus on their participation in education and training, in community events and other civil society activities, and in employment. Integrated and coherent policy measures that cut across traditional government departmental boundaries would contribute to these outcomes. Studies have investigated carers' decision-making around employment, strategies to support carers, carer-friendly workplaces, and employment support for carers. Longitudinal studies provide data that can continue to be analysed to track the employment of carers in an ever-changing labour market. Services helping young carers to transition through their educational milestones and into employment would benefit from evaluation. Studies highlighting best practice employment assistance for carers, innovative strategies for supporting carers into education and training and the nature of carer-friendly workplaces can be drawn on to contribute to a deeper applied understanding. Carer health and wellbeing Carer health and wellbeing, and the services that contribute towards its promotion, is a key focus of practitioners, policy makers, researchers, academics, and carers themselves. The majority of the texts sourced and analysed in this review of the literature address this broad topic. The studies focus on, amongst others: the caring experience and carers' key concerns; initiatives, programs and services aiming to promote carer health and wellbeing; the effectiveness of professional interventions; the relationship-based helping process inherent to caring; and the links between carer health and wellbeing, carers' information about, and access to, services, and the engagement of carers as partners in care and decision-making. The evidence is strong that multi-component or multi-dimensional interventions are more successful than isolated interventions in addressing the broad range of stressors that impact upon carers' health and wellbeing. Research evidence is growing for the effectiveness of specific interventions for specific groups of carers and also for interventions which target specific carer outcomes, such as reducing carer burden. Future research can build on this solid tradition of scholarship, while paying attention to the need for research designs that separate out different parts of multi-component interventions and then models their unique impact on identified outcomes. In addition to a focus on interventions, research is required that addresses systemic and organisational issues, such as care coordination and partnership working. There are also recommendations in the literature for a stronger research focus on specific, often under-served, groups of carers, such as male carers and Aboriginal and Torres Strait Islander carers. Access to information and community awareness Carers' access to information is closely tied to their access to, and use of, the supports that will help them to address their health and wellbeing needs. People who have assumed care responsibilities need firstly to self-identify as 'carers' in order for them to be open to carer-related information. When they actively seek information, carers use a range of sources (including health professionals), modes (including online), and content, including care situations where carers experience uncertainty and could benefit from having more information or training. Systematic reviews suggest that there is on the whole a poorly developed and theorised concept of 'information needs of carers' in the papers focusing on the topic. It may help to begin with a classification into two broad areas: general information (for carers as a whole) and specific information (addressing the unique needs of each caring situation). Information-provision may often be considered as part of a multi-component intervention, and isolating its specific effects can be difficult. There is a strong research interest in the role of the Internet as a source of information for carers, and also recognition that relying on it depends on the carer being able to critically appraise the information and process it within the context of their situation. There is a lack of research on the broader community's understanding and awareness of carers. More research is also needed that would help to fill identified gaps in understanding carers' information needs, especially in light of the impact of social media and the Internet more broadly, and the impact of information content and mode of delivery on specific carer outcomes. Carer engagement The literature points to the complementarity of informal and formal care in the modern world which necessitates collaboration-service providers need to engage and enter into partnerships with carers, both those that self-identify as carers as well as those that are 'hidden' carers. Carer engagement occurs at the level of individual caring situations and at the more systemic level of involving carers as key stakeholders in the policy and strategic planning processes. While carers can be sources of support in formal service provision, they can also be co-workers that work in partnership with service providers. When carers are in need of support services themselves, they may become co-clients. All of these factors contribute to the complexity of carer engagement and also to the research agenda. Research suggests that engaging carers as partners in care and decision-making works best when professionals identify and welcome carer expertise, and when provider-carer partnerships include strong levels of collaboration from the start. Professionals can work with carers to develop the protocols and guidelines for partnership working, and the collaboration may also include carers and service users involved in the training of professional service users, carers' involvement in committees to plan and manage services, and regular discussion meetings outside of work environments between stakeholders. Research that is more theoretically and professionally informed would generate insights-and provide evidence to improve-the effective and appropriate engagement of carers in models of consumer-directed care, such as the National Disability Insurance Scheme. Research could be directed at better understand practitioner-carer collaboration, and evaluating the programs and services, such as clinical case management, in which this occurs. Evidence to shape policy and programs A priority area in the NSW Carers Strategy 2014-2019, and a key focus for the Centre for Carers Research, is to develop strategies promoting the better use of available data and research to help shape policy and programs. While international and Australian research on carers is dynamic and extensive, it remains important to strive for higher quality evidence that is applicable to the real lived experience of carers and those they care for. Similarly, there is the need for greater understandings of caring contexts, processes, facilitators and barriers. Recognising that carers are themselves consumers of information, more could be done to enhance the reach of research outputs so that they have a more explicit and practical impact on the lives of individual carers and the people they care for. Three broad strategies are discussed in this report:  Operating a carer-specific online database  Synthesis of the research evidence widely disseminated  Trustworthy, signposted, user-friendly online information. Insights from the literature on involving carers in research is also provided. This literature suggests that there is great value in actively including carers in evidence base and practice-oriented research; and that connecting with carers will require an in-depth understanding of how to use social media and other means of recruitment.
... Additionally, knowing that social support is a significant protective factor for PTSD [22], the participants in our study could find additional psychological safety in knowing that the other members of the group had been through a similar experience. In fact, it is already established that support groups can be efficacious [65], but in populations with PTSD, avoidance can be a significant obstacle to treatment [66]. It suggests that a slow gradual approach to social interaction through a technological medium can produce significant changes in the ability to experience closeness and intimacy, as well as in needing and valuing others. ...
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Background: Over 100 million Americans lack affordable access to behavioral health care, and among these, military veterans are an especially vulnerable population. Military veterans require unique behavioral health services that can address military experiences and challenges transitioning to the civilian sector. Real world programs to help veterans successfully transition to civilian life must build a sense of community, have the ability to scale, and be able to reach the many veterans who cannot or will not access care. Digitally based behavioral health initiatives have emerged within the past few years to improve this access to care. Our novel behavioral health intervention teaches mindfulness-based CBT and narrative therapy using peer support groups as guides, with human facilitated asynchronous online discussions. Our study applies natural language processing (NLP) analytics to assess effectiveness of our on-line intervention, to test whether NLP may provide insights and detect nuances of personal change and growth that are not currently captured by subjective symptom measures. Objective: To study the value of natural language processing (NLP) analytics in assessing progress and outcomes among combat veterans and military sexual assault survivors participating in novel online interventions for post traumatic growth. Methods: IBM Watson and Linguistic Inquiry Word Count tools were applied to the narrative writings of combat veterans and survivors of military sexual trauma who participated in novel online peer supported group therapies for post traumatic growth. Participants watched videos; practiced skills such as mindfulness meditation; told their stories through narrative writing; and participated in asynchronous, facilitated online discussions with peers. The writings, including online postings, by the 16 participants who completed the program were analyzed after completion of the program. Results: Our results suggest that NLP can provide valuable insights on shifts in personality traits, personal values and needs, as well as emotional tone in an evaluation of our novel online behavioral health interventions. Emotional tone analysis demonstrated significant decreases in fear/anxiety, sadness, and disgust, as well as increases in joy. Significant effects were found for personal values and needs such as needing/desiring closeness and helping others, and for personality traits of openness, conscientiousness, extroversion, agreeableness and neuroticism (aka emotional range). Participants also demonstrated increases in authenticity and clout (confidence) of expression. NLP results were generally supported by qualitative observations and analysis, structured data and course feedback. Conclusions: The aggregate of results in our study suggest the effectiveness of our behavioral health intervention and that NLP can provide valuable insights on shifts in personality traits, personal values and needs, as well as measure changes in emotional tone. NLP's sensitivity to changes in emotional tone, values and personality strengths suggest efficacy of NLP as a leading indicator of treatment progress. Clinicaltrial:
... Regarding internalized stigma, there is evidence of positive effects on this outcome, both from more structured interventions [7,23] and from mutual support groups [9,31]. However, none of the investigated measures showed a significant difference between the groups in the pre-test, which may indicate a lack of consistency in the results over time. ...
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This study aims to evaluate a group of people with schizophrenia undergoing outpatient treatment and who participate in a mutual support intervention, compared to another group of people with the same diagnosis, but attending only the usual outpatient treatment. This is a prospective study, with two measurements between six months. The mutual support group was initially composed of 16 people and the treatment as usual group was composed of 15 people. Clinical (medication adherence and functioning) and Recovery (hope, well-being, recovery and internalized stigma) outcomes were assessed. Nonparametric tests were used to verify differences in measurements between groups and between two moments. A higher level of internalized stigma and a decrease in the adherence to drug treatment in the treatment as usual group were verified. When comparing the pre-post difference between groups, there was a greater increase in adherence to drug treatment in the mutual support group. Our data point to more favorable results in the mutual support group, showing that ongoing participation in these groups is an important tool for the recovery process and for the treatment itself.
... One of the factors affecting the success of psychoeducational programs is peer support. In particular, online support groups and discussion boards might help users to overcome the feeling of being stigmatized by connecting patients with others (Worrall 2018). Another aspect of social context is the provision of synchronous (chat rooms) contact with other users. ...
Article
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Web-based interventions have the potential to educate persons with mental disorders. But the effects of these interventions on the patient’s symptoms and psychological outcomes and also design features of these interventions are not often explicitly described. The purpose of this study is to systematically present the overall effects and design features of psycho-educational web-based mental health interventions. A systematic search in PubMed, Scopus, EMBASE, and Cochrane Library from January 1990 to January 2020 was conducted. To capture relevant studies, two reviewers independently reviewed and assessed titles and abstracts of the papers against predefined inclusion and exclusion criteria with three groups of keywords addressing mental health, psycho-education, and online intervention. Eligible studies were systematically reviewed on the basis of Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The risk of bias was assessed by using the Jadad tool for methodological quality. For analyzing the results, a combination of frequency and descriptive synthesis was used. From 2227 studies initially identified, 20 studies met all inclusion criteria. Depression disorders with 40% had the highest web-based intervention. In terms of outcome, 70% of included studies had positive effects on symptoms. Also 60% of included studies improved psychological outcomes. In terms of design features, most of included studies had program exposure (100%), social context and support (60%), information architecture (55%), and self-management (50%) features. The infrequent features were contacts with intervention (40%), usability (25%), updated information (20%), and tailoring and targeting (15%). The results of this study showed that program exposure, social context and support, information architecture, and self-management features could influence the effectiveness of a web-based mental health intervention. This review will be helpful for researchers and clinicians as a guide to develop more effective psycho-educational web-based interventions for people with mental disorders.
... We discuss how we prevented or overcame some of these challenges in the next section. While there are no previous studies on the effectiveness of PhD support groups as mental well-being interventions, previous research on support groups for people suffering with mental illness or for their caregivers suggests that they are effective in improving mental well-being across a broad range of focal issues and in various settings (Chou et al., 2002;Mancini et al., 2013;Worrall et al., 2018). Given the literature on the effectiveness of support groups and the increasing prevalence of common psychiatric disorders, such as anxiety and depression amongst the PGR population (Levecque et al., 2017), it seemed apt to introduce such an intervention at our institution. ...
Article
Purpose This paper aims to examine the effectiveness of PhD support groups as an intervention that improves mental well-being and increases confidence in timely PhD completion. Design/methodology/approach Participants of six PhD support groups, which we co-facilitated, completed a survey at the start of the intervention and at the end of the eight weeks of attendance. The survey measured subjective well-being and confidence in completion using the Warwick-Edinburgh Mental Well-being Scale and statements from the Postgraduate Research Experience Survey (2017 and 2019). The final survey also included open-ended questions to identify the helpful factors of the intervention. Findings Participants’ subjective well-being scores increased considerably over the eight weeks of group attendance and improved from initial score ranges associated with risk of depression or psychological distress. As a result of feeling understood and supported by other group members, participants felt less isolated and anxious, were more satisfied with their life and work-life balance, and felt more confident about completing their PhD within the institutional time frame. The results confirm previous findings on the positive effects of social support and the relationship between poor well-being and attrition. Practical implications Support groups could form an integral part of university support as they increase well-being and could improve retention. Originality/value Existing literature mainly highlights factors that affect postgraduate researchers’ well-being, with limited research on innovative interventions. This paper investigates the impact of social support in a facilitated peer group that focuses on the emotional and psychological aspects of the PhD experience, rather than peer group learning or support with specific research tasks.
... Studies have shown that support groups of this kind can assist people in maintaining social connectedness and providing emotional support as effectively as face-to-face peer support groups [31,32]. In addition, online peer support groups that are moderated by either a peer or a professional have been shown to be more effective in providing mental health support compared to nonmoderated online peer support groups [32,33]. ...
Article
Introduction: The wide-spread implementation of interventions to limit transmission and public health consequences of COVID-19 in the Australian state of Victoria had flow-on consequences for people who use and inject drugs. Consequences included the interruption of illicit drug supply and drug procurement, and the disruption to the delivery of health services. To inform strategies that can minimise the adverse outcomes of similar future disruptive events, this study explored how COVID-19 restrictions impacted access to harm reduction and drug treatment services for people who inject drugs in Melbourne, Victoria. Methods: Qualitative semi-structured interviews were conducted via an online calling app, with 11 participants of a broader cohort study (the SuperMIX study) in April 2020. Interviews were focused on participants experiences of accessing and using harm reduction and drug treatment services. Data were thematically analysed using a process of blended coding. Results: Findings revealed how disruptions in the delivery of harm reduction and drug treatment services-in response to COVID-19 restrictions-created barriers accessing sterile injecting equipment, increased risk of arrest by police and exacerbated social isolation. Participants reported difficulties adapting to changes in services access, with some increases in injecting risk behaviours. However, improvements in opioid agonist therapy prescriptions were noted as a beneficial outcome. Discussion: By examining the impacts of COVID-19 and the resultant restrictions on people who inject drugs' access to health services in Melbourne, Victoria, findings provide guidance for future responses to the unanticipated large-scale effects of the COVID-19 pandemic, and similar disruptive events.
... Together, these results suggest that parents and caregivers might benefit from tailored mental health services. For caregivers, and especially persons with dual responsibilities of parenting while also caring for adults, increasing access to, awareness of, and use of support groups and respite services † † † † † † might help to alleviate the caregiving workload § § § § § § (9). ...
Article
Early during the COVID-19 pandemic, nearly two thirds of unpaid caregivers of adults reported adverse mental or behavioral health symptoms, compared with approximately one third of noncaregivers† (1). In addition, 27% of parents of children aged <18 years reported that their mental health had worsened during the pandemic (2). To examine mental health during the COVID-19 pandemic among U.S. adults on the basis of their classification as having a parenting role (i.e., unpaid persons caring for children and adolescents aged <18 years, referred to as children in this report) or being an unpaid caregiver of adults (i.e., persons caring for adults aged ≥18 years),§ CDC analyzed data from cross-sectional surveys that were administered during December 2020 and February-March 2021 for The COVID-19 Outbreak Public Evaluation (COPE) Initiative.¶ Respondents were categorized as parents only, caregivers of adults only, parents-caregivers (persons in both roles), or nonparents/noncaregivers (persons in neither role). Adjusted odds ratios (aORs) for any adverse mental health symptoms, particularly suicidal ideation, were higher among all respondents who were parents, caregivers of adults, or both compared with respondents who were nonparents/noncaregivers and were highest among persons in both roles (parents-caregivers) (any adverse mental health symptoms: aOR = 5.1, 95% confidence interval [CI] = 4.1-6.2; serious suicidal ideation: aOR = 8.2, 95% CI = 6.5-10.4). These findings highlight that parents and caregivers, especially those balancing roles both as parents and caregivers, experienced higher levels of adverse mental health symptoms during the COVID-19 pandemic than adults without these responsibilities. Caregivers who had someone to rely on for support had lower odds of experiencing any adverse mental health symptoms. Additional measures are needed to improve mental health among parents, caregivers, and parents-caregivers.
... There is clear evidence to support the effectiveness of support groups in fostering hope in their participants and improving their well-being. 13 The benefits of participating in support groups for dementia caregivers are apparent when looking at multiple outcome measures, including psychosocial well-being, burden, anxiety and depression. 14,15 However, there are barriers to caregiver involvement in groups, such as lack of transportation and difficulty finding help to care for the person with dementia while their family caregiver attends the group. ...
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Community Psychiatric Services for the Elderly (CPSE) at a large teaching hospital in Toronto has offered a monthly support group for caregivers of persons with dementia for over 30 years. Participants were surveyed in January 2018 about group attendance, benefits of attending the group, and areas for improvement. Results are shared in this case study. A total of 8 participants responded to the survey with a response rate of 47%. The feedback was predominantly positive. The most prevailing theme that emerged from the survey responses was group members’ appreciation for the opportunity to meet with one another to discuss relevant issues and gain support from the facilitator and each other. Feedback from the survey also revealed opportunities for improvement on how the group could be better facilitated to elicit more equal participation from all group members. Formally assessing the value of the group from the perspectives of participants confirmed that the group is a safe place for dementia caregivers to get support and a valuable way to access knowledge from dementia care experts. COVID-19 has fostered evolution of the group from in-person to virtual meeting, opening opportunities for more feedback from members to help create the future of the dementia caregiver support group. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.
... Grupos de ajuda mútua e Associação de pessoas com DP auxiliam no bem-estar dos participantes, pois promovem senso de controle da situação, resiliência, autoconfiança e conhecimento sobre a doença 12 . Entre os benefícios da participação em grupos de ajuda mútua destaca-se: a redução de custos no tratamento da doença; intervenções no estilo de vida e, uma diminuição no tempo das internações hospitalares 12,13 . ...
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Objective: To know the ways of coping when living with Parkinson’s disease. Method: The methodological framework used was the Grounded Theory. Thirty people diagnosed with Parkinson’s disease registered at the Parkinson Santa Catarina Association, SC, Brazil. participated in the in-depth interview. After the data coding process, five people with the disease validated the findings. Data collection took place between September 2013 to April 2014. Results: The categories that emerged were: Share activities with people with Parkinson’s disease; Have family support; Seek healthy living: activities for self-esteem and quality of life. Discussion: The study highlights the importance of family company in promoting patient stability and self-esteem, where family support helps in coping with the health condition. Conclusion: It was possible to know the ways of coping to live with the disease, especially in sharing experiences with peers; family support, leisure activities, and lifestyle changes; Such characteristics are pertinent to the health care of people with neurodegenerative diseases.
... In the structural adjustment programmes of the 1980s and 1990s many of these programmes fell apart, with a retreat from the role of the state and comprehensive PHC. 35,36 The Millennium Development Goals, while signalling a return of funding for the ill-health burdens of the global south and for CHW programmes in particular, entrenched a diseasespecific approach to community health, promoting "neutral technical solutions, implemented in local settings, without attention to the wider economic and political inequalities that drive them. " 16 The second decade of the 21st century has seen the consolidation of a global neo-liberal economic order and the unparalleled growth of markets and market thinking in health systems across the globe. ...
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Community health systems (CHSs) have historically been approached from multiple perspectives, with different purposes and methodological and disciplinary orientations. The terrain is, on the one hand, vast and diverse. On the other hand, under the banner of universal health coverage (UHC) and the Sustainable Development Goals (SDGs), a streamlined version of 'community health' is increasingly being consolidated in global health and donor communities. With the view to informing debate and practice, this paper seeks to synthesise approaches to the CHS into a set of 'lenses, ' drawing on the collective and multidisciplinary knowledge (both formal and experiential) of the authors, a collaborative network of 23 researchers from seven institutions across six countries (spanning low, middle and high income). With a common view of the CHS as a complex adaptive system, we propose four key lenses, referred to as programmatic, relational, collective action and critical lenses. The lenses represent different positionalities in community health, encompassing macro-level policy-maker, front-line and community vantage points, and purposes ranging from social justice to instrumental goals. We define and describe the main elements of each lens and their implications for thinking about policy, practice and research. Distilling a set of key lenses offers a way to make sense of a complex terrain, but also counters what may emerge as a dominant, single narrative on the CHS in global health. By making explicit and bringing together different lenses on the CHS, the limits and possibilities of each may be better appreciated, while promoting integrative, systems thinking in policy, practice and research.
... The positive effect of therapy groups on depression has been given evidence by the literature. We emphasize the study by Breur and Barker (21) who attested to the positive response of participants in the online support groups (people with depression), with improved responses to depression, and self-stigma. ...
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... Additionally, caregivers consistently discussed having a lack of information and services that would help them to better support the children in their care including respite care and support groups that might help them to better manage the stress of caregiving. Kinship caregivers were less likely to be aware of support services which may be due to them not being connected with an existing group of foster parents (Worrall et al., 2018). There is also a need to understand how caregiving might positively and negatively impact their biological children. ...
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Hope has been viewed since ancient times as a bedrock of human thriving, and contemporary evidence suggests that hope is a determinant of health. However, the climate crisis, in addition to its many direct and indirect threats to human health, erodes hope in many people. This article describes medical aspects of hope and hopelessness, including clinical definitions, measurement methods, and treatments. It then touches on literary and philosophical perspectives on hope, from both ancient and modern sources, emphasizing the centrality of hope to human thriving. Finally, it applies these perspectives to the climate crisis, arguing that health professionals should propel hope in themselves, their patients, and the broader society, and drawing on clinical insights to propose concrete ways of doing so.
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This study examined the financial, emotional and relationship impacts of involuntary childlessness and treatment, and the satisfaction with support from professionals. 796 participants in the UK completed an online survey based on a similar survey conducted in 1997. 55% of participants had to pay for at least part of their treatment. High levels of distress were experienced and 42% experienced suicidal feelings at least occasionally. Those most at risk of distress and suicidal feelings had experienced unsuccessful treatment outcomes, spent longer trying to conceive and reported some relationship strains. While 75% would like to have received counselling if it had been free, 45% only received such counselling and 54% of these had to fund some of it themselves. Although advances have been made in improving the availability of funded treatment and psychological support, involuntary childlessness and treatment continue to have financial, emotional and relationship consequences for many people. While counselling was generally reported to be useful, an approach involving all fertility clinic staff in the psychosocial care of clients is advisable.
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Background Peer support groups reduce psychological morbidity and increase social support for Intensive Care Unit (ICU) survivors. Group formats differ and research, although emerging, is limited. This study explores a continuously running ICU Expert by Experience group, which has a dual role of support and service-user consultative, from attendees’ perspectives. Methods A thematic analysis was conducted on interviews with current and past members of an ICU Expert by Experience group. 11 participants took part in online and telephone interviews. Three provided written responses. Final themes were created following a process of data validation with participants. Results Four main themes emerged: (1) Support in the difficult recovery journey (2) Relationships and shared experiences (3) Value of professional facilitation (4) Practical considerations. Conclusion Patients highlighted the help gained from the group as an integral part of their recovery journey. Results also identified practical implications for those considering setting up similar support groups.
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The role of unpaid and informal care is a crucial part of the health and social care system in Australia and internationally. As carers in Australia have received statutory recognition, concerted efforts to foster engagement in carer participation in work and education has followed. However, little is known about the strategies and policies that higher education institutions have implemented to support the inclusion of carers. To address this lack of information, existing higher education institution policies were located to canvas supports available to student carers and identify organisational representative participants. Semi-structured interviews were then undertaken with staff from five higher education institutions to discuss their institutions’ policies and their experiences as stewards of carer inclusion and support. Findings indicate difficulty in identifying carers, the infancy of inclusion policies, support measures that are similar to those for students with a disability and difficulties accommodating flexibility in rigid institutional settings. Findings were synthesised into a framework of strategies, policies and procedures of inclusion to support student carers in higher education.
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Purpose: The purpose of this study was to describe the lived experiences of patients with ostomies participating in a support group. Design: Qualitative, descriptive, phenomenological study. Subject and setting: Fifteen adults with different types of ostomies were recruited from support groups in the state of Georgia. Methods: Semistructured interviews were digitally audio-recorded and transcribed verbatim. Analyses of data were performed using Parse's 5-step thematic analysis. Results: Four major themes and 10 subthemes emerged from the interviews: (1) theme 1-support group gives hope and changes lives, with 2 subthemes of increased knowledge and provided new knowledge and allows open communication; (2) theme 2-changes in body image had 2 subthemes, some things are different and everyone is the same; (3) theme 3-I am not alone resulted in 4 subthemes of feeling of belonging, willingness to be helped, being supported, and developing lifelong relationships; and (4) theme 4-being independent manifested 2 subthemes including confidence in rejoining society, and building confidence and decreased shame. Conclusion: We found that participation in an ostomy support group allowed individuals with ostomies to function at more advanced levels than they were before participating in the support group. The lived experiences were characterized by hope, willingness to live fully again, participating in different activities, and making new friends. Participants shared their positive experiences with others who were experiencing the same problems they once experienced. These findings add to and support the body of knowledge related to the interactions between nurses and individuals with ostomies as well as the care needed to ensure a safe discharge from the acute care facility. New knowledge gained may help in the improvement of the education provided during hospitalization. Providing this information will equip patients and families with a better understanding of and methods to care for their new ostomies and develop an acceptance of their new health status.
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Despite the use of support groups among adoptive parents, few empirical works have assessed outcomes associated with participation in these groups, particularly those delivered via virtual platforms. The purpose of this study was to assess the impact of participation in a virtual, pilot‐phase 10‐week adoptive parent support group, on adoptive parent stress and parental competence. The pilot included support groups at two sites in one south‐eastern state, one urban and the other rural. Data were collected via a retrospective pre‐/post‐design and utilized the Parental Stress Scale and Parental Sense of Competency measures to assess variables of interest. Analyses indicate significant increases in adoptive parent competency and significant decreases in parental stress within support groups at the urban site. No such significant differences were detected for participants in the rural group. Overall, findings indicate that support groups can be beneficial in addressing challenges associated with caregiver stress and competency among adoptive parents. As well, data suggest the need to be attentive to support group structure and duration, among other factors. After a brief review of pertinent background information, this paper will outline findings from this study and discuss salient implications derived from this effort.
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Peer support for mental health seeks to reduce isolation, combat stigma, and promote hope, empowerment, recovery, and community. Modalities of peer support within mental health vary greatly in degree of formality and specific structure, approach, and the types of settings and organizations in which they are embedded. This includes participation in mutual support, peer-run organizations, and peer-delivered services. Research has demonstrated positive outcomes for peer support in mental health, particularly for outcomes associated with broader recovery processes, but studies have generally had significant methodological limitations. Key areas for further development include greater specification of peer support mechanisms, wider implementation of strategies for integrating peer support within organizations, and more rigorous research. Greater advocacy is also needed for expansion of funding sources and reimbursement mechanisms that preserve the flexibility and individualized approach of peer supports, as well as greater opportunities for adequate wages, career advancement, and leadership roles.
Article
Purpose Peer support has been identified as an important protective factor for mental health and overall well-being. The purpose of this study is to examine the feasibility of implementing an online peer support group and its impact on measures of well-being. Design/methodology/approach A mixed-methods randomized controlled trial design was used to examine the feasibility and impact of online peer support. Comparisons in well-being were made between the online peer support group and an in-person peer support group and control group. Participants were randomly assigned to a control group or either a six-week in-person or online peer support group. All participants completed an online survey measuring constructs of well-being pre- and post-condition. Additionally, qualitative data regarding the benefits of peer support and in particular the efficacy of the online format were collected from participants. Analysis of variance and post hoc tests determined significant differences within and between the groups. Findings Both the online and face-to-face peer support groups scored significantly higher on post-test measures of well-being than pre-test scores and control group scores. Qualitative narratives and significant quantitative findings supported the feasibility of peer support offered online. Post-condition outcomes showed that online peer support is as effective as in-person peer support for improving well-being. Originality/value To the best of the authors’ knowledge, this study is the first of its kind to compare online and in-person peer support programs for students in higher education. The results have direct implications for higher education students and practitioners, especially at times when face-to-face support is not feasible.
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Background Patients discharged from intensive care may experience psychological and physical deficits resulting in a long and complex rehabilitation upon discharge. Relatives are also vulnerable to psychological pathologies and diminished health‐related quality of life following the patients' critical illness. Relatives often provide care during the patients' rehabilitation, which may influence their health. Aim To report the outcomes and experiences of relatives of patients discharged home after critical illness. Design Systematic integrative review. Methods Electronic databases Cumulative Index of Nursing and Allied Health Literature, PubMed, Embase®, and PsychINFO® were searched using keywords, synonyms, and medical subject headings. Reference lists of articles and critical care journals were manually searched. Studies eligible for inclusion reported primary research and were published in English between 2007 and 2017. Studies were appraised using the Critical Appraisal Skills Programme checklists. Data were extracted and then analysed according to framework. Findings Twenty‐five studies were included: 19 quantitative, 4 qualitative, and 1 mixed method study. Three themes were identified: health and well‐being, employment and lifestyle, and caregiving role. Health and well‐being reports the incidence and significance of psychological morbidity such as post‐traumatic stress disorder, anxiety, and depression. Employment and lifestyle describes the impact of caregiving on the relative's ability to work and engage in usual social activities. The final theme describes and discusses the caregiving role in terms of activities of daily living, knowledge and skills, and adaption to the role. Conclusions There is a significant and meaningful impact on outcomes and experiences of relatives of patients discharged home after critical illness. Relatives' caregiving is embedded within the context of their psychological morbidity and social adjustment. Relevance to practice If informal care giving is to be sustainable, there is a need to design effective strategies of supporting families through all stages of the critical illness trajectory.
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Background: Although there is some quantitative evidence to suggest the benefits of group psychoeducation for people with bipolar disorder, patients' perspectives and experiences of group psychoeducation require in-depth exploration to enable us to better understand the feasibility, acceptability and impact of these interventions, the potential facilitators and barriers to engagement, and how to improve these interventions in the future. Methods: In-depth, semi-structured interviews were conducted with 13 participants of a psychoeducation programme for bipolar disorder in Wales, following their involvement in the programme. The data were recorded and transcribed verbatim and analysed using thematic analysis. Results: Findings demonstrate that group psychoeducation may impact on participants' perceived social support, knowledge and acceptance of bipolar disorder, personal insights, attitude towards medication and access to services. Key recommendations for improvement included: allowing more time for group discussions, offering group sessions to family members and avoiding use of hospital or university venues for the groups. Conclusions: This is the first qualitative study of patients' perspectives of a UK-based group psychoeducation programme for people with bipolar disorder, and findings present an in-depth account of how group psychoeducation may be experienced by patients. The recommendations for improving the content and delivery of group psychoeducation for bipolar disorder may enhance engagement and widen access to such programmes. Future research into psychoeducation for bipolar disorder should explore how to target and engage people of diverse ethnic backgrounds and those in lower socioeconomic groups who are less likely to access healthcare services.
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Objective: To evaluate the efficacy and feasibility of actions intended to implement or improve patients' social network within the Italian National Health Service community mental health services. Methods: We conducted a randomized clinical trial through a network of 47 community mental health services on patients with a diagnosis in the schizophrenia spectrum (F20 in the International Classification of Diseases, 10th Revision), who were young (aged younger than 45 years), and with a poor social network (less than 5 relationships). In addition to routine treatments, for the experimental group, the staff identified possible areas of interest for individual patients and proposed social activities taking place outside the services' resources and with members of the community. The main outcome was an improvement in the patients' social network; secondary end points were clinical outcome, abilities of daily living, and work. Results: One- and 2-year outcomes of 345 and 327, respectively, of the 357 patients randomized were analyzed by intention-to-treat. A social network improvement was observed at year 1 in 25% of the patients allocated to routine treatment and in 39.9% of those allocated to the experimental arm (OR 2.0, 95% CI 1.3 to 3.1; adjusted OR 2.4, 95% CI 1.4 to 3.9). The difference remained statistically significant at year 2. No significant differences emerged for any of the other end points. However, patients with 1 or more other areas of improvement at year 1 and 2 showed a statistically significant social network improvement. Conclusions: The activation of social networks as an activity integrated with standard psychiatric care is practicable, without added economic and organizational costs, and appears to produce an effect persisting well beyond its implementation.
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This study evaluated a statewide demonstration project to implement a group-based intervention called Procovery in selected inpatient and community mental health centers. Procovery is a facilitated mutual support group designed to build hope and a sense of social inclusion by raising consciousness and helping people develop an understanding of the ways one can move toward recovery in their own lives. This evaluation sought to determine both consumer outcomes and perceptions of the program and implementation efforts held by consumers and the facilitators of the intervention. A multidimensional approach was used, including a quasi-experimental design with consumers, questionnaires and focus groups with the intervention facilitators, and individual interviews with administrators. The Procovery model was shown to have a positive impact on consumers' recoveries and was viewed favorably by consumers, facilitators, and administrators. Several barriers to effective implementation were identified. These findings and their implications for future practice and research are discussed.
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Background In a recent exploratory randomised trial we found that a novel, internet-based psychoeducation programme for bipolar disorder (Beating Bipolar) was relatively easy to deliver and had a modest effect on psychological quality of life. We sought to explore the experiences of participants with respect to feasibility, acceptability and impact of Beating Bipolar. Methods Participants were invited to take part in a semi-structured interview. Thematic analysis techniques were employed; to explore and describe participants’ experiences, the data were analysed for emerging themes which were identified and coded. Results The programme was feasible to deliver and acceptable to participants where they felt comfortable using a computer. It was found to impact upon insight into illness, health behaviour, personal routines and positive attitudes towards medication. Many participants regarded the programme as likely to be most beneficial for those recently diagnosed. Conclusions An online psychoeducation package for bipolar disorder, such as Beating Bipolar, is feasible and acceptable to patients, has a positive impact on self-management behaviours and may be particularly suited to early intervention. Alternative (non-internet) formats should also be made available to patients.
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Examined predictors of benefits derived from participating in support groups for families of persons with mental illness. A questionnaire was administered to 131 families (with members aged 25–82 yrs) who had a relative (aged 17–88 yrs) with a severe mental illness. Data were gathered from Ss on demographic characteristics, external support resources, level of group involvement, and group structure. Results indicate that social support resources outside the group, as well as support received from and provided by the group, were associated with information acquired by the participant. Improved relationships with family and the mentally ill relative were predicted by the participant's health and provision of support in the group.
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Background Education and support for caregivers is lacking in Asia and the peer-led FamilyLink Education Programme (FLEP) is one of the few provisions to address this service gap. This study aims to evaluate quantitatively its efficacy in reducing subjective burdens and empowering the participants. Method One hundred and nine caregiver participants in three Asian cities were successfully surveyed at pre-intervention, post-intervention and six-month intervals with a number of standard inventories. Mixed analysis of variance (ANOVA) procedures showed significant programme impact over time intervals for all sites, and subsequently an empowerment measurement model was tested. Results FLEP was found effective in reducing worry and displeasure, significantly improving intra-psychic strain, depression and all empowerment measures. The measurement model had an acceptable good fit. Baseline difference showed no interference with the programme efficacy. Conclusions Apart from the initial support for FLEP, the current study also provides some hindsight on the empowerment practice in mental health for Asia, whose sociocultural political contexts are vastly different from that of the developed countries. It remains to be seen whether qualitative data or more stringent research design will yield consistent results and whether FLEP can also work in rural areas.
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Psychosocial interventions have the potential to enhance relapse prevention in bipolar disorder. To evaluate a manualised group-based intervention for people with bipolar disorder in a naturalistic setting. Eighty-four participants were randomised to receive the group-based intervention (a 12-week programme plus three booster sessions) or treatment as usual, and followed up with monthly telephone interviews (for 9 months post-intervention) and face-to-face interviews (at baseline, 3 months and 12 months). Participants who received the group-based intervention were significantly less likely to have a relapse of any type and spent less time unwell. There was a reduced rate of relapse in the treatment group for pooled relapses of any type (hazard ratio 0.43, 95% CI 0.20-0.95; t(343) = -2.09, P = 0.04). This study suggests that the group-based intervention reduces relapse risk in bipolar disorder.
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Predictors of benefits derived from participating in support groups for families of persons with mental illness were examined. A survey of 131 families indicated that social support resources outside the group, as well as support received from and provided by the group, were associated with information acquired by the participant. Improved relationships with family and the ill relative were predicted by the participant's health and provision of support in the group.
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This study tested the effectiveness of a mutual support multiple-family-group intervention for schizophrenia in terms of improvements in patients' psychosocial functioning, use of mental health services, and rehospitalization compared with a psychoeducation intervention and standard care. A controlled trial was conducted in a sample of 96 Chinese families who were caring for a relative with schizophrenia in Hong Kong. The families were randomly assigned to one of three groups: mutual support (N=32), psychoeducation (N=33), and standard care (N=31). The interventions were delivered at two psychiatric outpatient clinics over a six-month period. The mutual support and psychoeducation interventions consisted of 12 group sessions every two weeks, each lasting about two hours. The mutual support group was a peer-led group designed to provide information, emotional support, and coping skills for caregiving in stages. The psychoeducation group was a professional-led group designed to educate families about the biological basis of schizophrenia and treatment and to improve illness management and coping skills. The standard care group and the other two groups received routine psychiatric outpatient care during the intervention. Data analyses of multiple outcomes over one-year follow-up were conducted on an intention-to-treat basis. Multivariate analyses of variance showed that the mutual support intervention was associated with consistently greater improvements in patients' functioning and rehospitalization and stable use of mental health services over the follow-up period compared with the other two interventions. The study provides evidence that mutual support groups can be an effective family intervention for Chinese persons with mental illness in terms of improving patients' functioning and hospitalization without increasing their use of mental health services.
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The role of 12-step programs and 12-step-oriented treatments for dually diagnosed individuals (DDI) remains unclear. Here are presented the results of a pilot study in which 10 seriously mentally ill patients received a modified 12-step facilitation (TSF) therapy emphasizing engagement of DDI in a specialized 12-step program for DDI. Participants significantly increased their 12-step attendance and decreased their substance use during the 12 weeks of treatment. Larger and longer-term studies are needed to assess the efficacy of modified TSF for DDI relative to other treatments, and to determine what forms of TSF are most effective in this population.
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Latinos constitute the largest minority in the United States, and there is an increasing number of Latino patients with schizophrenia and other psychoses living into old age. However, few specific behavioral interventions have been developed aimed at improving the functioning of this group. We evaluated a psychosocial intervention designed to improve the everyday living skills of middle-aged and older outpatients with very chronic psychotic disorders. Three psychiatric clinics, specializing in care of Latinos, were randomly assigned to (1) a 24-session intervention entitled Programa de Entrenamiento para el Desarrollo de Aptitudes para Latinos (PEDAL) group therapy (n = 21) targeting areas identified in our previous work as being problematic for this population (e.g., using public transportation) or (2) a time-equivalent friendly support group (SG; n = 8). Compared to the patients randomized to SG, PEDAL-treated patients' performance on everyday living skills improved significantly postintervention and was still significantly better at a 6-month maintenance follow-up period and at a 12-month no-treatment follow-up period. There was no significant change in psychopathology. Limitations of this pilot study are discussed. Results suggest that participation in this skills training program, designed specifically for older Latino patients with long-standing psychotic disorders, has the potential to significantly increase the patients' independence and improve functional skills.
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Previous research suggests that consumer operated services facilitate recovery from serious mental illness. In part I of this series, we analyzed the content of the GROW program, one example of a consumer operated service, and identified several processes that Growers believe assists in recovery. In this paper, we review the qualitative interviews of 57 Growers to determine what actual participants in GROW acknowledge are important processes for recovery. We also used the interviews to identify the elements of recovery according to these Growers. Growers identified self-reliance, industriousness, and self-esteem as key ingredients of recovery. Recovery was distinguished into a process-an ongoing life experience-versus an outcome, a feeling of being cured or having overcome the disorder. The most prominent element of GROW that facilitated recovery was the support of peers. Gaining a sense of personal value was also fostered by GROW and believed to be important for recovery. The paper ends with a discussion of the implications of these findings for the ongoing development of consumer operated services and their impact on recovery.
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The findings from research on self-help groups for people with serious mental illness consistently show: (1) reduced symptoms and substance abuse over time[4-7,9-121]; (2) concomitant reductions in crises, hospitalizations, and use of services[5-7,12-14]; (3) improved social competence and social networks[4,9,10,13,15]; and (4) increased healthy behaviors and perceptions of well-being. [3,7,10,12,14,15]. Healthy behaviors and perceptions of well-being include: medication compliance; acceptance of illness; better coping and management of illness; improved quality of life and sense of well-being; greater sense of security and self-esteem; acceptance of problems without blame; creation of one's own meaningful structure; and changes in what mental healthcare consumers wanted from time spent with family.
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Family interventions in schizophrenia have shown positive effects on patients but little attention has been paid to their effects on family members, particularly those in non-Western countries. This randomized controlled trial evaluated the effectiveness of a bi-weekly, 12-session, family-led mutual support group for Chinese caregivers of schizophrenia sufferers over 6 months compared with standard psychiatric care. It was conducted with 76 families of outpatients with schizophrenia in Hong Kong of whom 38 were assigned randomly to either a mutual support group or standard care. Families' psychosocial health status and patients' symptom severity and length of re-hospitalizations at recruitment, one-week and 12-month post-intervention were compared between groups. Results of repeated-measures mixed model indicated that the mutual support group experienced significantly greater improvements in families' burden, functioning and number of support persons and length of patients' re-hospitalizations at two post-tests. The findings provide evidence that mutual support groups can be an effective family-initiated, community-based intervention for Chinese schizophrenia sufferers.
Article
This study explored the roles of referent power (i.e., influence based on sense of identification) and expert power (i.e., influence based on knowledge and expertise) in Schizophrenics Anonymous (SA), a mutual‐help group for persons experiencing a schizophrenia‐related illness. The study describes SA participants' experience of referent and expert power with SA members, SA leaders, and with mental health professionals. It also examines whether or not referent and expert power ascribed to fellow SA participants predicts the perceived helpfulness of the group. One hundred fifty‐six SA participants were surveyed. Participants reported experiencing higher levels of referent power with fellow SA members and leaders than with mental health professionals. They reported higher levels of expert power for mental health professionals and SA leaders than for SA members. The respondents' ratings of their SA group's helpfulness was significantly correlated with ratings of referent and expert power. Although expert power was the best independent predictor of helpfulness, a significant interaction between referent and expert power indicated that when members reported high referent power, expert power was not related to helpfulness. These results are interpreted to suggest that there are multiple forms of social influence at work in mutual help.
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This chapter describes the goals and key therapeutic processes of mutual-help groups (MHGs) presumed to facilitate improvement and/or maintenance of functioning. It reviews and evaluates available outcome data pertaining to MHGs' effectiveness in helping individuals manage or recover from their respective disorders, including any evidence in support of the key therapeutic processes. It describes the role MHGs plays in a formal treatment plan and describes how professionals facilitate and coordinate participation in these groups. It concludes by describing opportunities for further research and what might be done to help disseminate knowledge about MHGs and their potential utility. It provide information about various MHGs divided into three distinct problem areas—i.e., substance dependence (e.g., alcohol, cocaine), mental illness (e.g., schizophrenia, depression), and dual diagnosis (i.e., substance dependence in combination with mental illness). It provides summary tables containing brief descriptions of the MHGs, website and contact information, degree of evidence for the MHGs, and several other indices that facilitate easy comparisons of organizations along multiple lines. It also provides detailed MHG information in the text regarding other compulsive behaviors (e.g., gambling, sex, eating behaviors) and family-related MHGs.
Article
Objective: This study was conducted to test the effects of a nine-month family-led peer support group for Chinese people with schizophrenia in Hong Kong over a three-year follow-up and to compare outcomes with those of psychoeducation and standard psychiatric outpatient care. Methods: A randomized controlled trial of 106 Chinese families of patients with schizophrenia was conducted between August 2007 and January 2011 in three psychiatric outpatient clinics. Families were randomly assigned to peer support (N=35), psychoeducation (N=35), or standard care (N=36). In addition to standard care received, peer support and psychoeducation consisted of 14 two-hour group sessions, with patients participating in six to 14 sessions. Multiple patient and family outcomes--including families' support service utilization and functioning and patients' functioning mental state and rehospitalization rate--were measured at recruitment and one week, 18 months, and 36 months after completion of the interventions. Results: Patients and families in the peer support group reported consistently greater improvements over three years in overall functioning (family p<.005; patient p<.001) and reductions in duration and number of hospitalizations (p<.01 for both), without any increase in service utilization. Conclusions: Family-led peer support groups were an effective intervention for Chinese people with schizophrenia, resulting in long-term effects of improving patient and family functioning and reducing rehospitalizations.
Article
This article explores the contribution of self-help/mutual aid groups to mental well-being. Self-help/mutual aid groups are self-organising groups where people come together to address a shared a health or social issue through mutual support. They are associated with a range of health and social benefits, but remain poorly understood. This article draws on data from stage one of ESTEEM, a project which runs from 2010 to 2013. Stage one ran from 2010 to 2011 and involved participatory, qualitative research carried out in two UK sites. Twenty-one groups were purposively selected to include a range of focal issues, longevity, structures and ethnic backgrounds. Researchers carried out 21 interviews with group coordinators and twenty group discussions with members to explore the groups' purpose, nature and development. Preliminary analysis of the data suggested that mental well-being was a common theme across the groups. Subsequently the data were re-analysed to explore the groups' contribution to mental well-being using a checklist of protective factors for mental well-being as a coding framework. The findings showed that groups made a strong contribution to members' mental well-being by enhancing a sense of control, increasing resilience and facilitating participation. Group members were uplifted by exchanging emotional and practical support; they gained self-esteem, knowledge and confidence, thereby increasing their control over their situation. For some groups, socio-economic factors limited their scope and threatened their future. The article provides an evidence-base which illustrates how self-help/mutual aid groups can enhance mental well-being. If supported within a strategy for social justice, these groups enable people with varied concerns to develop a tailored response to their specific needs. The authors suggest that policy-makers engage with local people, investing in support proportionate to the needs of different populations, enabling them to develop their own self-help/mutual aid groups to enhance their sense of mental well-being.
Article
This article provides a snapshot of the nature, guiding philosophy, and empiric status of interventions for people with schizophrenia that go beyond traditional psychopharmacological and psychosocial treatments to include peer-led interventions. The authors discuss the nature and principles of peer-led interventions for people with schizophrenia and the types of peer-led interventions along with evidence of their effectiveness in fostering the recovery of people with schizophrenia and other severe mental illnesses. Focus is on 3 types of peer-led interventions: (1) mutual support/self-help, (2) consumer-operated services, and (3) peer support services.
Article
Background: The Internet is becoming increasingly important in psychiatry and psychotherapy. Aims: The objective of this study was to evaluate if and how online self-help forums are used by patients with bipolar disorders, their relatives and treating professionals. Methods: A total of 2400 postings in two online forums were analysed qualitatively and quantitatively. Results: "Disclosure", "friendship" and "online-group cohesion" were the main self-help mechanisms. The topics most discussed were "social network", "symptoms of the illness" and "medication". Factor analyses revealed three factors concerning self-help mechanisms: "group cohesion", "emotional support" and "exchange of information", as well as three factors concerning fields of interest: "illness-related aspects", "social aspects" and "financial and legal issues". Conclusion: We infer that the main interest in participating in online forums for patients with bipolar disorders and their relatives is to share emotions and to discuss their daily struggles with the illness. Our study also reveals that social networking is very important for patients coping with bipolar disorders. Psycho-educative programmes should focus on those aspects.
Article
Despite the prevalence of Internet support groups for individuals with mental illnesses little is known about the potential benefits, or harm, of participating in such groups. Therefore, this randomized controlled trial sought to determine the impact of unmoderated, unstructured Internet peer support, similar to what is naturally occurring on the Internet, on the well-being of individuals with psychiatric disabilities. Three hundred individuals resident in the USA diagnosed with a Schizophrenia Spectrum or an Affective Disorder were randomized into one of three conditions: experimental Internet peer support via a listserv, experimental Internet peer support via a bulletin board, or a control condition. Three measurement time points, baseline, 4- and 12 months post-baseline, assessed well-being by examining measures of recovery, quality of life, empowerment, social support, and distress. Time × group interactions in the repeated measures ANOVA showed no differences between conditions on the main outcomes. Post-hoc repeated measures ANOVAs found that those individuals who participated more in Internet peer support reported higher levels of distress than those with less or no participation (p = 0.03). Those who reported more positive experiences with the Internet peer support group also reported higher levels of psychological distress than those reporting less positive experiences (p = 0.01). Study results therefore do not support the hypothesis that participation in an unmoderated, unstructured Internet listserv or bulletin board peer support group for individuals with psychiatric disabilities enhances well-being. Counterintuitive findings demonstrating those who report more positive experiences also experienced higher levels of distress are discussed but we also point to the need for additional research. Future research should explore the various structures, formats, and interventions of Internet support, as well as the content and quality of interactions. Knowledge generated from such research can help to inform policies and guidelines for safely navigating online resources and supports to gain maximum benefit.
Article
This study examined the positive effects on recovery outcomes for people with severe and persistent mental illness using peer-led groups based on Pathways to Recovery: A Strengths Recovery Self-Help Workbook (PTR). PTR translates the evidence-supported practice of the Strengths Model into a self-help approach, allowing users to identify and pursue life goals based on personal and environmental strengths. A single-group pretest-posttest research design was applied. Forty-seven members in 6 consumer-run organizations in one Midwestern state participated in a PTR peer-led group, completing a baseline survey before the group and again at the completion of the 12-week sessions. The Rosenberg Self-Esteem Scale, the General Self-Efficacy Scale, Multidimensional Scale of Perceived Social Support, the Spirituality Index of Well-Being, and the Modified Colorado Symptom Index were employed as recovery outcomes. Paired Hotelling's T-square test was conducted to examine the mean differences of recovery outcomes between the baseline and the completion of the group. Findings revealed statistically significant improvements for PTR participants in self-esteem, self-efficacy, social support, spiritual well-being, and psychiatric symptoms. This initial research is promising for establishing PTR as an important tool for facilitating recovery using a peer-led group format. The provision of peer-led service has been emphasized as critical to integrating consumers' perspectives in recovery-based mental health services. Given the current federal funding stream for peer services, continued research into PTR and other peer-led services becomes more important.
Article
The need for a model that can portray dynamic processes of change in mutual help groups for mental health (MHGMHs) is emphasized. A dynamic process model has the potential to capture a more comprehensive understanding of how MHGMHs may assist their members. An investigation into GROW, a mutual help organization for mental health, employed ethnographic, phenomenological and collaborative research methods. The study examined how GROW impacts on psychological well being. Study outcomes aligned with the social ecological paradigm (Maton in Understanding the self-help organization: frameworks and findings. Sage, Thousand Oaks 1994) indicating multifactorial processes of change at and across three levels of analysis: group level, GROW program/community level and individual level. Outcome themes related to life skills acquisition and a change in self-perception in terms of belonging within community and an increased sense of personal value. The GROW findings are used to assist development of a dynamic multi-dimensional process model to explain how MHGMHs may promote positive change.
Article
To explore the literature through a systematic search to assess the effectiveness of mutual support groups for family caregivers of people with schizophrenia and other psychotic disorders. This review of the research literature was based on the procedures suggested by the National Health Service Centre for Reviews and Dissemination (2001) Report Number 4 in the UK [National Health Service Centre for Reviews and Dissemination, 2001. Undertaking Systematic Reviews of Research on Effectiveness: CRD's Guidance for those Carrying out or Commissioning Reviews (CRD Report Number 4). 2nd ed., University of York, York, UK]. A combined free-text and thesaurus approach was used to search relevant research studies within electronic databases, including Medline, Embase, CINAHL, OVID full-text, PsycINFO, the Cochrane Library, the British Nursing Index, the NHS National Research register, and System for Info on Grey literature for the period 1980-2007. Reference lists of all retrieved literature were also searched to identify studies that may have been missed. Twenty-five research studies were selected for inclusion in the analysis on the basis that they were either family led or professional-facilitated support group programmes for family caregivers of people with schizophrenia or other psychotic disorders. The review identified that most studies on this group programme used qualitative, exploratory cross-sectional surveys and quasi-experimental study designs (n=19); six were experimental studies or randomised controlled trials. There were only a few small-scale, single-centre controlled trials with the findings supporting the significant positive effects of mutual support groups on families' and patients' psychosocial well-being. A number of non-experimental studies conducted in Western countries reported benefits of group participation up to 1 year, such as increased knowledge about the illness, reduced burden and distress, and enhanced coping ability and social support. However, many of these studies lacked rigorous control and did not use standardised and valid instruments as outcome measures or schedule follow-up to examine the long-term effects of support groups on families and/or patients. With increasing recognition of benefits from mutual support, this review highlights the dearth of evidence for the effects and active ingredients of mutual support groups. Mutual support may have significant impacts on long-term psychosocial and nursing interventions for both patients with severe mental illness and their families in community mental health care. Further research is recommended to investigate the therapeutic components and effects of mutual support groups for family caregivers of people with schizophrenia and psychotic disorders across cultures.
Article
Peer support groups are rarely available for patients with psychosis, despite potential clinical and economic advantages of such groups. In this study, 106 patients with psychosis were randomly allocated to minimally guided peer support in addition to care as usual (CAU), or CAU only. No relevant differences between mean total costs of both groups were found, nor were there significant differences in WHOQoL-Bref outcomes. Intervention adherence had a substantial impact on the results. It was concluded that minimally guided peer support groups for psychosis do not seem to affect overall healthcare expenses. Positive results of additional outcomes, including a significant increase in social contacts and esteem support, favour the wider implementation of such groups.
Article
In recent years, self-help groups for relatives of schizophrenic patients have become a vital organization in Germany. The commitment of group members is often impressive, but an empirical study investigating the impact of the activity in such groups has yet to be published. An initial approach was made possible by the Münster Families Study, a prospective evaluation study designed to register the impact of relatives' self-help schizophrenic patients. Following a 1-year therapeutic phase, two relatives' self-help groups were formed; these were followed for 2 years. The study showed that relatives of severely mentally ill male patients with high levels of expressed emotion (EE) were most likely to join self-help groups. In the 2-year follow-up period, there was a tendency towards a more favourable development among these patients than among the comparably ill patients forming a control group, whose relatives were not involved in self-help. What was more marked, however, was the positive development among involved relatives, whose EE levels remained unchanged but who displayed higher levels of social contacts and fewer physical complaints. When encouraging the formation of such self-help groups, however, it has to be borne in mind that only a small proportion of relatives can be motivated to, or are capable of, active long-term involvement.
Article
Substance abuse treatment programs in the United States frequently incorporate self-help approaches, but little is known about the use of self-help groups by individuals with dual disorders. This paper brings together several current studies on the role of self-help programs in treating substance use disorders among individuals with severe mental illness. These studies indicate that only a minority of individuals with dual disorders become closely linked to self-help. Psychiatric diagnosis and possibly social skills are correlates of participation. Dually disorders consumers often experience the use of 12-step philosophy and jargon by mental health professionals as alienating and unempathic. The authors propose suggestions for incorporating self-help approaches into the comprehensive community care of individuals with dual disorders.
Article
This study explored the roles of referent power (i.e., influence based on sense of identification) and expert power (i.e., influence based on knowledge and expertise) in Schizophrenics Anonymous (SA), a mutual-help group for persons experiencing a schizophrenia-related illness. The study describes SA participants' experience of referent and expert power with SA members, SA leaders, and with mental health professionals. It also examines whether or not referent and expert power ascribed to fellow SA participants predicts the perceived helpfulness of the group. One hundred fifty-six SA participants were surveyed. Participants reported experiencing higher levels of referent power with fellow SA members and leaders than with mental health professionals. They reported higher levels of expert power for mental health professionals and SA leaders than for SA members. The respondents' ratings of their SA group's helpfulness was significantly correlated with ratings of referent and expert power. Although expert power was the best independent predictor of helpfulness, a significant interaction between referent and expert power indicated that when members reported high referent power, expert power was not related to helpfulness. These results are interpreted to suggest that there are multiple forms of social influence at work in mutual help.
Article
Outcome research is beginning to suggest that mutual-help programs lead to significant improvements in the quality of life and related factors of members who have serious mental illness. This paper is the first in a series that examines recovery processes that may account for these positive outcomes. In Study 1, a content analysis was completed on one dimension of the written program for GROW, a mutual-help program with more than 40 years of experience. Thirteen reliable recovery processes emerged from this analysis; most prominent among these was to "be reasonable" and to "decentralize from self by participating in community." In Study 2, the recovery processes that emerged from this analysis of one aspect of GROW's written program were applied to 22 written testimonies made by Growers. Results of this analysis again showed being reasonable and decentralizing from self by participating in community were essential processes in this mutual-help program. Analysis of the personal testimonies also showed accepting one's personal value as an important element in the GROW program.
Article
The purpose of this study was to assess the effects of support groups on caregivers of patients with schizophrenia. This was a time series nonequivalent control group design. Subjects were evaluated in three waves of data collection: before intervention, after intervention and one-month follow-up. The support group's effects were measured using changes in the subjects' perceived levels of burden, depression status and satisfaction about their participation in the program. Professionally led support group had a close and time-limited format. The GEE (generalized estimated equation) revealed differences in caregivers' level of burden and depression status between the support and control groups in the post-test and one-month follow-up. The differences highlighted the fact that participation in support groups provides more effective assistance to caregivers than the control group.
Article
This randomized controlled trial examined the effectiveness of a 12-session mutual support group conducted over 3-months for Chinese family caregivers of a relative with schizophrenia compared with routine family support services in Hong Kong. Forty-eight family caregivers from two psychiatric outpatient clinics were allocated randomly to an experimental (mutual support and usual outpatient care) group (n = 24) or a control (usual outpatient care only) group (n = 24). Data were collected prior to, 1 week and 3 months after the intervention. Families allocated to the mutual support group experienced decreased levels of family burden and increased family functioning and these changes were significantly greater than those of the controls at both post-intervention time points. The experimental group also showed a significant decrease in the duration of patient re-hospitalization (the total number of days of psychiatric hospitalization) at 3 months compared with the control group. This suggests that the mutual support group provided a more responsive service for patients than standard care. However, there was no significant difference in family service utilization between the two groups. The findings indicate that a mutual support group can provide benefits for family caregivers of people with schizophrenia that go beyond those provided by routine family support.
Article
This paper reports a study to examine the effectiveness of a 12-session mutual support group for Chinese families caring for a relative with schizophrenia compared with a psycho-educational group and routine family support services in Hong Kong. Schizophrenia is a disruptive and distressing illness for patients and their families. With the current trend of community care for mental illness, there is evidence that family intervention reduces patient relapse and re-hospitalization, satisfies the health needs of families and enhances their coping capabilities. A randomized controlled trial was conducted from May 2002 to June 2003 with 96 Chinese families of a relative with schizophrenia selected from two psychiatric outpatient clinics in Hong Kong. Families were randomly assigned to receive mutual support (n = 32), psycho-education (n = 33) or standard care only (n = 31). The interventions were delivered at outpatient clinics over a 6-month period. Pre- and post- (1 week and 6 months) testing took place and families' functioning, mental health service utilization, patients' level of functioning and duration of re-hospitalization were measured. At both post-test periods, family caregivers and patients in the mutual support group reported statistically significant improvements on family and patients' level of functioning, when compared with their counterparts in the psycho-education and standard care groups. The findings support the use of mutual support groups as an effective modality of family intervention in a Chinese population caring for a family member with schizophrenia to improve both family and patient functioning.
Article
In this qualitative study, the authors explore from the participants' perspective the benefits and difficulties experienced by participants in a mutual support group for Chinese family carers of patients with schizophrenia in Hong Kong. Thirty family carers and 10 patients who had participated in a 12-session mutual support group were interviewed, and the 12 group sessions were audiotaped for content analysis. Three main themes emerged from the data: (a) positive personal changes attributed to group participation, which included enhanced self-identity and acceptance of the caregiving role, increased knowledge of the illness, and adoption of new coping skills; (b) positive characteristics of the mutual support group, including the explicit group ideology and consensus, perceived social climate of the group, and informational support and empowerment; and (c) major inhibitors of group development, specifically low or irregular group attendance, negative pressure from dominant members, and overexpression of intense and negative feelings. These findings contribute to our understanding of the therapeutic components and limitations of mutual support groups for family carers.
Article
To investigate the effect of a (minimally) guided peer support group (GPSG) for people with psychosis on social network, social support, self-efficacy, self-esteem, and quality of life, and to evaluate the intervention and its economic consequences. In a multi-center randomized controlled trial with 56 patients in the peer support group and 50 patients in the control condition, patients were assessed at baseline and after the last meeting at 8 months. The experimental group showed GPSG to have a positive effect on social network and social support compared with the control condition. In the experimental condition, high attenders favored over low attenders on increased social support, self-efficacy, and quality of life. Economic evaluation demonstrated groups to be without financial consequences. The GPSG-intervention was positively evaluated. Peer support groups are a useful intervention for people suffering from psychosis by improving their social network.
Psychiatric hospitalization of growers
  • M Kennedy
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