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College students disproportionately live with increased risk and burden of mental illness and suicide, yet most students do not access formal campus mental health services. One part of the solution to this problem has been the Bandana Project (BP), a peer-led mental health awareness and suicide prevention program. The program leverages the members’ vested interest in peer support, mental health promotion, and suicide prevention efforts to foster connectedness and offer alternative support to those who may be struggling. Education offered through the program orients members to relevant, evidence-based suicide prevention strategies and to various mental health resources. The program may contribute to reducing the burden of suicide and mental illness on campuses and help make college communities more supportive of students’ mental health. Further development, applications, and limitations of this program on the college campus setting – and beyond – are discussed.
This article explores the shift in mental health recovery from mere symptom management to a holistic approach via the CHIME framework. It delves into the author’s experience, beginning with the loss of his father, a war veteran with mental health struggles, at 16, thrusting him into the role of primary caregiver for his mother, who also battled mental health issues and eventually took her own life. These events spotlight the shortcomings of traditional mental health care and the urgent need for empathetic, multifaceted services. Advocating for co-creation in mental health services, the article outlines a transition towards a system that integrates recovery principles through stages from co-ideation to co-evaluation, emphasising holistic, person-centred care. It calls for a reimagined mental healthcare system that respects individual journeys and is rooted in co-creation, signalling a critical move towards systemic change.
The aims of this feasibility trial were to assess the acceptability and feasibility of peer-led recovery groups for people with psychosis in a low-resource South African setting, to assess the feasibility of trial methods, and to determine key parameters in preparation for a definitive trial.
Methods
The design was an individually randomised feasibility trial comparing recovery groups in addition to treatment as usual (TAU) with TAU alone. Ninety-two isiXhosa-speaking people with psychosis and forty-seven linked caregivers were recruited from primary care clinics and randomly allocated to trial arms in a 1:1 allocation ratio. TAU comprised anti-psychotic medication delivered in primary care. The intervention arm comprised six recovery groups including service users and caregivers. Two-hour recovery group sessions were delivered weekly in a 2-month auxiliary social worker (ASW)-led phase, then a 3-month peer-led phase. To explore acceptability and feasibility, a mixed methods process evaluation included 25 in-depth interviews and 2 focus group discussions at 5 months with service users, caregivers and implementers, and quantitative data collection including attendance and facilitator competence. To explore potential effectiveness, quantitative outcome data (functioning, relapse, unmet needs, personal recovery, stigma, health service use, medication adherence and caregiver burden) were collected at baseline, 2 months and 5 months post randomisation. Trial registration: PACTR202202482587686.
Results
Qualitative interviews revealed that recovery groups were broadly acceptable with most participants finding groups to be an enjoyable opportunity for social interaction, and joint problem-solving. Peer facilitation was a positive experience; however a minority of participants did not value expertise by lived experience to the same degree as expertise of professional facilitators. Attendance was moderate in the ASW-led phase (participants attended 59% sessions on average) and decreased in the peer-led phase (41% on average). Participants desired a greater focus on productive activities and financial security. Recovery groups appeared to positively impact on relapse. Relapse occurred in 1 (2.2%) of 46 participants in the recovery group arm compared to 8 (17.4%) of 46 participants in the control arm (risk difference -0.15 [95% CI: −0.26; −0.05]). Recovery groups also impacted on the number of days in the last month totally unable to work (mean 1.4 days recovery groups vs 7.7 days control; adjusted mean difference −6.3 [95%CI: −12.2; −0.3]). There were no effects on other outcomes.
Conclusion
Peer-led recovery groups for people with psychosis in South Africa are potentially acceptable, feasible and effective. A larger trial, incorporating amendments such as increased support for peer facilitators, is needed to demonstrate intervention effectiveness definitively.
Family members of people experiencing a first-episode psychosis (FEP) can experience high levels of carer burden, stigma, emotional challenges, and uncertainty. This indicates the need for support and psychoeducation. To address these needs during the COVID-19 pandemic, we developed a multidisciplinary, blended, telehealth intervention, incorporating psychoeducation and peer support, for family members of FEP service users: PERCEPTION (PsychoEducation for Relatives of people Currently Experiencing Psychosis using Telehealth, an In-person meeting, and ONline peer support). The aim of the study was to explore the acceptability of PERCEPTION for family members of people who have experienced an FEP.
Methods:
Ten semi-structured interviews were conducted online via Zoom and audio recorded. Maximum variation sampling was used to recruit a sample balanced across age, gender, relatives’ prior mental health service use experience, and participants’ relationship with the family member experiencing psychosis. Data were analysed by hand using reflexive thematic analysis.
Results:
Four themes were produced: ‘Developing confidence in understanding and responding to psychosis’; ‘Navigating the small challenges of a broadly acceptable and desirable intervention’; ‘Timely support enriches the intervention’s meaning’; and ‘Dealing with the realities of carer burden’.
Conclusions:
Broadly speaking, PERCEPTION was experienced as acceptable, with the convenient, safe, and supportive environment, and challenges in engagement being highlighted by participants. Data point to a gap in service provision for long-term self-care support for relatives to reduce carer burden. Providing both in-person and online interventions, depending on individuals’ preference and needs, may help remove barriers for family members accessing help.
Chapter 5 builds your understanding of the thousands of students who are adding English to their language repertoire and offers many excellent teaching strategies. The chapter does not attempt to provide detailed professional development in EAL/D pedagogy but is more concerned with how harnessing English language learning can connect with wellbeing and achievement. The two overarching goals for this chapter are that you develop empathy with English learners’ perspectives, and that you acquire a wide variety of strategies to support English learning, across the curriculum, with high expectations for all students. Chapters 3 and 4 have stressed that it is important for students to maintain and develop the languages they bring to school, as well as to add English proficiency. Strong English proficiency enables participation in all areas of Australian society and economy, and participation in global communities where English is a shared language.
Carers of people who are involuntarily admitted to hospital report feeling isolated and unsupported by services. The Independent Review of the Mental Health Act (MHA) recommended that carers be supported. However, no research has directly explored what type of support carers would find most helpful when a relative/friend is involuntary admitted.
Aims
To explore carers’ experiences and views around the support they want to receive when their relative/friend is involuntarily admitted under the MHA.
Method
A total of 22 one-to-one interviews with carers were conducted online at three sites across England. Audio recordings of the interviews were transcribed, and data were analysed with thematic analysis.
Results
Four main themes were identified: (a) heterogeneity in the current support for carers, (b) information about mental health and mental health services, (c) continuous support, and (d) peer support and guidance. Carers reported receiving support from professionals, peers and relatives, but this was unstructured, and the extent of support varied across carers. Carers reported wanting more information about mental health services, and for this information to be consistent. Carers also reported wanting emotional support from a single, continuous person, helping them establish a more personal and sincere connection. Peers were also identified as important in the provision of carer support, allowing carers to feel reassured and understood in their experience.
Conclusions
The support received by carers is currently unstructured. To meet the MHA review recommendations, carers of patients who are involuntarily admitted should be allocated a named contact person, ideally with lived experience, to offer information and personal continuity of support.
Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial support/palliative care, increasing their risk for negative psychosocial outcomes. Online health communities (OHCs) have been recommended for AYAs as part of palliative care support programs; however, we lack research investigating palliative care programs targeting AYAs’ psychosocial support needs that are delivered virtually and able to engage with patients both during and beyond inpatient admissions. Streetlight is a palliative care program designed for chronically ill AYAs. Developed as a complementary component that extends beyond the hospital setting, Streetlight Gaming and Online Team (SGOT) is an OHC aimed at facilitating social support to influence psychosocial outcomes. We investigated the existence and enactment of social support among chronically ill AYAs using SGOT and compared this to existing online social support categories to determine which support types are present within SGOT.
Methods
This was a qualitative phenomenological study. We performed deductive thematic analysis based on existing online social support categories. Nine semi-structured interviews were conducted with SGOT participants.
Results
Social companionship/belonging, esteem/emotional, and informational support were most prevalent within SGOT. Thirteen subthemes emerged representing how social support impacted AYAs’ psychosocial wellbeing. Notably, coping with/managing illness, sense of community and normalcy, recommendations and advice, and shared interests unrelated to illnesses were subthemes that resonated with AYAs and added value to their experiences.
Significance of results
SGOT is an impactful OHC used to meet AYAs’ social support needs. What makes SGOT especially unique is its virtual delivery, wherein AYAs can conveniently maintain beneficial relationships with other chronically ill same-aged peers. AYAs need spaces where they can feel normal and access continuous support, both within and beyond inpatient admissions. This study enhances our understanding of online AYA psychosocial support programs. Findings can be used by healthcare professionals to implement similar palliative care and psychosocial support programs.
With targeted therapies, people are surviving longer with advanced lung cancer and engaging in online lung cancer support communities. While these groups provide a sense of community, witnessing the death of peers can lead to emotional distress. This qualitative study aims to (1) explore the experience of witnessing death in online cancer support groups; (2) identify factors that contribute to the emotional struggles of witnessing the death of peers; and (3) identify strategies/options for dealing with losses in the cancer community.
Methods
We conducted a cross-sectional analysis of qualitative interviews exploring existential concerns with participants (n = 25) from oncogene-specific online lung cancer support groups. The principal investigator conducted study interviews between August 2018 and March 2019 where participants were asked about their cancer experiences and existential concerns. We used thematic analysis and NVIVO 11 software to examine and store the de-identified interview data.
Results
Participants indicated that they had often witnessed their peers die and felt the pain of the loss. Factors that played a part in their struggle with witnessing others’ death included the closeness of the relationship with the person, the age of the person who died, seeing oneself in the experience of the other dying, disparities in care, and losing touch in the final stages. Participants used varied coping strategies such as celebrating the life of the individual who died, engaging in advocacy efforts, not focusing on the loss, participating in therapy, and bringing self-preserving thoughts.
Significance of results
Our study highlights the importance of addressing existential fears in online lung cancer support groups and incorporating conversations about death in spaces that deal with cancer.
Edited by
Richard Williams, University of South Wales,Verity Kemp, Independent Health Emergency Planning Consultant,Keith Porter, University of Birmingham,Tim Healing, Worshipful Society of Apothecaries of London,John Drury, University of Sussex
This chapter is a case study that describes the experience of establishing a peer support programme in a critical care unit in an NHS hospital in the UK. The case study is set within a description of what peer support is and ideas about the underpinning principles for a peer support programme.
Higher education institutions (HEIs) are seeking effective ways to address the rising demand for student mental health services. Peer support is widely considered a viable option to increase service capacity; however, there are no agreed definitions of peer support, making it difficult to establish its impact on student mental health and well-being.
Aims
This systematic review aims to better understand and evaluate peer support in HEIs.
Method
Five databases, OpenGrey and Grey Matters were searched in May 2021. Included studies were quantitative, longitudinal (with and without a control) or cross-sectional with a control. The vote-counting method was used for synthesis. The risk of bias was assessed with the National Institutes of Health Quality Assessment Tool.
Results
Three types of peer support were represented in 28 papers: peer-led support groups, peer mentoring and peer learning. Peer learning and peer mentoring had more positive, significant results reported for the outcomes of anxiety and stress. Peer-led support groups were the only type targeting students with mental health difficulties.
Conclusions
The heterogeneity of measures and outcomes prevents firm conclusions on the effectiveness of peer support for mental health and well-being. Most studies were rated ‘poor’ or ‘fair’ in their risk of bias. There is not a solid evidence base for the effectiveness of peer support. Nonetheless, HEIs can use the terminology developed in this review for shared discussions that guide more robust research and evaluation of peer support as an intervention.
There is no disputing the current established global consensus that people with lived experience of a mental health condition (“people with lived experience”) play an integral role in influencing policy and processes in global mental health. Specifically, the role they hold as agents of change through which they can lead and co-lead projects on mental health, alongside a multidisciplinary team, as recommended in the findings of the report of Lancet Commission on ending stigma and discrimination (Thornicroft et al. [2022], “The Lancet Commission on ending stigma and discrimination in mental health”, Lancet, 400, 1438–1480). Immense value is associated with their unique expertise not learned through theoretical concept but based on real-life experience. Appreciating their involvement in processes is a human right, supported by international human rights instruments such as the United Nations Convention on the Rights of Persons with Psychosocial Disabilities (2006). However, there remains an expectation that people with lived experience are expected to be involved in processes and service delivery without receiving remuneration for their expertise. This article will provide the basis for which processes must follow the principle of equity; that lived experience expertise ought to be equally compensated for based on equal pay for equal work. In closing, it will provide a recommendation for stakeholders on how to improve upon effective engagement with people with lived experience, leading to meaningful and authentic contributions.
Non-Western literature on the core competencies of mental health peer supporters remains limited. Therefore, we used a three-round Delphi study with peer supporters, service users (i.e. someone using peer support services) and mental health professionals to develop a core competency framework for peer supporters in the Chinese context.
Results
The final framework included 35 core competencies, the conceptual origins of which were local (14.3%), Western (20%) and both local and Western (65.7%). They were grouped into five categories in ascending peer supporter role specificity: (1) self-care and self-development, (2) general work ethics, (3) work with others, (4) work with service users and (5) peer support knowledge.
Clinical implications
A culturally valid mental health peer support competency framework can minimise role confusion and refine training and practice guidelines. In a Chinese context, peer supporters were valued as generic support companions, whereas functions highlighted in the West, such as role modelling, were perceived as less critical.
Peer support interventions for dietary change may offer cost-effective alternatives to interventions led by health professionals. This process evaluation of a trial to encourage the adoption and maintenance of a Mediterranean diet in a Northern European population at high CVD risk (TEAM-MED) aimed to investigate the feasibility of implementing a group-based peer support intervention for dietary change, positive elements of the intervention and aspects that could be improved. Data on training and support for the peer supporters; intervention fidelity and acceptability; acceptability of data collection processes for the trial and reasons for withdrawal from the trial were considered. Data were collected from observations, questionnaires and interviews, with both peer supporters and trial participants. Peer supporters were recruited and trained to result in successful implementation of the intervention; all intended sessions were run, with the majority of elements included. Peer supporters were complimentary of the training, and positive comments from participants centred around the peer supporters, the intervention materials and the supportive nature of the group sessions. Attendance at the group sessions, however, waned over the intervention, with suggested effects on intervention engagement, enthusiasm and group cohesion. Reduced attendance was reportedly a result of meeting (in)frequency and organisational concerns, but increased social activities and group-based activities may also increase engagement, group cohesion and attendance. The peer support intervention was successfully implemented and tested, but improvements can be suggested and may enhance the successful nature of these types of interventions. Some consideration of personal preferences may also improve outcomes.
This chapter is a fictional account of several people talking about aspects of their lives that are impacted by variations in sex development at a support group meeting. In their exchanges about past, present and future medical encounters, the author draws out both the opportunities and the dilemmas presented by medicine. Through the characterizations, the author also teases out some of the most pertinent psychological themes in the field, such as how to decide about “normalizing” surgery for a child and how to talk about bodily differences in relationships. These themes are centralized in Chapters 9–14 and explored in the literature summaries and practice vignettes therein.
Chapter 6 summarizes the changes to medical care in recent years. There is now a greater recognition that the projected social and psychological challenges of genital variations cannot be fixed by surgery. The first international consensus statement on intersex was published in 2006. The statement makes a number of recommendations to improve care. Controversially however, a new term disorders of sex development (and, later, differences in sex development, or DSD) was introduced to replace intersex and hermaphroditism. Biotechnological developments have been advancing rapidly. More has been learned about “normal” and “abnormal” sex development. However, parents still struggle to talk to children about their bodily variations, young people still worry about getting into relationships, childhood genital surgery is still considered the only way out of stigmatization, psychological expertise is still a low priority in specialist services and the huge potential of peer support is not fully realized.
This chapter provides an overview of the methodological challenges in researching social inclusion amongst people with mental health conditions and gives examples of interventions that have been shown to be effective in addressing social exclusion including pre-school parenting programmes, early intervention, peer support, recovery colleges, self-care, self-management, and self-directed care. As with all clinical practice, the starting point is the establishment of a therapeutic relationship that encompasses empathy, understanding, hope, and a willingness to help, along with a recovery orientation encompassing collaborative and strengths-based approaches. Much of this does not require a major reorganisation of services, but rather a refocusing and reprioritisation of existing tools and clinical skills, alongside commitment by mental health organisations to ensure their structures facilitate service-user involvement in the planning and delivery of services
How to talk about variations in sex development is a major theme for impacted individuals and families. This is the topic of Chapter 12. The author summarizes the research literature with caretakers and with adults about the difficulties of disclosure. Considerable criticism has been levied at health professionals for failing to role model affirming communication. For sure there are gaps in health professionals’ talk, but the biggest contributor to the difficulties is to do with the widespread misunderstanding about the biological variations. Psychological care providers are not there to put a cheerful gloss over clients’ negative expressions. However, they can be part of the favorable social condition in which a wider range of meanings about bodily differences are negotiated. In the practice vignette, the author highlights how tentative and uncertain the enabling process is, where a negative view of sex variations is still widely endorsed in the social context.
In a gendered world, doctors and caretakers took for granted that making atypical bodies more typical was a humane way out of a difficult situation for child and family. Had the professionals carried out proper research, they would have learned from their young patients that the approach was physically and psychologically risky. But research on the long-term effects was not carried out, certainly not from the patients’ perspective. There was also no comparison group made up of people growing up with unaltered genital variations. Research with adults is the topic of Chapter 4 of this book. Since the 1990s, a number of outcome studies with adults have identified many problems of childhood surgery, such as multiple operations, scarring, shrinkage, sensitivity loss, unusual genital appearance and sexual difficulties.
Chapter 8 begins by pointing out the current lack of collective clarity about the role of psychological care providers (PCPs) and suggests that researchers and practitioners make collective effort to develop the role of PCPs in sex development in future. Meanwhile it outlines the psychological consultation process that is generic and familiar to most PCPs. The author provides an initial assessment template and summarizes the popular psychotherapeutic interventions. The template is visible in several of the practice vignettes in the ensuing chapters of the book. The author ends the chapter by arguing that the tertiary environment is set up for diagnostic workup and treatment and unsuitable for the kind of ongoing psychosocial input that is needed by individuals and families living in their communities. The author makes a case for PCPs in DSD centers to collaborate with peer support workers to enable nonspecialist providers in the community to contribute to ongoing support for individuals and families.
Chapter 11 of the book reviews potential psychological contributions in the highly charged process of assigning legal gender to a newborn with genital variations. Although a number of psychological theories exist for understanding gender development, it is the brain gender framework that has been singularly privileged in intersex and DSD medicine. However, the decades of research cannot contribute to the certainty professionals and caretakers seek. Psychological care providers (PCPs) have other frameworks to draw from in order to work ethically and pragmatically with families. In the practice vignette, the author envisions how a highly skilled PCP in a high-functioning DSD team could work substantially to help caretakers to cope with uncertainty and minimize the need for psychosocially motivated medical interventions. In the vignette, the psychological care path is in position before medical investigations begin. It remains highly active long after the medical and legal processes are completed. Although the vignette is built around a child diagnosed with 17β-hydroxysteroid dehydrogenase-3 deficiency, the care principles are relevant to legal binary gender assignment for children born with a range of sex development variations.