Developing peer-led recovery groups (PRIZE) for people with psychosis and their caregivers in a low resource South African setting

doi:10.21203/rs.3.rs-5217975/v1

Aim

In South Africa and other low- and middle-income countries (LMIC), personal recovery for people with a severe mental health condition (SMHC) is hampered by lack of community-based support. This paper describes the development of a non-specialist and peer-facilitated recovery intervention (PRIZE) intended as an adjunct to traditional psychiatric care.

Methods

Inputs into the adaptation process included evidence review, followed by 43 in-depth interviews exploring perspectives and desired recovery outcomes of people with lived experience and caregivers, and 15 interviews with service providers. These were analysed thematically and guided development of a theory of change. District stakeholder mapping, engagement and feedback was undertaken to explore potential acceptability and feasibility of recovery groups facilitated by trained peers (people with lived experience of serious mental health problems as service users or carers).

Results

Formative work identified the expressed recovery needs and led to a theory of change based on building self-esteem, reducing social isolation, and improving responses to financial instability, substance use and medication difficulties. For caregivers, the intervention was based on sharing of experiences and coping strategies. The intervention developed incorporated two phases of mutual support groups comprising service users with SMHC and family caregivers. An initial auxiliary social worker-led phase (9 weekly sessions) was followed by a supported peer-led phase (12 weekly sessions). The initial didactic psychosocial rehabilitation intervention evolved into an intervention designed to support individuals’ recovery journeys, grounded in recovery-focused core values of building hope, opportunity and control, and in which groups harnessed their own problem-solving strengths. This required training to realign the practice of auxiliary social workers accustomed to a traditional helping role towards a more enabling and empowering role. Particular attention was given to processes for supportive supervision and mentorship for auxiliary social workers and peer facilitators.

Conclusion

The involvement of district stakeholders and potential participants resulted in a tailored, context-specific intervention with potential to contribute to evidence for community-based, task-shared, peer-led and recovery-focused interventions in LMIC.

Psychology

recovery

peer

severe mental health condition

caregiver

service user

social worker

non-specialist

Globally, high levels of unmet psychosocial needs, social and economic hardships, and violations of human rights are experienced by people with severe mental health conditions (SMHC), and by association, their family caregivers (Lund, De Silva et al. 2011, Brooke-Sumner, Lund et al. 2014, Patel 2015, Asher, Fekadu et al. 2017, Patel, Saxena et al. 2018). Traditionally, mental health services have focused on symptom reduction, however there is increasing recognition that for every individual, recovery entails far more than this. It is a personal journey of rebuilding confidence, identity, relationships and life goals; living a fulfilling and meaningful life even when symptoms continue to be experienced (Anthony 1993, Leamy, Bird et al. 2018, Gamieldien, Galvaan et al. 2021). In the South African context, personal recovery also encompasses socioeconomic, cultural, and spiritual factors (Gamieldien, Galvaan et al. 2023), and families serve as the primary source of community care. Little psychosocial support is available for individuals and families, compromising their recovery. While hospital-based care and psychotropic medications are accessible to some degree, including through psychiatric nurse-led primary care, there is little evidence for, and resource allocation to, community-based psychosocial support (Brooke-Sumner, Lund et al. 2016, Docrat, Besada et al. 2019). This leads to a large revolving door phenomenon with an estimated one quarter of psychiatric in-patients readmitted within three months of discharge from hospital (Docrat, Besada et al. 2019).

Task-shared provision of community-based psychosocial support by non-specialists, with upward referral when needed, is a feasible delivery strategy in low resource settings and may be more acceptable for many (Patel, Farooq et al. 2007, Asher, Fekadu et al. 2018, Patel, Saxena et al. 2018, Whitfield, Owens et al. 2023). There is growing evidence for effectiveness of task-shared, community-based psychosocial approaches supporting people with SMHC from low- and middle-income countries (LMIC) (Asher, Patel et al. 2017) including India (Chatterjee, Naik et al. 2014), Ethiopia (Asher, Fekadu et al. 2015, Asher, De Silva et al. 2016, Asher, Birhane et al. 2022, Hanlon, Medhin et al. 2022) and Chile (Mascayano, Alvarado et al. 2019, Mascayano, Alvarado et al. 2022). Peer support is a recovery-focused approach that harnesses the lived experience of people with SMHC, to provide meaningful support in a way that is different from that offered by health professionals. It provides a unique form of care as it involves people with personal experience offering mutual support, reciprocal problem solving, role modelling of recovery and delivering interventions to encourage social inclusion and self-advocacy (World Health Organisation 2021). This approach is gaining traction globally (Stratford, Halpin et al. 2019, Ibrahim and Thompson 2020), including group-based approaches (Lyons, Cooper et al. 2021). Evidence from high-income countries (HIC) demonstrates effectiveness of peer support in promoting personal recovery (Cabassa, Camacho et al. 2017, Fan, Ma et al. 2018, Tyler, Wright et al. 2019, Lyons, Cooper et al. 2021). Recovery-focused approaches that empower, enable and educate people to take more control over their condition may be feasible and acceptable in LMIC. Some LMIC studies are investigating the potential and feasibility of one-on-one approaches of peer support (Fan, Ma et al. 2018, De Wet, Parker et al. 2019, Fan, Ma et al. 2019, Puschner, Repper et al. 2019, Ryan, Kamuhiirwa et al. 2019, Moran, Kalha et al. 2020, Mascayano, Alvarado et al. 2022, Nixdorf, Nugent et al. 2022) but not group modalities. Previous studies on provision of psychosocial support for people with SMHC in South Africa (Brooke-Sumner, Petersen et al. 2015, Petersen, Fairall et al. 2016, Asher, Patel et al. 2017, Brooke-Sumner, Lund et al. 2017, Brooke-Sumner, Selohilwe et al. 2018) were not focused on personal recovery. There remains a research gap in terms of evidence for recovery-focused interventions appropriate for the South African context.

This paper describes the intervention development component of the Peer-led Recovery Groups for People with Psychosis in South Africa (PRIZE) study. The overall aim of PRIZE was to address the gap in evidence for personal recovery-focused interventions in South Africa by conducting a randomized feasibility trial of group peer support (Asher, Rapiya et al. 2023). Our goal was to create an innovative, culturally appropriate and empowering approach to support recovery of people with SMHC, in a setting where mental health resources are constrained. Objectives of the development component were therefore to describe perspectives, experiences and needs of potential participants, leading to development of a theory of change and intervention; and to engage and collaborate with stakeholders in the study district to develop an intervention and implementation plan feasible for the particular context. PRIZE builds on previous work by our group, which developed and piloted psychosocial rehabilitation groups (Brooke-Sumner, Lund et al. 2017, Brooke-Sumner, Selohilwe et al. 2018). We describe the development of the PRIZE intervention model which occurred while the COVID-19 pandemic was ongoing. Implications of COVID-19 for service users and caregivers in the study district are described separately (Brooke-Sumner, Rapiya et al. 2024).

2.1.1.Setting

The study was located in the Nelson Mandela Bay Metropolitan district, Eastern Cape Province. The district had eight secondary level hospitals and one specialist psychiatric hospital. Like other parts of South Africa in-patient care was limited by unavailability of beds for people with SMHC requiring admission. There were 41 primary health care (PHC) clinics, eight of which provided mental health services delivered by psychiatric nurses, focusing on symptom reduction and not sustaining of wellbeing post-discharge. The focus of PHC mental health care was thus largely the provision of repeat psychotropic medication, which was free but not always available. PHC clinics provided the point of access for contact for participants for this study. These clinics serve a predominantly isiXhosa-speaking population. There was no widely implemented community-based provision of psychosocial support for people with SMHC through government services. Ethical permission was granted for the study by the ethics committees of the South African Medical Research Council (EC007-4/2019) and University of Nottingham (365–1907).

2.1.2 Intervention Development Overview

Intervention development involved district stakeholders and potential participants based on guidance for developing complex interventions (MRC UK) (Skivington, Matthews et al. 2021). We thus developed the PRIZE intervention through four steps (Fig. 1): (1) Considering context through consultation with stakeholders and scoping work, including evidence review; (2) developing a programme theory (theory of change), and initial intervention; (3) Engaging district stakeholders for feedback on the intervention and to identify uncertainties and barriers; (4) Refining the intervention through incorporating stakeholder perspectives and conducting research team intervention development workshops, followed by developing intervention materials and an implementation plan. We used the Guidance for Reporting Intervention Development (GUIDED) checklist (Duncan and O'Cathain 2020) to report the intervention development process.

Figure 1 Intervention development process for PRIZE

2.1.3 Step 1 Considering context through consultation and scoping work

Key objectives of this phase were to develop contextual understanding of the study district, build support amongst stakeholders, and identify existing materials and evidence. Our previous work identified lack of intersectoral working as a barrier to community-based psychosocial support (Brooke-Sumner, Lund et al. 2016). We therefore first conducted stakeholder mapping to identify intersectoral players. In July 2019 we conducted an initial 2-hour stakeholder meeting bringing together eight district representatives from the Department of Social Development and Department of Health, as well as Indlela Mental Health (IMH NGO; a community-based organisation providing supportive services for people with intellectual disability). Objectives of the meeting were to orient stakeholders to the aims of PRIZE and get initial feedback on a proposed intervention, namely a facilitated group programme. We also sought at this stage to identify candidate intervention workers within the existing health and social care system. We then held introductory meetings with Facility Managers, Operational Managers, Mental Health Nurses and Psychologists (where available) for each of the eight identified PHC clinics to orient them to the study and gain approval to work with people accessing care. Consultation with service users, caregivers and service providers was conducted in a dedicated work package described in the next step. We created a scoping spreadsheet listing key parameters for intervention design, guided by the TIDieR checklist (Cotterill, Knowles et al. 2018) but tailored to capture specific aspects relevant to our proposed group intervention. We then conducted a desk review of literature and existing materials on recovery support and peer-led approaches, including materials from ImROC (UK-based non-governmental organisation, Implementing Recovery Through Organisational Change) (Repper 2019), Using Peer Support In Developing Empowering Mental Health Services (UPSIDES) (Germany, UK, Uganda, Tanzania, Israel, India) (Mahlke 2019), the PRIME psychosocial rehabilitation pilot study (Brooke-Sumner 2014) and studies from China (Fan, Ma et al. 2018, Fan, Ma et al. 2019). We consulted with management of the Western Cape Mental Health Society a non-governmental organisation which has run support groups and peer counselling for people with SMHC, one of the few examples in South Africa of provision of this type of care. We collated information from the various sources onto the spreadsheet, providing a set of options for each aspect of the intervention. We then recorded our initial proposal for the intervention in the TIDieR template (Supplementary File 1) (Cotterill, Knowles et al. 2018).

2.1.4 Step 2 Developing a programme theory (theory of change) and initial intervention

Objectives of this step were to understand desired recovery processes and outcomes of people with SMHC and caregivers and use these to develop a theory of change. We also explored acceptability of the proposed group-based and peer-led format. Between April and June 2020, we conducted in-depth interviews (IDIs) following gaining voluntary informed consent with people with SMHC (defined for the study as diagnosis of schizophrenia) using health services (n = 22), caregivers (n = 21), and service providers, including social workers, auxiliary social workers (ASW) and mental health nurses (n = 15). Inclusion criteria for service users and caregivers were (i) over the age of 18 years, (ii) isiXhosa speaking, and (iii) clinical diagnosis of schizophrenia, or a caregiver of a person with the diagnosis. Topic guides (Supplementary File 2) included open-ended questions such as ‘What would recovery from your condition mean for you?’ Interviews were conducted by the PRIZE Project Coordinator (BR) and Research Assistant (HD) in the participants’ first language (isiXhosa). Audio recordings were translated and transcribed verbatim by BR and HD. NVivo 12 was used to store data and conduct thematic analysis (Byrne 2022). Three members of the research team (LA, CBS, BR) used findings from the qualitative data to identify desired support for recovery and personal goals or recovery outcomes from perspectives of service users and caregivers to develop the theory of change. Planned theory of change workshops with stakeholders were not possible due to COVID-19 restrictions. We therefore used iterative discussions with the research team to construct a theory of change map comprising these desired outcomes, along with pre-conditions and pathways to achieve these. An initial intervention based on the outcomes outlined in the theory of change map was developed. The proposed intervention was further refined in two one-day workshops conducted virtually in November 2020. Participants were the full PRIZE research team, who together have extensive experience of developing and implementing task-shared approaches in South Africa and other low-resource African settings, as well as implementing peer-led approaches in HIC. The research team included psychologists, a psychiatrist, a public health physician, a public mental health researcher, and an expert by experience with expertise in participatory action research. Lead investigators presented the findings from Steps 1 and 2, along with the initial intervention model and theory of change, structured according to the TIDieR template (what, how, who, when, where). Through interactive discussions, outstanding design, feasibility and acceptability issues were resolved, keeping in mind the fundamental aim to support recovery and to realign the intervention from a didactic rehabilitation approach to an intervention focused on recognizing and building participants existing strengths in working towards recovery. The TIDieR framework was updated to record and reflect the intervention components from these steps (Supplementary File 1).

2.1.5 Step 3 Engaging district stakeholders to identify key uncertainties and barriers

The objective of this step was to refine the intervention based on feedback from service providers ‘on the ground’. In March and April 2021 we met with small groups of key stakeholders from each of the eight PHC facilities and the IMH NGO. Twenty-seven participants were included (psychologists n = 4), (facility managers n = 8), (psychiatric nurses n = 8), (service user representative n = 1), (auxiliary social workers (ASWs) and social workers n = 6). CBS and BR presented the proposed intervention and requested feedback on uncertainties and barriers. Based on feedback, adjustments were made to the intervention, and in the TIDieR template (Supplementary File 1 ‘Modifications and Rationale’).

2.1.6 Step 4 Refining the intervention, developing materials and implementation plan

This step included decisions around content, format and delivery based on the previous steps, including plans for training and supportive supervision and development of an implementation plan. Materials were then developed to support delivery. Separate training and guidance manuals were produced for non-specialist interventionists and peer facilitators. Content was adapted from PRIME psychosocial rehabilitation intervention materials and new content developed as needed. Based on preferences ascertained in Step 2, written manuals for non-specialist interventionists were prepared in English and peer training materials were developed in English and isiXhosa. All materials for service users and caregivers, including peer facilitators, were first developed in English, before being translated into isiXhosa by BR (first language speaker). These were then back-translated to English by an independent first language speaker to ensure semantic equivalence.

3.1.1. Overview

In initial consultations with stakeholders, there was broad endorsement for facilitation of group sessions by people with lived experience but it became clear that auxiliary social workers (ASWs) from IMH NGO were the only community-based workers available to take on the supporting role. The intervention was thus developed with this cadre in mind. Indlela Mental Health (IMH NGO) ASWs were first language isiXhosa speakers and had completed a 1-year accredited post-secondary diploma. The final 5-month PRIZE intervention was for recovery groups for service users and caregivers consisting of two phases: a 2-month ASW-led phase (Phase 1) followed by a 3-month supported peer-led phase (Phase 2) (Fig. 2). Drawing on results from each Step in the methods, we describe below how we arrived at each aspect of the intervention and implementation plan. The contribution of each step to the intervention development process is summarized in Table 1.

Figure 2 Final PRIZE intervention model

Table 1

Summary of methods, findings and intervention development
Method	Findings	Contribution to intervention development
Step 1: Considering context through scoping work and consultation	Published peer-facilitated interventions for recovery	Inclusion of content on psychoeducation, social skills, physical health promotion
	ImROC experiences of groups focused on strengths of members and building autonomy	Reorientation to recovery focus, with core values of hope, opportunity, control
	ASWs only cadre available for the work	Intervention developed for delivery by non-specialists with social work diploma
	Need for meeting location within walking distance Limited infrastructure for meeting venues	Securing venue as part of ASW role
Step 2: Developing a programme theory (Qualitative data) Step 2: Developing the initial intervention (intervention development workshops)	Barriers to recovery: Low self esteem	Inclusion of strategies to build confidence, coping, sense of belonging
	Lack of social inclusion	Inclusion of informal time for socialising
	Financial instability	Inclusion of practical skills for budgeting, avoiding debt
	Substance use and medication problems	Inclusion of space for sharing experiences and problem solving
	Caregivers’ needs: Stress management, gaining support	Inclusion of caregiver check-in and sharing experiences
	Acceptability – preference for health worker	Clarify role of peer facilitator as expert by lived experience
	Preference for mixed service user caregiver groups	Session content developed for caregivers and service users together, separate check-in
	Service provider concerns about peer confidence and skills to manage group	Peer facilitator training on group facilitation, communication skills
	Service providers concerns on sustaining group participation	Attendance lists, provision of refreshments (Phase 1), certificates of participation
	Promote inclusivity	Capacity to consent the basis for inclusion; no exclusion if no caregiver present
	Group problem solving to build ownership, self-determination	Reduction in formal content, facilitation of process of group problem solving
	Need for apprenticeship model	ASW training 3 days prior to groups 4 days interspersed between group sessions Peer facilitators 4 half day sessions between group meetings
	Need for supportive supervision	Adapted GroupACT
Step 3: Engaging district stakeholders to identify key uncertainties and barriers	Dominance of caregivers, conflicts over disability grants	Both service users and caregivers as peer facilitators Inclusion of content on communication, relationships, boundaries
	Level of engagement needed prior to programme	ASWs 2 home visits prior to group formation
	Encouraging participation	WhatsApp/text/phone call reminders weekly before group

3.1.2. Step 1 Considering context through scoping work and consultation

Existing literature indicated that group support for people with SMHC has been implemented using service user only groups (Castelein, Bruggeman et al. 2008, Fan, Ma et al. 2018, Bjørkedal, Bejerholm et al. 2020) or mixed groups of service users and caregivers (Whitley, Shepherd et al. 2019, Bjørkedal, Bejerholm et al. 2020, Hayes, Camacho et al. 2023). Session content has included a range of knowledge and skills-building areas, including life skills, social skills, knowledge of mental disorders, and support for a healthy lifestyle. Typical meeting durations from previous comparable programmes ranged from 40–90 minutes (Castelein, Bruggeman et al. 2008, Fan, Ma et al. 2018, Fan, Ma et al. 2019). A target group size of 10–12 participants was set, on account of successful experiences from Recovery Colleges and other peer support groups for people with SMHC globally (Castelein, Bruggeman et al. 2008, Fan, Ma et al. 2018, Fan, Ma et al. 2019, Hayes, Hunter-Brown et al. 2023).

Through initial consultation with stakeholders, we established that the Departments of Health and Social Development, and IMH NGO perceived a service gap in community-based recovery support in the district, and broadly endorsed the PRIZE objective to address this shortfall. The primary role of IMH NGO was reported to be supporting access to government financial support (disability grants) and resolving family conflicts relating to grants, rather than providing broader psychosocial support. The initial consultation revealed there was no existing service user advocacy organization or network in the district, from which a cohort of peer facilitators could be identified. It also became apparent that there was limited physical infrastructure for holding community-based group meetings in the study district. The Western Cape Mental Health Society suggested the importance of avoiding PHC clinics as a venue, due to concerns about stigma, and clinics were in any case confirmed as not having space for group meetings by Department of Health stakeholders.

3.1.3 Step 2 Developing a programme theory (theory of change) and initial intervention

Sociodemographic characteristics of participants are given in Table 2. Five related priority areas for recovery support emerged for service users: self-esteem, social inclusion, financial stability, substance use and medication problems. For caregivers, priority areas were for strategies for managing stress related to the caregiver role and to provide an opportunity for gaining support.

Table 2 Sociodemographic characteristics of interview participants in Step 2

	Service users (n=22)	%	Caregivers (n=21)	%	Service providers	%
	Service users (n=22)	%	Caregivers (n=21)	%	(n= 15)	%
Male	16	73%	6	29%	4	27%
Female	6	27%	15	71%	11	73%
Age range
25 years or younger	2	9%	0	0	0	0
26–35 years	6	27%	3	14%	0	0
36-50 years	10	45%	8	38%	5	33%
51 years or older	4	19%	10	48%	10	67%
Education level
Some primary	7	35%	5	23%	0	0
Some secondary	9	48%	15	68%	0	0
Some further	3	17%	2	9%	10	100
Employment status
Employed	2	9%	5	24%	10	100
Unemployed	20	91%	16	76%	0	0

Service users’ desired recovery outcomes and processes

Self-esteem and social inclusion

Most service users described life experiences that eroded confidence, self-esteem and authority; these included a lack of respectful treatment by family and community. This background limited their ability to envision what recovery could feel like. The resulting low self-esteem was compounded by inadequacy in their ability to contribute financially to the family due to being unemployed. Service users generally expressed that their confidence and self-worth increased when they felt they received respect from family members and others. A minority highlighted that despite negative experiences they were able to see themselves in a positive light and have hope for the future; these feelings were fundamental to their thinking around recovery.

‘You are not sure of yourself because you are no longer you... I don’t know even the [things] that I used to know. I am just a person who doesn’t know anything’ Service user participant 24, male

Some service users identified their experiences of belittlement as a cause of their social isolation. This was confirmed by caregivers who also noted that medication side effects, particularly tiredness, and ongoing symptoms were reasons for isolation. Some caregivers also acknowledged that they discouraged their family member from going out because of fears for their safety due to the unsafe environment (crime, violence). Service users’ recovery, then, was linked to reducing social isolation which they felt would be rooted in experiencing positive treatment by others and, crucially, being able to ‘feel like I am like other people’ (Service user participant 15, female).

‘With this illness of mine it seems as if I give people strange looks and it’s as if they know… … They hide it when they see me…I am not like other people and that makes me very shy’. Service user participant 40

Financial stability

Financial instability, getting into debt, and the impermanence of government disability grants were highlighted by the majority of service users as stresses that impeded recovery. Family caregivers in some households reportedly had full control of all money. Reactions to this status quo varied, with some service users feeling accepting of this situation, and others desiring more autonomy. This indicated that financial security, including exercising control over this, if desired, was a fundamental component of recovery.

‘I create debts that are unnecessary. I would have to pay those debts and the money [disability grant] gets finished without me even buying food at home. It just disappears in the air as if I am bewitched’. Service user participant 21, male

Substance use and medication difficulties

Substance use was described as a barrier to recovery with heavy drinking linked to stopping use of medication. While some service users were conflicted, expressing that alcohol enabled them to socialize and relax, they also noted a connection between heavy alcohol use and becoming more unwell. Reducing substance use therefore emerged as an important aspect of recovery for some service users.

‘Sometimes I am bored and some other times people in the community seem to be having fun and I also want to be in the same mood as them…and it also helps to take away the shyness’. Service user participant 40, male

Medication problems were identified by service users and caregivers, including lethargy, physical pain and nausea. While most service users and caregivers indicated their awareness of the value of medication, side effects discouraged some from taking medication. This indicated that ways gaining control over treatment issues, including coping with side effects, would be an aspect of recovery.

‘The last time I had the injection I felt dizzy and had a headache. I was not fine at home…sometimes it will make me feel dizzy, but they say I cannot stop it because I have to use it’. Service user participant 14, female

Caregivers’ desired recovery outcomes and processes

Some caregivers had carved a path to gaining acceptance, meaning and fulfillment from their role and expressed this as a positive aspect of their experience which could be harnessed together with their family member on their recovery journey. In contrast, many emphasized the difficulty of having sole responsibility for cooking, cleaning, and helping their family member with personal hygiene and accessing health services. Others expressed the sense of missing out on work opportunities, education, relationships, and time for relaxation.

‘The person you are staying with does things that get to your last nerve… and sometimes it’s difficult, you realize it later on that the person is doing that because of their disorder. Sometimes I’m crying because it is not easy’. Caregiver participant 35, female

Caregivers described multiple sources of stress. These included (i) feeling judged as not fulfilling their role when their family member had unusual behaviour; (ii) anxiety about ‘reports’ of what has happened if their family member was becoming unwell; (iii) ongoing fears for the safety of their family member in the wider community; (iv) stressful experiences related to inadequacies of the health system; and (v) financial pressures on providing for needs of the family.

‘So, with [name] we can’t leave [name] alone in the house, do you understand? … She opens [the door], they rape her… We can’t leave her alone...because it’s wrong outside now. Even old women are being raped’. Caregiver participant 23, female

Most caregivers indicated little support from wider family once they had been ‘designated’ as primary caregiver. Most caregivers were daughters or mothers, with multi-generational caregiving responsibilities (e.g. grandchildren and older people in the same household). Caregivers described little support from neighbours or any community resource, although a minority had maintained friendships. Several indicated that having a break from their role would be valued alongside their family members’ recovery journey.

‘People have that mindset that ‘I don’t want to enter in other people’s business’… once you have [mental health condition] you have that stigma a lot of people run away. No one will want to come help you it becomes your own burden as a caregiver’. Caregiver participant 10, female

Acceptability and feasibility of a peer-facilitated recovery intervention

The proposed group format was acceptable to the majority of service users and caregivers. Most felt they would join such a group and that they would be comfortable in the group environment. A minority described being anxious talking in public and that being in a group could cause them stress.

‘I'm not a specialist at talking… but then again I'm willing, if there is a person in front of us, right [facilitator]? I would love to be part of it where we sit and talk about our experiences’. Service user participant 40, male

There were contrasting perspectives on the acceptability of service user and caregiver peers as group facilitators. One subgroup of service users and caregivers felt that, compared to health professionals, peer facilitators would be ‘closer’ to group members in life experiences and socio-economic status. Some participants thought it likely that peer facilitators would have better availability than health professionals. They anticipated that peer facilitators would be able to give others a sense of hope through telling their own story. Being a peer facilitator was also seen as an opportunity for service users to show that they are valued as ‘equals’ with other members of their community.

‘I think that a [peer facilitator] is better because I might be at a point that she/he has passed through and I am given comfort that she/he has experienced this…they are a support for me…I would like to get help from a person that I can relate to more’. Caregiver participant 58, male

In contrast, a second subgroup of service users and caregivers expressed preference for a health worker or other professional since they would have the advantage of additional skills and information on SMHC and medications. Service providers generally encouraged the principle of group ownership and the ‘upskilling’ of people other than professionals to promote sustainability. However, a subgroup of service providers voiced concerns around the capacity of non-specialists and peers to manage group dynamics and maintain safety. They highlighted that some service users may lack the confidence to facilitate groups.

‘It would be nice to have such work done by someone who knows it [trained professional]…not understand from the book but understanding things that go with it, the behaviour, how to handle situations’. Service provider participant 8, female

From the expressed needs of participants we identified key recovery outcomes and processes that the PRIZE recovery groups would aim to achieve for both service users and caregivers. We developed an initial theory of change diagram based on these desired outcomes and framed within the recovery principles outlined by ImROC, identified during Step 1 (building hope, a sense of control and opportunity) (Fig. 3). Specific outcomes outlined in the theory of change were building self-esteem (T1 Feeling positive and hopeful; T2 Feeling good about myself; T3 Feeling my mind is working well; T6 Having meaning in life and making a contribution), improving social inclusion (T4 Having the personal relationships I want; T5 Being respected and involved in my community), improving coping (T9 Knowing what keeps me well and how to access it), improving financial instability (T7 Being independent), improving responses to substance use and medication problems (T8 Keeping healthy, good diet, no alcohol). For caregivers the outcome was improving coping and social support (T10 Minimising the burden of caregiving). Specific preconditions included attendance and participation in groups, training and skills acquisition, group member self-organization and running of groups, and that required upward referrals would be made (P1-P20, Fig. 3).

Figure 3 PRIZE theory of change

Outline of PRIZE recovery group intervention developed

On balance it was decided to proceed with a group format on the basis this was likely to be acceptable to study participants, and a way of achieving the social inclusion desired. It was decided that mixed service user and caregiver groups would best meet expressed needs. It was determined that to promote inclusivity, other than diagnosis of SMHC (schizophrenia) no inclusion/exclusion criteria were imposed (for example based on disability, symptom severity, or perceived ability to participate). Service users’ capacity to consent was therefore the basis for eligibility. The supported peer facilitation approach was viewed as being able to meet the need for a relatable facilitator with relevant personal experience, as well as input from a professional. A 2-hour meeting duration was planned to allow time for informal socializing at the end, increasing social interaction for service users and opportunity for caregivers to relax and have a break in line with desired outcomes.

The principles of hope, control and opportunity were operationalized in every training and recovery group session by encouraging service users to value their lived experience in contrast to expert/professional led programmes. Formal ‘content’ was reduced in favour of group-directed problem solving, which we identified as an appropriate way to promote ownership and self-determination. We decided that although a flexible approach was beneficial, there should be a set structure for each group meeting to strengthen facilitation. Each ASW-facilitated session followed the process of: (i) check-in, (ii) group discussion on a topic, using stories, (iii) group problem-solving, (iv) informal socializing and refreshments. Check-ins at the beginning of each session were positioned as a chance to reinforce group guiding values, recovery principles and ground rules. Each session would also include a breathing/relaxation exercise to address stress management, particularly for caregivers. It was also planned that ASW facilitators (or peer facilitators, with ASW support) could arrange for external speakers if particular needs or topics arose. Similarly, each peer-facilitated session followed the process of (i) check in (ii) optional guest speaker, (iii) manage problems (iv) relaxation exercise (v) socialising. The importance of being clear on expectations for the group from the outset was emphasized with guidance that the group could offer support, but facilitators/peer-facilitators were not there as ‘problem solvers’. This was deemed important to avoid placing additional burdens of care on ASWs and peer facilitators.

3.1.4 Step 3 Engaging district stakeholders to identify key uncertainties and barriers

The proposed group format received strong support from Department of Health and IMH NGO. Stakeholders highlighted that relationship difficulties in the families of people with SMHC were common, with caregivers reportedly tending to ‘silence’ service users and potentially dominating groups. To mitigate this, it was decided that each session would begin with service users and caregivers having separate ‘check-ins’. They would then join to form a mixed group. To facilitate the parallel group check-ins it was decided that two ASW facilitators would need to be present at each group. Although this would make the intervention more resource intensive, this was deemed necessary to address the contextually specific need for combined caregiver and service user groups. This would also enable one facilitator to focus on facilitation, and one to support and document the group process. An additional two assistant facilitators (with a social work degree but no prior work experience) were recruited by PRIZE. There was also a recommendation from district stakeholders, that both caregivers and service users should be peer facilitators, to avoid the possibility of caregivers dominating the groups. We decided that a minimum of two peer facilitators would be identified from each group (ideally one service user, one caregiver). As part of their role and training, ASWs would be asked to introduce the concept of shifting to a peer-led format from week 4 of each group running, then the identification of peer facilitators would be directed by the groups (e.g. through group and/or self-nomination), aligned with the core value of self-determination.

District stakeholders also emphasized the time needed for engaging participants before starting groups to build motivation and foster participation. We therefore decided that ASWs would conduct a home visit with people who were interested to have an initial discussion about groups, followed by a second home visit for those who wanted to participate, to go through the consent process. IMH NGO made a commitment for ASWs to be trained to conduct these home visits and facilitate the PRIZE intervention sessions, and that they would have designated time to complete this role. District stakeholders also stressed the importance of conducting meetings within walking distance of group members’ homes. In line with the PRIZE intersectoral approach, local ward councillors were identified as key intermediaries who could help find suitable venues. It was decided that ASWs, who already work in these communities, would be tasked with identifying accessible, free, private and safe spaces to hold the groups, through liaising with the local ward councillors.

District stakeholders also highlighted the prevalence of substance use disorder and the lack of available treatment for substance use disorder. ASW facilitators were trained to ask participants under the influence of alcohol or drugs to leave the current session, and to refer to health services if needed. Participants were invited to return the following week if they were able. Finally, district stakeholders highlighted that peer facilitators and group members may have an expectation of payment for participation. To maximize scalability given the lack of resources for mental health in the district, it was decided that peer facilitators would not be reimbursed for their role in the pilot study. The intervention was developed to include clear communication from the start of the groups that there was not payment for the peer facilitator role or group attendance, but that certificates of training and participation would be presented.

3.1.5 Step 4 Refining the intervention, developing materials and implementation plan

Intervention materials

A suite of PRIZE recovery group materials (Table 3) was developed to enable facilitation and supervision processes for the ASW-led (Phase 1) and peer-led (Phase 2) phases. The intervention development process and reorientation of the research team to recovery-focused interventions led to transformational changes in materials from being psychoeducational and biomedically focused to highlighting the role of learning from lived experience and building existing strengths towards recovery. We used recovery-focused language in all group sessions, training, materials and interactions, and attended to the underlying principle of promoting group ownership and creating an enabling environment of support as opposed to the provision of medical or social work ‘expert’ knowledge. Nine session topics for the ASW-led phase were: 1. Introduction to the recovery group, 2. Understanding my mental health, 3. Building self-esteem, 4. My personal recovery plan, 5. When things aren’t going well…, 6. Dreams and goals, 7. Thinking about money, 8. Healthy relationships and 9. Celebrating our journey so far and next steps together (Table 4). Vignettes/stories developed from qualitative data (Step 2) were compiled for each session and translated into isiXhosa to promote relatability of content. Visual aids (illustration cards) based on the vignettes and incorporating culturally relevant images were created to aid discussions. We envisaged that sessions 2 and 3 would address the core need of improving self-esteem and confidence and set the tone of building hope and opportunity. It was determined that a personal recovery planning approach (sessions 4, 5 and 6), drawing on co-investigator’s experience from ImROC and Recovery Colleges, would be foundational to achieving the overall guiding principles of hope, control and opportunity. The recovery planning approach represented a key shift from the original PRIME intervention which focused on psychoeducation (Brooke-Sumner, Selohilwe et al. 2018). Sessions on financial management and healthy relationships were included to give opportunities for problem solving on these areas of concern. Substance use was a thread in multiple sessions and given space for group discussion and sharing of experience with discussion guided by vignettes. Several sessions had specific handouts developed and translated into isiXhosa. For the Phase 2 (peer-facilitated phase) it was initially planned to create a bank of 8–10 key topic guides for peer facilitators to follow, reflecting core themes from ASW-facilitated sessions. However, concerns were raised by ASWs in Step 2 that this might exclude group members with low literacy levels. For the peer-led phase a brief universal session overview was created, largely based on images, to be inclusive to those with low literacy, covering check-in, group problem solving and a relaxation exercise.

Table 3

Overview of PRIZE materials
Material	Content and activity	Language	Purpose
ASW training manual	Core topics: information about recovery, human rights, boundaries (limits on roles), communication skills, safety, problem solving, challenging situations, referrals. Discussion of vignettes, role plays of sessions	English	Prepare and practice for ASW-facilitated sessions
ASW group facilitation guide	Check in separately for service users and caregivers Vignette with illustration card Group problem solving Informal socializing	English, vignettes isiXhosa	Session guidance for ASW facilitators to run 9 recovery group sessions
Illustration cards	Colour illustrations with vignettes	isiXhosa	Visual aid for ASWs when sharing vignettes
ASW intervention delivery guide	Guidance on: Supporting participation Getting support Recording session activities What to do in difficult situations	English	Guidance for maintaining group norms and safety, encouraging participation, self care for facilitators
Process record documents	Group process note Attendance register Phone call/WhatsApp reminder log Referral form	English	Enable ASWs to record process indicators and make referrals
Supportive supervision tools	ASW Adapted GroupAct Assessment of group facilitation skills Weekly supervision notes	English	Enable mentoring of ASWs, ongoing support, supervision by IMH NGO Supervisor
Peer facilitator training manual	Core topics: How to facilitate a session Session structure	isiXhosa	Enable ASW to mentor and support peer in facilitation role
Peer facilitation guide	Session structure: Check in Group problem solving Relaxation exercise	isiXhosa	Session guide for peer facilitators to follow
Peer mentoring tool	Peer facilitator adapted GroupACT	English	Enable ASWs to identify support needs of peer facilitators

Table 4

PRIZE session topics and content for ASW-led phase (Phase 1)
Session	Need identified in scoping work, interviews and stakeholder consultation	Content of session
1. Introduction to the recovery group	Mutual respect as foundation for group functioning and promoting self-esteem Information on recovery	Group agreement on behaviours and attitudes for group functioning Information on session structure Introduction to mental health and recovery - emotional health thermometer (green, orange, red zones of wellness)
2. Understanding my mental health	Psychoeducation on causes, symptoms, treatment of SMHC	Information on causes symptoms and biomedical treatment Sharing experiences of treatment, side effects and how to stay well
3. Building self-esteem	Address life experiences that erode self esteem	Discussion and sharing how stigma affects self esteem
4. Recovery planning 1: My personal recovery plan	Support progress from biomedical to personal recovery conceptualisation	Sharing experiences of personal recovery Beginning an individual recovery plan document Activity and handout: what do to and what to avoid to keep myself well
5. Recovery planning 2: When things aren’t going well	Service user and caregiver agree plan for managing a crisis	Discussion on triggers Discussion on support networks
6. Recovery planning 3: Dreams and goals	Develop personal goals	Discussion on how to set goals Activity and handout: personal goals and achievable steps
7. Thinking about money	Financial management, budgeting and avoiding debt	Discussion of impact of money and debt on stress Problem management to manage money and prevent debt Activity and handout: budgeting
8. Healthy relationships	Build healthy relationships in family as a supportive environment for recovery	Discussion on communication and boundaries Activities and handouts: setting boundaries, communicating effectively
9. Celebrating our journey so far and next steps together	Acknowledge learning and members’ contributions	Certificate presentation ceremony Introduction to peer-facilitated sessions

3.1.6 Implementation plan: training, supervision and mentoring

The implementation plan developed was guided by the scoping spreadsheet which recorded guiding values, inclusion/exclusion criteria, training requirements and procedures for monitoring and supporting attendance. We developed training and supervision plans for ASWs and peers that addressed the concerns raised during the qualitative work, for example that peer facilitators would need to develop the confidence and skills to manage group dynamics. We drew on successful experiences from the investigator group of using an apprenticeship model of training peers and other non-specialists in psychosocial support in diverse contexts (Murray, Dorsey et al. 2011, Asher, Birhane et al. 2021, Asher, Birhane et al. 2022). It was therefore decided to conduct three days training (by BR, GF, CBS) for ASWs in advance of intervention delivery, followed by four half-day sessions staggered between group sessions. This was to enable feedback and discussion on challenges and solutions as a core element of ongoing training. We recognized that for ASWs to encourage a strengths-based recovery approach would require a cultural shift away from the usual focus in South African social work practice which targets resolving problems and addressing needs. As such the training would develop problem-solving as a core skill to be transferred from ASWs to peer facilitators and group members, to harness and build on strengths of participants and foster self-determination.

It was decided that peer facilitators would be trained over four half-day sessions by the ASWs, the isiXhosa speaking study coordinator (BR) and study team (GF, CBS). Similar to the ASW training, this was planned to be interspersed between group meetings enabling peer facilitators to ask questions relating to what emerged in group sessions and gain ongoing feedback. Peer facilitator training was designed to draw out experiential knowledge, but also covered group facilitation skills, group problem solving, and how and when to request support. Training programmes for both ASWs and peer facilitators foregrounded participatory and experiential learning methods and adult education approaches.

Supportive supervision of ASWs and peer facilitators was noted to be necessary to build confidence and competence to facilitate groups. In intervention development workshops it was decided that an adaptation of the GroupACT, a tool for assessing facilitator competencies in group-based psychosocial support interventions (Pedersen, Sangraula et al. 2021), would be used to assess group facilitation skills in practice. Weekly group supervision sessions with a social worker supervisor (IMH NGO social worker) and project staff (for ASWs) using the GroupACT as a guide, would function as an opportunity for additional training. It was intended that peer facilitators would have ongoing mentorship and support from ASWs with ASWs ‘shadowing’ the first two peer-led sessions and attending groups monthly after that. ASWs had a telephone debrief with each peer facilitator after every session (unless observed). Group supervision with ASWs and all peer facilitators was planned to take place on a fortnightly basis, to share experiences and problem-solve emerging issues.

3.1.7 Implementation plan: Strategies to assess and improve intervention fidelity

To address the critical matter identified by stakeholders of stimulating and maintaining participation, we included ongoing intensive promotion of participation into the intervention design: (i) ASWs contacted group participants by phone, WhatsApp or text message the day prior to each ASW-led and peer-led session, (ii) ASWs provided group members with a reminder card for the following week’s session, (iii) ASW and peer facilitators kept an attendance register for each session and (iv) ASWs contacted non-attending group members via WhatsApp, text message or phone call to check on their wellbeing and encourage them to attend the following week. It was expressed by service providers that refreshments would be a strong motivator for participation, but concerns about sustainability were made by district stakeholders and the research group. Based on the experience in Recovery Colleges globally, we supplied refreshments during the ASW-led phase (Phase 1) but in the peer-led phase (Phase 2) group members were asked to make their own refreshment arrangements as part of the groups’ growing ownership. Participation was also encouraged by setting the tone from the beginning that no group member would be a ‘passive’ recipient; instead, everyone had a role in the group process (e.g. taking attendance list, helping with refreshments, being the person who ‘welcomes’ and brings people in) thereby increasing ownership of, and commitment to, the group. To assess intervention fidelity, we designed a brief bespoke fidelity checklist (Supplementary File 3) through which ASW facilitators could indicate whether core session components were carried out as planned.

In this paper we have described the intervention development process for a contextually relevant programme for non-specialist and peer-led recovery groups for people with SMHC and caregivers in an underserved area in South Africa. The PRIZE model builds on previous work by our group from South Africa and Ethiopia, and adds to the body of work on peer support approaches from other LMICs (Brooke-Sumner 2014, Brooke-Sumner, Lund et al. 2014, Chatterjee, Naik et al. 2014, Asher, Fekadu et al. 2015, Asher, De Silva et al. 2016, Brooke-Sumner, Lund et al. 2016, Asher, Birhane et al. 2022, Mascayano, Alvarado et al. 2022), now incorporating the innovation of group-based, peer-led support. This study presents, to the best of our knowledge, the first research implementation of a peer-led approach for SMHC in South Africa. In contrast to studies using a one-to-one peer support approach (Moran, Kalha et al. 2020, Goldfarb, Grayzman et al. 2022), PRIZE harnesses a group-based peer-led approach which may be feasible and scalable for the context as well as promoting social inclusion. Meaningful involvement of service users and caregivers in mental health services can be complex. The service user engagement in this study represents an important step forward in this regard for the South African and LMIC context, contributing to development of informal mental health interventions (Nguyen, Holton et al. 2019). In line with the MRC framework, we used the theory of change created as part of the development process to create an evaluation framework for the PRIZE randomised feasibility trial (Asher, Rapiya et al. 2023). The trial found encouraging results relating to PRIZE acceptability, feasibility and effectiveness (Asher 2024).

Initial scoping work highlighted the need for a paradigm shift from an intervention focused on psychoeducation and professional-led services, to focus on personal recovery, drawing on experiences from Recovery Colleges, which have expanded globally (mostly in HIC) (e.g. (Hayes, Henderson et al. 2022)). They have foundational core values of being collaborative, focused on identifying and building strengths, and being person-centred, inclusive and community-focused. The PRIZE intervention used recovery-focused language, a key shift for mental health service providers working with Recovery Colleges (Dalgarno and Oates 2018). Being led by the values of building hope, opportunity and control also meant a move away from a highly structured manualized intervention approach to the facilitation of a process in which groups harness their own experiences and problem solving strengths, building positive orientation to problems and a sense of efficacy in addressing problems (Palmeira, Keusen et al. 2020). The final PRIZE intervention incorporates content and processes that align with recovery-focused mechanisms of action, including creating an empowering environment, giving space for development of different trusting relationships (e.g. between peers and family members), relationship healing, role modelling recovery and embedding personal recovery plans (Toney, Elton et al. 2018).

Careful consideration of the context for the PRIZE model was required (Dev, Kankan et al. 2021). There was strong support across stakeholders for a potential facilitated group approach but sustainable human resources for implementation were limited. Building the relationship with IMH NGO indicated the feasibility of intersectoral working with an NGO partner as one way of implementing peer-led approaches. Engagement with stakeholders brought to light contextual realities which would shape the recovery programme and have also been documented in other South African settings, including challenges with accessing disability grants (Anic and Robertson 2020), high levels of substance use and unavailability of treatment (Thungana, Zingela et al. 2019). Feasible strategies for non-specialist ASWs and peers to build support in these areas, through group problem solving and onward referral when required, were incorporated into the intervention. Detailed attention was also given to considerations of accessibility of materials and procedures for those with lower education levels and who were less comfortable in communicating in English.

The intervention development workshops enabled integration of qualitative and consultative work and decision making around feasible implementation. The decision not to pay peer facilitators a stipend was based on sustainability concerns and funding constraints of the feasibility trial. However, these concerns should be balanced against the possibility of exploiting peer workers for labour, particularly in this low-resource context where financial instability exerts a powerful influence on recovery. There may therefore be justification for service arrangements that enable peer support workers to be paid a stipend in future similar endeavors.

Peer facilitators have elsewhere been found to create a more accessible and positive space for recovery than can be provided by a professional (Palmeira, Keusen et al. 2020, Dev, Kankan et al. 2021). The collaborative and stepped care approach of the intervention, in which ASWs refer to health facilities and social workers as needed, is in line with the accepted need for additional support as part of task-shared mental health services. Service providers’ concerns that non-specialists and peers would lack confidence and skills to manage groups may reflect the power asymmetries that have been found to limit the success of task sharing of mental health services elsewhere (Abayneh, Lempp et al. 2017, Le, Agrest et al. 2022). We nevertheless developed strong training and supportive supervision processes for ASWs and peers, as implemented in settings where these approaches are more developed (Repper and Carter 2011), and we aimed to assess ASW and peer competence in the PRIZE feasibility trial (Asher, Rapiya et al. 2023) alongside provision of supportive supervision using the GroupACT tool.

Limitations

After the initial qualitative work there was limited engagement with service users and caregivers (for example on session content and delivery) largely due to restrictions imposed by the COVID-19 pandemic. However this input has subsequently been gained through qualitative interviews with participants who had experienced the groups in the feasibility trial (Asher, Rapiya et al. 2023). Future work should embrace full co-production methodologies, for example in interactive discussions and feedback on session content.

The PRIZE intervention development described in this paper has outlined a structured approach to developing an innovative, peer-led, recovery-focused intervention for an under-served South African context. The programme draws on current recovery approaches from HIC and other LMIC and is grounded in the needs and resource landscape of the local setting. PRIZE contributes to the identified need for intervention research for support for people with psychosis outside the biomedical space (Hunt, Abdurahman et al. 2022) and includes collaboration between the health and non-governmental spheres (J. van Rensburg and Brooke-Sumner 2023). This has strong potential to fill the gap in provision of community-based psychosocial support services for recovery in South Africa and to be generalizable to other LMIC.

ASW Auxiliary Social Worker

HIC High-income Countries

IMH Indlela Mental Health

LMIC Low- and Middle-Income countries

SMHC Severe Mental Health Condition

The authors have not used generative AI or AI-assisted technologies in the writing process.

Acknowledgements

The authors wish to thank Hlubikazi Dzedze, Ingrid Daniels, Director of Cape Mental Health Society, Limeez Botha, Director of Indlela Mental Health Society, Bharti Patel, Director of the SA Federation for Mental Health, Charlene Sunkel, Founder of the Global Mental Health Peer Network, and Marina Barnard from the Department of Health. CH and LA receive support from the National Institute for Health and Care Research (NIHR) through the NIHR Global Health Research Group on Homelessness and Mental Health in Africa (NIHR134325). CH also receives support from the SPARK project (NIHR200842) using UK aid from the UK Government. The views expressed in this publication are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. CH also receives support from Wellcome grants 222154/Z/20/Z and 223615/Z/21/Z. For the purposes of open access, the author has applied a Creative Commons Attribution (CC BY) licence to any Accepted Author Manuscript version arising from this submission.

Authors’ contributions

LA and CBS led funding acquisition, conceived the study and led the intervention design, data curation and analysis. BR, JR, BM, IP, GF and CH contributed to the intervention development. BR, BM, IP and CH contributed to the research study design and protocol development. BR led project coordination. CBS wrote the first and final drafts. All authors read and approved the final manuscript.

Funding

Research reported in this publication was supported by the South African Medical Research Council with funds received from the South African National Department of Health and the UK Medical Research Council, and with funds received from the UK Government’s Newton Fund. The funders had no role in the design of the study and collection, analysis, interpretation of data, or in writing the manuscript.

Availability of data and materials

Data is available from the lead author on reasonable request.

Declaration of generative AI and AI-assisted technologies in the writing process

The authors have not used generative AI or AI-assisted technologies in the writing process.

Abayneh S, Lempp H, Alem A, Alemayehu D, Eshetu T, Lund C, Semrau M, Thornicroft G, Hanlon C (2017) Service user involvement in mental health system strengthening in a rural African setting: qualitative study. BMC Psychiatry 17(1):187
Anic A, Robertson LJ (2020) Prevalence and clinical correlates of substance use amongst acute psychiatric inpatients in Gauteng, South Africa. 2020 26
Anthony WA (1993) Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation J 16:11–23
Asher L, Birhane R, Teferra S, Milkias B, Worku B, Habtamu A, Kohrt BA, Hanlon C (2021) Like a doctor, like a brother: Achieving competence amongst lay health workers delivering community-based rehabilitation for people with schizophrenia in Ethiopia. PLoS ONE 16(2):e0246158
Asher L, Birhane R, Weiss HA, Medhin G, Selamu M, Patel V, De Silva M, Hanlon C, Fekadu A (2022) Community-based rehabilitation intervention for people with schizophrenia in Ethiopia (RISE): results of a 12-month cluster-randomised controlled trial. Lancet Global Health 10(4):e530–e542
Asher L, Birhane R, Weiss HA, Medhin G, Selamu M, Patel V, De Silva M, Hanlon C, Fekadu A (2022) Community-based rehabilitation intervention for people with schizophrenia in Ethiopia (RISE): results of a 12-month cluster-randomised controlled trial. Lancet Glob Health 10(4):e530–e542
Asher L, Brooke-Sumner C, Rapiya B, Repper J, Reddy T, Myers-Franchi B, Faris G, Petersen I, Hanlon C (2024) Peer-led recovery groups for people with psychosis in South Africa (PRIZE): results of a randomized controlled feasibility trial. Res Square 08 February 2024(PREPRINT (Version 1)).
Asher L, De Silva M, Hanlon C, Weiss HA, Birhane R, Ejigu DA, Medhin G, Patel V, Fekadu A (2016) Community-based Rehabilitation Intervention for people with Schizophrenia in Ethiopia (RISE): study protocol for a cluster randomised controlled trial. Trials 17(1):299
Asher L, Fekadu A, Hanlon C (2018) Global mental health and schizophrenia. Curr Opin Psychiatry 31(3):193–199
Asher L, Fekadu A, Hanlon C, Mideksa G, Eaton J, Patel V, De Silva MJ (2015) Development of a Community-Based Rehabilitation Intervention for People with Schizophrenia in Ethiopia. PLoS ONE 10(11):e0143572
Asher L, Fekadu A, Teferra S, De Silva M, Pathare S, Hanlon C (2017) I cry every day and night, I have my son tied in chains: physical restraint of people with schizophrenia in community settings in Ethiopia. Global Health 13(1):47
Asher L, Patel V, De Silva MJ (2017) Community-based psychosocial interventions for people with schizophrenia in low and middle-income countries: systematic review and meta-analysis. BMC Psychiatry 17(1):355
Asher L, Rapiya B, Repper J, Reddy T, Myers B, Hanlon C, Petersen I, Brooke-Sumner C (2023) Peer-led recovery groups for people with psychosis in South Africa (PRIZE): protocol for a randomised controlled feasibility trial. Pilot Feasibility Stud 9(1):19
Bjørkedal STB, Bejerholm U, Eplov LF, Møller T (2020) Meaningful Activities and Recovery (MA&R): the effect of a novel rehabilitation intervention among persons with psychiatric disabilities on activity engagement-study protocol for a randomized controlled trial. Trials 21(1): 789
Brooke-Sumner C, Lund C, Petersen I (2014) Perceptions of psychosocial disability amongst psychiatric service users and caregivers in South Africa. Afr J Disabil 3(1):146
Brooke-Sumner C, Lund C, Petersen I (2016) Bridging the gap: investigating challenges and way forward for intersectoral provision of psychosocial rehabilitation in South Africa. Int J Ment Health Syst 10:21
Brooke-Sumner C, Lund C, Selohilwe O, Petersen I (2017) Community-based psychosocial rehabilitation for schizophrenia service users in the north west province of South Africa: A formative study. Social Work Mental Health 15(3):249–283
Brooke-Sumner C, Lund C, Petersen I (2014) PRIME Psychosocial Rehabilitation (PSR) Support Groups Facilitator’s Guide. DFID
Brooke-Sumner C, Petersen I, Asher L, Mall S, Egbe CO, Lund C (2015) Systematic review of feasibility and acceptability of psychosocial interventions for schizophrenia in low and middle income countries. BMC Psychiatry 15:19
Brooke-Sumner C, Rapiya B, Myers B, Petersen I, Hanlon C, Repper J, Asher L (2024) COVID-19 experience of people with severe mental health conditions and families in South Africa. 2024 30
Brooke-Sumner C, Selohilwe O, Mazibuko MS, Petersen I (2018) Process Evaluation of a Pilot Intervention for Psychosocial Rehabilitation for Service Users with Schizophrenia in North West Province, South Africa. Community Ment Health J 54(7):1089–1096
Byrne D (2022) A worked example of Braun and Clarke’s approach to reflexive thematic analysis. Qual Quant 56
Cabassa LJ, Camacho D, Vélez-Grau CM, Stefancic A (2017) Peer-based health interventions for people with serious mental illness: A systematic literature review. J Psychiatr Res 84:80–89
Castelein S, Bruggeman R, van Busschbach JT, van der Gaag M, Stant AD, Knegtering H, Wiersma D (2008) The effectiveness of peer support groups in psychosis: a randomized controlled trial. Acta Psychiatr Scand 118(1):64–72
Chatterjee S, Naik S, John S, Dabholkar H, Balaji M, Koschorke M, Varghese M, Thara R, Weiss HA, Williams P, McCrone P, Patel V, Thornicroft G (2014) Effectiveness of a community-based intervention for people with schizophrenia and their caregivers in India (COPSI): a randomised controlled trial. Lancet 383(9926):1385–1394
Cotterill S, Knowles S, Martindale AM, Elvey R, Howard S, Coupe N, Wilson P, Spence M (2018) Getting messier with TIDieR: embracing context and complexity in intervention reporting. BMC Med Res Methodol 18(1):12
Dalgarno M, Oates J (2018) The meaning of co-production for clinicians: An exploratory case study of Practitioner Trainers in one Recovery College. J Psychiatr Ment Health Nurs 25(5–6):349–357
De Wet A, Parker J, Pretorius C (2019) The Spring Foundation: a recovery approach to institutional public mental health services in South Africa. Perspect Public Health 139(3):123–124
Dev S, Kankan T, Blasco D, Le PD, Agrest M, Dishy G, Mascayano F, Schilling S, Jorquera MJ, Dahl C, Cavalcanti MT, Price L, Conover S, Yang LH, Alvarado R, Susser ES (2021) Implementation of a pilot community-based psychosocial intervention for patients with psychoses in Chile and Brazil: a comparative analysis of users' perspectives. Glob Ment Health (Camb) 8:e15
Docrat S, Besada D, Cleary S, Daviaud E, Lund C (2019) Mental health system costs, resources and constraints in South Africa. a national survey. Health Policy and Planning
Duncan E, O'Cathain A (2020) Guidance for reporting intervention development studies in health research (GUIDED): an evidence-based consensus study. 10(4):e033516
Fan Y, Ma N, Ma L, Xu W, Steven Lamberti J, Caine ED (2018) A community-based peer support service for persons with severe mental illness in China. BMC Psychiatry 18(1):170
Fan Y, Ma N, Ma L, Zhang W, Xu W, Shi R, Chen H, Lamberti JS, Caine ED (2019) Feasibility of peer support services among people with severe mental illness in China. BMC Psychiatry 19(1):360
Gamieldien F, Galvaan R, Myers B, Sorsdahl K (2023) Mental Health Service Users and Their Caregivers Perspectives on Personal Recovery from Severe Mental Health Conditions in Cape Town. A Qualitative Study. Journal of Psychosocial Rehabilitation and Mental Health, South Africa
Gamieldien F, Galvaan R, Myers B, Syed Z, Sorsdahl K (2021) Exploration of recovery of people living with severe mental illness (SMI) in low/middle-income countries (LMICs): a scoping review. BMJ Open 11(3):e045005
Goldfarb Y, Grayzman A, Meir LG, Grundman SH, Rabinian M, Lachman M, Epstein PG, Ben-Dor IA, Naaman A, Puschner B, Moran GS (2022) UPSIDES Mental Health Peer Support in Face of the COVID-19 Pandemic: Actions and Insights. Community Ment Health J : 1–9
Hanlon C, Medhin G, Dewey ME, Prince M, Assefa E, Shibre T, Ejigu DA, Negussie H, Timothewos S, Schneider M, Thornicroft G, Wissow L, Susser E, Lund C, Fekadu A, Alem A (2022) Efficacy and cost-effectiveness of task-shared care for people with severe mental disorders in Ethiopia (TaSCS): a single-blind, randomised, controlled, phase 3 non-inferiority trial. Lancet Psychiatry 9(1):59–71
Hayes D, Camacho EM, Ronaldson A, Stepanian K, McPhilbin M, Elliott RA, Repper J, Bishop S, Stergiopoulos V, Brophy L, Giles K, Trickett S, Lawrence S, Winship G, Meddings S, Bakolis I, Henderson C, Slade M (2023) Evidence-based Recovery Colleges: developing a typology based on organisational characteristics, fidelity and funding. Soc Psychiatry Psychiatr Epidemiol : 1–10
Hayes D, Henderson C, Bakolis I, Lawrence V, Elliott RA, Ronaldson A, Richards G, Repper J, Bates P, Brewin J, Meddings S, Winship G, Bishop S, Emsley R, Elton D, McNaughton R, Whitley R, Smelson D, Stepanian K, McPhilbin M, Dunnett D, Hunter-Brown H, Yeo C, Jebara T, Slade M (2022) Recovery Colleges Characterisation and Testing in England (RECOLLECT): rationale and protocol. BMC Psychiatry 22(1):627
Hayes D, Hunter-Brown H, Camacho E, McPhilbin M, Elliott RA, Ronaldson A, Bakolis I, Repper J, Meddings S, Stergiopoulos V, Brophy L, Miyamoto Y, Castelein S, Klevan TG, Elton D, Grant-Rowles J, Kotera Y, Henderson C, Slade M, De Ruysscher C, Okoliyski M, Kubinová P, Eplov LF, Toernes C, Narusson D, Tinland A, Puschner B, Hiltensperger R, Lucchi F, Borg M, Tan RBM, Sornchai C, Tiengtom K, Farkas M, Morland-Jones H, Butler A, Mpango R, Tse S, Kondor Z, Ryan M, Zuaboni G, Hanlon C, Harcla C, Vanderplasschen W, Arbour S, Silverstone D, Bejerholm U, Powell CL, Ochoa S, Garcia-Franco M, Tolonen J, Dunnett D, Yeo C, Stepanian K, Jebara T (2023) Organisational and student characteristics, fidelity, funding models, and unit costs of recovery colleges in 28 countries: a cross-sectional survey. Lancet Psychiatry 10(10):768–779
Hunt X, Abdurahman H, Omobowale O, Afolayan A, Munetsi E, Dzapasi L, Mokaya N, Koroma A, Barrie I, Ogunmola O, Koroma A, Shakespeare T, Eaton J, Ryan G (2022) Interventions for adolescents and adults with psychosis in Africa: a systematic review and narrative synthesis. Glob Ment Health (Camb) 9:223–240
Ibrahim N, Thompson D (2020) A systematic review of influences on implementation of peer support work for adults with mental health problems. 55(3):285–293
van Rensburg J, A. and, Brooke-Sumner C (2023) Intersectoral and multisectoral approaches to enable recovery for people with severe mental illness in low- and middle-income countries: A scoping review. Cambridge Prisms: Global Mental Health 10: e19
Le PD, Agrest M, Mascayano F, Dev S, Kankan T, Dishy G, Tapia-Muñoz T, Tapia E, Toso-Salman J, Pratt C, Alves-Nishioka S, Schilling S, Jorquera MJ, Castro-Valdez J, Geffner N, Price LN, Conover S, Valencia E, Yang LH, Alvarado R, Susser ES (2022) Understanding Users' Perspectives of Psychosocial Mechanisms Underpinning Peer Support Work in Chile. Community Ment Health J 58(1):111–120
Leamy M, Bird V, Boutillier CL, Williams J, Slade M (2018) Conceptual framework for personal recovery in mental health: systematic review and narrative synthesis. Br J Psychiatry 199(6):445–452
Lund C, De Silva M, Plagerson S, Cooper S, Chisholm D, Das J, Knapp M, Patel V (2011) Poverty and mental disorders: breaking the cycle in low-income and middle-income countries. Lancet 378(9801):1502–1514
Lyons N, Cooper C, Lloyd-Evans B (2021) A systematic review and meta-analysis of group peer support interventions for people experiencing mental health conditions. BMC Psychiatry 21(1):315
Mahlke CI, Nixdorf R, Repper J, UPSIDES study group (2019) UPSIDES Peer Support Training Manual and Workbook. UPSIDES Study
Mascayano F, Alvarado R, Andrews HF, Baumgartner JN, Burrone MS, Cintra J, Conover S, Dahl CM, Fader KM, Gorroochurn P, Galea S, Jorquera MJ, Lovisi GM, Mitkiewicz F, de Souza C, Pratt ME, Restrepo-Toro G, Rojas K, Rodrigues Sarução R, Rosenheck S, Schilling T, Shriver P, Stastny E, Tapia MT, Cavalcanti E, Valencia LH, Yang A, Restrepo Henao G, Martínez-Alés V, Romero Pardo T, Gomez Alemany, Susser E (2022) A Recovery-Oriented Intervention for People With Psychosis: A Pilot Randomized Controlled Trial. Psychiatr Serv 73(11):1225–1231
Mascayano F, Alvarado R, Andrews HF, Jorquera MJ, Lovisi GM, Souza FM, Pratt C, Rojas G, Restrepo-Toro ME, Fader K, Gorroochurn P, Galea S, Dahl CM, Cintra J, Conover S, Burrone MS, Baumgartner JN, Rosenheck R, Schilling S, Sarução KR, Stastny P, Tapia E, Cavalcanti MT, Valencia E, Yang LH, Susser E (2019) Implementing the protocol of a pilot randomized controlled trial for the recovery-oriented intervention to people with psychoses in two Latin American cities. Cad Saude Publica 35(4):e00108018
Moran GS, Kalha J, Mueller-Stierlin AS, Kilian R, Krumm S, Slade M, Charles A, Mahlke C, Nixdorf R, Basangwa D, Nakku J, Mpango R, Ryan G, Shamba D, Ramesh M, Ngakongwa F, Grayzman A, Pathare S, Mayer B, Puschner B (2020) Peer support for people with severe mental illness versus usual care in high-, middle- and low-income countries: study protocol for a pragmatic, multicentre, randomised controlled trial (UPSIDES-RCT). Trials 21(1):371
Murray LK, Dorsey S, Bolton P, Jordans MJD, Rahman A, Bass J, Verdeli H (2011) Building capacity in mental health interventions in low resource countries: an apprenticeship model for training local providers. Int J Mental Health Syst 5(1):30
Nguyen T, Holton S, Tran T, Fisher J (2019) Informal mental health interventions for people with severe mental illness in low and lower middle-income countries: A systematic review of effectiveness. Int J Soc Psychiatry 65(3):194–206
Nixdorf R, Nugent L, Aslam Rh, Barber S, Charles A, Gai Meir L, Grayzman A, Hiltensperger R, Kalha J, Korde P, Mtei R, Niwemuhwezi J, Ramesh M, Ryan G, Slade M, Wenzel L, Mahlke C (2022) A multi-national peer support intervention: the UPSIDES pilot phase. Adv Mental Health : 1–13
Palmeira L, Keusen A, Carim E, Barreto S, Leão O, Cavalcanti MT (2020) Psychoeducation and Problem-Solving Therapy as an Integrative Model of Mutual-Help Groups for People with Severe Mental Disorders: A Report from Brazil. Commun Ment Health J 56(3):489–497
Patel V (2015) Universal Health Coverage for Schizophrenia: A Global Mental. Health Prior Schizophrenia Bull 42(4):885–890
Patel V, Farooq S, Thara R (2007) What is the best approach to treating schizophrenia in developing countries? PLoS Med 4(6):e159
Patel V, Saxena S, Lund C, Thornicroft G, Baingana F, Bolton P, Chisholm D, Collins PY, Cooper JL, Eaton J, Herrman H, Herzallah MM, Huang Y, Jordans MJD, Kleinman A, Medina-Mora ME, Morgan E, Niaz U, Omigbodun O, Prince M, Rahman A, Saraceno B, Sarkar BK, De Silva M, Singh I, Stein DJ, Sunkel C, UnÜtzer J (2018) The < em > Lancet Commission on global mental health and sustainable development. Lancet 392(10157):1553–1598
Pedersen G, Sangraula M, Shrestha P, Lakshmin P, Schafer A, Ghimire R, Luitel N, Jordans M, Kohrt B (2021) Developing the Group Facilitation Assessment of Competencies Tool for Group-Based Mental Health and Psychosocial Support Interventions in Humanitarian and Low-Resource Settings. J Educ Emergencies 7:334
Petersen I, Fairall L, Bhana A, Kathree T, Selohilwe O, Brooke-Sumner C, Faris G, Breuer E, Sibanyoni N, Lund C, Patel V (2016) Integrating mental health into chronic care in South Africa: the development of a district mental healthcare plan. Br J Psychiatry 208(Suppl 56):s29–39
Puschner B, Repper J, Mahlke C, Nixdorf R, Basangwa D, Nakku J, Ryan G, Baillie D, Shamba D, Ramesh M, Moran G, Lachmann M, Kalha J, Pathare S, Müller-Stierlin A, Slade M (2019) Using Peer Support in Developing Empowering Mental Health Services (UPSIDES): Background, Rationale and Methodology. Annals global health 85(1):53
Repper J, Carter T (2011) A review of the literature on peer support in mental health services. J Ment Health 20(4):392–411
Repper J, Walker L (2019) Training for Peer Support Trainers IMROC Implementing Recovery Through Organisational Change
Ryan GK, Kamuhiirwa M, Mugisha J, Baillie D, Hall C, Newman C, Nkurunungi E, Rathod SD, Devries KM, De Silva MJ, Mpango R (2019) Peer support for frequent users of inpatient mental health care in Uganda: protocol of a quasi-experimental study. BMC Psychiatry 19(1):374
Skivington K, Matthews L, Simpson SA, Craig P, Baird J, Blazeby JM, Boyd KA, Craig N, French DP, McIntosh E, Petticrew M, Rycroft-Malone J, White M, Moore L (2021) A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ 374: n2061
Stratford AC, Halpin M, Phillips K, Skerritt F, Beales A, Cheng V, Hammond M, O'Hagan M, Loreto C, Tiengtom K, Kobe B, Harrington S, Fisher D, Davidson L (2019) The growth of peer support: an international charter. J Ment Health 28(6):627–632
Thungana Y, Zingela Z, van Wyk S (2019) First-episode psychosis and substance use in Nelson Mandela Bay: Findings from an acute mental health unit. South Afr J psychiatry: SAJP : J Soc Psychiatrists South Afr 25(0):1372–1372
Toney R, Elton D, Munday E, Hamill K, Crowther A, Meddings S, Taylor A, Henderson C, Jennings H, Waring J, Pollock K, Bates P, Slade M (2018) Mechanisms of Action and Outcomes for Students in Recovery Colleges. Psychiatr Serv 69(12):1222–1229
Tyler N, Wright N, Waring J (2019) Interventions to improve discharge from acute adult mental health inpatient care to the community: systematic review and narrative synthesis. BMC Health Serv Res 19(1):883
Whitfield J, Owens S, Bhat A, Felker B, Jewell T, Chwastiak L (2023) Successful ingredients of effective Collaborative Care programs in low- and middle-income countries: A rapid review. Cambridge Prisms: Global Mental Health 10: e11
Whitley R, Shepherd G, Slade M (2019) Recovery colleges as a mental health innovation. World Psychiatry 18(2):141–142
World Health Organisation, W (2021) Peer support mental health services. promoting person-centred and rights-based approaches. World Health Organization, Geneva

The authors declare no competing interests.

Supplementaryfile1PRIZETIDIER.docx
Supplementary File 1 PRIZE TIDIER checklist
Supplementaryfile2TopicGuidesServiceUsersCaregivers.docx
Supplementary File 2 Topic Guides Service Users and Caregivers
Supplementaryfile3ASWsessionfidelitychecklist.docx
Supplementary File 3 Auxiliary Social Worker Session Fidelity Checklist

Developing peer-led recovery groups (PRIZE) for people with psychosis and their caregivers in a low resource South African setting

Status:

Version 1

Abstract

Aim

Methods

Results

Conclusion

Figures

1.1 Introduction

2.1 Methods

2.1.1.Setting

2.1.2 Intervention Development Overview

2.1.3 Step 1 Considering context through consultation and scoping work

2.1.4 Step 2 Developing a programme theory (theory of change) and initial intervention

2.1.6 Step 4 Refining the intervention, developing materials and implementation plan

3.1 Results

3.1.1. Overview

3.1.2. Step 1 Considering context through scoping work and consultation

3.1.3 Step 2 Developing a programme theory (theory of change) and initial intervention

3.1.5 Step 4 Refining the intervention, developing materials and implementation plan

3.1.6 Implementation plan: training, supervision and mentoring

3.1.7 Implementation plan: Strategies to assess and improve intervention fidelity

Discussion

Conclusion

Abbreviations

Declarations

References

Additional Declarations

Supplementary Files

Status:

Version 1