Laura Asher

Summary points: Psychosocial rehabilitation is central to recovery-oriented mental health care, yet its uptake remains uneven because of persistent conceptual, methodological, organisational, and implementation barriers. Greater conceptual clarity is needed through stakeholder dialogue to establish a common set of core principles that can be adapted across diverse cultural and health system contexts. Meaningful co-creation with people with lived experience and their families should be embedded throughout the research and implementation cycle, from priority setting and intervention design to evaluation, scale-up, and dissemination. Evidence synthesis should adopt component-based and mechanism-informed approaches to identify the active components of psychosocial rehabilitation interventions and the mechanisms through which they produce change. Psychosocial rehabilitation should be recognised as a core component of mental healthcare, integrated from first contact and delivered across the continuum of care.

Personal narratives describing lived experiences of the entire spectrum of mental health challenges are now widely available to the public, including through autobiographies from public figures, thematic collections of narratives assembled by mental health organizations, and individual narratives published on video sharing services. Mental health lived experience narratives have been used as an “active ingredient” in interventions intended to create change, such as in campaigns against mental health stigma. In the narrative inquiry research approach, they are used to explore mental health phenomenology. Researchers and organizations working with mental health lived experience narratives have to contend with a wide range of legal and ethical challenges, such as how to handle narratives disclosing sensitive personal information about third parties and the ethical trade-off between preserving narrator autonomy over their presentation of personal identity and protecting narrators from harm due to mental health stigma if a narrator is identifiable in their narrative. In 2022, we formed the Interdisciplinary Consortium on Narratives in Context (ICONIC) of people with knowledge of narrative practices across disciplines. Members are engaged in health research, liberal arts, modern languages, history, and philosophy. In this viewpoint, we present four case studies of narrative practices by ICONIC members: (1) a narrative inquiry into the experiences of Ethiopian citizens with schizophrenia, (2) work to curate and share 2 collections of mental health recovery narratives, (3) an exploration of the use of poetic transcription to condense narrative interviews with mental health content, and (4) the development of safe approaches to working with personal narratives shared through an online mental health peer support service. In presenting these case studies, we focused on documenting decision-making on ethical and legal challenges as the best knowledge on ethical and legal decision-making regarding mental health lived experience narratives may come from integrating knowledge across disciplines. Through reflecting on these case studies, we identified cross-cutting challenges regarding consent processes, narrative analysis, and the interpretation and dissemination of data and findings. These challenges have transdisciplinary and disciplinary-specific features and can be used as a preliminary checklist in research design processes. In presenting what we learned, our intent was to demonstrate that greater knowledge on narrative practices can emerge through interdisciplinary contact and inform future decision-making on narrative practices by researchers working across disciplines. We conclude by contemplating interdisciplinary explorations with the potential to expand knowledge, including examining the use of pathographic narratives in philosophical inquiry.

People with severe mental health conditions (SMHC) and caregivers in South Africa often experience poverty. The PRIZE trial found that recovery groups were acceptable, feasible and potentially effective in reducing relapse. Addressing economic needs was identified as a means to increase impact. This study aimed to understand the acceptability of poverty alleviation interventions as an adjunct to psychosocial interventions.We conducted two focus group discussions and 12 in-depth interviews with 14 people with SMHC and 13 caregivers in Eastern Cape Province, South Africa. An inductive thematic analysis was conducted. We identified four themes. 1: Financial insecurity as a defining influence on life. Participants perceived financial security as crucial to recovery. However, financial insecurity was entrenched due to violence in neighbourhoods and fractured communities. 2: Government disability grants are not a panacea. There were difficulties accessing disability grants. Whilst welcomed, they sometimes caused problems such as family disagreements about how the money was spent. 3: Group savings offer tentative hope if carefully managed. Several caregivers had experiences of community-based credit unions. However, some were fearful of members absconding with funds. Participants emphasised that trust, safety and fairness are essential for successful group savings . 4: Income-generating activities are desired but need capital and come with safety concerns. Many had ideas and motivation for small businesses but needed financial capital. There were concerns that gaining wealth could make one a target of crime. Poverty alleviation interventions could positively impact the wellbeing of people with SMHC in South Africa as an adjunct to psychosocial interventions and psychiatric care. Approaches could include supporting access to social protection or existing savings groups, and nesting new savings groups or income generation initiatives into psychosocial interventions. Any model would need to incorporate mechanisms to ensure participants’ safety and would be enhanced by public health interventions to build social capital and reduce violence.

Introduction: Human papillomavirus (HPV) vaccine prevents over 90% of cervical cancers. In October 2023, Nigeria launched a free HPV vaccination campaign targeting girls aged 9–14 years. Despite removing cost barriers, misinformation about fertility impacts and population control contributed to variable uptake across states. Understanding caregiver decision-making is crucial for improving coverage. This study aimed to explore factors influencing caregivers’ HPV vaccination decisions during Nigeria’s 2023 campaign in Ilorin East Local Government Area, Kwara State. Methods: A qualitative study using focus group discussions (FGDs) was conducted using purposive and snowball sampling. We recruited 41 caregivers (mean age 47 years; 71% female) of eligible girls from urban and rural communities. Five FGDs were conducted: four with vaccine acceptors (n = 35) and one with decliners (n = 6). Discussions were conducted in Yoruba, audio-recorded, transcribed verbatim, and analysed using Braun and Clarke’s reflexive thematic analysis. Ethical approval was obtained from two institutional review boards. Results: Four themes emerged from the analysis. Trust operated at multiple levels: institutional (government programmes), interpersonal (healthcare worker competence), and community (religious/traditional leader endorsement). Historical medical mistrust, intensified by COVID-19 experiences, may have manifested as fertility and population control fears. Personal cancer experiences strongly motivated acceptance, whilst concerns about childhood sexuality influenced timing preferences. Despite free provision, barriers included geographic inequities (remote Fulani-Hausa communities were excluded), language barriers (no Hausa translators), school-based delivery gaps, and indirect costs (transport, time). Caregivers recommended house-to-house campaigns, multilingual services, traditional leader engagement, and permanent vaccination centres. Conclusion: Free vaccine provision is necessary but not sufficient to ensure uptake. Successful HPV vaccination requires rebuilding trust through community engagement, addressing historical medical exploitation concerns, and ensuring equitable access. Integrating these findings into Nigeria’s National Programme on Immunisation could improve coverage from current estimates of 54% to targeted 90%, protecting more girls from cervical cancer whilst respecting community values.

Women with severe mental illnesses (SMI) in low- and middle-income countries (LMICs) appear to have poorer sexual and reproductive health (SRH) compared to women without SMI and men with SMI. Previous research suggests that women with SMI experience higher rates of HIV and other sexually transmitted diseases, sexual violence and variable contraceptive use. This review seeks to identify key barriers and facilitators affecting access to SRH services for women with SMI in LMICs by systematically synthesizing relevant research. A qualitative systematic review was conducted using the Joanna Briggs Institute (JBI) methodology. Electronic searches were made on July 31, 2024, in MEDLINE, EMBASE, PsycINFO and citation tracking covering the period from 2004 to 2024. Studies conducted in LMICs that explored barriers and facilitators for accessing SRH services for women aged 18 years or older diagnosed with SMI were included. Data extraction and methodological quality assessments were completed and findings were compiled using the JBI meta-aggregation approach. The confidence of these findings was evaluated using the ConQual method. Eleven studies met the inclusion criteria. Four synthesized findings were: (a) Variable knowledge of SRH and low risk perception hinder access to SRH care for women with SMI; (b) Service availability shapes access to SRH care for women with SMI; (c) Restricted autonomy and exclusion from health decisions prevent women with SMI from accessing SRH care that reflects their needs and rights; and (d) Stigma and gendered expectations around mental illness and sexuality, reinforced by societal norms, discourage care-seeking for the SRH needs of women with SMI. All of these findings were assessed to have moderate confidence. Women with SMI in LMICs face distinct challenges in accessing SRH services. By considering the multifaceted barriers and facilitators identified in this review, policymakers can create more targeted and equitable interventions that improve accessibility of SRH services for this population.

Background: People with severe mental health conditions (SMHC) and caregivers in South Africa experience high rates of poverty. The PRIZE feasibility trial found that recovery groups were broadly acceptable and feasible and potentially effective in reducing relapse. Addressing economic needs was identified as a means to increase impact. This study aimed to understand experiences of financial insecurity and acceptability of poverty alleviation interventions as an adjunct to psychosocial interventions amongst people with SMHC and caregivers. Methods: We conducted two focus group discussions and 12 in-depth interviews in isiXhosa with a total of 14 people with SMHC and 13 caregivers who had participated in PRIZE in Eastern Cape Province, South Africa. An inductive thematic analysis was conducted. Results: We identified four major themes. Theme 1: Financial insecurity as a defining influence on life: We found that financial security was crucial to recovery, through bringing status and dignity. However, participants experienced substantial financial insecurity, which impacted on social and mental wellbeing. Financial insecurity was entrenched due to fractured and violent communities, cycles of debt and stigma amongst employers. Theme 2: Government disability grants are not a panacea.: Difficulties accessing disability grants included problems attending assessments and rejection of applications. Whilst they were generally welcomed, receipt of disability grants sometimes caused problems such as increased stigma and family disagreements about how the money should be spent. Theme 3: Group savings offer conditional hope if carefully managed.: Several caregivers had longstanding experiences of stokvels (community-based credit unions). However, some were fearful of group members absconding with funds. Participants emphasised that trust, safety and fairness are essential for successful group savings. Theme 4: Income-generating activities are desired but need capital and come with safety concerns: Many had ideas and motivation for small businesses but stressed the need for financial capital, skills training and financial literacy support. There were serious concerns that owning a business or gaining wealth could make one a target of crime. Conclusion: Poverty alleviation interventions could positively impact on the wellbeing of people with SMHC and caregivers in South Africa as an adjunct to psychosocial interventions and psychiatric care. Approaches could include supporting access to social protection or existing savings groups, and nesting new savings groups or income generation initiatives into psychosocial interventions. Any model would need to incorporate robust mechanisms to ensure the safety of participants. All approaches would be enhanced by parallel social and public health interventions to build social capital and reduce violence in neighbourhoods.

Background: Mental health services are most effective and equitable when designed, delivered, and evaluated in collaboration with People With Lived Experience of mental health conditions (PWLE). However, PWLE are rarely involved in health systems strengthening, and when they are, it is limited to specific components (e.g., peer helpers) rather than multi-tiered collaboration in the full continuum of home to community to facility based services. Moreover, programs that do involve PWLE typically involve people with a history of substance use conditions or common mental disorders. The collaboration of People With Lived Experience of Psychosis (PWLP) is especially rare. Therefore, we aim to explore the feasibility of collaborating with PWLP for health systems strengthening in this feasibility trial. Methods: This pilot cluster randomized controlled feasibility trial will randomize 36 health facilities to a standard implementation arm where primary care workers (PCW) will be trained by mental health specialists (control), or a collaborative care model with added co-facilitation of PCW trainings by PWLP as well as home visits by PWLP to service users (intervention). The intervention condition is referred to as “Strengthening CAre in collaboration with People with lived Experience of psychosis in Uganda” (SCAPE-U). The 36 health facilities will be distributed across six clusters with three clusters in each arm. PhotoVoice will be used to train PWLP to be co-facilitators of PCW training and provide home-based support to service users in the intervention arm. The primary outcomes of the feasibility trial will be the feasibility, acceptability, and safety of collaborating with PWLP. Data will also be collected on individual-level outcomes for PCWs, and service users to inform the feasibility of data collection and obtain effect size estimates. Discussion: Findings from this feasibility trial will inform a fully powered trial to evaluate the benefits of an implementation strategy characterized by collaboration with PWLP across the continuum of healthcare services. Trial registration: ClinicalTrials.gov. number: NCT05863572. Date of registration: May 18, 2023. URL of trial registry record: https://clinicaltrials.gov/study/NCT05863572?term=NCT05863572&rank=1.

Background: In low- and middle-income countries (LMIC) such as South Africa, people with severe mental health conditions (SMHC) typically reside with family members, who serve as their primary caregivers. This study aimed to explore the lived experiences, needs and coping strategies of caregivers with a family member with SMHC in a low-resource setting in South Africa, and their perspectives on the provision of a support group programme. Methods: An exploratory qualitative study was conducted, which included 22 in-depth individual interviews, 15 of them being females and 7 males ranging from 26 to 72 years of age. These caregivers were recruited through the service user presenting at the health facility. The interview guide covered caregiving experiences, coping strategies, perceptions on recovery, and acceptability of peer-led mutual support groups. Written informed consent was obtained before conducting interviews. Interviews were audio recorded, translated from isiXhosa to English and transcribed. Thematic analysis using NVivo 12 was used to analyze findings. Results: Caregivers reported being socially excluded from family and community gatherings, as well as experiencing financial and emotional hardship because of their responsibilities. This influenced their overall well-being and ability to cope. Inadequate time for their own social activities and fulfilment were frequently described, and this was linked to their level of responsibility for the needs of others in their homes, as caregiving obligations were rarely shared among family members. Although some caregivers had developed ways to cope, such as hobbies and spiritual endeavours, some nevertheless reported less healthy coping strategies, including alcohol use. Whilst most caregivers indicated they would be interested in a peer-led mutual support programme, some said they would not be able to participate because of work or other responsibilities. Conclusion: Caregivers of people with SMHC in South Africa face considerable challenges, and supportive interventions are needed. Peer-led mutual support groups may hold the potential for providing this support.

Peer-led recovery groups for people with psychosis in South Africa (PRIZE): results of a randomized controlled feasibility trial – CORRIGENDUM - Volume 34