COVID-19 experience of people with severe mental health conditions and families in South Africa

BACKGROUND: People with severe mental health conditions, such as schizophrenia, and their family caregivers are underserved in low- and middle-income countries where structured psychosocial support in the community is often lacking. This can present challenges to recovery and for coping with additional strains, such as a pandemic.AIM: This study explored the experiences and coping strategies of people with lived experience of a severe mental health condition, and family caregivers, in South Africa during the initial stages of the coronavirus disease 2019 (COVID-19) pandemic.SETTING: This qualitative study was conducted in the Nelson Mandela Bay District, Eastern Cape, South Africa, in the most restrictive period of the COVID-19 lockdown.METHODS: Telephonic qualitative interviews were conducted with people with lived experience ( n = 14) and caregivers ( n = 15). Audio recordings were transcribed and translated to English from isiXhosa. Thematic analysis was conducted with NVivo 12. RESULTS: Participants described negative impacts including increased material hardship, intensified social isolation and heightened anxiety, particularly among caregivers who had multiple caregiving responsibilities. Coping strategies included finding ways to not only get support from others but also give support, engaging in productive activities and taking care of physical health. The main limitation was inclusion only of people with access to a telephone.CONCLUSION: Support needs for people with severe mental health conditions and their families should include opportunities for social interaction and sharing coping strategies as well as bolstering financial security.CONTRIBUTION: These findings indicate that current support for this vulnerable group is inadequate, and resource allocation for implementation of additional community-based, recovery-focused services for families must be prioritised.</p

Peer-led recovery groups for people with psychosis in South Africa (PRIZE):protocol for a randomised controlled feasibility trial

Background: The available care for people with psychosis in South Africa is inadequate to support personal recovery. Group peer support interventions are a promising approach to foster recovery, but little is known about the preferences of service users, or the practical application of this care model, in low- and middle-income countries (LMIC). This study aims to assess the acceptability and feasibility of integrating peer-led recovery groups for people with psychosis and their caregivers in South Africa into existing systems of care, and to determine key parameters in preparation for a definitive trial. Methods: The study is set in Nelson Mandela Bay Metropolitan district of the Eastern Cape Province, South Africa. The design is an individually randomised parallel group feasibility trial comparing recovery groups in addition to treatment as usual (TAU) with TAU alone in a 1:1 allocation ratio. We aim to recruit 100 isiXhosa-speaking people with psychosis and 100 linked caregivers. TAU comprises anti-psychotic medication-focused outpatient care. The intervention arm will comprise seven recovery groups, including service users and caregiver participants. Recovery groups will be delivered in two phases: a 2-month phase facilitated by an auxiliary social worker, then a 3-month peer-led phase. We will use mixed methods to evaluate the process and outcomes of the study. Intervention acceptability and feasibility (primary outcomes) will be assessed at 5 months post-intervention start using qualitative data collected from service users, caregivers, and auxiliary social workers, along with quantitative process indicators. Facilitator competence will be assessed with the GroupACT observational rating tool. Trial procedures will be assessed, including recruitment and retention rates, contamination, and validity of quantitative outcome measures. To explore potential effectiveness, quantitative outcome data (functioning, unmet needs, personal recovery, internalised stigma, health service use, medication adherence, and caregiver burden) will be collected at baseline, 2 months, and 5 months post-intervention start. Discussion: This study will contribute to the sparse evidence on the acceptability and feasibility of peer-led and recovery-oriented interventions for people with psychosis in LMIC when integrated into existing care systems. Results from this feasibility trial will inform preparations for a definitive trial and subsequent larger-scale implementation. Trial registration: Pan-African Clinical Trials Register PACTR202202482587686. Registered on 28 February 2022. https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=21496

Systematic review of feasibility and acceptability of psychosocial interventions for schizophrenia in low and middle income countries

Abstract Background In low and middle income countries there is evidence to suggest effectiveness of community-based psychosocial interventions for schizophrenia. Many psychosocial interventions have however been conceptualized in high income countries and assessing their feasibility and acceptability in low and middle income countries is pertinent and the objective of this review. Methods Six databases were searched using search terms (i) “Schizophrenia”; (ii) “Low and middle income or developing countries” and (iii) “Psychosocial interventions”. Abstracts identified were extracted to an EndNote Database. Two authors independently reviewed abstracts according to defined inclusion and exclusion criteria. Full papers were accessed of studies meeting these criteria, or for which more information was needed to include or exclude them. Data were extracted from included studies using a predesigned data extraction form. Qualitative synthesis of qualitative and quantitative data was conducted. Results 14 037 abstracts were identified through searches. 196 full articles were reviewed with 17 articles meeting the inclusion criteria. Little data emerged on feasibility. Barriers to feasibility were noted including low education levels of participants, unavailability of caregivers, and logistical issues such as difficulty in follow up of participants. Evidence of acceptability was noted in high participation rates and levels of satisfaction with interventions. Conclusions While there is preliminary evidence to suggest acceptability of community-based psychosocial interventions for schizophrenia in low and middle income countries, evidence for overall feasibility is currently lacking. Well-designed intervention studies incorporating specific measures of acceptability and feasibility are needed

COVID-19 experience of people with severe mental health conditions and families in South Africa

Background: People with severe mental health conditions, such as schizophrenia, and their family caregivers are underserved in low- and middle-income countries where structured psychosocial support in the community is often lacking. This can present challenges to recovery and for coping with additional strains, such as a pandemic.Aim: This study explored the experiences and coping strategies of people with lived experience of a severe mental health condition, and family caregivers, in South Africa during the initial stages of the coronavirus disease 2019 (COVID-19) pandemic.Setting: This qualitative study was conducted in the Nelson Mandela Bay District, Eastern Cape, South Africa, in the most restrictive period of the COVID-19 lockdown.Methods: Telephonic qualitative interviews were conducted with people with lived experience (n = 14) and caregivers (n = 15). Audio recordings were transcribed and translated to English from isiXhosa. Thematic analysis was conducted with NVivo 12.Results: Participants described negative impacts including increased material hardship, intensified social isolation and heightened anxiety, particularly among caregivers who had multiple caregiving responsibilities. Coping strategies included finding ways to not only get support from others but also give support, engaging in productive activities and taking care of physical health. The main limitation was inclusion only of people with access to a telephone.Conclusion: Support needs for people with severe mental health conditions and their families should include opportunities for social interaction and sharing coping strategies as well as bolstering financial security.Contribution: These findings indicate that current support for this vulnerable group is inadequate, and resource allocation for implementation of additional community-based, recovery-focused services for families must be prioritised

Peer-led recovery groups for people with psychosis in South Africa (PRIZE): protocol for a randomized controlled feasibility trial

BackgroundThe available care for people with psychosis in South Africa is inadequate to support personal recovery. Group peer support interventions are a promising approach to foster recovery, but little is known about the preferences of service users, or the practical application of this care model, in low and middle-income countries (LMIC). This study aims to assess the acceptability and feasibility of integrating peer-led recovery groups for people with psychosis and their caregivers in South Africa into existing systems of care, and to determine key parameters in preparation for a definitive trial.MethodsThe study is set in Nelson Mandela Bay Metropolitan district of the Eastern Cape Province, South Africa. The design is an individually randomised parallel group feasibility trial comparing recovery groups in addition to treatment as usual (TAU) with TAU alone in a 1:1 allocation ratio. We aim to recruit 100 isiXhosa-speaking people with psychosis and 100 linked caregivers. TAU comprises anti-psychotic medication-focused outpatient care. The intervention arm will comprise seven recovery groups, including service users and caregiver participants. Recovery groups will be delivered in two phases: a 2-month phase facilitated by an auxiliary social worker, then a 3-month peer led phase. We will use mixed methods to evaluate the process and outcomes of the study. Intervention acceptability and feasibility (primary outcomes) will be assessed at 5 months post-intervention start using qualitative data collected from service users, caregivers and auxiliary social workers, along with quantitative process indicators. Facilitator competence will be assessed with the GroupACT observational rating tool. Trial procedures will be assessed, including recruitment and retention rates, contamination, and validity of quantitative outcome measures. To explore potential effectiveness, quantitative outcome data (functioning, unmet needs, personal recovery, internalised stigma, health service use, medication adherence and caregiver burden) will be collected at baseline, 2 months and 5 months post-intervention start. DiscussionThis study will contribute to the sparse evidence on the acceptability and feasibility of peer-led and recovery-oriented interventions for people with psychosis in LMIC when integrated into existing care systems. Results from this feasibility trial will inform preparations for a definitive trial and subsequent larger scale implementation.Trial registrationRegistered at Pan-African Clinical Trials Register on 28th February 2022. PACTR202202482587686. https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=2149

Colorectal cancer incidences in Lynch syndrome: a comparison of results from the prospective lynch syndrome database and the international mismatch repair consortium

Objective To compare colorectal cancer (CRC) incidences in carriers of pathogenic variants of the MMR genes in the PLSD and IMRC cohorts, of which only the former included mandatory colonoscopy surveillance for all participants. Methods CRC incidences were calculated in an intervention group comprising a cohort of confirmed carriers of pathogenic or likely pathogenic variants in mismatch repair genes (path_MMR) followed prospectively by the Prospective Lynch Syndrome Database (PLSD). All had colonoscopy surveillance, with polypectomy when polyps were identified. Comparison was made with a retrospective cohort reported by the International Mismatch Repair Consortium (IMRC). This comprised confirmed and inferred path_MMR carriers who were first- or second-degree relatives of Lynch syndrome probands. Results In the PLSD, 8,153 subjects had follow-up colonoscopy surveillance for a total of 67,604 years and 578 carriers had CRC diagnosed. Average cumulative incidences of CRC in path_MLH1 carriers at 70 years of age were 52% in males and 41% in females; for path_MSH2 50% and 39%; for path_MSH6 13% and 17% and for path_PMS2 11% and 8%. In contrast, in the IMRC cohort, corresponding cumulative incidences were 40% and 27%; 34% and 23%; 16% and 8% and 7% and 6%. Comparing just the European carriers in the two series gave similar findings. Numbers in the PLSD series did not allow comparisons of carriers from other continents separately. Cumulative incidences at 25 years were < 1% in all retrospective groups. Conclusions Prospectively observed CRC incidences (PLSD) in path_MLH1 and path_MSH2 carriers undergoing colonoscopy surveillance and polypectomy were higher than in the retrospective (IMRC) series, and were not reduced in path_MSH6 carriers. These findings were the opposite to those expected. CRC point incidence before 50 years of age was reduced in path_PMS2 carriers subjected to colonoscopy, but not significantly so

An original phylogenetic approach identified mitochondrial haplogroup T1a1 as inversely associated with breast cancer risk in BRCA2 mutation carriers

Introduction: Individuals carrying pathogenic mutations in the BRCA1 and BRCA2 genes have a high lifetime risk of breast cancer. BRCA1 and BRCA2 are involved in DNA double-strand break repair, DNA alterations that can be caused by exposure to reactive oxygen species, a main source of which are mitochondria. Mitochondrial genome variations affect electron transport chain efficiency and reactive oxygen species production. Individuals with different mitochondrial haplogroups differ in their metabolism and sensitivity to oxidative stress. Variability in mitochondrial genetic background can alter reactive oxygen species production, leading to cancer risk. In the present study, we tested the hypothesis that mitochondrial haplogroups modify breast cancer risk in BRCA1/2 mutation carriers. Methods: We genotyped 22,214 (11,421 affected, 10,793 unaffected) mutation carriers belonging to the Consortium of Investigators of Modifiers of BRCA1/2 for 129 mitochondrial polymorphisms using the iCOGS array. Haplogroup inference and association detection were performed using a phylogenetic approach. ALTree was applied to explore the reference mitochondrial evolutionary tree and detect subclades enriched in affected or unaffected individuals. Results: We discovered that subclade T1a1 was depleted in affected BRCA2 mutation carriers compared with the rest of clade T (hazard ratio (HR) = 0.55; 95% confidence interval (CI), 0.34 to 0.88; P = 0.01). Compared with the most frequent haplogroup in the general population (that is, H and T clades), the T1a1 haplogroup has a HR of 0.62 (95% CI, 0.40 to 0.95; P = 0.03). We also identified three potential susceptibility loci, including G13708A/rs28359178, which has demonstrated an inverse association with familial breast cancer risk. Conclusions: This study illustrates how original approaches such as the phylogeny-based method we used can empower classical molecular epidemiological studies aimed at identifying association or risk modification effects.Peer reviewe