Service providers' perspectives on the challenges of informal caregiving and the need for caregiver-orientated mental health services in rural South Africa: A descriptive study.

Informal caregivers of persons with mental disorders encounter various challenges in their role of caregiving. As such, they require support to enable them to cope with the demands of their caregiving. There is comprehensive evidence on the experiences of burden among informal caregivers in mental health; however, there is a limited number of studies that report on the mental health services aimed specifically at supporting informal caregivers in their role. To address this gap, this study aimed to explore the perspectives of the service providers regarding the challenges encountered by informal caregivers and the mental health services available to support these caregivers. Semi-structured interviews were conducted with mental health coordinators at provincial, district, and sub-district level and mental health professionals from a district hospital. Focus group discussions were conducted with primary healthcare supervisors and community health workers in Bushbuckridge municipality, South Africa at participants' workplaces and sub-district offices. Semi-structured interviews and focus group guides with semi-structured questions were used to direct data collection in August 2022-January 2023. All interviews were audio recorded and transcribed verbatim. Reflexive thematic inductive analysis was conducted using NVivo 12 software. Three themes were identified, namely perceived caregiving consequences and related factors, current state of mental health services, and factors affecting delivery of informal caregiver mental health services. The service providers acknowledged the negative consequences faced by informal caregivers. This includes the experience of caregiver burden which was attributed to the uncooperative and violent behaviours exhibited by the mental health care users. The current state of formal and informal community mental health services was described and considered inadequate to meet informal caregivers' needs. Various personal, health system, and contextual factors influencing the provision of caregiver-orientated services were identified. The findings revealed the need for intersectoral collaborations between hospital-based and community-based mental health service providers, and community stakeholders to ensure provision of user-friendly and accessible mental health services for informal caregivers.

Caring by default: experiences of caregivers of children with developmental disabilities in Ghana mirrored in the context of the stress process model.

BACKGROUND: Caring for a child with developmental disabilities (DD) is associated with significant stress and burden. Caregivers' experiences are influenced by factors such as poverty, stigma, and the lack of accessibility to services, equipment, and assistive devices. These factors are prevalent in a low-resource setting like Ghana which ultimately influences the experiences of caregivers. The aim of the study was to explore the experiences of caregivers of children with DD in the context of the Stress Process Model. METHODS: The study employed a descriptive phenomenological design Caregivers of children with DD attending the Neurodevelopmental Clinic of a Teaching Hospital were purposively sampled. Data collection involved semi-structured interviews, reaching saturation with 14 participants. The interviews were audio-recorded transcribed verbatim and analysed using thematic analysis. RESULTS: Four main themes emerged: perception of caregiving, stressors faced by caregivers, negative health outcomes and coping strategies. Perception of caregiving had two sub-themes as stressful nature of caregiving and time-consuming. Six sub-themes were linked to stressors faced by caregivers: the child's ADL needs, communication barrier, managing challenging behaviour, child's health needs, unmet educational needs, and economic burden. Negative health outcomes had three sub-themes: decline in physical, mental and social well-being. While some caregivers used maladaptive coping strategies like blaming, others employed adaptive coping strategies like religious coping through prayer, self-encouragement and support from other family members. CONCLUSION: The study highlights the complex interaction between caregivers' perception of their caregiving situation, the stressors they experience, their coping resources,  and the negative health outcomes associated with caregiving. These findings underscore the need for context-specific caregiver programmes to mitigate the negative impacts of caregiving.

Health effects of caregiving and coping with severe mental disorders: A caregivers' experience.

Background: Informal caregivers are an essential health resource in the care of persons with severe mental disorders, particularly in South Africa where access to mental healthcare services is limited. Aim: The study aimed to explore and describe the coping strategies used by informal caregivers and the specific health impacts they face in the context of severe mental disorders in South Africa. Setting: The study was conducted in Bushbuckridge municipality situated in the northeastern parts of Mpumalanga province, South Africa. Methods: A descriptive qualitative methodology was used to conduct semi-structured interviews with 12 purposefully selected participants. Audio-recorded interviews were translated, transcribed and analysed inductively on NVivo12 using reflexive thematic analysis. Results: The themes identified were caregivers' experience of consequences of caregiving and caregivers' experience of coping with their caregiving role. Participants experienced negative consequences on their emotional, mental and physical health. The participants use internal and external resources to cope with the challenges they face, and many highlighted using emotion-focused coping strategies. Conclusion: The findings revealed an urgent need to develop support strategies to strengthen informal caregivers' coping and promote good health particularly in rural South Africa where informal caregivers play a crucial role in the management of severe mental disorders. Contribution: The finding demands that policymakers and healthcare providers prioritise the health and well-being of the informal caregivers. There should be policies targeted specifically at developing and implementing caregiver-orientated healthcare services.

A qualitative analysis of community health worker perspectives on the implementation of the preconception and pregnancy phases of the Bukhali randomised controlled trial.

Community health workers (CHWs) play an important role in health systems in low- and middle-income countries, including South Africa. Bukhali is a CHW-delivered intervention as part of a randomised controlled trial, to improve the health trajectories of young women in Soweto, South Africa. This study aimed to qualitatively explore factors influencing implementation of the preconception and pregnancy phases of Bukhali, from the perspective of the CHWs (Health Helpers, HHs) delivering the intervention. As part of the Bukhali trial process evaluation, three focus group discussions were conducted with the 13 HHs employed by the trial. A thematic approach was used to analyse the data, drawing on elements of a reflexive thematic and codebook approach. The following six themes were developed, representing factors impacting implementation of the HH roles: interaction with the existing public healthcare sector; participant perceptions of health; health literacy and language barriers; participants' socioeconomic constraints; family, partner, and community views of trial components; and the HH-participant relationship. HHs reported uses of several trial-based tools to overcome implementation challenges, increasing their ability to implement their roles as planned. The relationship of trust between the HH and participants seemed to function as one important mechanism for impact. The findings supported a number of adaptations to the implementation of Bukhali, such as intensified trial-based follow-up of referrals that do not receive management at clinics, continued HH training and community engagement parallel to trial implementation, with an increased emphasis on health-related stigma and education. HH perspectives on intervention implementation highlighted adaptations across three broad strategic areas: navigating and bridging healthcare systems, adaptability to individual participant needs, and navigating stigma around disease. These findings provide recommendations for the next phases of Bukhali, for other CHW-delivered preconception and pregnancy trials, and for the strengthening of CHW roles in clinical settings with similar implementation challenges. Trial registration: Pan African Clinical Trials Registry; PACTR201903750173871, Registered March 27, 2019.

The role of a community health worker-delivered preconception and pregnancy intervention in achieving a more positive pregnancy experience: the Bukhali trial in Soweto, South Africa.

BACKGROUND: A patient-centered, human-rights based approach to maternal care moves past merely reducing maternal mortality and morbidity, towards achieving a positive pregnancy experience. When evaluating an intervention, particularly in the context of the complex challenges facing maternal care in South Africa, it is therefore important to understand how intervention components are experienced by women. We aimed to qualitatively explore (i) factors influencing the pregnancy and postpartum experience amongst young women in Soweto, South Africa, and (ii) the influence of Bukhali, a preconception, pregnancy, and early childhood intervention delivered by community health workers (CHWs), on these experiences. METHODS: Semi-structured, in-depth interviews were conducted with 15 purposively sampled participants. Participants were 18-28-year-old women who (i) were enrolled in the intervention arm of the Bukhali randomized controlled trial; (ii) were pregnant and delivered a child while being enrolled in the trial; and (iii) had at least one previous pregnancy prior to participation in the trial. Thematic analysis, informed by the positive pregnancy experiences framework and drawing on a codebook analysis approach, was used. RESULTS: The themes influencing participants' pregnancy experiences (aim 1) were participants' feelings about being pregnant, the responsibilities of motherhood, physical and mental health challenges, unstable social support and traumatic experiences, and the pressures of socioeconomic circumstances. In terms of how support, information, and care practices influenced these factors (aim 2), four themes were generated: acceptance and mother/child bonding, growing and adapting in their role as mothers, receiving tools for their health, and having ways to cope in difficult circumstances. These processes were found to be complementary and closely linked to participant context and needs. CONCLUSION: Our findings suggest that, among women aged 18-28, a CHW-delivered intervention combining support, information, and care practices has the potential to positively influence women's pregnancy experience in South Africa. In particular, emotional support and relevant information were key to better meeting participant needs. These findings can help define critical elements of CHW roles in maternal care and highlight the importance of patient-centred solutions to challenges within antenatal care. TRIAL REGISTRATION: Pan African Clinical Trials Registry PACTR201903750173871, 27/03/2019.

Strategies to Alleviate the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Low- and Middle-Income Countries: Scoping Review.

BACKGROUND: There is considerable evidence of the burden of care encountered by informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. Previous studies have highlighted the need to support these informal caregivers as key players in the care of these patients. To date, limited evidence exists on the extent and types of strategies for supporting these informal caregivers in low- and middle-income countries. OBJECTIVE: This scoping review aims to identify and describe the extent and type of evidence on the existing strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. METHODS: A systematic literature search was completed following the Joanna Briggs Institute methodology for scoping reviews. The participants, concept, and context framework was used to guide the search for literature sources across 5 databases: PubMed, MEDLINE, CINAHL, and PsycINFO for published literature and ProQuest for unpublished literature. This review included studies that reported on strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions, with a focus on studies that evaluated or recommended caregiver interventions and support strategies in low- and middle-income countries. The search was limited to studies conducted between 2001 and 2021, and only papers written in English were considered for inclusion. Using the Covidence software (Veritas Health Innovation), 2 reviewers independently screened the papers, applied the inclusion and exclusion criteria, and met biweekly to discuss and resolve conflicts. The relevant studies and reported outcomes were summarized, organized, and analyzed descriptively using numeric summary analysis and deductive content analysis. RESULTS: Of the 18,342 studies identified, 44 (0.24%) met the inclusion criteria. The included studies were from 16 low- and middle-income countries in Asia, Africa, Europe, and South and North America. Most studies (21/44, 48%) were randomized controlled trials conducted in Asian countries. The identified strategies were grouped into 2 categories: implemented and recommended intervention strategies. Identified strategies included community-based interventions, psychoeducation interventions, support groups, cognitive behavioral therapy, spirituality-based interventions, and smartphone-based interventions. In addition, mindfulness and empowerment, collaborative interventions, standard care, financial and social support, counseling, occupation-based interventions, policy and legislature, and access to mental health care were identified. Psychoeducation and support group interventions were identified as common strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions. CONCLUSIONS: This review provides evidence on the types of implemented and recommended strategies for alleviating the burden of care among informal caregivers in low- and middle-income countries. Although psychoeducational interventions were the most preferred strategy for alleviating burden, their benefits were short-lived when compared with peer-led support groups. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/44268.

Strategies for Alleviating the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Transitional Countries: Protocol for a Scoping Review.

BACKGROUND: Caregiver burden is highly prevalent among the informal caregivers of persons with severe mental disorders (SMDs). As such, strategies to support informal caregivers are necessary to enable them to cope with their caregiving role. Currently, there is limited evidence on the extent of existing strategies for supporting informal caregivers of persons with SMDs in transitional countries. OBJECTIVE: This study presents a scoping review protocol to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. METHODS: This scoping review will be conducted using the Joanna Briggs Institute's methodology for scoping reviews. The participants, concept, and context framework will be used to select relevant studies. This review will include studies on strategies for addressing caregiver burden among informal caregivers, with a specific focus on studies outlining caregiver interventions, caregiver support, and policies with strategies for supporting informal caregivers of persons with SMDs. Relevant studies conducted in transitional countries will be considered for inclusion. There will be no restrictions on publication type or design. Published literature will be accessed by searching electronic databases, including PubMed, MEDLINE, CINAHL, and PsycINFO; ProQuest will be used to access gray literature. Additionally, the reference lists of key studies will be reviewed to identify studies for inclusion. The search will be restricted to articles published between 2011 and 2021. Two reviewers will work independently to screen all abstracts and full texts for inclusion in line with the set inclusion criteria. Extracted data will be categorized and described using descriptive qualitative content analysis. RESULTS: This protocol will guide a scoping review to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. The main results of this scoping review will synthesize evidence from peer-reviewed and gray literature sources outlining various services and interventions for supporting informal caregivers of people with SMDs in transitional countries. In addition, existing gaps in the literature will be identified to inform future studies. CONCLUSIONS: The increase in caregiver burden among informal caregivers in mental health warrants the development and implementation of strategies for alleviating the burden. This scoping review aims to increase awareness on the various services and intervention strategies for alleviating burden among informal caregivers in transitional countries. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/44268.

Extent of caregiver burden among informal caregivers of persons with severe mental disorders in rural South Africa.

INTRODUCTION: Informal caregivers are the backbone of recovery for people with severe mental disorders in South Africa, particularly in rural areas where access to mental health services is limited. While their unique contribution and the subsequent burden arising from occupying the role of informal caregiver are acknowledged, there is limited evidence on the extent of the subjective and objective burdens among informal caregivers of people with severe mental disorders in rural areas. This article reports on a study that aimed to establish the extent of subjective and objective burdens among informal caregivers of people with severe mental disorders in rural South Africa. METHODS: A descriptive quantitative cross-sectional design was used. Data were gathered through structured interviews with 170 informal caregivers of people with severe mental disorders attending an outpatient clinic at a rural hospital in South Africa. A structured questionnaire guided the interviews and included demographics and caregiving characteristic information. Montgomery, Gonyea and Hooyman's scale was used to assess objective and subjective burdens. Data was analysed descriptively using Stata v15. RESULTS: The majority of the participants were female informal caregivers (83.5%) between the ages of 45 and 64 years (45.3%), and parents represented the largest proportion (45.3%) of caregivers. The global burden scores revealed that most informal caregivers reported moderate-to-severe objective burden and mild-to-moderate subjective burden. Significant associations with objective burden were established for age, gender and residence (p=0.025, p=0.034 and p=0.038, respectively), and subjective burden yielded significant associations with daily caregiving (p=0.012). CONCLUSION: Caring for people with severe mental disorders is associated with high levels of objective and subjective burdens. The present study highlights the need to integrate the assessment of burdens among informal caregivers of people with severe mental disorders in routine clinical practice. Additionally, the study urgently calls for the development of strategies to support informal caregivers to ensure successful community reintegration among people with severe mental disorders.

Well-being focused interventions for caregivers of children with developmental disabilities: a scoping review protocol.

INTRODUCTION: Children with developmental disability (DD) may depend on their family caregivers to fulfil their complex health needs. Family caregivers are generally described as persons providing unpaid for services for the child with DD at home who need to be supported in a manner that supports and promotes his/her well-being. This review aims to identify and map the range of interventions available for caregivers of children between the ages of 5-16 with DD. METHODS AND ANALYSIS: The methodological framework for conducting scoping review as published by Arksey and O'Malley and the Joanna Briggs Institute's guidelines will used in this study. Primary research articles will be obtained through a systematic search of CINAHL, Psych INFO, PubMed, ERIC and COCHRANE Library. Further grey literature will be obtained from Google Scholar search. Study selection process will be done by two independent researchers based on a predetermined inclusion criteria. Review findings comprising interventions, intervention components and outcomes will be presented using tables and narrative text. DISCUSSION: The proposed scoping review will give an extensive review of interventions aimed at improving the well-being of caregivers of children with DD. This scoping review would provide recommendations on interventions that have significantly improved the well-being caregivers of children with DD. Additionally, the review would guide future work on intervention development and primary research in this field. REGISTRATION: This scoping review protocol has been registered with the Open Science Framework (https://osf.io/tkbrh).