Setting

This study took place in Bushbuckridge municipality situated in Ehlanzeni district in the north-eastern rural part of Mpumalanga province, South Africa. This municipality has a population size of 546 215 [35]. There is one regional hospital, two district hospitals, and 34 primary health clinics situated within Bushbuckridge municipality. Currently, the regional and one district hospital offer 72-hour observation services, and the other district hospital has a mental health unit, which is the largest in the entire Mpumalanga province with a 50-bed capacity. This mental health unit offers in- and outpatient services to MHCUs with variety of mental disorders, ranging from acute to chronic and forensic cases. Therefore, all persons with SMDs requiring long-term and/or in-patient care are referred to this facility for further management. Once discharged to the care of their families, MHCUs are referred to primary health clinics to collect their psychotropic medications. The primary health clinics are organised into clusters with five clinics per area. A cluster refers to a group of clinics supervised by the same primary healthcare supervisor [36]. The clinics are nursed-led.

Participants

Twenty-nine mental health service providers were purposively selected to participate in this study. To be selected for this study, participants needed to be over 18 years of age and be employed in their current position for longer than six months.

Data collection

Once all relevant consent and permissions were obtained, data were gathered between August 2022 and January 2023 using semi-structured interviews and focus groups. Conducting individual semi-structured interviews and focus groups was necessary for capturing the perspectives of multiple service providers across the various levels of care. A focus group was considered a convenient and cost-effective way of gathering data from the service providers. This allowed for an in-depth exploration of the challenges experienced by informal caregivers at the community level and the current mental health services for supporting informal caregivers.

The first author (OS), who served as the primary investigator conducted semi-structured interviews under the guidance of two research supervisors (FA and NGN). Prior to data collection, the PI attended a qualitative methodology workshop, which equipped her with skills to conduct semi-structured interviews and qualitative data analysis using an NVivo software. Upon the commencement of data collection, the primary investigator contacted all potential participants telephonically, informed them of the purpose of the study, and invited them to participate. All approached participants agreed to engage in the study. A convenient date, time, and place were identified for the interviews; the semi-structured interviews ran for a maximum of one hour. All participants preferred that the interviews be conducted in their workplace, which allowed for flexibility and an in-depth understanding of the context. Interviews were conducted in a private space to give the participants an opportunity to freely express themselves.

Prior to the interviews, the researcher went through the information sheet detailing the purpose of the study. Three semi-structured interviews were conducted with four mental health coordinators at the provincial, district and sub-district level. This was followed by four semi-structured interviews that were conducted with the mental health professionals including a medical officer, nursing manager, a social worker and two occupational therapists. Of the seven interviews conducted, one was conducted with two mental health coordinators, and another was conducted with two occupational therapists. These interviews were conducted together for the convenience of the participants. Data were collected until saturation was reached. To assess data saturation, code frequency counts were employed by reviewing each interview transcript following each interview and keeping track of the new codes in each transcript to determine their frequency. Data saturation was assumed once the frequency of the new codes diminished [37]. An interview guide and demographic questionnaire were used. The development of the demographic questionnaire and interview guide was informed by literature [38]. Participants were invited to share their views on the challenges of informal caregiving and the mental health services for supporting the informal caregivers in their role. The first open-ended question aimed to capture the generic perspectives of the service providers on the observations they have made about the people who are taking care of people with mental disorders within the community. This was followed by questions aimed specifically at exploring the service providers’ perspectives regarding the burden of care and the formal and informal community mental health services for supporting informal caregivers of persons with SMDs.

For convenience to the participants, two focus group discussions were conducted concurrently, thus requiring two separate teams to facilitate. The first team comprised of the primary investigator and the minute taker, and the second team had a skilled focus group facilitator and a minute taker. The primary investigator arranged for the focus groups through the Bushbuckridge sub-district coordinator. The focus groups were planned to coincide with the primary healthcare supervisors’ monthly meeting. Two focus groups were conducted with the primary healthcare supervisors and CHWs. The primary investigator facilitated a focus group with the CHWs, and an identified skilled moderator facilitated the focus group with the primary healthcare supervisors. To ensure uniformity, the two focus group facilitators had meetings prior to data collection to discuss the processes that were to be to be followed during the discussions. A semi-structured focus group guide was developed to ensure consistency in the facilitation of the focus groups and to guide the exploration of the perspectives of the participants regarding the challenges of informal caregiving and the mental health services for supporting informal caregivers. To ensure validity of the questions the focus group guide was reviewed by four experts, which includes two lecturers, a staff nurse and an occupational therapist who are experienced in mental health. The discussions started with an open-ended question aimed to capture perspectives of the participants on the observations they have made about the people who are taking care of people with mental disorders within the community. This was followed by questions aimed specifically at exploring the service providers’ perspectives regarding the burden of care and the formal and informal community mental health services for supporting informal caregivers of persons with SMDs. The sessions ran concurrently in separate venues within the Bushbuckridge sub-district offices. Data collection ceased after 1.5 hours when data saturation was reached i.e. when there was limited new information emerging from the discussion in the group. Debriefing was done between the two teams who conducted the focus groups and field notes were captured to add to the details of the interviews. Prior to data collection, written informed consent was obtained from all participants to grant permission for participation and audio recording of the interviews and focus groups. The interviews and one focus group were conducted in English. The CHWs’ focus group was conducted in Xitsonga, which is the first language of the participants and interviewer. All interviews were audio-recorded, transcribed, and translated to English by a language specialist who works as a researcher at a research entity situated in Bushbuckridge municipality. In preparation for data analysis, the primary investigator listened to the audio recording while concurrently reading the transcripts. Where necessary corrections and omissions were addressed to ensure accuracy in data translation.

Data analysis

Transcriptions were uploaded onto NVivo 12 software for analysis. A six-phase reflexive thematic inductive approach proposed by Braun and Clarke [39] was used to systematically analyse the data. This enabled the researchers to find meanings and patterns within the data [39]. The primary investigator (OS) conducted data familiarisation by reading and re-reading the transcripts while concurrently listening to the recordings. Familiarisation notes were made, and these provided guidance for generating ideas for codes. Systematic coding was conducted inductively by the PI, and each code was assigned a description to ensure consistency. The PI then grouped the generated codes together to form patterns that led to the generation of initial subthemes and themes. The refining and renaming of themes were done by reading the coded extracts to ensure they merged coherently into a pattern to form a specific theme. Additionally, the data set and familiarisation notes were read to ensure no codes were missed and to check the validity of the themes. To ensure trustworthiness, an audit trail of the analysis process was conducted by an experienced qualitative researcher. To promote the quality and truthfulness of findings, peer briefings and presentation of findings were done with the two research supervisors (FA and NGN). Member checking was conducted by sharing the transcripts with the participants who were then given an opportunity to comment and add any information that they feel may have been omitted. Keeping a reflexive journal enabled the primary investigator to capture all the field notes outlining the thoughts and observations that guided the analysis process.

Ethical considerations

The Human Research Ethics Committee of the University of the Witwatersrand (M200957) approved this study. Permission was also sought from the Mpumalanga Department of Health Research Committee (MP_202010_010). The methods followed in this study were in accordance with the relevant ethical principles for medical research involving human subjects [40]. Prior to data collection, all participants were given an information sheet that informed them about the aim of the study, confidentiality, and anonymity. Informed written consent was obtained from all participants to grant permission to participate and audio record the interviews.

Participant characteristics

The participant characteristics are presented in Table 1. Overall, 29 participants participated in this study, including four mental health coordinators at the provincial, district, and sub-district level; five mental health professionals at the mental health unit of a district hospital situated within Bushbuckridge municipality; five primary healthcare supervisors; and 15 CHWs. The participants’ years of experience ranged between 2 and 34 years.

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Table 1. Participant characteristics.

https://doi.org/10.1371/journal.pone.0309090.t001

The study aimed to explore the perspectives of the service providers regarding the challenges of informal caregiving and mental health services available for supporting informal caregivers of persons with SMDs in rural South Africa. The analysis of the semi-structured interviews and focus groups led to identification of the following three themes, which are set out in Table 2:

• Theme 1: Perceived caregiving consequences and related factors, which outlines service providers’ perspectives on the demands encountered by informal caregivers and contributing factors.
• Theme 2: Current state of mental health services, which outlines the formal and informal mental health services currently offered at the study site and the suitability of these services to alleviate burden of care among informal caregivers.
• Theme 3: Factors affecting the delivery of caregiver mental health services, which outlines factors currently hindering the provision of mental health services for alleviating burden among informal caregivers at the study site.

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Table 2. Themes and subthemes representing service providers’ perspectives on informal caregiving.

https://doi.org/10.1371/journal.pone.0309090.t002

Factors impacting on caregiving

The service providers in this study indicated that informal caregivers of persons with SMDs encountered challenges in their caregiving role which led to stress and burden. These challenges were attributed to the MHCUs functional limitations, aggressive and violent behaviours, and substance abuse. Due to their functional limitations, some MHCUs require full-time care, and as a result, informal caregivers had to leave their jobs, which led to financial strain that predisposes informal caregivers to economic burdens. These findings are consistent with previous studies conducted on informal caregiver experiences in sub-Saharan Africa that reveal that the caregivers’ employment status and the severity of the MHCUs’ condition are associated with the economic burden experienced by the caregivers [26, 41]. The fact that some caregivers are minors who had to leave school to look after their parents with a SMD raises a serious concern regarding the well-being and future of these minor caregivers. Leahy [42] highlights that children whose parents are diagnosed with SMDs must undertake inappropriate levels of responsibility as they are often expected to care for themselves, their siblings, as well as look after the household in addition to caring for their mentally ill parents. Consequently, these children are at risk of developing psychological, social, and academic problems [42]. Leaving school early reduces the chances of entering the open labour market, particularly in resource-constrained areas like rural South Africa where fewer economic opportunities exist [43]. It can therefore be concluded that occupying this role plunges these minor caregivers further into the cycle of poverty [18].

The service providers highlighted substance abuse as a common problem among the MHCUs, which is related to high relapse rates that subsequently lead to aggressive and violent behaviours, making it difficult for informal caregivers to provide care. The findings are similar to that of previous studies that reveal that high relapse rates among persons with SMDs are mainly related to substance abuse and that this contributes largely to the high levels of caregiver burden [29, 44].

In agreement with the concerns raised by informal caregivers in previous studies conducted in rural South Africa and Zimbabwe, the service providers identified stigma as a contributing factor to caregiver burden [26, 45]. Similar to previous studies conducted in rural South Africa, the service providers expressed that caregivers are susceptible to exploitation by community members who expect them to cover costs for damages caused by MHCUs during their psychotic states [30]. The experience of stigma exposes caregivers to feelings of loneliness and isolation, subsequently leading to negative consequences for the caregivers’ emotional, mental, and physical health. Some informal caregivers were reported to have consulted mental health professionals for depression, anxiety, and adjustment disorders. In addition, others reported having developed physical conditions, such as high blood pressure, which is consistent with the findings highlighted by informal caregivers in previous studies [45–47].

Various factors are related to the burdens and negative consequences experienced by informal caregivers in their role. Caregiver-related factors, including caregivers’ lack of knowledge and skills in handling MHCUs, were attributed to burdens expressed in this study. These results are supported by Ntsayagae et al. [48] and Marimbe et al. [45], who reveal that informal caregivers reported lack of knowledge on mental conditions and practical skills required to assist MHCUs, and as a result, they struggle to cope as they feel powerless in their caregiving roles. Similarly, the service providers in this study reported that informal caregivers lack information on mental conditions, which compromises their ability to cope as they struggle to handle the behaviours exhibited by the MHCUs. The service providers perceived that lack of knowledge of mental disorders leads informal caregivers to delay help-seeking as they often wait until the MHCUs are aggressive and violent to seek help. Lack of knowledge on mental disorders is considered a common problem that influences help-seeking behaviour in LMICs [49, 50]. This is because the approach to decentralise mental health services was adopted without the proper development of community-based mental health services, and as such, there is limited awareness of mental disorders that prevail within communities [51]. A study conducted in rural South Africa reveals that lack of knowledge about mental illness is a factor that influences help-seeking behaviour among MHCUs and their caregivers, and recommends psychoeducation for caregivers as a way of addressing this problem [52]. Chadda [22] highlights that in order for psychoeducation to be effective, sessions must be held weekly for a period of three months to one year and should include basic information on a mental disorders, common symptoms, available treatments, side effects, and warning signs of relapses. In addition, these interventions should include practical strategies for the day-to-day handling of patients, as well as stress management and coping skills for the caregivers [22].

Contextual and intersectoral factors such as limited access to community resources, including long-term facilities and day centres to rehabilitate MHCUs, were highlighted as contributing factors to the burdens and consequences encountered by informal caregivers. Service providers expressed that MHCUs receive hospital treatment that stabilises their conditions but that there is no continuity of treatment to rehabilitate them within their communities. According to Saha et al. [53], rehabilitation of MHCUs is critical for facilitating the development of the functional, social, and intellectual skills they require to lead independent lives within their communities. Additionally, the World Health Organization commends community-based psychiatric rehabilitation as a core element in improving quality of life and facilitating inclusion and participation among MHCUs within communities [54]. The limited access to rehabilitation services compromises MHCUs’ ability to gain the necessary skills for independent living. It is therefore not surprising that in this study informal caregivers were reported to provide full-time care to their care recipients with SMDs, which predisposes them to economic burdens.

Current state of mental health services

Despite acknowledging the burdens faced by informal caregivers and the negative consequences of caregiving on the emotional, mental, and physical health of caregivers, the current mental health services do not address the needs of caregivers. While service providers identified some institution-based caregiver services, such as health talks, psychoeducation, and family therapy, these services were reported to be made available on interim basis and mainly directed at improving the MHCUs well-being with less focus on caregiver health and wellness. Additionally, these services are targeted specifically at caregivers who already presented with a problem, highlighting that the services follow the biomedical approach and place less emphasis on prevention and health promotion among informal caregivers. Referrals to mental health professionals, including social workers, counsellors, and occupational therapists, are only done in cases where caregivers express difficulty coping with their duties. This raises serious concerns because informal caregivers often lack information about the services available for them. These findings are consistent with those reported by Akbari et al. [55], who reveal that the health status of caregivers is often not prioritised in mental healthcare. The lack of prioritisation of caregivers’ health means that their unique needs are not considered, which perpetuates their burdens and health risks [55].

The service providers identified non-specialist health workers, including CHWs and home-based carers, as key role players in the management of mental disorders within the community. A study conducted in five LMICs, namely Ethiopia, India, Nepal, South Africa, and Uganda, reveal that using non-specialist health workers is an acceptable and feasible way to improve access to mental health services in low-resourced communities [56]. The availability of non-specialist health workers within the study context is an opportunity to extend community mental health services to help alleviate burdens among informal caregivers of persons with SMDs.

The service providers in this study identified informal mental health service providers within the community, including traditional healers, herbalists, and religious organisations, but highlighted a lack of collaboration between these service providers and the formal mental health service providers within the community. Sorsdahl et al. [57] identify alternative practitioners, such as traditional healers, as key role players in the delivery of mental health services. This emphasises the need for collaboration between mental health workers and alternative service providers such as traditional healers and religious practitioners, particularly in low-resourced settings where informal caregivers have been reported to rely on their religious practices to help cope with the demands of caregiving [10, 58, 59].

Community-based stakeholders, including the police and community leaders, including ward councillors and civic members, were identified as a valuable resource that help families of persons with mental disorders during mental health emergencies. These stakeholders were identified to be helpful in assisting families to get aggressive MHCUs to the hospital when needed. These findings are consistent with those reported by Modise et al. [59] in rural South Africa where families of MHCUs identified police intervention as a critical resource that help them cope in emergency situations where MHCUs are uncontrollable.

Factors affecting the delivery of caregiver mental health services

Service providers acknowledged that the current institution-based and community mental health services are inadequate to address the burdens experienced by informal caregivers of persons with SMDs. The unavailability of caregivers, rejection of help from the CHWs, and caregivers’ cultural beliefs were identified as caregiver-related factors influencing the delivery of caregiver mental health services. Some of the institution-based service providers expressed their interest in working collaboratively with informal caregivers to support them in their caregiving role; however, they encounter a challenge as informal caregivers are often unavailable during follow-up visits. The unavailability of informal caregivers could be attributed to the transport costs incurred in accessing institution-based mental health services. In addition, this could be because informal caregivers occupy other roles and have responsibilities outside of their caregiving duties, which make it difficult for them to attend follow-up visits with the MHCUs. The fact that only one hospital has a mental health unit that offers in- and outpatient services means that some need to travel long distances to access services for themselves and the MHCUs. Previous studies conducted in rural South Africa reveal high levels of financial burdens [26–29]. Given that the services are tailored to meet the needs of the MHCUs with less focus on the caregivers’ health and well-being, it can be assumed that once the informal caregivers perceive the MHCUs to be stable enough to attend follow-up visits, they stop accompanying them to cut the travelling costs. Ntsayagae et al. [48] reveal that informal caregivers are required to combine their caregiving duties with other roles and responsibilities, such as executing daily chores and taking care of themselves and other family members. To ensure successful collaboration with informal caregivers in the care of MHCUs, service providers should direct services towards assisting informal caregivers to obtain balance in their activities. The rejection of help from CHWs could be related to the stigma that informal caregivers encounter within the community. The CHWs usually render services to the same community in which they reside [60], and therefore, it could be that informal caregivers are reluctant to receive help from members of the same community that blame them for the behaviours exhibited by the MHCUs. It is therefore important to ensure mental health education to orientate informal caregivers to mental health services that are available and their purpose in alleviating their burdens. In addition, stigma reduction programs are required to address the exploitation of informal caregivers by the community [50].

The cultural beliefs of the informal caregivers were identified as a caregiver-related factor that hinders delivery of support to informal caregivers. Service providers indicated that some informal caregivers prefer services from traditional healers and religious organisations, which impedes caregiver support and MHCUs’ recovery. According to Cauce et al. [12], cultural beliefs have a substantial influence on help-seeking and choice of treatment providers. Even though the informal caregivers in this study seek medical help, they still consult traditional healers, who stop MHCUs’ from taking medication, which worsens their condition. This highlights the importance of adopting a collaborative care model where mental health professional and complementary service providers like traditional healers ensure the recovery of MHCUs and build support for informal caregivers [10, 49, 61].

Health system factors, including limited prioritisation of mental health services, limited knowledge and stigma from lay health workers, lack of referral pathways between institution-based and community-based mental health service providers, and funding constraints in mental health, were identified as influencing the provision of caregiver-orientated mental health services. The service providers acknowledged that mental health, particularly that of caregivers, is not prioritised within the community. In addition, they highlighted continuous budget constraints from the Department of Health in South Africa, which hinder outreach mental health services in the community. Matlala et al. [62] state that while mental health is considered a critical component of health, there is a general neglect of mental health services evident in LMICs. It is for this reason that even with the high prevalence of mental disorders, these countries are reported to spend less than 3% of their budget on mental healthcare [63]. It is therefore not surprising that budget constraints were highlighted as influencing the provision of caregiver services in this study. Rathod et al. [10] highlight the need for prioritising mental health services and emphasise that this can only be achieved with political will, improved legislation, equitable resource distribution, and collaborations between MHCUs, caregivers, and formal and informal health providers. While service providers highlighted caregivers’ rejection, of services from CHWs, they also highlighted that lay workers, including CHWs and home-based carers, often avoid providing services because of the stigma that MHCUs are violent. According to Sibeko et al. [9], CHWs received basic training on chronic conditions such as HIV, hypertension, and diabetes but no standard training on mental health. It can therefore be concluded that the attitudes displayed by lay health workers in this study context can be attributed to the limited knowledge related to lack of training on mental health. Contextual factors, such as limited knowledge from stakeholders such as the South African Police Service, highlight the need for training to ensure better handling of MHCUs and support to caregivers [59]. Distances travelled to hospital and rurality of the study context were reported as contextual factors influencing the delivery of caregiver interventions. Service providers indicated that the provision of institution-based mental health services pose a challenge since informal caregivers must travel long distances and struggle because of financial constraints. The fact that the study context is in a rural area makes it difficult to attract skilled mental health practitioners [64]. The contextual factors highlight the importance of strengthening community-based mental health services to ensure access of services to informal caregivers. The gap in mental health professionals can be bridged by integrating mental health into the training of CHWs and home-based carers [8, 65].

Limitations

The study only focused on investigating caregiver mental health services within the Bushbuckridge municipality, and while there may be similarities of the study context to allow for replication of findings in other contexts, the findings cannot be generalised to all rural areas of South Africa. While conducting interviews in the participants’ workplace was useful for understanding their work context, it also meant many interruptions during the interviews, which could have influenced the depth of information shared by the participants. In cases where there were interruptions, the interviewer requested an additional time for the interview to allow the participants enough time to share their views. Member checking was also conducted to ensure that participants had an opportunity to review their transcripts and add any relevant information that the participants wished to share. In one of the interviews, it was mentioned that minor children are caregivers; however, this was reported by the service providers who could not trace the information back to where these children are to provide proper support. The lack of convergent systemic and culturally competent evidence evincing the likelihood ratios of SMDs might have contributed towards potential interviewer and responder bias.