In-line with the National Mental Health Policy Framework and Strategic Action Plan (2013-2020), the South African Federation for Mental Health (SAFMH) values the importance of advocacy for mental health care users (MHCUs). In support of this, a specific advocacy programme was thus devised for a period of three years to try and identify and support community-based advocacy leaders from a national level.
Advocacy for mental health is vital in reducing stigma, improving human rights, and improving access to care (WHO, 2001). The central concept of advocacy is that MHCUs are ultimately the experts in mental health, and that their voices should be included in mental health policy and service provision decisions (Lancet Global Mental Health Group, 2007).
In 2015, SAFMH partnered with the the National Department of Health (NDOH) to implement a national programme for MHCUs to establish MHCU advocacy groups in each province. This was done through conducting day-long ‘empowerment sessions’ to provide information on mental illnesses at selected sites across provinces. The sessions covered identification of illnesses, causes, treatment, stigma, and human rights. The sessions were presented by a positive role model who had lived experience as a MHCU.
After the empowerment session, MHCUs were invited to volunteer to become advocacy leaders, and the longer-term aim was for them to establish advocacy groups in their districts, with remote support from SAFMH. These advocacy groups would run support groups with other MHCUs in their area, and champion for better medical care at clinics and basic human rights for MHCUs.
In 2019, after empowerment sessions had been held in various sites across five provinces (Northern Cape, Mpumalanga, Limpopo, Free State and KwaZulu Natal), the NDOH and SAFMH partnered with researchers from the University of Cape Town (UCT) to evaluate the programme’s success, the barriers that MHCUs faced in establishing advocacy groups, and to identify factors that might facilitate the development of a future programme to encourage advocacy groups for MHCUs across the country.
This article summarises the findings of the research, that was recently published in the Journal of Community Mental Health, titled: Evaluation of an advocacy programme for MHCUs in South Africa: A mixed methods study (Davies et al., 2021), (https://link.springer.com/article/10.1007/s10597-021-00877-8).
The research involved interviewing 41 participants in total, including 18 MHCUs, 6 support persons, 9 service providers, 4 NGO directors, and 4 programme managers in the NDoH. The study reported that although 24 empowerment sessions had been conducted across five provinces, and 57 MHCUs and support persons had signed up as advocacy leaders, only four MHCUs managed to run long term advocacy or support groups with other MHCUs.
The researchers then set about asking participants what some of the barriers were that they had faced in setting up advocacy or support groups, and five key barriers were identified by them. These were: (1) Lack of follow-up support after empowerment sessions, (2) Inadequate health clinic support, (3) Pervasive stigma, (4) Self-confidence and intrapersonal factors, and (5) Lack of financial resources.
First, participants spoke about there not being enough support after the empowerment sessions to establish groups, whether this was from the community, local NGOs, SAFMH, or the DoH. Second, when participants went back to their clinics and approached nurses to request that they use the clinics to run support groups, they faced being ignored, not prioritised, and even chased away, because nurses said they were too busy.
One of the potential reasons that participants cited for this was that nurses may not be aware of mental health issues and tend to stigmatise MHCUs, in some instances calling them names such as ‘psychs’ or ‘crazy ones’. Another potential reason was that due to resource constraints, there had not been an opportunity for nurses, social workers or community health workers (CHWs) to attend the empowerment sessions, and therefore when MHCUs wanted to establish advocacy groups, the clinics were not aware of their needs or intentions. This barrier possibly had the biggest impact on the sustainability of the intended advocacy programme.
Participants also identified that the stigma they faced from their communities and even immediate families was a major barrier for them to establish advocacy groups. They expressed that they constantly fought against discrimination, even from community leaders and local media, when these leaders and agencies could in fact use their positions to educate community members about mental health issues.
Last, one of the biggest barriers to running advocacy or support groups was that MHCUs did not have the financial resources to do so. Although minimal resources are needed to run support groups, MHCUs still require basic funds to contact other users, travel to clinics and meetings, and print resources for the advocacy groups.
After exploring the barriers that MHCUs experienced in wanting to run support or advocacy groups, the researchers asked participants what their recommendations would be for putting together an achievable and sustainable advocacy movement across the country. A wide range of recommendations were provided, based on their personal experiences.
First, they reflected that the empowerment and awareness sessions were very helpful, and that these should be rolled out across the country at primary care clinics. This would increase awareness of mental health and human rights, encourage those with and without mental illnesses to interact and meet each other, and ensure that nurses and clinic staff could attend. Following these sessions, monthly support groups should be run from the clinics, as these are the most central location for MHCUs, and they come to collect their medication there too. In conjunction with this, participants stated that it is vital that training in mental health is conducted with all health and social workers to improve mental health literacy, decrease stigma and improve attitudes and care towards patients.
Participants also suggested that one person should serve as a ‘mental health champion’ at each clinic, and this could be a MHCU, a health care worker or a social worker. This person would then assist in providing logistical and psychosocial support in running support groups. A short manual for starting and running support groups would also be very helpful to implement groups. The manual would need to include step-by-step instructions for running a group, topics that can be discussed in the group, and activities that could be done together at minimal cost.
There were a variety of other elements identified that would help to run groups. These included: provision of informational posters, pamphlets, and DVDs; assistance in connecting MHCUs and service providers to each other; establishment of local district WhatsApp groups; provision of more empowerment sessions; practical guidance in conducting group activities, such as logistics, information, gathering participants, and finding venues; support from nurses, social workers and CHWs at clinics; and continued and consistent support from either an NGO, clinic or individual mentor.
There was also a request that the NDOH initiates and runs national mental health awareness campaigns. This would involve distributing pamphlets and posters about mental health and rights of MHCUs to all clinics, running awareness days at clinics, liaising with the media, conducting talks at schools and churches, and educating members of the Department of Social Development and the police force about mental health.
Last, participants recommended the establishment of locally based inclusive rehabilitation centres across the country. These centres could then provide basic medications, psychosocial counselling, skill development workshops, and income generating opportunities, all at one centre. These would have the added benefit of reducing medication treatment dropout and illness relapse, and also reduce some of the burden from clinics.
Advocacy for and from MHCUs is a key element in destigmatising mental illness, improving access to and quality of care, and prioritising policy change for mental health (Kleintjes et al., 2013). This research found that there are many barriers that MHCUs and care providers face in being involved in advocacy movements and running advocacy groups. If a national advocacy movement was to be coordinated in future, various factors need to be considered to facilitate this, described above.
A crucial factor relating to this study is that the South African ‘Mental Health Policy Framework and Strategic Plan’, which committed to various objectives regarding advocacy, expired in 2020. Much of what was committed to by government in this plan corresponded with the needs identified by participants in the current study. However, these participants, who have lived experiences of the public health care system in the country, expressed that most of these objectives have not been achieved to date.
This emphasises that training in mental health for service providers, improved quality of care for MHCUs, and programmes for the reduction of stigma need to be prioritised in South Africa. Importantly, a new national Mental Health Policy and Strategic Plan must be developed, with clearer accountability structures in place. Last, this study highlights the importance of including MHCU perspectives on care and advocacy programmes that pertain to them, in strengthening mental health services nation-wide.
Authors: T. Davies, R. Roomaney, C. Lund, K. Sorsdahl. 2021.
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Davies, T., Roomaney, R., Lund, C., & Sorsdahl, K. (2021). Evaluation of an Advocacy Programme for mental health care users in South Africa: A Mixed Methods Study. Community Mental Health Journal, 1-9.
Kleintjes, S., Lund, C., & Swartz, L. (2013). Organising for self-advocacy in mental health: experiences from seven African countries. African Journal of Psychiatry, 16(3), 187-195.
Lancet Global Mental Health Group. (2007). Scale up services for mental disorders: a call for action. The Lancet, 370(9594), 1241-1252.
WHO. (2001). The World Health Report 2001: Mental health: new understanding, new hope: World Health Organization.
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