Exploring the unmet needs of adults with cerebral palsy living in urban South Africa.

PURPOSE: The investigators aimed to understand the unmet needs of adults with cerebral palsy (CP) living in urban South Africa and to ascertain similarities or differences to typically developing (TD) adults in the same community. MATERIALS AND METHODS: Participants were interviewed with an adapted version of the Southampton Needs Assessment Questionnaire (SNAQ). Non-parametric statistical analysis was utilised for quantitative data and qualitative data were analysed using free coding to identify themes. RESULTS: Thirty adults with CP (median age 34.8 years; GMFCS levels I/II/III/IV/V: n = 6/6/5/7/6; socio-economic status (SES) low/average/high: n = 8/17/5) were matched for gender, age, and SES. Adults with CP reported a higher unemployment rate and lower level of satisfaction with access to health services than TD peers. Core themes identified by the participants with CP that made community participation more difficult were physical capacity, poor access to accommodation, transport and health services, lack of socialising opportunities, poor universal design, and lack of financial independence. CONCLUSIONS: Adults with CP reported experiencing many challenges in their communities. Improved access to health care services and transport, and the universal design of housing and community buildings to accommodate individuals with a disability should be made a priority.Implications for rehabilitationAdults with cerebral palsy (CP) reported that their disability had an impact on their social life, home life, and work life.Accessibility issues have been identified as a major factor affecting adults with CP in a variety of areas, including access to and use of health services, housing, transportation, and community buildings.Adults with CP reported the need for support during the transition to adulthood, especially with developing life skills that will promote living independently in the community as adults with disabilities.

Respite care models and practices for persons with intellectual disability: A scoping review.

Background: Families are the primary caregivers for persons with intellectual disability (ID), offering informal support to ensure community living. Ensuring families are adequately supported is key to reduce the financial, physical, mental and social toll which long-standing inadequately supported care giving may evoke. Respite care is such a support service offered to caregivers and care-recipients with ID. Objective: Part of a larger study aimed at developing a respite care service framework for persons with ID for South Africa, the review aimed to elucidate what principles and practices inform current respite care services for this population globally. Method: The Joanna Briggs Institute (JBI) scoping review framework guided the review. Databases were searched using key and surrogate terms for relevant literature published from 2006 to 2021. Results: Thirty-one sources met the inclusion criteria from 417 screened sources of evidence. These were published between 2006 and 2020, and included grey and peer-reviewed articles, the latter mostly mixed design. Information on respite care service characteristics, principles, practices, guidelines, evaluations and impacts were found for high- but not low-and-middle-income countries (LMICs). Conclusion: There is an existing knowledge base that can be drawn on to inform the development of quality respite care. The lack of published information on respite care in LMICs necessitates further research to ensure contextually appropriate respite care developments in these settings. Contribution: This study contributes to the knowledge base on respite care for persons with ID and points out the research gap in LMICs.

Barriers to the participation of people with psychosocial disability in mental health policy development in South Africa: a qualitative study of perspectives of policy makers, professionals, religious leaders and academics.

BACKGROUND: This paper outlines stakeholder views on environmental barriers that prevent people who live with psychosocial disability from participating in mental health policy development in South Africa. METHOD: Fifty-six semi-structured interviews with national, provincial and local South African mental health stakeholders were conducted between August 2006 and August 2009. Respondents included public sector policy makers, professional regulatory council representatives, and representatives from non-profit organisations (NPOs), disabled people's organisations (DPOs), mental health interest groups, religious organisations, professional associations, universities and research institutions. RESULTS: Respondents identified three main environmental barriers to participation in policy development: (a) stigmatization and low priority of mental health, (b) poverty, and (c) ineffective recovery and community supports. CONCLUSION: A number of attitudes, practices and structures undermine the equal participation of South Africans with psychosocial disability in society. A human rights paradigm and multi-system approach is required to enable full social engagement by people with psychosocial disability, including their involvement in policy development.

South African mental health care service user views on priorities for supporting recovery: implications for policy and service development.

PURPOSE: The paper documents the views of South African mental health care service users on policy directions and service developments that are required to support their recovery. METHOD: Semi-structured interviews were conducted with forty service users and service user advocates. A framework analysis approach was used to analyse the qualitative data. RESULTS: Service user priorities included addressing stigma, discrimination and disempowerment, and the links between mental health and poverty. They suggested that these challenges be addressed through public awareness campaigns, legislative and policy reform for rights protection, development of a national lobby to advocate for changes, and user empowerment. Users suggested that empowerment can be facilitated through opportunities for improved social relatedness and equitable access to social and economic resources. CONCLUSIONS: This study suggests three strategies to bridge the gap between mental health care service users rights and needs on one hand, and unsupportive attitudes, policies and practices on the other. These are: giving priority to service user involvement in policy and service reform, creating empathic alliances to promote user priorities, and building enabling partnerships to effect these priorities.

An assessment of mental health policy in Ghana, South Africa, Uganda and Zambia.

BACKGROUND: Approximately half of the countries in the African Region had a mental health policy by 2005, but little is known about quality of mental health policies in Africa and globally. This paper reports the results of an assessment of the mental health policies of Ghana, South Africa, Uganda and Zambia. METHODS: The WHO Mental Health Policy Checklist was used to evaluate the most current mental health policy in each country. Assessments were completed and reviewed by a specially constituted national committee as well as an independent WHO team. Results of each country evaluation were discussed until consensus was reached. RESULTS: All four policies received a high level mandate. Each policy addressed community-based services, the integration of mental health into general health care, promotion of mental health and rehabilitation. Prevention was addressed in the South African and Ugandan policies only. Use of evidence for policy development varied considerably. Consultations were mainly held with the mental health sector. Only the Zambian policy presented a clear vision, while three of four countries spelt out values and principles, the need to establish a coordinating body for mental health, and to protect the human rights of people with mental health problems. None included all the basic elements of a policy, nor specified sources and levels of funding for implementation. Deinstitutionalisation and the provision of essential psychotropic medicines were insufficiently addressed. Advocacy, empowerment of users and families and intersectoral collaboration were inadequately addressed. Only Uganda sufficiently outlined a mental health information system, research and evaluation, while only Ghana comprehensively addressed human resources and training requirements. No country had an accompanying strategic mental health plan to allow the development and implementation of concrete strategies and activities. CONCLUSIONS: Six gaps which could impact on the policies' effect on countries' mental health systems were: lack of internal consistency of structure and content of policies, superficiality of key international concepts, lack of evidence on which to base policy directions, inadequate political support, poor integration of mental health policies within the overall national policy and legislative framework, and lack of financial specificity. Three strategies to address these concerns emerged, namely strengthening capacity of key stakeholders in public (mental) health and policy development, creation of a culture of inclusive and dynamic policy development, and coordinated action to optimize use of available resources.

Mental health care user participation in mental health policy development and implementation in South Africa.

This paper describes current support for mental health care user participation in policy development and implementation in South Africa and suggests strategies for improving participation. The World Health Organization (WHO) Mental Health Policy Checklist and WHO Mental Health Legislation Checklist were completed. Between August 2006 and August 2009 96 semi-structured interviews with national, regional and district stakeholders were conducted. Most respondents felt that inclusion of user perspectives in policy processes would improve policy development. In practice, mental health care user consultation in policy development and implementation has been limited during the 16 years of democracy in South Africa. Strategies to create a supportive environment for user participation include social action directed at reducing stigma, advocating for acceptance of users' rights to participate in decision making, crafting a supportive regulatory framework to promote participation, and equipping providers and policy makers to support inclusion. User capacity for participation could be strengthened through early and effective access to treatment and support, development of a national user lobby, skills training and practical exposure to the policy and service development environment.

'Mental health is everybody's business': roles for an intersectoral approach in South Africa.

Intersectoral action is increasingly recognized as necessary to address the social determinants of mental health. This study aims to assess South Africa's progress in intersectoral collaboration for mental health, and provide recommendations for intersectoral collaboration, to generate lessons for other low- and middle-income countries. We conducted a survey of the existing mental health system in South Africa using the World Health Organization Assessment Instrument for Mental Health Systems. We also conducted 96 semi-structured interviews and 12 focus group discussions with a range of stakeholders at national, provincial and district level. Data were analysed thematically to understand the roles and responsibilities of different sectors in realizing the right to mental health. A range of key sectors were identified as having roles in mental health promotion, illness prevention and service delivery. In discussing South Africa's progress, respondents gave several suggestions about how to formulate an intersectoral response in this context, including increasing high level political commitment, and using leadership from the health sector. We outline roles and responsibilities for various sectors and lessons that can be learnt from this context. These include the importance of developing programmes alongside legislation, employing targeted awareness-raising to engage sectors, and developing a structured approach to intersectoral action.

Meeting the millennium development goals in Sub-saharan Africa: what about mental health?

Mental health is a crucial public health and development issue in sub-Saharan Africa (SSA), a region where little progress has been made towards achieving the Millennium Development Goals (MDGs). In this paper we argue that not only will limited progress in achieving these targets have a significant impact on mental health, but it will be impossible to achieve some of these aspirations in the absence of addressing mental health concerns. We consider the strong relationship of mental health with dimensions of human development represented in the MDGs, including reducing poverty, achieving universal primary education, decreasing child mortality rates, improving maternal health, HIV, environmental factors and improving the lives of those living in informal settlements. With these links in mind, we examine the mental health context in SSA settings and provide some specific examples of best practice for addressing mental health and the MDGs. It is recommended that the role of mental health interventions in accelerating the realization of the MDGs is investigated; further efforts are dedicated to probing the impact of different development projects upon mental health outcomes, and that mental health is declared a global development priority for the remainder of the MDG period and beyond.

Public sector mental health systems in South Africa: inter-provincial comparisons and policy implications.

BACKGROUND: There is growing recognition that mental health is an important public health issue in South Africa. Yet mental health services remain chronically under-resourced. The aim of this study was to document levels of current public sector mental health service provision in South Africa and compare services across provinces, in relation to current national policy and legislation. METHODS: A survey was conducted of public sector mental health service resources and utilisation in South Africa during the 2005 calendar year, using the World Health Organization's Assessment Instrument for Mental Health Systems (WHO-AIMS) Version 2.2. RESULTS: South African policy and legislation both advocate for community-based mental health service provision within a human rights framework. Structures are in place at national level and in all nine provinces to implement these provisions. However, there is wide variation between provinces in the level of mental health service resources and provision. Per 100,000 population, there are 2.8 beds (provincial range 0-7.0) in psychiatric inpatient units in general hospitals, 3.6 beds (0-6.4) in community residential facilities, 18 beds (7.1-39.1) in mental hospitals, and 3.5 beds (0-5.5) in forensic facilities. The total personnel working in mental health facilities are 11.95 per 100,000 population. Of these, 0.28 per 100,000 are psychiatrists, 0.45 other medical doctors (not specialised in psychiatry), 10.08 nurses, 0.32 psychologists, 0.40 social workers, 0.13 occupational therapists, and 0.28 other health or mental health workers. CONCLUSIONS: Although there have been important developments in South African mental health policy and legislation, there remains widespread inequality between provinces in the resources available for mental health care; a striking absence of reliable, routinely collected data that can be used to plan services and redress current inequalities; the continued dominance of mental hospitals as a mode of service provision; and evidence of substantial unmet need for mental health care. There is an urgent need to address weak policy implementation at provincial level in South Africa.

Mental health policy in South Africa: development process and content.

INTRODUCTION: Mental health is increasingly acknowledged as a crucial public health issue in South Africa (SA). However, it is not given the priority it deserves on policy agendas in this and many other low- and middle-income countries. The aim of this analysis is to describe the content of mental health policy and the process of its development in SA. METHODS: Quantitative data regarding SA's mental health system were gathered using the World Health Organization (WHO) Assessment Instrument for Mental Health Systems. The WHO Checklist for Mental Health Policy and Plans was completed for SA's 1997 mental health policy guidelines. Semi-structured interviews provided understanding of processes, underlying issues and interactions between key stakeholders in mental health policy development. RESULTS: There is uncertainty at provincial level regarding whether the 1997 policy guidelines should be considered national policy. At national level the guidelines are not recognized as policy, and a new policy is currently being developed. Although the guidelines were developed through wide consultation and had approval through national policy development processes, difficulties were encountered with dissemination and implementation at provincial level. The principles of these policy guidelines conform to international recommendations for mental health care and services but lack clear objectives. DISCUSSION: The process of mental health policy implementation has been hindered by the low priority given to mental health, varying levels of seniority of provincial mental health coordinators, limited staff for policy and planning, varying technical capacity at provincial and national levels, and reluctance by some provincial authorities to accept responsibility for driving implementation. CONCLUSION: These findings highlight the importance of national leadership in the development of new mental health policy, communication between national and provincial levels, the need for provincial structures to take responsibility for implementation, and capacity building to enable policy makers and planners to develop, monitor and implement policy.