The role of community participation in primary health care: practices of South African health committees.

BACKGROUND: Community participation is an essential component in a primary health care (PHC) and a human rights approach to health. In South Africa, community participation in PHC is organised through health committees linked to all clinics. AIMS: This paper analyses health committees' roles, their degree of influence in decision-making and factors impacting their participation. METHODS: Data were collected through a mixed-methods study consisting of a cross-sectional survey, focus groups, interviews and observations. The findings from the survey were analysed using simple descriptive statistics. The qualitative data were analysed using thematic content analysis. Data on health committees' roles were analysed according to a conceptual framework adapted from the Arnstein ladder of participation to measure the degree of participation. FINDINGS: The study found that 55 per cent of clinics in Cape Town were linked to a health committee. The existing health committees faced sustainability and functionality challenges and primarily practised a form of limited participation. Their decision-making influence was curtailed, and they mainly functioned as a voluntary workforce assisting clinics with health promotion talks and day-to-day operational tasks. Several factors impacted health committee participation, including lack of clarity on health committees' roles, health committee members' skills, attitudes of facility managers and ward councillors, limited resources and support and lack of recognition. CONCLUSIONS: To create meaningful participation, health committee roles should be defined in accordance with a PHC and human rights framework. Their primary role should be to function as health governance structures at facility level, but they should also have access to influence policy development. Consideration should be given to their potential involvement in addressing social determinants of health. Effective participation requires an enabling environment, including support, financial resources and training.

Effective and meaningful participation or limited participation? A study of South African health committee legislation.

BACKGROUND: Health committees are participatory structures providing community input in health systems. Community participation is a critical tenant in the Alma-Ata Declaration and the Right to Health. In South Africa, national and provincial legislation provides for health committees to be established at all primary health care facilities. AIMS: This paper aims to analyze whether the Western Cape Health Facility Boards and Committees Act (2016) is likely to result in effective and meaningful participation consistent with a Primary Health Care (PHC) and human rights approach to participation. The paper also explores whether the provincial Act addresses challenges identified in practice. METHODS: The methods consist of an analysis of the Western Cape Health Facility Boards and Committees Act, which is then compared to the international PHC and human rights approach to participation. Findings from an explorative mixed-methods study with health committees in Cape Town are used to discuss whether the Act addresses shortcomings identified in practised participation. FINDINGS AND ANALYSIS: The paper found that the current legislation is unlikely to lead to effective and meaningful participation. First, the roles prescribed in the Act are narrowly defined. They resemble roles practised and are inconsistent with right-based and PHC frameworks. Second, though the Act provides support, which the empirical research demonstrates is necessary, the support is insufficient, and often contingent. Third, the Act conceptualizes health committees as structures appointed by the Provincial Minister of Health; a formation process likely to lead to structures that do not adequately represent community interests. CONCLUSIONS: The paper argues that the Western Cape legislation is unlikely to lead to effective and meaningful participation. It suggests using international PHC and human rights frameworks and national policy documents to restructure health committee participation in the Act and the National Health Insurance Bill.

Rights-Based Training Enhancing Engagement of Health Providers With Communities, Cape Metropole, South Africa.

Community participation, the central principle of the primary health care approach, is widely accepted in the governance of health systems. Health Committees (HCs) are community-based structures that can enable communities to participate in the governance of primary health care. Previous research done in the Cape Town Metropole, South Africa, reports that HCs' potential can, however, be limited by a lack of local health providers' (HPs) understanding of HC roles and functions as well as lack of engagement with HCs. This study was the first to evaluate HPs' responsiveness towards HCs following participation in an interactive rights-based training. Thirty-four HPs, from all Cape Metropole health sub-districts, participated in this qualitative training evaluation. Two training groups were observed and participants completed pre- and post-training questionnaires. Semi-structured interviews were held with 10 participants 3-4 months after training. Following training, HPs understood HCs to play an important role in the communication between the local community and HPs. HPs also perceived HCs as able to assist with and improve the quality and accessibility of PHC, as well as the answerability of services to local community needs. HPs expressed intentions to actively engage with the facility's HC and stressed the importance of setting clear roles and responsibilities for all HC members. This training evaluation reveals HPs' willingness to engage with HCs and their desire for skills to achieve this. Moreover, it confirms that HPs are crucial players for the effective functioning of HCs. This evaluation indicates that HPs' increased responsiveness to HCs following training can contribute to tackling the disconnect between service delivery and community needs. Therefore, the training of HPs on HCs potentially promotes the development of needs-responsive PHC and a people-centred health system. The training requires ongoing evaluation as it is extended to other contexts.

"Research Usually Sits on Shelves, Through the Play It Was Shared." Co-producing Knowledge Through Post-show Discussions of Research-Based Theatre.

This is a critical analysis of the co-production of knowledge on health care with members of the public attending two research-based plays that were followed by post-show discussions with expert panelists. Passing On was developed from the findings of a qualitative research study of family decision making toward the end of life. Cracked explored help seeking pathways for young people experiencing psychosis in families of different ethnicities developed from a research study on this topic. The analysis provides critical reflections on the immediate, post-performance impact of research-based Theatre as a strategy to encourage the co-production of knowledge beyond delivery of the performance itself. The plays were developed through partnership working from interview transcripts and joint workshops engaging academics, users and Theatre practitioners (writers, director, actors). Post-show discussions with expert panels were held after each performance to widen participation of the public in the co-production of knowledge to enhance the impact of completed research and stimulate debate. These discussions were recorded and the audience were asked to complete post-show feedback forms. Audience members were researchers, service providers, service users, and carers. This is an analysis of the co-production of knowledge using the feedback forms and transcripts of the post-show discussions. The analysis showed evidence of impact and co-production of knowledge through dialogues that occurred between the audience members, the members of the panel, and the audience and the panel. The discussions covered policy and practice, personal experiences, and Theatre making. The post-show discussions led the public to critically discuss issues with the panel and other audience members thus widening participation in the co-production of knowledge. The feedback forms gave information on the audience demographics and the immediate impact of the performances. Research-based Theatre with post-show discussions and evaluation forms is a strategy for widening participation and engagement with health research findings, through the co-production of knowledge on complex health issues.

Social Solidarity, Human Rights, and Collective Action: Considerations in the Implementation of the National Health Insurance in South Africa.

Participation is recognized as an important contribution to implementing the right to health. It features as a key element of the global movement to achieve universal health coverage. The mobilization of groups into collective action is central in this. In South Africa, universal health coverage has become a feature of health policies, with the country's new National Health Insurance (NHI) scheme in the process of being established. The NHI is considered an experiment in social solidarity. This paper provides insights into civil society's experiences in the pursuit of universal health coverage via the implementation of the NHI. It explores the interplay of trust, reciprocity, and altruism and how these individual actions can advance toward solidarity and collective action. Our research shows that the road to universal health coverage via the rollout of the NHI will be complex. However, opportunities for collective action exist, including shared learning about human rights, as well as local initiatives within trusted circles. A collective health commitment is based on trust between the government and citizens. Thus, one of the first steps in implementing the NHI should focus on rebuilding trust, which could be developed by establishing platforms for citizen participation.

Consumers' perspectives on national health insurance in South Africa: using a mobile health approach.

BACKGROUND: Building an equitable health system is a cornerstone of the World Health Organization (WHO) health system building block framework. Public participation in any such reform process facilitates successful implementation. South Africa has embarked on a major reform in health policy that aims at redressing inequity and enabling all citizens to have equal access to efficient and quality health services. OBJECTIVE: This research is based on a survey using Mxit as a mobile phone-based social media network. It was intended to encourage comments on the proposed National Health Insurance (NHI) and to raise awareness among South Africans about their rights to free and quality health care. METHODS: Data were gathered by means of a public e-consultation, and following a qualitative approach, were then examined and grouped in a theme analysis. The WHO building blocks were used as the conceptual framework in analysis and discussion of the identified themes. RESULTS: Major themes are the improvement of service delivery and patient-centered health care, enhanced accessibility of health care providers, and better health service surveillance. Furthermore, health care users demand stronger outcome-based rather than rule-based indicators of the health system's governance. Intersectoral solidarity and collaboration between private and public health care providers are suggested. Respondents also propose a code of ethical values for health care professionals to address corruption in the health care system. It is noteworthy that measures for dealing with corruption or implementing ethical values are neither described in the WHO building blocks nor in the NHI. CONCLUSIONS: The policy makers of the new health system for South Africa should address the lack of trust in the health care system that this study has exposed. Furthermore, the study reveals discrepancies between the everyday lived reality of public health care consumers and the intended health policy reform.

Public participation: more than a method?: Comment on "Harnessing the potential to quantify public preferences for healthcare priorities through citizens' juries".

While it is important to support the development of methods for public participation, we argue that this should not be at the expense of a broader consideration of the role of public participation. We suggest that a rights based approach provides a framework for developing more meaningful approaches that move beyond public participation as synonymous with consultation to value the contribution of lay knowledge to the governance of health systems and health research.

The right to traditional, complementary, and alternative health care.

BACKGROUND: State parties to human rights conventions and declarations are often faced with the seemingly contradictory problem of having an obligation to protect people from harmful practices while also having an obligation to enable access to culturally appropriate effective healing. As people increasingly migrate across the globe, previous distinctions between 'traditional' and 'complementary and alternative medicine' practices are being transcended. There are connections across transnational healing pathways that link local, national, and global movements of people and knowledge. OBJECTIVE: This paper contributes to the development of the concept and practice of the right to health in all its forms, exploring the right to traditional, complementary, and alternative health (R2TCAH) across different contexts. DESIGN: The paper draws on four settings - England, South Africa, Kenya, and Jordan - and is based on key informant interviews and a literature review undertaken in 2010, and updated in 2013. The paper begins by reviewing the international legal context for the right to health. It then considers legal and professional regulations from the global north and south. RESULTS: Additional research is needed to establish the legal basis, compare regulatory frameworks, and explore patient and provider perspectives of regulation. This leads to being able to make recommendations on how to balance protection from harm and the obligation to ensure culturally appropriate services. Such an exploration must also challenge Western theories of human rights. Key concepts, such as individual harm, consent, and respect of the autonomy of the individual already established and recognised in international health law, could be adopted in the development of a template for future comparative research. CONCLUSIONS: Exploration of the normative content of the right to health in all its forms will contribute to supporting traditional, complementary, and alternative health service users and providers in terms of access to information, non-discrimination, clarification of state obligations, and accountability.

Health rights pamphlets: critical literacy and inclusive citizenship, South Africa.

The Ottawa Charter recognizes the importance of strengthening community action for health and developing personal skills. At the same time, a rights-based approach to health includes the right to information, participation and accountability. The Learning Network for Health and Human Rights is a research and learning collaboration between Civil Society Organisations (CSOs) and universities in the Western Cape, South Africa. For the purposes of this article, a CSO is understood to be any organization that is outside of the state and private market sector. As part of a wider programme of action research, the learning network developed six pamphlets aimed at enhancing individual and collective skills to support action related to the implementation of the right to health. The research reported here analyses how the pamphlets, coupled with directed training, strengthened skills, promoted critical literacy and supported inclusive citizenship. Eighteen semi-structured interviews and eight focus groups were conducted with 59 participants from eight CSOs, their members, beneficiaries and communities. The success of the pamphlets was found to be attributed to the role they played in a wider training programme, requested by the CSOs and developed jointly by CSOs and university-based researchers. Community action on the right to health is contingent on personal as well as collective skills development. Understanding of the right to health and skills for participation and accountability were extended in breadth and depth, which enabled inclusive citizenship.

Filling the gap: a learning network for health an human rights in the Western Cape, South Africa.

We draw on the experience of a Learning Network for Health and Human Rights (LN) involving collaboration between academic institutions and civil society organizations in the Western Cape, South Africa, aimed at identifying and disseminating best practice related to the right to health. The LN's work in materials development, participatory research, training and capacity-building for action, and advocacy for intervention illustrates important lessons for human rights practice. These include (i) the importance of active translation of knowledge and awareness into action for rights to be made real; (ii) the potential tension arising from civil society action, which might relieve the state of its obligations by delivering services that should be the state's responsibility-and hence the importance of emphasizing civil society's role in holding services accountable in terms of the right to health; (iii) the role of civil society organizations in filling a gap related to obligations to promote rights; (iv) the critical importance of networking and solidarity for building civil society capacity to act for health rights. Evidence from evaluation of the LN is presented to support the argument that civil society can play a key role in bridging a gap between formal state commitment to creating a human rights culture and realizing services and policies that enable the most vulnerable members of society to advance their health. Through access to information and the creation of spaces, both for participation and as a safe environment in which learning can be turned into practice, the agency of those most affected by rights violations can be redressed. We argue that civil society agency is critical to such action.

Short-term outcome of young homeless people in contact with a designated mental health service

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Background and Objectives: Young homeless people have high rates of psychiatric disorders and related complex needs. However, they often find it difficult to access mainstream mental health services. The aim of this study was to establish the short-term clinical outcome of young homeless people in contact with a designated mental health service, and whether this is predicted by variables in young people’s profiles. Methods: A designated mental health service was provided across five areas covering 18 shelters for young homeless people aged 16-25 years. Data on 150 consecutively referred young people, included the Health of the Nation Outcome Scales (HoNOS), a risk assessment, and a service checklist at referral and final service contact. Results: Young people reported a range of previous adversities and service contacts, and high HoNOS and risk scores. There was significant improvement on most HoNOS items for those who attended more than one session, but only one risk behaviour (selfharm) significantly decreased. Previous experience of mental health problems and agreed completion of treatment predicted better clinical outcome. Conclusions: Despite their multiple and complex mental health needs, at least a proportion of young homeless people, can engage and benefit from their contact with a designated mental health service. The HoNOS could be a useful clinical tool for similar community teams (AU)

The "learning" component of participatory learning and action in health research: reflections from a local sure start evaluation.

In this article, the authors consider the opportunities for learning in health research that adopts a participatory learning and action (PLA) approach. Much attention has been given to the participation and action components of PLA, but there has been less practical and theoretical consideration of the learning component. Using the research conducted as part of a local Sure Start evaluation in England, the authors reflect on the learning that takes place between participants in the research process. They draw on two models of adult learning styles to frame their reflections and argue that to improve the rigor of participatory research, and to maximize the emancipatory potential of PLA, it is useful for researchers to be explicit about the learning that takes place during participatory research. Furthermore, that learning will be promoted by establishing a dialogue of colearning between different worlds across boundaries.

Listening to service users: young homeless people's experiences of a new mental health service.

The aim of this study was to investigate young homeless people's experiences of ;Strong Minded', a new mental health service set up within selected homeless shelters and run by a voluntary sector organization. Semi-structured interviews were conducted with 19 residents from five homeless shelters across the UK. All of the young people who had accessed Strong Minded had benefited from their engagement. The young people also identified several key inherent and important aspects of Strong Minded relating to both the practical, supportive therapeutic approach and the flexibility of the interventions offered, which contributed to the service's success. This service model of engaging vulnerable young people in transition could have useful implications for the future interface between voluntary and statutory mental health services.

Preventing homelessness among substance users in Europe.

Prior to the 1970s, neither homelessness nor drug addiction was seen as issues of major concern in Europe. At most, they were of local interest and of particular importance only in some larger metropolitan centres. Over the last three decades they have come much more into public prominence and risen up in local and national policy agendas. At the level of the European Union (EU), however, while the use and abuse of drugs has attracted substantial financial resources and institutional involvement, homelessness, in comparison, has been relatively neglected and remains predominantly the concern of non-government and voluntary organisations. At all three levels-local, national, and European-it is only in recent years that the link between homelessness and problematic substance use has come to the fore as an issue of singular concern. This paper examines the recent emergence of policies and programmes which seek to tackle and prevent homelessness among substance users. Our investigation suggests that although new initiatives at the EU level are limited, at the national and especially sub-national level, effective programmes addressing both treatment and prevention are being designed and implemented.

Use of applied theatre in health research dissemination and data validation: a pilot study from South Africa.

This article reports on a pilot study of the use of applied theatre in the dissemination of health research findings and validation of data. The study took place in South Africa, as part of the Southern Africa Stroke Prevention Initiative (SASPI) and was based at the University/Medical Research Council Rural Public Health and Health Transitions Research Unit (also known as the Agincourt Unit). The aim of SASPI was to investigate the prevalence of stroke and understand the social context of stroke. It was decided to use an applied theatre approach for validating the data and disseminating findings from the anthropological component of the study. The pilot study found that applied theatre worked better in smaller community groups. It allowed data validation and it elicited ideas for future interventions resulting from the health research findings. Evaluation methods of the impact of applied theatre as a vehicle for the dissemination and communication of research findings require further development.

The social diagnostics of stroke-like symptoms: healers, doctors and prophets in Agincourt, Limpopo Province, South Africa.

This paper focuses on the clinical and social diagnostics of stroke-like symptoms in Limpopo Province, South Africa. The research questions addressed here are: what are the lay understandings of stroke-like symptoms and what are the health-seeking behaviours of Tsongan Mozambican refugees and South Africans in this area? The study site is ten villages in the Agincourt sub-district of Limpopo Province which are within the health surveillance area of the Agincourt Health and Population Unit (AHPU) of the University of Witwatersrand. The population are Tsongan who speak Shangaan and comprise self-settled Mozambican refugees who fled to this area during the 1980s across the nearby border and displaced South African citizens. The latter were forcibly displaced from their villages to make way for game reserves or agricultural development and moved to this area when it was the former 'homeland' of Gazankulu. The team collected data using rapid ethnographic assessment and household interviews as part of the Southern Africa Stroke Prevention Initiative (SASPI). The main findings are that stroke-like symptoms are considered to be both a physical and social condition, and in consequence plural healing using clinical and social diagnostics is sought to address both these dimensions. People with stroke-like symptoms maintain their physical, mental and social well-being and deal with this affliction and misfortune by visiting doctors, healers, prophets and churches.