Governance and participation in health

Sudanese Women at the Heart of the Revolution
Gaafar R; Shawkat O: African Feminism, 2019

Country-wide peaceful demonstrations against the regime in Sudan have involved women as organised activists. Women in marginalized areas of conflict such as Darfur, South Sudan, the Nuba Mountains and the Blue Nile have lost their children, family and livelihood to war and famine. In addition to their experience of socio-economic deprivation, many of those who fled to the capital Khartoum have been abandoned by their husbands who are unable to support their families. The women’s group No To Women’s Oppression provides legal aid, advocacy and awareness campaigns and monitors violations of human rights, a solid and active component of the resistance. Women activist in the Central Committee for Doctors and other organisations has, however, made them particularly prone to arrests and harassment. Women have also played a vital part in documenting the movement from the inside, especially in providing footage and proof of women's experiences of activism and of their conditions and the brutality they face.

Treatment Action Campaign celebrates two decades of fighting against the odds — and winning
Ho U: Daily Maverick, December 2018

December 2018 marked the 20th anniversary of the birth of the Treatment Action Campaign (TAC); a story that began with a T-shirt with the slogan “HIV-positive” and came to be a thorn in government’s side, a symbol of hope for people dying from HIV/Aids and an icon of activism still needed in an age of democracy. Days before the protest that founded the TAC, co-founder Zackie Achmat had spoken at the funeral of Aids activist Simon Nkoli. He vowed to fight for access to treatment, knowing from his own experience that if the right medicines were affordable and accessible people would not be dying. Four days after that protest action, activist Gugu Dlamini, who had disclosed her HIV status publicly, speaking on radio in Zulu on World Aids Day, was beaten to death in KwaMashu. “Those two events created the anger and passion that would become the momentum for organising and mobilising,” says co-founder Mark Heywood. As one more person put on an “HIV-positive” T-shirt and stood to challenge HIV stigma, more people joined. Recruitment and empowerment came through a strong treatment literacy programme rooted in spreading the word from neighbour to neighbour, patient to patient. This patient-driven, community activism would become a hallmark of the movement. It meant that people could see the power and the purpose in marching to the opening of Parliament each year, taking part in in civil disobedience campaigns and joining rallies for AZT for pregnant women and pushing big pharmaceutical companies to make drugs available.

Using Health Committees to Promote Community Participation as a Social Determinant of the Right to Health: Lessons from Uganda and South Africa
Mulumba M; London L; Nantaba J; Ngwena C: Health and Human Rights Journal 20(2), PMID: 30568398, 2018

This paper provides perspectives from a three-year intervention whose general objective was to develop and test models of good practice for health committees in South Africa and Uganda. It describes the aspects that the authors found critical for enhancing the potential of such committees in driving community participation as a social determinant of the right to health. Interventions in South Africa and Uganda indicate that community participation is not only a human right in itself but an essential social determinant of the right to health. The interventions show that health committees provide a mechanism that enables communities to be active and informed participants in the creation of a responsive health system that serves them efficiently. The results are argued to confirm the effectiveness of rights-based trainings and exchanges in strengthening committee members’ sense of agency, their capacity to engage the health system, and their ability to exercise claims to health rights. They also contribute evidence of health committees’ potential to play a critical role in advancing community participation as a social determinant of the right to health.
These participatory spaces are observed to bridge the gap between communities and health facilities, making services responsive to community needs and contributing to the realization of health as a human right.

Exploring power and privilege through photovoice
Ardrey J: Liverpool School of Tropical Medicine and Health Systems Global, UK

At the recent HSR2018 Symposium delegates explored how to challenge embedded power dynamics in health systems research through participatory methodologies. One of the innovations that the Local Organising Committee (LOC) introduced for HSR2018 was the inclusion in the programme of a multi-project Photovoice exhibition. Photovoice is a participatory action research methodology that involves the taking of images by individuals, the discussion and analysis of these images and the use of the images to communicate the lived experiences, strengths and challenges of the photographers. Colleagues commented that this was the largest health based Photovoice exhibition to date but more significant was the scope of the material displayed. The author argues that Photovoice exhibition activities are a great representation of the strength and challenges of using this visual participatory methodology. Using photos can promote the voice of the less powerful seems such a laudable and simple aim but it is important not to overlook the underlying power shifting aims of the methodology.

Botswana Labour Migrants Association (BoLAMA)
BoLAMA: Botswana, 2018

Botswana Labour Migrants Association (BoLAMA) is a non-profit organization registered in accordance with the laws of Botswana. The organization is comprised of former migrant mineworkers and their beneficiaries. The organization provides assistance to ex-miners and their beneficiaries by facilitating their access to social security benefits most of which involves occupational compensation from mines. Among other issues BoLAMA works to address social determinants of TB in mining communities. TB is the leading cause of death among ex-miners and it contributes to the socio-economic status of ex-miners. BoLAMA’s mandate is in line with various prescribes and targets set in global, continental, regional and national mining sector related instruments, protocols and frameworks. BoLAMA carries out its work under three (3) thematic areas:- extractives, labour migration and economic empowerment.

Policy brief on the implementation of devolution in Zimbabwe: recommendations on the structure / composition, functions and funding of Provincial and Metropolitan Councils (PMCs)
Centre for Community Development In Zimbabwe, Harare Residents Trust: Harare, November 2018

This brief was developed in consultation with key local government stakeholders. It provides an outline of key concerns and issues regarding devolution and proffers recommendations for consideration by government and parliament in crafting the new legislation to guide the implementation of devolution in Zimbabwe. The issue of devolution is topical and government has indicated its commitment to implementing it. However, the delay in the crafting of legislation to guide devolution is a serious cause for concern for citizens and other local government stakeholders. The devolution of power to local and provincial councils helps to achieve fair and balanced development through provincial and metropolitan councils, which are allowed by the Constitution to set local development priorities. The authors argue that governmental powers must be devolved to the local people so that there is increased transparency and accountability in governance and decision-making as well as management of public affairs and resources by local authorities. Provincial governments must be fully in control of their local authorities whilst central government plays an oversight role to ensure that public resources are used in a transparent manner.

The health system accountability impact of prison health committees in Zambia
Topp S; Sharma A; Chileshe C; et al: International Journal for Equity in Health 17(74) 1-13, 2018

From 2013, the Zambian Corrections Service (ZCS) worked with partners to strengthen prison health systems and services. One component of that work led to the establishment of facility-based Prison Health Committees (PrHCs) comprising of both inmates and officers. The authors present findings from a nested evaluation of the impact of eight PrHCs 18 months after programme initiation. In-depth-interviews were conducted with 11 government ministry and Zambia Corrections Service officials and 6 facility managers. Sixteen focus group discussions were convened separately with Prison Health Committees members and non-members in 8 facilities. Memos were generated from participant observation in workshops and meetings preceding and after implementation. The authors sought evidence of Prison Health Committees impact, refined with reference to Joshi’s three domains of impact for social accountability interventions in state, society, and state-society relations. Further analysis considered how project outcomes influenced structural dimensions of power, ability and justice relating to accountability. Data pointed to a compelling series of short- and mid-term outcomes, with positive impact on access to, and provision of, health services across most facilities. Inmates reported being empowered via a combination of improved health literacy and committee members’ newly-given authority to seek official redress for complaints and concerns. Inmates and officers described committees as improving inmate-officer relations by providing a forum for information exchange and shared decision making. Contributing factors included more consistent inmate-officer communications through committee meetings, which in turn enhanced trust and co-production of solutions to health problems. Nonetheless, long-term sustainability of accountability impacts may be undermined by permanently skewed power relations, high rates of inmate turnover, variable commitment from some officers in-charge, and the anticipated need for more oversight and resources to maintain members’ skills and morale. The authors showed that Prison Health Committees do have potential to facilitate improved social accountability in both state and societal domains and at their intersection, for an extremely vulnerable population. However, sustained and meaningful change will depend on a longer-term strategy that integrates structural reform and is delivered through meaningful cross-sectoral partnership.

Gendered norms of responsibility: reflections on accountability politics in maternal health care in Malawi
Lodenstein E; Pedersen K; Botha K; et al: International Journal for Equity in Health 17(131) 1-15, 2018

This paper aims to provide insights into the role of traditional authorities in two maternal health programmes in Northern Malawi. Among strategies to improve maternal health, these authorities issue by-laws that are local rules to increase the uptake of antenatal and delivery care. The study uses a framework of gendered institutions to critically assess the by-law content, process and effects and to understand how responsibilities and accountabilities are constructed, negotiated and reversed, in a qualitative study in five health centre catchment areas in Northern Malawi. In the study district, traditional leaders introduced three by-laws that oblige pregnant women to attend antenatal care; bring their husbands along and; and to give birth in a health centre. If women fail to comply with these rules, they risk being fined or denied access to maternal health services. The findings show that responsibilities and accountabilities are negotiated and that by-laws are not uniformly applied. Whereas local officials support the by-laws, lower level health cadres’ and some community members contest them, in particular, the principles of individual responsibility and universality. The study adds new evidence on the understudied phenomenon of by-laws. From a gender perspective, the by-laws are problematic as they individualise the responsibility for maternal health care and discriminate against women in the definition and application of sanctions. Through the by-laws, supported by national policies and international institutions, the authors argue that women bear the full responsibility for failures in maternal health care, suggesting a form of ‘reversed accountability’ of women towards global maternal health goals. This can negatively impact on women’s reproductive health rights and obstruct ambitions to achieve gender inequality and health equity. It is suggested that contextualised gender and power analysis in health policymaking and programming as well as in accountability reforms could help to identify these challenges and potential unintended effects.

Reflecting strategic and conforming gendered experiences of community health workers using photovoice in rural Wakiso district, Uganda
Musoke D; Ssemugabo C; Ndejjo R; Ekirapa-Kiracho E; et al: Human Resources for Health 16(41) 1-9, 2018

This paper explores the different roles of male and female community health workers in rural Wakiso district, Uganda, using photovoice, as a community-based participatory research approach. The authors trained ten community health workers on key concepts about gender and photovoice. The community health workers took photographs for 5 months on their gender-related roles which were discussed in monthly meetings. The discussions from the meetings were recorded, transcribed, and translated to English, and emerging data were analysed using content analysis. Although responsibilities were the same for both male and female community health workers, they reported that in practice, community health workers were predominantly involved in different types of work depending on their gender. Social norms led to men being more comfortable seeking care from male community health workers and females turning to female community health workers. Due to their privileged ownership and access to motorcycles, male community health workers were noted to be able to assist patients faster with referrals to facilities during health emergencies, cover larger geographic distances during community mobilization activities, and take up supervisory responsibilities. Due to the gendered division of labour in communities, male community health workers were also observed to be more involved in manual work such as cleaning wells. The gendered division of labour also reinforced female caregiving roles related to child care, and also made female community health workers more available to address local problems. Community health workers reflected both strategic and conformist gendered implications of their community work. The authors argue that the differing roles and perspectives about the nature of male and female community health workers while performing their roles should be considered while designing and implementing community health workers programmes, without further retrenching gender inequalities or norms.

Universal health coverage and community engagement
Odugleh-Kolev A; Parrish-Sprowl J: World Health Organisation 96(9)660-661, 2018

In this article, the authors reflect on how efforts towards UHC could offer an opportunity to address those aspects within health systems that continue to hinder efforts to meaningfully engage with patients, their families and local communities. The backbone of these efforts should be a health workforce that is skilled in engagement, responsive to local context and to the needs and expectations of those using their services. Community engagement was introduced in the 2013–2016 Ebola virus disease outbreak in recognition of the important role of response staff and their ability to engage with communities, in contrast to social mobilization or behaviour-change interventions. Engagement and empowerment of health service users and community members also re-emerged as a core strategy in the WHO Framework on Integrated People-Centred Health Services, which was formally adopted by Member States in 2016. To move towards a more meaningful understanding of what community engagement is and how it works, the authors suggest that several changes need to take place. First, to recognize that health systems have a fundamental responsibility and obligation for engaging with patients, their families, local communities, as well as a range of stakeholders, partners and sectors, recognising the physiological, emotional, mental and social interconnection of people. Health systems and communities are observed to be in continuous and interdependent action. If community engagement becomes a focus for UHC efforts, it could promote approaches that recognize that health and well-being are co-produced, and that empowers both health-care providers and communities.