Fontes Marx M, Heap M, Gichane MW, London L. Validity and reliability of maternal recall of pregnancy history and service use among signing Deaf women: a cross-sectional descriptive study from South Africa BMJ Open 2018;8:e023896. doi: 10.1136/bmjopen-2018-023896
Introduction:There is little credible quantitative data on pregnancy histories and outcomes for disabled women in low-income and middle-income countries. The purpose of this study, based in Cape Town, South Africa, was to test the reliability and validity of maternal recall of pregnancy history and service use among a sample of Deaf women who use South African Sign Language (SASL).
Methods: We interviewed 42 signing Deaf women of childbearing age (18–49 years) in SASL using a structured questionnaire in July 2016. To assess reliability, seven participants (16% of the sample) were reinterviewed by different interviewers under the same conditions after 10–30 min. For the analysis we used (1) Cohen’s kappa, an inter-rater statistical method, and (2) overall percentage agreement. Validity was explored by comparing the participants’ pregnancy history to the Western Cape Provincial Health Data Centre (PHDC) database.
Results: The reliability results showed that out of 19 questions 14 demonstrated substantial to perfect agreement kappa scores (kappa between 0.61 and 1) and 5 had the lowest kappa agreement scores (kappa <0.61). With respect to percentage agreement, participants provided identical responses in 87% cases. Overall, women provided more reliable responses to pregnancy outcomes compared with demographic information. Validity results showed that 29 out of 35 Deaf women provided survey responses that matched or nearly matched (83% agreement) the PHDC database for birth history and delivery location.
Conclusion: This study suggests that for this sample of signing Deaf women recall of pregnancy history and service use is reliable and valid. Extending this approach to other similar populations will require further research, but it is important that methods to access hard-to-reach disabled populations are developed so that health system responsiveness to marginal populations can be based on robust evidence.
Available at https://bmjopen.bmj.com/content/8/12/e023896
Fontes Marx M, London L, Müller A. "Missing knowledge of gendered power relations among non-governmental organisations doing right to health work: a case study from South Africa". BMC International Health and Human Rights [Internet]. Springer Nature America, Inc; 2018 Aug 30;18(1).
Despite 20 years of democracy, South Africa still suffers from profound health inequalities. Gender roles and norms are associated with individuals’ vulnerability that lead to ill-health. For instance, gender inequality influences women’s access to health care and women’s agency to make health-related decisions. This paper explores gender-awareness and inclusivity in organisations that advocate for the right to health in South Africa, and analyses how this knowledge impacts their work?
In total, 10 in-depth interviews were conducted with members of The Learning Network for Health and Human Rights (LN), a network of universities and Civil Society Organisations (CSOs) which is explicitly committed to advancing the right to health, but not explicitly gendered in its orientation.
The results show that there is a discrepancy in knowledge around gender and gendered power relations between LN members. This discrepancy in understanding gendered power relations suggests that gender is ‘rendered invisible’ within the LN, which impacts the way the LN advocates for the right to health.
Even organizations that work on health rights of women might be unaware of the possibility of gender invisibility within their organisational structures.
Gichane W, Heap M, Fontes M, London, L. “They must understand we are people”: Pregnancy and maternity service use among signing Deaf women in Cape Town. Disabil Health J. 2017 Apr 6. pii: S1936-6574(17)30066-3. doi: 10.1016/j.dhjo.2017.03.016. [Epub ahead of print].
Women with disabilities are at disproportionate risk for adverse pregnancy outcomes, however, there is limited information on their pregnancy histories. This mixed-methods study focuses on signing Deaf women whose access to health care may be compromised by language barriers related to their disability.
To describe and compare the pregnancy outcomes and maternity service use of a sample of signing Deaf women of child-bearing age in Cape Town to the population of the Western Cape of South Africa.
We interviewed 42 Deaf women selected by non-probability snowball sampling, using a structured questionnaire in South African Sign Language in Cape Town in July 2016.
Average parity of the sample was similar to that of the Western Cape population. Most women had one or two children (74%). Thirty-one percent of women had experienced a miscarriage and 19% had terminated a pregnancy. Almost all women (96%) attended at least one antenatal appointment during their pregnancies, and all deliveries occurred at a health facility. Women primarily relied on writing to communicate during antenatal visits and labor/delivery. The majority of women reported communication issues due to limited interpretation services, and some reported experiencing mistreatment from hospital staff.
This study provides novel information on the pregnancy histories of Deaf women. While maternal service usage was high, the quality of services were inadequate with reports of linguistic barriers and mistreatment. Findings suggest the need to improve maternity care for Deaf women through implementing interpretation services and providing sensitivity training to health care providers.
London L, Cox H, Coomans F. Drug-Resistant TB: Implementing the Right to Health through the Right to Enjoy the Benefits of Scientific Progress. Health and Human Rights 2016; 18(1): 25-41.
The right to enjoy the benefits of scientific progress (REBSP) is a little-known but potentially valuable right that can contribute to rights-based approaches to addressing multidrug-resistant TB (MDR-TB). We argue that better understanding of the REBSP may help to advance legal and civil society action for health rights. While the REBSP does not provide an individual entitlement to have a new drug developed for MDR-TB, it sets up entitlements to expect a state to establish a legislative and policy framework aimed at developing scientific capacity to address the most important health issues and at disseminating the outcomes of scientific research. By making scientific findings available and accessible, people can be enabled to claim the use of science for social benefits. In as much as the market fails to address neglected diseases such as MDR-TB, the REBSP provides a potential counterbalance to frame a positive obligation on states to both marshal their own resources and to coordinate the actions of multiple other actors towards this goal, including non-state actors. While the latter do not hold the same level of accountability as states, the REBSP can still enable the recognition of obligations at a level of “soft law” responsibilities.
Haricharan HJH, Heap M, Coomans F, London L. Can we talk about the right to health care without language? A critique of key international human rights law, based on the consequences experienced by a Deaf woman in Cape Town, South Africa. Disability and Society 2013; 28(1): 54-66
A case study in Cape Town, South Africa, explores the right to health for signing Deaf. By Deaf (capitalised) we understand those permanently sensorily disabled people who are born deaf or who become deaf as children and whose first language is sign – South African Sign Language (SASL) in this country. View all notes patients attending health services and who are unable to communicate in a language they understand. It argues that, without language, Deaf South Africans’ dignity and right to health is violated, resulting in serious consequences such as incorrect diagnosis, improper treatment and standard of care not being applied. It critiques the provisions of the Convention on the Rights of Persons with Disabilities (CRPD) and the limits of General Comment 14 of the International Covenant on Economic, Social and Cultural Rights. The paper demonstrates that Deaf patients do not have informational access to healthcare. It argues that language via professional interpreter services is essential to their South African constitutional right of access to healthcare. General Comment 14 addresses informational accessibility, but this is insufficient without addressing language as a pre-requisite. The CRPD imposes on the South African government human rights obligations to provide professional interpreter services for Deaf people, but unfortunately it allows a loophole by enabling cost to serve as reasonable grounds to defer action.
Haynes L, Legge D, London L, McCoy D, Sanders D, Schuftan C. Will the struggle for health equity and social justice be best served by a Framework Convention on Global Health? Health and Human Rights 2013; 15(1): 111-116.
The idea of a Framework Convention for Global Health (FCGH), using the treaty-
making powers of the World Health Organization (WHO), has been promoted as an opportunity to advance global health equity and the right to health. The idea has promise, but needs more thought regarding risks, obstacles, and strategies. The reform of global health governance must be based on a robust analysis of the political economy out of which the drivers of inequality and the denial of the right to health arise. Some of the published commentary has focused on using the proposed FCGH to institutionalize a paradigm change regarding international aid for health care, i.e., reconceptualizing such aid as obligatory, based on human solidarity rather than strategic considerations, based on global stability and national security. We warn against limiting the project to questions of inter-governmental financial transfers because of the risk of neglecting the underlying structural determinants of health injustice. Such neglect would help to legitimize an unjust and unsustainable global economic regime. We raise further questions about the strategic logic informing any campaign for a FCGH. The governments of the United States and Europe have put considerable effort into weakening WHO through tight donor controls, and it would require heavy pressure to persuade them to sign on to a FCGH. Generating such pressure would require strong popular mobilization around the local and diverse priorities of different communities across the globe, and recognition of a common need for effective regulation at the global level. We argue for a broad-based campaign from which the need for more effective global health regulation (and a FCGH) would emerge as a common theme arising from myriad more specific claims. This type of campaign would respond to local needs, and would also be understood within a global, political, and economic perspective.
Strecker M, Stuttaford M and London L. 2012. Health rights pamphlets: critical literacy and inclusive citizenship, South Africa. Health Promotion International, Oxford Journals
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.
Available at URL: http://heapro.oxfordjournals.org/content/early/2012/12/13/heapro.das067.full
Muller A. 2012.Community participation in health. DENOSA Newsletter 2012
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Meier B, Pardue C and London L. 2012. Implementing community participation through legislative reform: a study of the policy
framework for community participation in the Western Cape province of South Africa. BMC International Health and Human Rights 2012, 12:15
Background: Amidst an evolving post-apartheid policy framework for health, policymakers have sought to
institutionalize community participation in Primary Health Care, recognizing participation as integral to realizing
South Africa’s constitutional commitment to the right to health. With evolving South African legislation supporting
community involvement in the health system, early policy developments focused on Community Health
Committees (HCs) as the principal institutions of community participation. Formally recognized in the National
Health Act of 2003, the National Health Act deferred to provincial governments in establishing the specific roles
and functions of HCs. As a result, stakeholders developed a Draft Policy Framework for Community Participation in
Health (Draft Policy) to formalize participatory institutions in the Western Cape province.
Methods: With the Draft Policy as a frame of analysis, the researchers conducted documentary policy analysis and
semi-structured interviews on the evolution of South African community participation policy. Moving beyond the
specific and unique circumstances of the Western Cape, this study analyzes generalizable themes for rights-based
community participation in the health system.
Results: Framing institutions for the establishment, appointment, and functioning of community participation, the
Draft Policy proposed a formal network of communication – from local HCs to the health system. However, this
participation structure has struggled to establish itself and function effectively as a result of limitations in
community representation, administrative support, capacity building, and policy commitment. Without legislative
support for community participation, the enactment of superseding legislation is likely to bring an end to HC
structures in the Western Cape.
Conclusions: Attempts to realize community participation have not adequately addressed the underlying factors
crucial to promoting effective participation, with policy reforms necessary: to codify clearly defined roles and
functions of community representation; to outline how communities engage with government through effective
and accountable channels for participation; and to ensure extensive training and capacity building of community
representatives. Given the public health importance of structured and effective policies for community participation,
and the normative importance of participation in realizing a rights-based approach to health, this analysis informs
researchers on the challenges to institutionalizing participation in health systems policy and provides practitioners
with a research base to frame future policy reforms.
Available at URL: http://www.biomedcentral.com/1472-698X/12/15
Stuttaford M, Glattstein-Young G, London L. 2012. 'Dialogue, review and reflect': A spiral of co-learning and co-research to surface knowledge on the right to health. Gateways: International Journal of Community Research and Engagement Vol 5 115-134.
This article explores how participants of a Learning Network, comprising members of six civil society organisations and academics from four universities, understand and participate in a dialogical process of co-learning and knowledge generation about the right to health. First, we describe a co-research process that facilitates the surfacing of previously suppressed or undocumented knowledge on the right to health. Second, we explore how co-research captures and disseminates knowledge related to collective action undertaken by civil society organisations working towards translating the right to health into practice. While undertaking this exploration, we maintain an interest in an African appreciation of ‘collective’ knowledge. Through the dialogical process and spiral of reflection, power between the research partners has been shared and spaces for co-learning and co-research created. Subaltern knowledge on the right to health has been placed within a constellation of plural knowledges, rather than at the periphery. Surfacing ‘other’ knowledge on the right to health reflects the lived realities of people and assists in understanding how the right to health can be achieved in practice.
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London et al. 2012. Filling the gap: A Learning Newtork for Health and Human Rights in the Western Cape, South Afica. Health and Human Rights Journal Vol 14, No 1.
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.
Available on URL: http://hhrjournalarchive.org/index.php/hhr/article/view/452/768
Coomans F, Haricharan H, Heap M and London L. 2012. Can we talk about the right to healthcare without language? A critique of key international human rights law, drawing on the experiences of a Deaf woman in Cape Town, South Africa.Disability and Society Vol 28, Issue 1.
A case study in Cape Town, South Africa, explores the right to health for signing Deaf 1 patients attending health services and who are unable to communicate in a language they understand. It argues that, without language, Deaf South Africans’ dignity and right to health is violated, resulting in serious consequences such as incorrect diagnosis, improper treatment and standard of care not being applied. It critiques the provisions of the Convention on the Rights of Persons with Disabilities (CRPD) and the limits of General Comment 14 of the International Covenant on Economic, Social and Cultural Rights. The paper demonstrates that Deaf patients do not have informational access to healthcare. It argues that language via professional interpreter services is essential to their South African constitutional right of access to healthcare. General Comment 14 addresses informational accessibility, but this is insufficient without addressing language as a pre-requisite. The CRPD imposes on the South African government human rights obligations to provide professional interpreter services for Deaf people, but unfortunately it allows a loophole by enabling cost to serve as reasonable grounds to defer action.
Available at URL: http://www.tandfonline.com/doi/full/10.1080/09687599.2012.699277#.UpXue-JLJZI
Bowers et al. 2009. Obstacles to the rights of access to health care for farm worker women in the Western Cape. Public Health Movement, South Africa, 2009, No 1.
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London L, Heap M, Baldwin-Ragaven L. 2009. Health and Human Rights: New challenges for social responsiveness.Gateways: International Journal of Community Research and Engagement 2009; 2: 61–81.
South Africa’s struggle against apartheid discrimination, including struggles in the health sector, laid the basis for a vibrant engagement of staff and students in human rights research, teaching and outreach in the Health Sciences Faculty at the University of Cape Town (UCT). This article provides a brief overview of this background context, then shows how this engagement has continued with new challenges emerging in the post-apartheid democratic period. Teaching at undergraduate and postgraduate levels has been complemented by a programme of ‘Training the Trainers’ in health and human rights. The programme targets teachers of health professionals at institutions in South and Southern Africa, resulting in national adoption of human rights competencies as an essential component of health professionals’ skills base. Research has also extended lessons learnt from the apartheid period into work with vulnerable groups, such as rural farm workers and the deaf, and seeks to build the capacity of marginal populations to change the conditions of their vulnerability in order to realize their rights. Partnerships with civil society organisations have been a strong thread, creating new knowledge and new ways of joint work towards realizing the right to health, including advocacy engagement in civil society movements and regional networks. Further, a focus on health professionals’ practice, in terms of dealing with potential dual loyalty conflicts and their role as gatekeepers in the health services on matters of patients’ rights, has shaped the research agenda. This article illustrates how knowledge production for the public good extends beyond notions of enhancing economic productivity for national development and provides a base for transdisciplinary and transinstitutional engagement. Additionally, non-traditional forms of knowledge networking and transfer have also been explored, including engagement with policy-makers and health managers. Finally, it is shown how the portfolio of social responsiveness activities in the health and human rights envelope has offered significant and novel mutual benefits to the University and the community.
Available on URL: http://epress.lib.uts.edu.au/journals/index.php/ijcre/article/view/1165/1334
London L. 2008. What is a human rights approach to health and does it matter? Health and Human Rights Journal Volume 10 No 1.
A human rights approach to health is critical to address growing global health inequalities. Three aspects of the nature of health as a right are relevant to shaping a human rights approach to health: 1) the indivisibility of civil and political rights, and socio-economic rights; 2) active agency by those vulnerable to human rights violations; and 3) the powerful normative role of human rights in establishing accountability for protections and freedoms. Health professionals’ practice, typically governed by ethical codes, may benefit from human rights guidelines, particularly in situations of dual loyalty where clients’ or communities’ human rights are threatened. Moreover, institutional accountability for protecting human rights is essential to avoid shifting responsibility solely onto the health professional. Human rights approaches can include holding states and other parties accountable, developing policies and programs consistent with human rights, and facilitating redress for victims of violations of the right to health. However, underlying all models is the need to enable active social mobilization, without which legal approaches to rights lack sustainability and power. Evidence from South and Southern Africa has shown that different conceptions of what is meant by human rights impact substantially on state willingness and ability to meet constitutional obligations with regard to the right to health. New approaches to health policy development, which draw on the agency of vulnerable groups, link local struggles with
their global context, and explicitly incorporate rights frameworks into public health planning are needed. Models that move away from individualizing conflict over rights between health professionals as disempowered duty bearers and patients as frustrated
rights holders, toward more mutual approaches to shared rights objectives may be possible and are being actively pursued through the development of a learning network to realize the right to health in South Africa.
Available on URL: http://www.hhrjournal.org/2013/09/13/what-is-a-human-rights-based-approach-to-health-and-does-it-matter/
London, L. 2007. Issues of equity are also issues of rights: Lessons from experiences in southern Africa. BMC Public Health 7:14.
Background: Human rights approaches to health have been criticized as antithetical to equity, principally because they are seen to prioritise rights of individuals at the expense of the interests of groups, a core tenet of public health. The objective of this study was to identify how human rights approaches can promote health equity.
Methods: The Network on Equity in Health in Southern Africa undertook an exploration of three regional case studies – antiretroviral access, patient rights charters and civic organization for health. A combination of archival reviews and stakeholder interviews were complemented with a literature review to provide a theoretical framework for the empirical evidence.
Results: Critical success factors for equity are the importance of rights approaches addressing the full spectrum from civil and political, through to socio-economic rights, as well as the need to locate rights in a group context. Human rights approaches succeed in achieving health equity when coupled with community engagement in ways that reinforce community capacity, particularly when strengthening the collective agency of its most vulnerable groups. Additionally, human rights approaches provide opportunities for mobilising resources outside the health sector, and must aim to address the public-private divide at local, national and international levels.
Conclusion: Where it is clear that rights approaches are predicated upon understanding the need to prioritize vulnerable groups and where the way rights are operationalised recognizes the role of agency on the part of those most affected in realising their socio-economic rights, human rights approaches appear to offer powerful tools to support social justice and health equity.
Available on URL: http://www.biomedcentral.com/1471-2458/7/14