Legislation, health policy, and the utilisation of sexual and reproductive health services by people with disabilities : a mixed methods study in post-conflict Northern Uganda

Introduction : Les droits en matière de santé sexuelle et reproductive (SSR) sont essentiels pour parvenir à une couverture sanitaire universelle pour tous, y compris les personnes handicapées. L'Ouganda a émergé d'un conflit armé de 20 ans qui a engendré à la fois des handicaps et des dommages aux systèmes de santé, en particulier au nord du pays. Une personne sur cinq vit avec un handicap en Ouganda où plusieurs lois et politiques ont été adoptées promouvant les droits des personnes handicapées. Or, leur accès aux services de SSR demeure limité. Les rôles genrés restent omniprésents et les hommes et les jeunes handicapés sont moins ciblés par les programmes de SSR (article 1). Les politiques de santé et leur mise en œuvre nécessitent donc une analyse contextuelle plus approfondie pour protéger le droit à la santé des personnes handicapées. Cette thèse visait à examiner les relations perçues et empiriques entre la législation, les politiques de santé et l'utilisation des services de SSR par les personnes handicapées dans la région post-conflit au nord l'Ouganda. Méthodes : Un devis séquentiel exploratoire de méthodes mixtes s'est appuyé sur le cadre d’analyse des politiques basée sur l'intersectionnalité (IBPA). 1) Nous avons mené une étude de cas multiples auprès de cinq groupes d'acteurs des politiques (personnes handicapées, prestataires de services, organisations de personnes handicapées, organisations nationales et internationales, et décideurs politiques nationaux), thématiquement analysé 45 entretiens approfondis et neuf groupes de discussion, et observé sept structures de santé en matière d'accessibilité. 2) Nous avons analysé des données secondaires provenant des enquêtes démographiques et sanitaires ougandaises de 2006, 2011 et 2016 à l'aide de régressions logistiques multivariées. Le but était d’analyser l'utilisation des services de SSR chez 15 739 personnes au cours de la décennie qui a suivi l'adoption de la Loi sur le handicap en Ouganda. 3) Une revue systématique a été réalisée pour examiner les relations entre la législation, les politiques de santé et l'utilisation des services de SSR parmi les populations vulnérables en Afrique subsaharienne (1994-2019). Résultats : Cette thèse met en exergue quatre résultats principaux. 1) Le cadre de l’IBPA a mis en évidence des relations complexes entre la législation, les politiques de santé et l'utilisation des services de SSR chez les personnes handicapées au nord de l'Ouganda. Ces relations ont été marquées par des défis de mise en œuvre des politiques, la violation des droits des personnes handicapées, et des vulnérabilités croisées vécues par les personnes handicapées, exacerbées par les structures de pouvoir sociétales sous-jacentes. Les perceptions des différents groupes d'acteurs des politiques convergeaient en soulignant les iniquités persistantes en matière de SSR auxquelles sont confrontées les personnes handicapées (articles 2 et 3). L'utilisation des services de SSR s’est accrue au fil du temps. Cependant, elle ne s'est pas améliorée de la même manière pour tous. L'évolution de l'utilisation des services de SSR sur une décennie a révélé des tendances d’utilisation des services nuancées chez les personnes vivant avec différentes incapacités; notamment, les femmes plus nanties avec une incapacité auditive étaient moins susceptibles d'avoir utilisé les services de maternité comparativement aux femmes pauvres non handicapées (article 4). 2) Les cinq groupes d’acteurs des politiques ont identifié des défis en matière de mise en œuvre des politiques et ont émis plusieurs recommandations concrètes et complémentaires pour lever les barrières et rendre opérationnelles les mesures transformatrices, telles que la budgétisation et la collecte de données sur le handicap (articles 2 et 3). 3) Les résultats au niveau local (Ouganda) ont permis de contextualiser ceux au niveau régional (Afrique subsaharienne), et vice versa. Une revue systématique sur une période de 25 ans a montré que les personnes handicapées restent dans l’angle mort de la recherche sur l'analyse des politiques en matière d’utilisation des services SSR (article 5). 4) La pratique de la réflexivité tout au long de la recherche a mis en lumière les tensions dans l'application des normes éthiques dans le contexte de la recherche qualitative en santé mondiale avec des personnes handicapées menée dans le Sud (article 6). Conclusion : Ces résultats permettent aux acteurs des politiques à différents niveaux d'agir – maintenant – pour aborder et corriger les iniquités sociales de santé vécues par les personnes handicapées. Le cadre de l'IBPA s'est avéré un outil analytique et théorique utile pour mieux comprendre les questions complexes liées aux politiques et aux vulnérabilités intersectionnelles auxquelles font face les personnes handicapées. Ce cadre pourrait enrichir d’autres cadres existants d’analyse des politiques. La thèse propose deux adaptations théoriques, soit le cadre du IBPA combiné au « Multiple Streams Framework» de Kingdon et au « Policy Triangle Model» de Walt et Gilson pour de futures recherches en santé mondiale sensibles au handicap et axées sur l'analyse des politiques basées sur l'équité.Introduction: Sexual and reproductive health (SRH) rights are essential to achieve universal health coverage (UHC) for all, including people with disabilities. Uganda emerged from a 20-year armed conflict which created both disability and damage to health systems, especially in the Northern region. One Ugandan in five lives with some disability. Uganda adopted a series of normative tools promoting the rights of people with disabilities. However, their access to SRH services remains limited. More broadly, ableist gendered roles remain pervasive and men and youth with disabilities are less targeted by SRH programmes (Article 1). Health policies and their implementation need deeper contextualised analysis to protect the right to health of people with disabilities. This thesis aimed to examine the perceived and empirical relationships among legislation, health policies, and SRH service utilisation among people with disabilities in post-conflict Northern Uganda. Methods: A sequential exploratory mixed methods design was informed by the Intersectionality-based Policy Analysis (IPBA) framework. First, I conducted a multiple case study with five groups of policy actors (people with disabilities, service providers, disabled people’s organisations, national and international organisations, and national policy-makers). I thematically analysed 45 in-depth interviews and nine focus groups and observed seven health facilities regarding accessibility. Second, I analysed secondary data with multivariable logistic regressions, from the 2006, 2011, and 2016 Uganda Demographic and Health Surveys regarding SRH service use among 15,739 individuals in the decade following the adoption of national legislation promoting the rights of people with disabilities. Third, I conducted a systematic review examining the relationships among legislation, health policies, and SRH service use among vulnerable populations in sub-Saharan Africa (1994-2019). Results: This thesis highlights four main findings. First, the IBPA framework revealed complex relationships among legislation, health policy, and the use of SRH services by people with disabilities in Northern Uganda. These relationships were marked by policy implementation challenges, disability rights violation through multiple barriers to access, and intersecting vulnerabilities experienced by people with disabilities, exacerbated by underlying societal power structures. On one hand, the perceptions of different groups of policy actors converged by emphasising the ongoing SRH inequities faced by people with disabilities (Articles 2 and 3). On the other hand, although SRH service use improved over time, it did not improve equally for everyone. The 10-year SRH service use trend showed nuanced patterns across people with different impairments; notably, richer women with hearing impairments were less likely than poor non-disabled women to have used safe motherhood services (Article 4). Second, despite identifying legislation and policy implementation challenges, the five groups of policy actors suggested several concrete and complementary recommendations to address barriers and operationalise transformative measures, such as disability data collection and budgeting (Articles 2 and 3). Third, research findings at the local level (Uganda) contextualised the findings at the regional level (sub-Saharan Africa), and vice versa. A 25-year systematic review showed that people with disabilities continue to be a blind spot in research on SRH service use and policy analysis (Article 5). Finally, the practice of reflexivity throughout the research revealed tensions in the application of ethics norms in the context of global health qualitative research with people with disabilities conducted in the Global South (Article 6). Conclusion: The IPBA framework proved to be a useful and transformation-oriented analytical tool to disentangle complex policy implementation issues and multiple intersecting vulnerabilities and barriers to SRH service access and utilisation by people with disabilities. This thesis proposes two adapted conceptual frameworks for future disability-sensitive research focusing on equity-focused policy analysis in global health, integrating IBPA with Kingdon’s Policy Streams framework to enhance sensitivity to equity and Walt and Gilson’s Policy Triangle model to enhance sensitivity to the multiple dimensions of (in)equity. The Sustainable Development Goals emphasise inclusiveness and accountability. UHC for all is only possible through transformative action and research to fill knowledge and programmatic gaps, focusing on equity and human and disability rights. This thesis provides evidence enabling policy actors at different levels to act – now – to address and redress the social health inequities experienced by people with disabilities

Policy implementation challenges and barriers to access sexual and reproductive health services faced by people with disabilities: An intersectional analysis of policy actors’ perspectives in post-conflict Northern Uganda

Emerging from a 20-year armed conflict, Uganda adopted several laws and policies to protect the rights of people with disabilities, including their sexual and reproductive health (SRH) rights. However, the SRH rights of people with disabilities continue to be infringed in Uganda. We explored policy actors’ perceptions of existing prodisability legislation and policy implementation, their perceptions of potential barriers experienced by people with disabilities in accessing and using SRH services in post-conflict Northern Uganda, and their recommendations on how to redress these inequities.Through an intersectionality-informed approach, we conducted and thematically analysed 13 in-depth semi-structured interviews with macro level policy actors (national policy-makers and international and national organisations); seven focus groups (FGs) at meso level with 68 health service providers and representatives of disabled people’s organisations (DPOs); and a two-day participatory workshop on disability-sensitive health service provision for 34 healthcare providers

Disability and sexual and reproductive health service utilisation in Uganda: an intersectional analysis of demographic and health surveys between 2006 and 2016

Background: The United Nations through universal health coverage, including sexual and reproductive health (SRH), pledges to include all people, leaving no one behind. However, people with disabilities continue to experience multiple barriers in accessing SRH services. Studies analysing the impacts of disability in conjunction with other social identities and health determinants reveal a complex pattern in SRH service use. Framed within a larger mixed methods study conducted in Uganda, we examined how disability, among other key social determinants of health (SDH), was associated with the use of SRH services. Methods: We analysed data from repeated cross-sectional national surveys, the Uganda Demographic and Health Surveys (DHS) of 2006, 2011, and 2016. The three outcomes of interest were antenatal care visits, HIV testing, and modern contraception use. Our main exposure of interest was the type of disability, classified according to six functional dimensions: seeing, hearing, walking/climbing steps, remembering/concentrating, communicating, and selfcare. We performed descriptive and multivariable logistic regression analyses, which controlled for covariates such as survey year, sex, age, place of residence, education, and wealth index. Interaction terms between disability and other factors such as sex, education, and wealth index were explored. Regression analyses were informed by an intersectionality framework to highlight social and health disparities within groups. Results: From 2006 to 2016, 15.5-18.5% of study participants lived with some form of disability. Over the same period, the overall prevalence of at least four antenatal care visits increased from 48.3 to 61.0%, while overall HIV testing prevalence rose from 30.8 to 92.4% and the overall prevalence of modern contraception use increased from 18.6 to 34.2%. The DHS year, highest education level attained, and wealth index were the most consistent determinants of SRH service utilisation. People with different types of disabilities did not have the same SRH use patterns. Interactions between disability type and wealth index were associated with neither HIV testing nor the use of modern contraception. Women who were wealthy with hearing difficulty (Odds Ratio (OR) = 0.15, 95%CI 0.03 – 0.87) or with communication difficulty (OR = 0.17, 95%CI 0.03 – 0.82) had lower odds of having had optimal antenatal care visits compared to women without disabilities who were poorer

How to navigate the application of ethics norms in global health research: Refections based on qualitative research conducted with people with disabilities in Uganda

As Canadian global health researchers who conducted a qualitative study with adults with and with‑ out disabilities in Uganda, we obtained ethics approval from four institutional research ethics boards (two in Canada and two in Uganda). In Canada, research ethics boards and researchers follow the research ethics norms of the TriCouncil Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2), and the National Guidelines for Research Involving Humans as Research Participants of Uganda (NGRU) in Uganda. The preparation and implementation of this qualitative research raised specifc ethical issues related to research participant privacy and the importance of avail‑ ability and management of fnancial resources. Our feld experience highlights three main issues for refection. First, we demonstrate that, in a global health research context, methodological and logistic adjustments were necessary throughout the research imple‑ mentation process to ensure the protection of study participants’ privacy, especially that of people with disabilities, despite having followed the prescribed Canadian and Ugandan ethics norms. Data collection and management plans were adapted iteratively based on local realities. Second, securing fnancial support as a key aspect of fnancial management was critical to ensure privacy through disability-sensitive data collection strategies. Without adequate funding, the recruitment of research participants based on disability type, sex, and region or the hiring of local sign language interpreters would not have been possible. Third, although the TCPS2 and NGRU underscore the signif‑ cance of participants’ privacy, none of these normative documents clearly express this issue in the context of global health research and disability, nor broadly discuss the ethical issue related to fnancial availability and management

Policy implementation challenges and barriers to access sexual and reproductive health services faced by people with disabilities : an intersectional analysis of policy actors’ perspectives in post-conflict Northern Uganda

Emerging from 20 years of armed conflict, Uganda adopted laws and policies to protect the rights of people with disabilities, including sexual and reproductive health (SRH) rights. This study reflects on the difficulty of implementing disability-focused policy in Uganda. One fifth of the country’s population was estimated to live with some disability (2008). Armed conflict between the Government and the Lord’s Resistance Army caused breakdowns in social systems, and generated widespread trauma for Northern Ugandans. An intersectionality-informed analysis enables policy makers and researchers to examine intersecting social identities and diverse sources of knowledge that can contribute to improved policy solutions.Global Affairs Canada (GAC)Canadian Institutes of Health Research (CIHR)Fonds de Recherche du Québec – Sant

Intersectional jeopardy of disability, gender and sexual and reproductive health : experiences and recommendations of women and men with disabilities in Northern Uganda

The study works to better understand and document how people with disabilities perceive the relationships between their use of sexual and reproductive health (SHR) services, legislation and health policy in three Northern districts of post-conflict Uganda (Gulu, Amuru, Omoro). Findings from interview participants reveal that disabled people’s access to SHR services is shaped by intersections of gender, disability, and violence. They experience discrimination across both private-for-profit and public health facilities. The voices of participants reflected in this article add clarity to the findings. The 2030 Sustainable Development Goals committed to “Leave No One Behind” regardless of social identity.Fonds de recherche du Québec - Sant

Pro-equity legislation, health policy and utilisation of sexual and reproductive health services by vulnerable populations in sub-Saharan Africa : a systematic review

The study reviews original primary research that examined relationships between equity-focused legislation and policy, and the utilisation of sexual and reproductive health (SRH) services by vulnerable populations in sub-Saharan Africa. Findings show that health-related legislation and policy promoted an increase in service utilisation, over time, especially for antenatal care, skilled birth attendance and facility-based delivery. However, social health inequalities persist among subgroups of women. Neither the reviewed studies or policies specifically addressed youth, people living with HIV and people with disabilities. Compared to other regions worldwide, sub-Saharan Africa had the highest average maternal mortality ratio (2017) and HIV prevalence (2018).Fonds de Recherche du Québec - Sant

Rehabilitation: A crucial component in the future of HIV care and support

Provision of antiretroviral therapy (ART) is not an end in itself but a means to achieving improved wellness for people living with HIV. Rehabilitation, broadly defined, is another key contributor to wellness within this context. Understanding the potential for rehabilitation requires that one is able to consider HIV not only within a biomedical model that focuses on body systems, diagnoses and symptoms, but also within a rehabilitation framework that focuses on how these diagnoses and symptoms affect people’s lives more broadly. Furthermore, rehabilitation is a human rights imperative, which deserves the energetic attention enjoyed by other aspects of HIV treatment and care. In particular, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is shining a long-overdue spotlight on the human rights imperatives associated with disability. For South Africa and other countries, proactively and meaningfully engaging rehabilitation in the HIV response will require major shifts on several fronts, including practice, education, policy and research. We argue that in settings where ART delivery is now widespread, HIV should be understood not only as a medical issue, but as a rehabilitation and disability concern. Whereas medicine adds years to life, it is rehabilitation that aims to add life to years

COVID-19-related global health governance and population health priorities for health equity in G20 countries: a scoping review

Abstract Since the declaration of the COVID-19 pandemic, the promotion of health equity including the health of various population sub-groups has been compromised, human rights jeopardised, and social inequities further exacerbated. Citizens worldwide, including in the Group of 20 (G20) countries, were affected by both global health governance (GHG) processes and decisions and public health measures taken by governments to respond to COVID-19. While it is critical to swiftly respond to COVID-19, little is known about how and to what extent the GHG is affecting population health priorities for health equity in global economies such as the G20 countries. This scoping review synthesised and identified knowledge gaps on how the COVID-19-related GHG is affecting population health priorities for policy, programme, and research in G20 countries. We followed the five-stage scoping review methodology promoted by Arksey and O’Malley and the PRISMA Extension for Scoping Reviews guidelines. We searched four bibliographic databases for references conducted in G20 countries and regions and published in English and French, between January 2020 and April 2023. Out of 4,625 references and after two phases of screening, 14 studies met the inclusion criteria. G20 countries included in the review were Australia, Brazil, Canada, China, France, India, Italy, Japan, Russia, South Africa, the United Kingdom, the United States of America, and the European Union. We found insufficient collaboration and coordination and misalignment among governance actors at multiple levels. In most cases, equity considerations were not prioritised while unequal consequences of COVID-19 public health measures on population groups were widely reported. COVID-19-related population health priorities mainly focused on upstream and midstream determinants of health. Our scoping review showed the stark inequities of COVID-19 public health outcomes, coupled with a prevalent lack of coherent collaboration and coordination among governance actors. Moreover, governance as an object of empirical study is still emerging when examining its intersection with global health and population health policy, programme, and research. An urgent shift is required to effectively act upon structural health determinants that include transformative and comprehensive policies for prevention, equity, resilience, and sustainable health