Ana Lorena Ruano

Social participation within a context of political violence: implications for the promotion and exercise of the right to health in Guatemala.

Social participation has been understood in many different ways, and there are even typologies classifying participation by the degree of a populations control in decision making. Participation can vary from a symbolic act, which does not involve decision making, to processes in which it constitutes the principal tool for redistributing power within a population. This article argues that analyzing social participation from a perspective of power relations requires knowledge of the historical, social, and economic processes that have characterized the social relations in a specific context. Applying such an analysis to Guatemala reveals asymmetrical power relations characterized by a long history of repression and political violence. The armed conflict during the second half of the 20th century had devastating consequences for a large portion of the population as well as the countrys social leadership. The ongoing violence resulted in negative psychosocial effects among the population, including mistrust toward institutions and low levels of social and political participation. Although Guatemala made progress in creating spaces for social participation in public policy after signing the Peace Accords in 1996, the country still faces after-effects of the conflict. One important task for the organizations that work in the field of health and the right to health is to help regenerate the social fabric and to rebuild trust between the state and its citizens. Such regeneration involves helping the population gain the skills, knowledge, and information needed in order to participate in and affect formal political processes that are decided and promoted by various public entities, such as the legislative and executive branches, municipal governments, and political parties. This process also applies to other groups that build citizenship through participation, such as neighborhood organizations and school and health committees.

Perceptions and experiences of access to public healthcare by people with disabilities and older people in Uganda

IntroductionIn the year 2000, a set of eight Millennium Development Goals (MDGs) were presented as a way to channel global efforts into the reduction of poverty and the promotion of social development. A global discussion regarding how to renew these goals is underway and it is in this context that the Goals and Governance for Global Health (Go4Health) research consortium conducted consultations with marginalized communities in Asia, Latin America, the Pacific and Africa as a way to include their voices in world’s new development agenda. The goal of this paper is to present the findings of the consultations carried out in Uganda with two groups within low-resource settings: older people and people living with disabilities.MethodsThis qualitative study used focus group discussions and key informant interviews with older people in Uganda’s Kamwenge district, and with persons with disabilities from the Gulu region. Thematic analysis was performed and emerging categories and themes identified and presented in the findings.FindingsOur findings show that a sense of community marginalization is present within both older persons and persons living with disabilities. These groups report experiencing political sidelining, discrimination and inequitable access to health services. This is seen as the key reason for their poor health. Clinical services were found to be of low quality with little or no access to facilities, trained personnel, and drugs and there are no rehabilitative or mental health services available.ConclusionUganda must fulfil its international obligations and take progressive measures to meet the right to health for all its peoples, but especially allocate its limited resources to proactively support its most marginalized citizens. The growing impetus within post-2015 development negotiations to redress in-country health and other inequalities through a comprehensive systems approach is of importance in the Ugandan development context. This approach reflects the participant’s perspectives, which also calls for a more equitable approach to health and development as opposed to a narrow, vertical focus on specific population groups, as was the case with the MDGs.

Abuse and discrimination towards indigenous people in public health care facilities: experiences from rural Guatemala

BackgroundHealth inequalities disproportionally affect indigenous people in Guatemala. Previous studies have noted that the disadvantageous situation of indigenous people is the result of complex and structural elements such as social exclusion, racism and discrimination. These elements need to be addressed in order to tackle the social determinants of health. This research was part of a larger participatory collaboration between Centro de Estudios para la Equidad y Gobernanza en los Servicios de Salud (CEGSS) and community based organizations aiming to implement social accountability in rural indigenous municipalities of Guatemala. Discrimination while seeking health care services in public facilities was ranked among the top three problems by communities and that should be addressed in the social accountability intervention. This study aimed to understand and categorize the episodes of discrimination as reported by indigenous communities.MethodsA participatory approach was used, involving CEGSS’s researchers and field staff and community leaders. One focus group in one rural village of 13 different municipalities was implemented. Focus groups were aimed at identifying instances of mistreatment in health care services and documenting the account of those who were affected or who witnessed them. All of the 132 obtained episodes were transcribed and scrutinized using a thematic analysis.ResultsEpisodes described by participants ranged from indifference to violence (psychological, symbolic, and physical), including coercion, mockery, deception and racism. Different expressions of discrimination and mistreatment associated to poverty, language barriers, gender, ethnicity and social class were narrated by participants.ConclusionsAddressing mistreatment in public health settings will involve tackling the prevalent forms of discrimination, including racism. This will likely require profound, complex and sustained interventions at the programmatic and policy levels beyond the strict realm of public health services. Future studies should assess the magnitude of the occurrence of episodes of maltreatment and racism within indigenous areas and also explore the providers’ perceptions about the problem.

Health, equity and the post-2015 agenda: raising the voices of marginalized communities

In September 2012 the United Nations (UN) initiated a process that would extend and enhance the unfinished agenda of the Millennium Development Goals (MDGs), integrating a new vision for sustainable development beyond the year 2015. The initial consultation phase has been completed, with the UN and partner organizations undertaking eleven thematic consultations, including one on health. It is in this context that the European Commission (EC) has tasked the research consortium Goals and Governance for Global Health (Go4Health) with providing recommendations for the post-2015 health-related development goals and including voices that are routinely excluded from health-related decision-making processes. This has not been an easy task. It has led us to question how to define marginalization, how to access marginalized communities, as well as how community members could provide informed consent. The context of the communities we worked with was far removed from the reality of the post-2015 debates, where the MDGs and the new goals are remote and abstract, and where the promise of immediate benefit from participation could not be assured. Given the social, historical, cultural, ethnic and geographical diversity of our chosen community partners, and the diversity of their lived experiences, could their unique situations be generalized in ways that could influence the global debate? In this special issue, we have tried to explore the uniqueness and the commonalities of the issues and barriers that marginalized communities face all over the globe, and present them in individual papers that, together, provide a nuanced and complex picture of the challenges that face the post-2015 health-related agenda setting-process.

Making the post-MDG global health goals relevant for highly inequitable societies: findings from a consultation with marginalized populations in Guatemala

IntroductionThe United Nations presented a set of Millennium Development Goals that aimed to improve social and economic development and eradicate poverty by 2015. Most low and middle-income countries will not meet these goals and today there is a need to set new development agenda, especially when it comes to health. The paper presents the findings from a community consultation process carried out within the Goals and Governance for Global Health (GO4Health) research consortium in Guatemala, which aims to identify community needs and expectations around public policies and health services.MethodsThrough a participative and open consultation process with experts, civil society organizations and members of the research team, the municipalities of Tectitan and Santa Maria Nebaj were selected. A community consultation process was undertaken with community members and community leaders. Group discussions and in-depth interviews were conducted and later analyzed using thematic analysis, a qualitative method that can be used to analyze data in a way that allows for the identification of recurrent patterns that can be grouped into categories and themes, was used.FindingsFollowing the Go4Health framework’s domains for understanding health-related needs, the five themes identified were health, social determinants of health, essential health needs and their provision, roles and responsibilities of relevant stakeholders and community participation in decision-making. Participants reported high levels of discrimination related to ethnicity, to being poor and to living in rural areas. Ethnicity played a major role in how community members feel they are cared for in the health system.ConclusionAchieving health goals in a context of deep-rooted inequality and marginalization requires going beyond the simple expansion of health services and working with developing trusting relationships between health service providers and community members. Involving community members in decision-making processes that shape policies will contribute to a larger process of community empowerment and democratization. Still, findings from the region show that tackling these issues may prove complicated and require going beyond the health system, as this lack of trust and discrimination has permeated to all public policies that deal with indigenous and rural populations.

The right to health of non-nationals and displaced persons in the sustainable development goals era: challenges for equity in universal health care

IntroductionUnder the Millennium Development Goals (MDGs), United Nations (UN) Member States reported progress on the targets toward their general citizenry. This focus repeatedly excluded marginalized ethnic and linguistic minorities, including people of refugee backgrounds and other vulnerable non-nationals that resided within a States’ borders. The Sustainable Development Goals (SDGs) aim to be truly transformative by being made operational in all countries, and applied to all, nationals and non-nationals alike. Global migration and its diffuse impact has intensified due to escalating conflicts and the growing violence in war-torn Syria, as well as in many countries in Africa and in Central America. This massive migration and the thousands of refugees crossing borders in search for safety led to the creation of two-tiered, ad hoc, refugee health care systems that have added to the sidelining of non-nationals in MDG-reporting frameworks.ConclusionWe have identified four ways to promote the protection of vulnerable non-nationals’ health and well being in States’ application of the post-2015 SDG framework: In setting their own post-2015 indicators the UN Member States should explicitly identify vulnerable migrants, refugees, displaced persons and other marginalized groups in the content of such indicators. Our second recommendation is that statisticians from different agencies, including the World Health Organization’s Gender, Equity and Human Rights programme should be actively involved in the formulation of SDG indicators at both the global and country level. In addition, communities, civil society and health justice advocates should also vigorously engage in country’s formulation of post-2015 indicators. Finally, we advocate that the inclusion of non-nationals be anchored in the international human right to health, which in turn requires appropriate financing allocations as well as robust monitoring and evaluation processes that can hold technocratic decision-makers accountable for progress.

Engaging with complexity to improve the health of indigenous people: a call for the use of systems thinking to tackle health inequity

The 400 million indigenous people worldwide represent a wealth of linguistic and cultural diversity, as well as traditional knowledge and sustainable practices that are invaluable resources for human development. However, indigenous people remain on the margins of society in high, middle and low-income countries, and they bear a disproportionate burden of poverty, disease, and mortality compared to the general population. These inequalities have persisted, and in some countries have even worsened, despite the overall improvements in health indicators in relation to the 15-year push to meet the Millennium Development Goals. As we enter the Sustainable Development Goals (SDGs) era, there is growing consensus that efforts to achieve Universal Health Coverage (UHC) and promote sustainable development should be guided by the moral imperative to improve equity. To achieve this, we need to move beyond the reductionist tendency to frame indigenous health as a problem of poor health indicators to be solved through targeted service delivery tactics and move towards holistic, integrated approaches that address the causes of inequalities both inside and outside the health sector. To meet the challenge of engaging with the conditions underlying inequalities and promoting transformational change, equity-oriented research and practice in the field of indigenous health requires: engaging power, context-adapted strategies to improve service delivery, and mobilizing networks of collective action. The application of systems thinking approaches offers a pathway for the evolution of equity-oriented research and practice in collaborative, politically informed and mutually enhancing efforts to understand and transform the systems that generate and reproduce inequities in indigenous health. These approaches hold the potential to strengthen practice through the development of more nuanced, context-sensitive strategies for redressing power imbalances, reshaping the service delivery environment and fostering the dynamics of collective action for political reform.

Reflections on the Unintended Consequences of the Promotion of Institutional Pregnancy and Birth Care in Burkina Faso

The policy of institutional delivery has been the cornerstone of actions aimed at monitoring and achieving MDG 5. Efforts to increase institutional births have been implemented worldwide within different cultural and health systems settings. This paper explores how communities in rural Burkina Faso perceive the promotion and delivery of facility pregnancy and birth care, and how this promotion influences health-seeking behaviour. A qualitative study was conducted in South-Western Burkina Faso between September 2011 and January 2012. A total of 21 in-depth interviews and 8 focus group discussions with women who had given birth recently and community members were conducted. The data were analyzed using qualitative content analysis and interpreted through Merton’s concept of unintended consequences of purposive social action. The study found that community members experienced a strong pressure to give birth in a health facility and perceived health workers to define institutional birth as the only acceptable option. Women and their families experienced verbal, economic and administrative sanctions if they did not attend services and adhered to health worker recommendations, and reported that they felt incapable of questioning health workers’ knowledge and practices. Women who for social and economic reasons had limited access to health facilities found that the sanctions came with increased cost for health services, led to social stigma and acted as additional barriers to seek skilled care at birth. The study demonstrates how the global and national policy of skilled pregnancy and birth care can occur in unintentional ways in local settings. The promotion of institutional care during pregnancy and at birth in the study area compromised health system trust and equal access to care. The pressure to use facility care and the sanctions experienced by women not complying may further marginalize women with poor access to facility care and contribute to worsened health outcomes.

Interventions in Primary Care and their contributions to improving equity in health

Primary Care constitutes the first and most important point of contact between the health system and the population it is there to serve. Through it, essential, continuous, comprehensive, and coordinated care that does not discern between gender, disease or geographical location can be provided [1]. Whether delivered by physicians or other members of the primary care workforce, evidence shows that strong primary care is associated with better access to and quality of care, and with better health outcomes. Evidence also suggests that interventions can specifically strengthen primary care to improve access and that in turn improves equity of outcomes [2]. Today, the International Journal for Equity in Health announces the launch of a new thematic series that looks at the contributions that primary care interventions have on equity levels in health systems. Our goal is to provide a space to document and analyze the primary care reforms and interventions that have been undertaken in recent years by communities, organizations, countries and world agencies. While the thematic series will continue in a rolling fashion, today we publish the first set of papers in the series that focuses on research on successful stories, as well as lessons learned so that previous experiences may inform future efforts that can be implemented at the global, national or community level. There have been several primary care interventions that aim to improve equity levels in China and Tibet, and this first article collection reflects this with four articles. First, we look at usual source of care and its relationship with primary care in Guandong province [3]. This study, which is the first to compare primary care contributions through controlling for the source of care, found that patients that had a usual primary care provider reported higher quality of medical care experiences. In line with these findings, another study also carried out in Guangdong examined four models of primary care delivery models for people with chronic conditions and found that an insurance mandate that uses family practice physicians as ‘gatekeepers’ seemed to work best when it came to promoting access and quality care for patients [4]. The third paper in our thematic series looks at integrated care delivery and health care seeking by people with chronic conditions in Henan province and found the integrated care delivery model was critical in guiding patient’s health seeking behavior, reduced health inequities, and mitigated disparities for older patients [5]. Our fourth paper evaluates the contribution that primary care has to health in Tibet, and found a positive association between higher quality primary care and better self-rated health status. The study findings point to the importance of strengthening this level of care during future health system reforms [6]. From Tibet we move to Sweden, where primary care is seen as the key to developing equitable health care. The study found that patients/clients perceived that their ethnic origin and mental health status played an important role in the quality of care that they received, and that employing health providers that are proficient in the languages that are spoken in the communities they serve is a way of providing more equitable primary care services [7]. In Manitoba, a study found that pay-for-performance for primary care physicians had a limited impact on vaccination rates and in this study did not appear to reduce health inequity [8]. To close this collection, the article by Carriel et al. looks at the integration of traditional indigenous medicine into primary care in Nicaragua, and found that careful study and monitoring of legislation is needed in order to implement and carry out policy alignments that can lead to the full integration of his in health plans at the local and national levels. The International Journal for Equity in Health welcomes further contributions to this rolling thematic series, particularly as countries around the world continue to grapple with issues around reforming and strengthening primary care systems in all settings.

From knowing our needs to enacting change: findings from community consultations with indigenous communities in Bangladesh

IntroductionIndigenous peoples are among the most marginalized peoples in the world due to issues relating to well-being, political representation, and economic production. The research consortium Goals and Governance for Global Health (Go4Health) conducted a community consultation process among marginalized groups across the global South aimed at including their voices in the global discourse around health in the post-2015 development agenda. This paper presents findings from the consultations carried out among indigenous communities in Bangladesh.MethodsFor this qualitative study, our research team consulted the Tripura and Mro communities in Bandarban district living in the isolated Chittagong Hill Tracts region. Community members, leaders, and key informants working in health service delivery were interviewed. Data was analyzed using thematic analysis.FindingsOur findings show that remoteness shapes the daily lives of the communities, and their lack of access to natural resources and basic services prevents them from following health promotion messages. The communities feel that their needs are impossible to secure in a politically indifferent and sometimes hostile environment.ConclusionCommunities are keen to participate and work with duty bearers in creating the conditions that will lead to their improved quality of life. Clear policies that recognize the status of indigenous peoples are necessary in the Bangladeshi context to allow for the development of services and infrastructure.