| 1. |
- Brooks, Chloe, et al.
(författare)
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Introducing visual participatory methods to develop local knowledge on HIV in rural South Africa
- 2017
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Ingår i: BMJ Global Health. - : BMJ Publishing Group Ltd. - 2059-7908. ; 2:3
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: South Africa is a country faced with complex health and social inequalities, in which HIV/AIDS has had devastating impacts. The study aimed to gain insights into the perspectives of rural communities on HIV-related mortality.METHODS: A participatory action research (PAR) process, inclusive of a visual participatory method (Photovoice), was initiated to elicit and organise local knowledge and to identify priorities for action in a rural subdistrict underpinned by the Agincourt Health and Socio-Demographic Surveillance System (HDSS). We convened three village-based discussion groups, presented HDSS data on HIV-related mortality, elicited subjective perspectives on HIV/AIDS, systematised these into collective accounts and identified priorities for action. Framework analysis was performed on narrative and visual data, and practice theory was used to interpret the findings.FINDINGS: A range of social and health systems factors were identified as causes and contributors of HIV mortality. These included alcohol use/abuse, gender inequalities, stigma around disclosure of HIV status, problems with informal care, poor sanitation, harmful traditional practices, delays in treatment, problems with medications and problematic staff-patient relationships. To address these issues, developing youth facilities in communities, improving employment opportunities, timely treatment and extending community outreach for health education and health promotion were identified.DISCUSSION: Addressing social practices of blame, stigma and mistrust around HIV-related mortality may be a useful focus for policy and planning. Research that engages communities and authorities to coproduce evidence can capture these practices, improve communication and build trust.CONCLUSION: Actions to reduce HIV should go beyond individual agency and structural forces to focus on how social practices embody these elements. Initiating PAR inclusive of visual methods can build shared understandings of disease burdens in social and health systems contexts. This can develop shared accountability and improve staff-patient relationships, which, over time, may address the issues identified, here related to stigma and blame.
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| 2. |
- Byass, Peter, et al.
(författare)
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Assessing the repeatability of verbal autopsy for determining cause of death : two case studies among women of reproductive age in Burkina Faso and Indonesia
- 2009
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Ingår i: Population Health Metrics. - : BioMed Central (BMC). - 1478-7954. ; 7:1, s. 6-
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Verbal autopsy (VA) is an established tool for assessing cause-specific mortality patterns in communities where deaths are not routinely medically certified, and is an important source of data on deaths among the poorer half of the world's population. However, the repeatability of the VA process has never been investigated, even though it is an important factor in its overall validity. This study analyses repeatability in terms of the overall VA process (from interview to cause-specific mortality fractions (CSMF)), as well as specifically for interview material and individual causes of death, using data from Burkina Faso and Indonesia.METHODS: Two series of repeated VA interviews relating to women of reproductive age in Burkina Faso (n = 91) and Indonesia (n = 116) were analysed for repeatability in terms of interview material, individual causes of death and CSMFs. All the VA data were interpreted using the InterVA-M model, which provides 100% intrinsic repeatability for interpretation, and thus eliminated the need to consider variations or repeatability in physician coding.RESULTS: The repeatability of the overall VA process from interview to CSMFs was good in both countries. Repeatability was moderate in the interview material, and lower in terms of individual causes of death. Burkinabé data were less repeatable than Indonesian, and repeatability also declined with longer recall periods between the death and interview, particularly after two years.CONCLUSION: While these analyses do not address the validity of the VA process in absolute terms, repeatability is a prerequisite for intrinsic validity. This study thus adds new understanding to the quest for reliable cause of death assessment in communities lacking routine medical certification of deaths, and confirms the status of VA as an important and reliable tool at the community level, but perhaps less so at the individual level.
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| 3. |
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| 4. |
- Byass, Peter, et al.
(författare)
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Strengthening standardised interpretation of verbal autopsy data : the new InterVA-4 tool
- 2012
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Ingår i: Global Health Action. - Järfälla, Sweden : CoAction Publishing. - 1654-9716 .- 1654-9880. ; 5
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Tidskriftsartikel (refereegranskat)abstract
- Background: Verbal autopsy (VA) is the only available approach for determining the cause of many deaths, where routine certification is not in place. Therefore, it is important to use standards and methods for VA that maximise efficiency, consistency and comparability. The World Health Organization (WHO) has led the development of the 2012 WHO VA instrument as a new standard, intended both as a research tool and for routine registration of deaths. Objective: A new public-domain probabilistic model for interpreting VA data, InterVA-4, is described, which builds on previous versions and is aligned with the 2012 WHO VA instrument. Design: The new model has been designed to use the VA input indicators defined in the 2012 WHO VA instrument and to deliver causes of death compatible with the International Classification of Diseases version 10 (ICD-10) categorised into 62 groups as defined in the 2012 WHO VA instrument. In addition, known shortcomings of previous InterVA models have been addressed in this revision, as well as integrating other work on maternal and perinatal deaths. Results: The InterVA-4 model is presented here to facilitate its widespread use and to enable further field evaluation to take place. Results from a demonstration dataset from Agincourt, South Africa, show continuity of interpretation between InterVA-3 and InterVA-4, as well as differences reflecting specific issues addressed in the design and development of InterVA-4. Conclusions: InterVA-4 is made freely available as a new standard model for interpreting VA data into causes of death. It can be used for determining cause of death both in research settings and for routine registration. Further validation opportunities will be explored. These developments in cause of death registration are likely to substantially increase the global coverage of cause-specific mortality data.
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| 5. |
- Cowan, Eilidh, et al.
(författare)
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Understanding non-communicable diseases : combining health surveillance with local knowledge to improve rural primary health care in South Africa
- 2021
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Ingår i: Global Health Action. - : Taylor & Francis. - 1654-9716 .- 1654-9880. ; 14:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: NCDs are non-infectious, long-term conditions that account for 40 million deaths per annum. 87% of premature NCD mortality occurs in low- and middle-income countries.Objective: The aims were:develop methods to provide integrated biosocial accounts of NCD mortality; and explore the practical utility of extended mortality data for the primary health care system.Methods: We drew on data from research programmes in the study area. Data were analysed in three steps: [a]analysis of levels, causes and circumstances of NCD mortality [n = 4,166] from routine census updates including Verbal Autopsy and of qualitative data on lived experiences of NCDs in rural villages from participatory research; [b] identifying areas of convergence and divergence between the analyses; and [c]exploration of the practical relevance of the data drawing on engagements with health systems stakeholders.Results: NCDs constituted a significant proportion of mortality in this setting [36%]. VA data revealed multiple barriers to access in end-of-life care. Many deaths were attributed to problems with resources and health systems [21%;19% respectively]. The qualitative research provided rich complementary detail on the processes through which risk originates, accumulates and is expressed in access to end-of-life care, related to chronic poverty and perceptions of poor quality care in clinics. The exploration of practical relevance revealed chronic under-funding for NCD services, and an acute need for robust, timely data on the NCD burden.Conclusions: VA data allowed a significant burden of NCD mortality to be quantified and revealed barriers to access at and around the time of death. Qualitative research contextualised these barriers, providing explanations of how and why they exist and persist. Health systems analysis revealed shortages of resources allocated to NCDs and a need for robust research to provide locally relevant evidence to organise and deliver care. Pragmatic interdisciplinary and mixed method analysis provides relevant renditions of complex problems to inform more effective responses.
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| 6. |
- D'Ambruoso, Lucia, et al.
(författare)
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A lost cause? Extending verbal autopsy to investigate biomedical and socio-cultural causes of maternal death in Burkina Faso and Indonesia
- 2010
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Ingår i: Social Science and Medicine. - : Elsevier BV. - 0277-9536 .- 1873-5347. ; 71:10, s. 1728-1738
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Tidskriftsartikel (refereegranskat)abstract
- Maternal mortality in developing countries is characterised by disadvantage and exclusion. Women who die whilst pregnant are typically poor and live in low-income and rural settings where access to quality care is constrained and where deaths, within and outside hospitals, often go unrecorded and unexamined. Verbal autopsy (VA) is an established method of determining cause(s) of death for people who die outside health facilities or without proper registration. This study extended VA to investigate socio-cultural factors relevant to outcomes. Interviews were conducted with relatives of 104 women who died during pregnancy, childbirth or postpartum in two rural districts in Indonesia and for 70 women in a rural district in Burkina Faso. Information was collected on medical signs and symptoms of the women prior to death and an extended section collected accounts of care pathways and opinions on preventability and cause of death. Illustrative quantitative and qualitative analyses were performed and the implications for health surveillance and planning were considered. The cause of death profiles were similar in both settings with infectious diseases, haemorrhage and malaria accounting for half the deaths. In both settings, delays in seeking, reaching and receiving care were reported by more than two-thirds of respondents. Relatives also provided information on their experiences of the emergencies revealing culturally-derived systems of explanation, causation and behaviour. Comparison of the qualitative and quantitative results suggested that the quantified delays may have been underestimated. The analysis suggests that broader empirical frameworks can inform more complete health planning by situating medical conditions within the socio-economic and cultural landscapes in which healthcare is situated and sought. Utilising local knowledge, extended VA has potential to inform the relative prioritisation of interventions that improve technical aspects of life-saving services with those that address the conditions that underlie health, for those whom services typically fail to reach.
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| 7. |
- D'Ambruoso, Lucia, et al.
(författare)
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Can the right to health inform public health planning in developing countries? : A case study for maternal healthcare from Indonesia
- 2008
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Ingår i: Global Health Action. - : CoAction Publishing. - 1654-9716 .- 1654-9880. ; 1, s. 10-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Maternal mortality remains unacceptably high in developing countries despite international advocacy, development targets, and simple, affordable and effective interventions. Human rights are powerful advocacy tools, which have become prominent in health and development. In recent years, regard for maternal mortality as a human rights issue as well as one that pertains to health, has emerged.Objective: We study a case of maternal death using a theoretical framework derived from the right to health to examine access to and quality of maternal healthcare. Our objective was to explore the potential of rights-based frameworks to inform public health planning from a human rights perspective.Design: Information was elicited as part of a verbal autopsy survey investigating maternal deaths in rural settings in Indonesia. The deceased's relatives were interviewed to collect information on medical signs, symptoms and the social, cultural and health systems circumstances surrounding the death.Results: In this case, a prolonged, severe fever and a complicated series of referrals culminated in the death of a 19-year-old primagravida at 7 months gestation. The cause of death was acute infection. The woman encountered a range of barriers to access; behavioural, socio-cultural, geographic and economic. Several serious health system failures were also apparent.. The theoretical framework derived from the right to health identified that none of the essential elements of the right were upheld.Conclusion: The rights-based approach could identify how and where to improve services. However, there are fundamental and inherent conflicts between the public health tradition (collective and preventative) and the right to health (individualistic and curative). As a result, and in practice, the right to health is likely to be ineffective for public health planning from a human rights perspective. Collective rights such as the right to development may provide a more suitable means to achieve equity and social justice in health planning.
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| 8. |
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| 9. |
- D'Ambruoso, Lucia, et al.
(författare)
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'Maybe it was her fate and maybe she ran out of blood' : final caregivers' perspectives on access to care in obstetric emergencies in rural Indonesia.
- 2010
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Ingår i: Journal of Biosocial Science. - Cambridge : Cambridge University Press. - 0021-9320 .- 1469-7599. ; 42:2, s. 213-241
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Tidskriftsartikel (refereegranskat)abstract
- Maternal mortality persists in low-income settings despite preventability with skilled birth attendance and emergency obstetric care. Poor access limits the effectiveness of life-saving interventions and is typical of maternal health care in low-income settings. This paper examines access to care in obstetric emergencies from the perspectives of service users, using established and contemporary theoretical frameworks of access and a routine health surveillance method. The implications for health planning are also considered. The final caregivers of 104 women who died during pregnancy or childbirth were interviewed in two rural districts in Indonesia using an adapted verbal autopsy. Qualitative analysis revealed social and economic barriers to access and barriers that arose from the health system itself. Health insurance for the poor was highly problematic. For providers, incomplete reimbursements, and low public pay, acted as disincentives to treat the poor. For users, the schemes were poorly socialized and understood, complicated to use and led to lower quality care. Services, staff, transport, equipment and supplies were also generally unavailable or unaffordable. The multiple barriers to access conferred a cumulative disadvantage that culminated in exclusion. This was reflected in expressions of powerlessness and fatalism regarding the deaths. The analysis suggests that conceiving of access as a structurally determined, complex and dynamic process, and as a reciprocally maintained phenomenon of disadvantaged groups, may provide useful explanatory concepts for health planning. Health planning from this perspective may help to avoid perpetuating exclusion on social and economic grounds, by health systems and services, and help foster a sense of control at the micro-level, among peoples' feelings and behaviours regarding their health. Verbal autopsy surveys provide an opportunity to routinely collect information on the exclusory mechanisms of health systems, important information for equitable health planning.
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| 10. |
- D'Ambruoso, Lucia, et al.
(författare)
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Moving from medical to health systems classifications of deaths : extending verbal autopsy to collect information on the circumstances of mortality
- 2016
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Ingår i: Global Health Research and Policy. - : BioMed Central. - 2397-0642. ; 1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Verbal autopsy (VA) is a health surveillance technique used in low and middle-income countries to establish medical causes of death (CODs) for people who die outside hospitals and/or without registration. By virtue of the deaths it investigates, VA is also an opportunity to examine social exclusion from access to health systems. The aims were to develop a system to collect and interpret information on social and health systems determinants of deaths investigated in VA.Methods: A short set of questions on care pathways, circumstances and events at and around the time of death were developed and integrated into the WHO 2012 short form VA (SF-VA). Data were subsequently analysed from two census rounds in the Agincourt Health and Socio-Demographic Surveillance Site (HDSS), South Africa in 2012 and 2013 where the SF-VA had been applied. InterVA and descriptive analysis were used to calculate cause-specific mortality fractions (CSMFs), and to examine responses to the new indicators and whether and how they varied by medical CODs and age/sex sub-groups.Results: One thousand two hundred forty-nine deaths were recorded in the Agincourt HDSS censuses in 2012–13 of which 1,196 (96 %) had complete VA data. Infectious and non-communicable conditions accounted for the majority of deaths (47 % and 39 % respectively) with smaller proportions attributed to external, neonatal and maternal causes (5 %, 2 % and 1 % respectively). 5 % of deaths were of indeterminable cause. The new indicators revealed multiple problems with access to care at the time of death: 39 % of deaths did not call for help, 36 % found care unaffordable overall, and 33 % did not go to a facility. These problems were reported consistently across age and sex sub-groups. Acute conditions and younger age groups had fewer problems with overall costs but more with not calling for help or going to a facility. An illustrative health systems interpretation suggests extending and promoting existing provisions for transport and financial access in this setting.Conclusions: Supplementing VA with questions on the circumstances of mortality provides complementary information to CSMFs relevant for health planning. Further contextualisation of the method and results are underway with health systems stakeholders to develop the interpretation sequence as part of a health policy and systems research approach.
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