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Neglected tropical disease as a 'biographical disruption': Listening to the narratives of affected persons to develop integrated people centred care in Liberia.

ABSTRACT: BACKGROUND:Integrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals' unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond. METHODS:We purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory. FINDINGS:For all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of 'biographical disruption' triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the 'sick role' was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and significant psycho-social difficulty occurred. An intersectional lens emphasises how biographical disruption is mediated by intersecting social processes. Gender, generation, and disability were all dominant axes of social inequity shaping experience. SIGNIFICANCE:This is one of the first studies to use narrative approaches to interrogate experience of chronic disabling conditions within LMICs and is the only study to apply such an analysis to NTDs. The emotive power of narrative should be utilised to influence the value base of policy makers to ensure that DMDI strategies respond holistically to the needs of the most marginalised, thus contributing to more equitable people-centred care.

SUBMITTER: Dean L

PROVIDER: S-EPMC6750611 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Neglected tropical disease as a 'biographical disruption': Listening to the narratives of affected persons to develop integrated people centred care in Liberia.

Dean Laura L Tolhurst Rachel R Nallo Gartee G Kollie Karsor K Bettee Anthony A Theobald Sally S

PLoS neglected tropical diseases 20190906 9

<h4>Background</h4>Integrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals' unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could ...[more]

PMID: 31490931

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Project description:Neglected Tropical Diseases (NTDs) are a group of chronic infectious diseases of poverty affecting over one billion people globally. Intersections of NTDs, disability, and mental ill-health are increasingly evidenced but are rarely studied from a mixed-methods perspective. Here, we advance syndemic understandings by further assessing and contextualising the syndemic relationship between NTDs (particularly their associated disability) and mental distress in Liberia. Participatory qualitative methods, including body mapping (56 participants), social mapping (28 participants), and in-depth interviews (12) provided space for persons affected by NTDs to narrate their experiences. Simultaneously, 201 surveys explored experiences of common mental health conditions among persons affected by skin NTDs. An intersectionality approach was applied within the analysis for both qualitative and quantitative methods informed by Meyer's minority stress model, adapted for NTDs. Qualitative data was analysed thematically and gender-disaggregated, univariable and multivariable analyses were applied to survey data for the outcome measures depression (PHQ-9) and anxiety (GAD-7). Disability was associated with higher levels of depression and anxiety (p < 0.001). An interaction between disability and being a women increased incidence risk ratio of depression (p < 0.001). In alignment with qualitative findings, persons affected experienced additional generalised (financial concerns), external (experience of stigma) and internal (experience of pain and physical symptoms) minority stressors, to varying degrees, which contributed towards their mental distress, and mental health conditions. These findings were used to co-develop a syndemic-informed person-centred health system response to address the suffering associated with NTDs and mental distress, including a focus on strengthening relationships between formal and informal community health actors and the broader health system.

Project description:BACKGROUND:Skin neglected tropical diseases (NTDs) such as Buruli ulcer (BU) and leprosy produce significant stigma and disability. Shared clinical presentations and needs for care present opportunities for integrated case management in co-endemic areas. As global policies are translated into local integrated services, there remains a need to monitor what new configurations of care emerge and how individuals experience them. METHODS:To explore patient experiences of integrated case management for skin NTDs, in 2018, we conducted a field-based qualitative case series in a leprosy rehabilitation centre in Ganta, Liberia where BU services were recently introduced. Twenty patients with BU (n = 10) and leprosy (n = 10) participated in in-depth interviews that incorporated photography methods. We contextualised our findings with field observations and unstructured interviews with health workers. FINDINGS:The integration of care for BU and leprosy prompted new conceptualisations of these diseases and experiences of NTD stigma. Some patients felt anxiety about using services because they feared being infected with the other disease. Other patients viewed the two diseases as 'intertwined': related manifestations of the same condition. Configurations of inter-disease stigma due to fear of transmission were buffered by joint health education sessions which also appeared to facilitate social support between patients in the facility. For both diseases, medication and wound care were viewed as the cornerstones of care and appreciated as interventions that led to rehabilitation of the whole patient group through shared experiences of healing, avoidance of physical deformities and stigma reduction. Patient accounts of intense pain during wound care for BU and inability of staff to manage severe complications, however, exposed some shortcomings of medical care for the newly integrated service, as did patient fears of long-lasting disability due to lack of physiotherapy services. SIGNIFICANCE:Under integrated care policies, the possibility of new discourses about skin NTD identities emerging along with new configurations of stigma may have unanticipated consequences for patients' experiences of case management. The social experience of integrated medication and wound dressing has the potential to link patients within a single, supportive patient community. Control programmes with resource constraints should anticipate potential challenges of integrating care, including the need to ameliorate lasting disability and provide adequate clinical management of severe BU cases.

Project description:The intersections between NTDs, disability, and mental ill-health are increasingly recognised globally. Chronic morbidity resultant from many NTDs, particularly those affecting the skin—including lymphatic filariasis (LF), leprosy, Buruli ulcer (BU) and onchocerciasis—is well known and largely documented from a medicalised perspective. However less is known about the complex biosocial interaction shaping interconnected morbidities. We apply syndemic theory to explain the biosocial relationship between NTDs and mental distress in the context of structural violence in Liberia. By advancing syndemic theory to include intersectional thought, it is apparent that structural violence becomes embodied in different ways through interacting multi-level (macro, meso and micro) processes. Through the use of in-depth qualitative methods, we explore the syndemic interaction of NTDs and mental distress from the vantage point of the most vulnerable and suggest that: 1) the post-conflict environment in Liberia predisposes people to the chronic effects of NTDs as well as other ‘generalised stressors’ as a consequence of ongoing structural violence; 2) people affected by NTDs are additionally exposed to stigma and discrimination that cause additional stressors and synergistically produce negative health outcomes in relation to NTDs and mental distress; and 3) the impact and experience of consequential syndemic suffering is shaped by intersecting axes of inequity such as gender and generation which are themselves created by unequal power distribution across multiple systems levels. Bringing together health systems discourse, which is focused on service integration and centred around disease control, with syndemic discourse that considers the biosocial context of disease interaction offers new approaches. We suggest that taking a syndemic-informed approach to care in the development of people-centred health systems is key to alleviating the burden of syndemic suffering associated with NTDs and mental distress currently experienced by vulnerable populations in resource-limited settings.

Project description:BackgroundSubcutaneous (deep) mycoses are a chronic infectious disease of the skin and underlying structures endemic in tropical countries. The disease has serious medical and socioeconomic consequences for patients, communities and health services in endemic areas. The inclusion of mycetoma and other subcutaneous mycoses in the list of Neglected Tropical Diseases by WHO highlights the need to assess the burden of these diseases and establish control programs where necessary. In Ethiopia no strategies can be devised because of a lack of epidemiologic information. To address this evidence gap, we performed a national rapid assessment of the geographic distribution of subcutaneous mycoses.MethodologyWe conducted a rapid retrospective assessment using hospital records to identify all suspected and confirmed cases of subcutaneous mycoses in 13 referral hospitals across the country between 2015 and 2022. In each hospital the logbooks were reviewed for diagnoses of subcutaneous mycosess, as diagnosed per routine practice. Descriptive analysis was done.ResultFrom 13 hospitals we extracted 143 cases of subcutaneous mycoses, registered from July 2018 to September 2022. 118 (82.5%) patients were diagnosed as mycetoma, 21 (14.7%) as chromoblastomycosis and the remaining 4 (2.8%) as sporotrichosis. The mean age of patients was 35.8 years (SD = 14.5). 101 (70.6%) patients were male and 96 (67.1%) patients were farmers. 64 (44.8%) cases were from the Tigray regional state. 56 (65.9%) patients had information on diagnostic microscopic evaluation: for mycetoma histopathologic evaluation and fine needle aspiration cytology had a higher positivity rate while for chromoblastomycosis potassium hydroxide (KOH) staining had a better yield. The main clinical presentations were nodules, sinuses and infiltrative plaques on the skin. Radiologic findings of bone involvement was present in some.ConclusionsMycetoma and other subcutaneous mycoses are endemic in Ethiopia, with cases reported from almost all regions with the highest cases numbers reported from the northern part of the country. A routine program and systems should be developed to identify and document the burden of subcutaneous fungal infections in the country. Diagnosis and treatment guidelines should be developed.

Dataset Information

Neglected tropical disease as a 'biographical disruption': Listening to the narratives of affected persons to develop integrated people centred care in Liberia.

Publications

Neglected tropical disease as a 'biographical disruption': Listening to the narratives of affected persons to develop integrated people centred care in Liberia.

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