Papers by Josien de Klerk
viennese ethnomedicine newsletter, 2010
... Shaibu, S., Wallhagen, M.(2002) Family caregiving of the elderly in Botswana: Boundaries of c... more ... Shaibu, S., Wallhagen, M.(2002) Family caregiving of the elderly in Botswana: Boundaries of culturally acceptable options and resources. ... Brazilian dancer and choreographer Ismael Ivo, presently also the artistic counselor, and the dancer and choreographer Joe Alegado from ...
Social Science & Medicine
Disclaimer/Klachtenregeling Meent u dat de digitale beschikbaarstelling van bepaald materiaal inb... more Disclaimer/Klachtenregeling Meent u dat de digitale beschikbaarstelling van bepaald materiaal inbreuk maakt op enig recht dat u toekomt of uw (privacy)belangen schaadt, dan kunt u dit onderbouwd aan de Universiteitsbibliotheek laten weten. Bij een gegronde klacht zal de ...
The HIV/AIDS epidemic in northwest Tanzania has profoundly shaped the experience of growing old. ... more The HIV/AIDS epidemic in northwest Tanzania has profoundly shaped the experience of growing old. Older men and women take on new care tasks, such as caring for orphaned grandchildren and nursing dying patients. Yet, at the same time, while the elderly grow older, their own old-age care becomes increasingly uncertain. Situating older people's stories in debates around kinship and relating, this detailed ethnographic account captures the diverse experiences of growing old in the era of AIDS and shows how this process implies a tension between the increased necessity to forge relations of care and the confrontation with the aging body. Josien de Klerk obtained her masters degree in medical anthropology at the Radboud University, Nijmegen. She is currently working as a post-doctoral researcher at the University of Amsterdam.
Title Heaviness, intensity, and intimacy: Dutch elder care in the context of
Ageing in Sub-Saharan Africa
PLOS ONE, 2022
Background Differentiated service delivery (DSD) offers benefits to people living with HIV (impro... more Background Differentiated service delivery (DSD) offers benefits to people living with HIV (improved access, peer support), and the health system (clinic decongestion, efficient service delivery). ART clubs, 15–30 clients who usually meet within the community, are one of the most common DSD options. However, evidence about the quality of care (QoC) delivered in ART clubs is still limited. Materials and methods We conducted a concurrent triangulation mixed-methods study as part of the Test & Treat project in northwest Tanzania. We surveyed QoC among stable clients and health care workers (HCW) comparing between clinics and clubs. Using a Donabedian framework we structured the analysis into three levels of assessment: structure (staff, equipment, supplies, venue), processes (time-spent, screenings, information, HCW-attitude), and outcomes (viral load, CD4 count, retention, self-worth). Results We surveyed 629 clients (40% in club) and conducted eight focus group discussions, while 24 ...
Culture, Health & Sexuality, 2012
In northwest Tanzania, where AIDS has been present for 25 years, AIDS-related illness is a trigge... more In northwest Tanzania, where AIDS has been present for 25 years, AIDS-related illness is a trigger through which community members discuss personal experiences of loss and assess social relationships. The terminal phase of AIDS demands intimate social relations between patients and caretakers. In this final phase of illness, caretakers are scrutinised for their behaviour towards the patient. In the moral world in which caregiving takes place, the act of concealing is considered an intrinsic part of proper care. Current debates on morality, stigma and secrecy inform my argument that acts of concealment around dying are not so much related to the exclusion and ostracism of patients but to inclusion and compassionate care.
Culture, Health & Sexuality, 2013
While antiretroviral medicines have reduced AIDS-related deaths in sub-Saharan Africa, many peopl... more While antiretroviral medicines have reduced AIDS-related deaths in sub-Saharan Africa, many people still lose multiple family members and struggle with the social and economic consequences of those deaths. This paper examines how older Tanzanians frame feelings of loss caused by the untimely death of young adults and how they advise other bereaved about how to manage loss. A local concept oyegumisilize--meaning 'to move on and push grief and worries aside'--is employed in offering bereaved persons advice about how to deal with feelings of loss. Older people try hard to manage memories of loss whilst simultaneously struggling to fulfil the social obligations around mourning that contribute to their ongoing bereavement. Oyegumisilize can be seen as a counselling practice that helps those who have lost loved ones to move on with life and feel normal. It is argued that this form of counselling is a form of therapeutic speech, where the emphasis is not on 'talking through' emotions, but on speech that is aimed at 'toughening up' the bereaved person. The findings presented here are based upon ethnographic research undertaken in Muleba District in Kagera Region, Tanzania, between 2003 and 2004, and follow-up research conducted in 2005, 2008 and 2012.
Medicine Anthropology Theory | An open-access journal in the anthropology of health, illness, and medicine
In the Netherlands the recent shift to a 'participation society' has led to a reconfiguration of ... more In the Netherlands the recent shift to a 'participation society' has led to a reconfiguration of health care arrangements for long-term care. The new long-term care act, scheduled to commence January 2015, forms the political realization of the participation society: people are expected to decrease their dependency on state provisions and instead become self-sufficient or dependent on family and community solidarity. In this Think Piece we argue that the implicit references of policy makers to pre-welfare state community solidarity and self-sufficiency do not adequately consider the historical and social embeddedness of care. Referring to Rose's concept of 'politics of conduct' we argue that in framing care as a moral obligation, the current politics of conduct may obscure the physical and psychological heaviness of intimate care between family members, the diversity of care relations, and their sociohistorical embeddedness. The participation project In recent years health care arrangements in the Netherlands have changed rapidly. The combination of rising care costs, an aging population, and the 2008 global economic crisis has led to a series of austerity measures aimed at cost containment and reduction in recent years. These austerity measures go hand in hand with a more ideological project: the gradual shift from a caring state to a 'participation society' 1 based on the claim that the welfare state contributed to a loss of social solidarity and individual responsibility.
PLOS ONE
Objective This study examined people’s motivations for (repeatedly) utilizing HIV testing service... more Objective This study examined people’s motivations for (repeatedly) utilizing HIV testing services during community-based testing events in urban and rural Shinyanga, Tanzania and potential implications for Universal Health Coverage (UHC). Methods As part of a broader multidisciplinary study on the implementation of a HIV Test and Treat model in Shinyanga Region, Tanzania, this ethnographic study focused on community-based testing campaigns organised by the implementing partner. Between April 2018 and December 2019, we conducted structured observations (24), short questionnaires (42) and in-depth interviews with HIV-positive (23) and HIV-negative clients (8). Observations focused on motivations for (re-)testing, and the counselling and testing process. Thematic analysis based on inductive and deductive coding was completed using NVivo software. Results Regular HIV testing was encouraged by counsellors. Most participants in testing campaigns were HIV-negative; 51.1% had tested more t...
With antiretroviral therapy, more people living with HIV (PLHIV) in resource-limited settings are... more With antiretroviral therapy, more people living with HIV (PLHIV) in resource-limited settings are virally suppressed and living longer. WHO recommends differentiated service delivery (DSD) as an alternative, less resource-demanding way of expanding HIV services access. Monitoring client’s health-related quality of life (HRQoL) is necessary to understand patients’ perceptions of treatment and services but is understudied in sub-Saharan Africa. We assessed HRQoL among ART clients in Tanzania accessing two service models. Cross-sectional survey from May–August 2019 among stable ART clients randomly sampled from clinics and clubs in the Shinyanga region providing DSD and clinic-based care. HRQoL data were collected using a validated HIV-specific instrument—Functional Assessment of HIV infection (FAHI), in addition to socio-demographic, HIV care, and service accessibility data. Descriptive analysis of HRQoL, logistic regression and a stepwise multiple linear regression were performed to ...
Introduction WHO recommendation to “treat all diagnosed with HIV” challenges the capacity of heal... more Introduction WHO recommendation to “treat all diagnosed with HIV” challenges the capacity of health systems, especially in low- and middle- resource countries. The current Tanzanian National Guidelines for the Management of HIV and AIDS views differentiated service delivery (DSD) models as promising approaches to improve HIV services. Nonetheless, social, economic and health system factors greatly influence their efficacy and sustainability and call for context-specific evidence. Objectives This implementation research protocol outline plans to assesses the feasibility and effectiveness of a DSD intervention for stable ART clients in Tanzania. Methodology Quantitative and qualitative methods will be employed to assess implementation which started in July 2018 and will run until July 2021 at four HIV clinics (CTC) located in Shinyanga (2) and Simiyu (2) regions. Stable clients [age >5 years, receiving ART first-line regimen ≥ six months, viral load (VL) ≤50 copies/ml, and no curre...
Social Anthropology, 2020
Background: More people living with HIV (PLHIV) in resource-limited settings are virally suppress... more Background: More people living with HIV (PLHIV) in resource-limited settings are virally suppressed and living longer, mainly due to an increased access to effective antiretroviral therapy (ART). With the expansion of ART programmes, the World Health Organisation recommended differentiated service delivery (DSD) as an alternative less resource-demanding way of accessing HIV services. While maintaining quality of care and continued adherence among patients are health system’s priorities, monitoring patient’s quality of life is key to ensure sustainability and uptake of services. However, health-related quality of life (HRQoL) is understudied in sub-Saharan Africa (SSA). We aimed to assess HRQoL among stable ART clients accessing ART care in adherence clubs implemented in Tanzania. Methods: We conducted a cross-sectional survey from May to August 2019 among stable ART clients randomly sampled among those accessing clinics and clubs daily in two sites, a rural and peri-urban setting in...
Medical Anthropology, 2016
As part of the chronic disease paradigm now widely used for HIV in sub-Saharan Africa, antiretrov... more As part of the chronic disease paradigm now widely used for HIV in sub-Saharan Africa, antiretroviral treatment programs emphasize self-care. In the informal settlements of Mombasa, Kenya, the management of stressassociated with economic precariousness-plays a significant role in selfcare practices and ideologies. Based on ethnographic fieldwork, we examine how local narratives of stress and self-care intertwine with social responsibilities of older HIV-positive people. For older Mombassans, living with 'chronic' HIV means living with an unpredictable body, which affects how they are able to care for their kin. The physical reality of living with HIV thus shapes relational networks, making self-care a social practice. While, for some self-care entails managing the body so that its needs are hidden from loved ones, a kind of 'protective secrecy,' others enlist the support of their children and grandchildren in managing their body, and in that process subtly redefine generational expectations and responsibilities.
Anthropology & Medicine
Drawing on long-term ethnographic fieldwork on older caregivers and their shifting roles since th... more Drawing on long-term ethnographic fieldwork on older caregivers and their shifting roles since the introduction of antiretroviral therapy in northwest Tanzania, this article explores grandmothers' roles in caring for grandchildren who are HIV positive and on treatment. While AIDS treatment programmes usually focus on cultivating expert patients who can perform self-care, this study focuses on older caregivers and how they become experts in caring for their grandchildren living with HIV. How is expert care enacted and what supports or limits its quality? Based on observations and in-depth interviews, this article argues that grandmothers become 'expert caregivers' by merging knowledge acquired in the clinic and support groups with intimate practices of grandparental care. However, the grandmother's gendered and generational position within kin networks affects her ability to provide expert care. The findings indicate that in analysing treatment outcomes among adolescents, it is important to understand the broader family dynamic that influences the actual possibility of expert caregivers to support children living with HIV. 'Weight' is derived from scales used in institutions such as schools and clinics to convert the 'homework' of self-care (Meinert 2013) into numbers that carry a specific significance: is this person or caregiver adhering to ART? This is the 'measured body' , as Whyte (2014) calls it: the use of an objective metric that subtly conceptualises the body in a specific
As part of the chronic disease paradigm now widely used for HIV in sub-Saharan Africa, antiretrov... more As part of the chronic disease paradigm now widely used for HIV in sub-Saharan Africa, antiretroviral treatment programs emphasize self-care. In the informal settlements of Mombasa, Kenya, the management of stress—associated with economic precariousness— plays a significant role in self-care practices and ideologies. Based on ethnographic fieldwork,
we examine how local narratives of stress and self-care intertwine with social responsibilities of older HIV-positive people. For older Mombassans, living with ‘chronic’ HIV means living with an unpredictable body, which affects how they are able to care for their kin. The physical reality of living with HIV thus shapes relational networks, making self-care a social practice. While, for some self-care entails managing the body so that its needs are hidden from loved ones, a kind of ‘protective secrecy’, others enlist the support of their children and grandchildren in managing their body, and in that process subtly redefine generational expectations and responsibilities.
In the Netherlands the recent shift to a 'participation society' has led to a reconfiguration of ... more In the Netherlands the recent shift to a 'participation society' has led to a reconfiguration of health care arrangements for long-term care. The new long-term care act, scheduled to commence January 2015, forms the political realization of the participation society: people are expected to decrease their dependency on state provisions and instead become self-sufficient or dependent on family and community solidarity. In this Think Piece we argue that the implicit references of policy makers to pre-welfare state community solidarity and self-sufficiency do not adequately consider the historical and social embeddedness of care. Referring to Rose's concept of 'politics of conduct' we argue that in framing care as a moral obligation, the current politics of conduct may obscure the physical and psychological heaviness of intimate care between family members, the diversity of care relations, and their sociohistorical embeddedness.
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Papers by Josien de Klerk
we examine how local narratives of stress and self-care intertwine with social responsibilities of older HIV-positive people. For older Mombassans, living with ‘chronic’ HIV means living with an unpredictable body, which affects how they are able to care for their kin. The physical reality of living with HIV thus shapes relational networks, making self-care a social practice. While, for some self-care entails managing the body so that its needs are hidden from loved ones, a kind of ‘protective secrecy’, others enlist the support of their children and grandchildren in managing their body, and in that process subtly redefine generational expectations and responsibilities.
we examine how local narratives of stress and self-care intertwine with social responsibilities of older HIV-positive people. For older Mombassans, living with ‘chronic’ HIV means living with an unpredictable body, which affects how they are able to care for their kin. The physical reality of living with HIV thus shapes relational networks, making self-care a social practice. While, for some self-care entails managing the body so that its needs are hidden from loved ones, a kind of ‘protective secrecy’, others enlist the support of their children and grandchildren in managing their body, and in that process subtly redefine generational expectations and responsibilities.