Publications
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Connecting relational wellbeing and participatory action research: reflections on ‘unlikely’ transformations among women caring for disabled children in South Africa.
Van der Mark, E.J., Zuiderent-Jerak, T., Dedding, C.W.M., Conradie, I.M., & Broerse, J.E.W. Journal of Global Ethics 2023 https://doi.org/10.1080/17449626.2023.2186468 Participatory action research (PAR) is a form of community-driven qualitative research which aims to collaboratively take action to improve participants’ lives. This is generally achieved through cognitive, reflexive learning cycles, whereby people ultimately enhance their wellbeing. This approach builds on two assumptions: (1) participants are able to reflect on and prioritize difficulties they face; (2) collective impetus and action are progressively achieved, ultimately leading to increased wellbeing. This article complicates these assumptions by analyzing a two-year PAR project with mothers of disabled children from a South African urban settlement. Participant observation notes, interviews, and a group discussion served as primary data. We found that mothers’ severe psychological stress and the strong intersectionality of their daily challenges hampered participation. Consequently, mothers considered the project ‘inactionable’. Yet, many women quickly started expressing important individual and collective wellbeing transformations. To understand these ‘unlikely’ transformations, a feminist relational account, in particular, that of relational wellbeing, proves essential. We reflection the consequences of these findings for the dominant PAR methodology and operationalization, and propose to sensitize future PAR with marginalized women by employing relational wellbeing as an overarching ontological awareness. |
Co-authored:
Jessica A. Coetzer, Anoushka Bold, Elise J. van der Mark (2022). Exploring mental health interventions for youth in Southern Africa: A rapid review. Acta Psychologica 229. https://doi.org/10.1016/j.actpsy.2022.103699.
Cornelissen LE, van der Mark EJ, Pennings P, Maat B, Foekens T, Willemsen-de Mey G, Voogdt-Pruis HR (2021). What Matters to Patients with Rheumatoid Arthritis When Facing Medical or Non-Medical Treatment Decisions? Patient Prefer Adherence 24 (Aug 15):1827-1841. https://doi.org/10.2147/PPA.S322257.
Jessica A. Coetzer, Anoushka Bold, Elise J. van der Mark (2022). Exploring mental health interventions for youth in Southern Africa: A rapid review. Acta Psychologica 229. https://doi.org/10.1016/j.actpsy.2022.103699.
Cornelissen LE, van der Mark EJ, Pennings P, Maat B, Foekens T, Willemsen-de Mey G, Voogdt-Pruis HR (2021). What Matters to Patients with Rheumatoid Arthritis When Facing Medical or Non-Medical Treatment Decisions? Patient Prefer Adherence 24 (Aug 15):1827-1841. https://doi.org/10.2147/PPA.S322257.
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Breaking Solitary Gendered Disability Care in Southern Africa:
Towards disability and care inclusive development Policy Brief 2020 Southern African women commonly bear primary caregiving responsibility for a disabled child whether being the biological (grand)mother, sister, or aunt to the child. Within poor socio-economic contexts, these ‘mothers’ face a tremendously difficult existence that is compounded by intersecting challenges of gender, disability, stigma and poverty. This forces them to opt for a solitary form of caregiving – hence, making them invisible to policymakers and institutions. Yet, care and disability are increasingly being recognized as crucial elements for care inclusive development. This brief puts the spotlight on the outcomes of years-long research with Southern African mothers caring for a disabled child. It argues that to move towards a disability and care inclusive development in Southern Africa a relational approach is needed which acknowledges all factors shaping mothers’ and children’s wellbeing. A relational understanding can foster a shared responsibility for fighting discrimination and abuse, break the solitary character of disability and care, and ultimately generate better life outcomes for disabled children and their caregivers. Download the full policy brief and bibliography via the respective buttons. |
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Een Lerende Evaluatie van 6 Pilots Jeugdbescherming:
Zoektochten in beeld ("A Learning Evaluation in Child Protection: Bringing 6 pilots into vision") Athena Institute, VU Amsterdam, the Netherlands This research consisted of a learning evaluation of 6 pilots in the Dutch system of Child Protection. These 6 pilots focussed on exploring, designing and testing innovations in the wider child protection system with all relevant stakeholders. We performed a so-called learning evaluation in which we simultaneously gathered data on successful and non-successful innovation elements and helped in transforming practice. Download the full rapport via this link |
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Against All Odds
Exploring wellbeing transformation with mothers of disabled children from poor urban settlements in Southern Africa Dissertation (Cum Laude) 2019 For all chapters, please visit: Research @ VU or click below for the English summary 
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Exploring Adaptation and Agency of Mothers Caring for Disabled Children in an Urban Settlement in South Africa:
A qualitative study Elise J. van der Mark, Ina Conradie, Christine W. M. Dedding & Jacqueline E. W. Broerse Women's Studies International Forum 2019 https://doi.org/10.1016/j.wsif.2019.102271 Mothers of disabled children who are living in poverty face multiple interlinked disadvantages in relation to gender, care, disability, and poverty. Yet, their experiences have been largely neglected in academic literature. This study explores how mothers from a poor urban settlement in South Africa manoeuvre, adapt, act and react in such a difficult context, and how they maintain or improve their own and their family's wellbeing. Our qualitative research with 30 mothers shows women's adaptation and agency in the trade-offs they make. Fuelled by social discrimination and abuse, mothers prefer to focus solely on the child, its care and the household in order to keep themselves and their child safe. Despite providing certain benefits that mothers value, these preferences perpetuate or indeed worsen their position in society, as they reinforce traditional gender structures and render them invisible to policymakers. This poses serious challenges for women's empowerment and gender-sensitive poverty-reduction policies. |
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‘We create our own small world’: Daily Realities of Mothers of Disabled Children in a South African Urban Settlement
Elise J. van der Mark, Ina Conradie, Christine W. M. Dedding & Jacqueline E. W. Broerse Disability & Society 2018 https://doi.org/10.1080/09687599.2018.1511415 Parents of disabled children face many challenges. Understanding their experiences and acknowledging contextual influences is vital in developing intervention strategies that fit their daily realities. However, studies of parents from a resource-poor context are particularly scarce. This ethnographic study with 30 mothers from a South African township (15 semi-structured interviews and 24 participatory group sessions) unearths how mothers care on their own, in an isolated manner. The complexity of low living standards, being poorly supported by care structures and networks, believing in being the best carer, distrusting others due to a violent context, and resigning towards life shape and are shaped by this solitary care responsibility. For disability inclusive development to be successful, programmes should support mothers by sharing the care responsibility taking into account the isolated nature of mothers’ lives and the impact of poverty. This can provide room for these mothers to increase the well-being of themselves and their children. |
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How Poverty Shapes Caring for a Disabled Child:
A narrative literature review Elise J. van der Mark, Ina Conradie, Christine W. M. Dedding & Jacqueline E. W. Broerse Journal of International Development 2017 https://doi.org/10.1002/jid.3308 Despite ample research on the relationship between disability and poverty, the experiences of parents of disabled children are herein generally overlooked. We argue that an understanding of how poverty shapes caring for a disabled child is crucial for disability inclusive development. Therefore, this paper narratively reviews literature on carers of disabled children from various contexts published between 1995 and 2015. It uncovers a significant knowledge gap on the impact of poverty despite slowly emerging evidence on how political, cultural and socioeconomic exclusion stifles parents to enhance their families’ wellbeing and possibly reap the benefits of development policies. Implications for future research are addressed. |
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Fighting the Odds: Strategies of Female Caregivers of Disabled Children in Zimbabwe
Elise Jantine van der Mark and Hebe Verrest Disability & Society 2014 http://doi.org/10.1080/09687599.2014.934441 Caregivers of disabled children face numerous challenges in meeting their child’s needs. Research on Zimbabwean caregivers of disabled children is limited. Yet the difficult socio-economic, political and institutional context is expected to complicate the care giving task. This article examines the resources and caring strategies of female caregivers in Mutare, Zimbabwe, using a well-being framework. Through a mixed-methods approach, the data reveals that external support is extremely limited, particularly due to stigma and a weak state. Caregivers are mostly self-reliant and their strategies focus on enabling themselves to take care of their child. |
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