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- Bruno de Sousa, Andréa, 1967-
(author)
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A parental perspective on child chronic kidney disease : The lived experience of caregiving in Portugal
- 2021
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Doctoral thesis (other academic/artistic)abstract
- Paediatric chronic kidney disease (CKD) requires complex care and radically transforms the everyday life of the child’s family. This thesis examines parents’ lived experience of dealing with a child’s CKD; how social and economic circumstances impact on families’ opportunities to manage the care; and how parents view and practise their parenthood. The thesis takes inspiration from the phenomenology of practice, material culture studies and parenting culture studies. The research is based on ethnographic fieldwork in a paediatric hospital in Portugal and in the participating families’ home environments. Thematic analysis was used to analyse the empirical material. The first study addresses the ethnographic methods used in the study and the challenges involved in examining parents’ lived experiences of managing caregiving. It demonstrates that the challenges involved in carrying out fieldwork among families in crisis can function as openings for discovering the multifaceted and complicated realities the families encounter. The second study shows that parents use all the available financial and human resources to manage the technically demanding care and create normality. It also shows that, while parents experience becoming confined and close relationships as strained, the mundane practices and social relations of care bring hope and meaning to the family. The third study demonstrates that good parenthood for the participants means focusing on the child’s survival and well-being, and requires constant vigilance and readjustments, what I term “readiness parenting”. This research contributes to creating knowledge about the complexity of caring for a chronically ill child, the relational and material aspects of caregiving and how norms about responsible parenthood are negotiated. It also demonstrates the need for qualitative research methods to understand parents’ lived experiences and create knowledge about their meaning- making, needs and competencies.
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| 2. |
- Bruno de Sousa, Andréa, 1967-
(author)
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Adapting to parents in crisis : tracing experiences of having a child with chronic kidney disease
- 2018. - 1
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In: Messy ethnographies in action. - : Vernon Press. - 9781622733293 ; , s. 131-139
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Book chapter (peer-reviewed)abstract
- This chapter addresses the challenges involved in understanding parents’ concrete experiences of managing a child with a chronic kidney disease (CKD). This disease causes suffering for the child, disrupts daily routines and transforms the everyday life of the family. On the basis of ethno-graphic methodology, participant observations and interviews with primary caregivers were conducted at a major paediatric hospital in Portugal. However, the stressful environment at the hospital led the researcher to seek access to the parents’ home environment. The multisited approach of this investigation revealed a typical trajectory involving back and forth visits to the hospital and in addition, parents had to manage a variety of practices depending on the setting. Attending to the parents’ emotions rather than avoiding them was vital in understanding how their lives became stressed and in how they grew as individuals. The challenges involved in carrying out fieldwork among families in crisis can work as openings for discovering the multifaceted realities the families encounter.
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| 3. |
- Bruno de Sousa, Andréa, 1967-, et al.
(author)
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Material and relational challenges of home-based renal care : a parental perspective on child chronic kidney disease
- 2022
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In: International Journal of Care and Caring. - Bristol, United Kingdom : Policy Press. - 2397-8821 .- 2397-883X. ; 6:4, s. 547-563
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Journal article (peer-reviewed)abstract
- Caring for a child with chronic kidney disease (CKD) requires parents to reorganise mundane routines and develop advanced technical skills. Parents’ strategies used to meet these challenges need greater understanding. This article takes inspiration from phenomenology of practice and material culture studies to analyse interviews with parents in Portugal. It shows that, although home-based care leads to worsened social inequities, parents use the available financial and human resources to manage the situation and create normality. While they experience becoming confined and close relationships are strained, the mundane practices and social relations of care bring hope and meaning to the family.
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| 4. |
- Bruno de Sousa, Andréa, 1967-, et al.
(author)
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Readiness parenting: practices of care by parents of children with chronic kidney disease in Portugal
- 2023
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In: Families, Relationships and Societies. - : Policy Press. - 2046-7435 .- 2046-7443. ; 12:4, s. 485-501
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Journal article (peer-reviewed)abstract
- Parents of a child with chronic kidney disease (CKD) must safely perform advanced care and treatment while at the same time allowing the child some freedom and maintaining everyday parenting and family tasks. Drawing on interviews with primary caregivers of children with CKD in Portugal, we examine the context of raising a child with CKD and how the parents practise their parenthood. The study takes inspiration from parenting studies and child studies and explores how good parenthood is constructed. Based on thematic analysis, three core themes emerged: protecting the child, involving the child in their treatment, and transferring responsibility. The transformation of life-limiting circumstances into a life that worked well for both parents and their child represents what we call ‘readiness parenting’. Assessing risks, supporting the child’s autonomy, and relating to social norms required constant vigilance and readjustments as well as negotiations about parental responsibility.
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