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  • Author or Editor: Andréa Bruno de Sousa x
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Caring for a child with chronic kidney disease 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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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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