A parental perspective on  child chronic kidney disease : The lived experience of  caregiving in Portugal

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.