Parenting children requiring complex care at home: re‐visiting normalisation and stigma

Abstract

macdonald hl & gibson ch (2010) Journal of Nursing and Healthcare of Chronic Illness 2 , 241–250 Parenting children requiring complex care at home: re‐visiting normalisation and stigma Aims/objectives. To increase our understanding about the impact of stigma and normalisation on parents of children who require complex care. Background. This paper focuses on normalisation and stigma, two phenomenon that were extracted from the findings of an ethnographic study that explored parents’, nurses’, and social workers’ beliefs and experiences with respite services. Design. Qualitative study. Methods. In depth interviews and participant observation with 47 participants that included 19 mothers, 4 fathers, and 7 grandparents of children who required complex care, and 13 nurses and 4 social workers. Results. Issues of normalisation and stigma emerged from the data. Unlike parents of children with various chronic illnesses, these parents were not able to use normalisation as described in the literature. Conclusions. Parents of children requiring complex care described normalisation as keeping up appearances and as escaping . Normalisation, to them, was about counter‐acting stigma. Relevance to clinical practice. The findings of this study have important implications for practice. Rather than encouraging parents to use normalisation as defined in the literature, clinicians should seek ways in which the parents see themselves as normal. In this study one of the ways for parents to achieve feelings of normalcy was to escape from their caregiving role for a period of respite.