Article Text

BEARING THE BURDEN OF FAMILY-CENTRED CARE: EVIDENCE FROM TWO EMPIRICAL STUDIES
  1. S J Neill1
  1. 1School of Health, University of Northampton, Northampton, UK

Abstract

Objective To present the grounded theory of “containing acute childhood illness within family life” and discuss its implications for family care.

Methods Glaserian grounded theory qualitative study comprised 24 in-depth family interviews with 15 families. QRS NVivo software was used to facilitate constant comparative analysis and the generation of the grounded theory.

Results This doctoral qualitative study shows that acute childhood illness at home is often distressing for children and their families. Families strive to “do the right thing” for their child and, in response to perceived informal social rules, to “contain acute childhood illness within family life”—the core category. Illnesses that they are expected to contain are those defined as minor or normal, whereas illnesses the family defines as “real” are those for which medical help should be sought. Informal social rules are learnt through “felt or enacted criticism” during parent’s encounters with others, in childcare, education and health services, when their children are ill—perceived as a threat to parents’ moral status. Consequently, parents take action to avoid exposure to such negative scrutiny, sometimes resulting in late consultation. Families appear to be responding to the pervading culture of individualism within society, containing their difficulties—in this case their child’s illness—within the immediate family group.

Conclusions The findings indicate a need to develop professionals’ skills in facilitating family care, reducing the incidence of felt or enacted criticism and the “hidden anxiety” for families when seeking help for a sick child.

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