'Never Really Free': Anaphylaxis and the Family Leisure Experience

Abstract

ABSTRACT

This qualitative study utilized a systems theory approach and followed the premise that families are systems that seek a balanced state, interact with their environment, and are goal directed to explore the impact of anaphylaxis on families from a parental perspective. The purpose of this study was to explore the role of family leisure in families while living with a child diagnosed with anaphylaxis. This was done by exploring parental meanings and experiences of living with anaphylaxis and how this impacted their family leisure. Five research questions guided the inquiry relating to experiences and meanings of anaphylaxis, experiences and participation in family leisure, valuations and meanings of family leisure, caregiving as a constraint to family leisure, and gender considerations.

A local support group for families and individuals living with anaphylaxis (WRASE) was contacted and aided in identifying parents who would be interested in participating in this study. Specific attention was given to obtaining a sample that included different allergies, ages of children, and number of children in the household. Four families were selected and both parents were interviewed separately in all but one case.

Four core themes emerged from the in-depth interviews and included An Emotional Journey, Seeking Community Support and Dealing with Negative Feedback, Impact on Family Leisure, and The Increased Domestic Workload and Changing Role of Mother. In essence, parents experienced intense feelings of fear, paranoia, and stress as they sought to manage their child’s allergy and these feelings were just as intense during their family leisure time. Role changes and strain were particularly severe for the mothers in this study.

The parents of children with anaphylaxis have received little attention in social science research to date. This research adds to the literature on chronic illness and also offers new insight into how anaphylaxis affects family leisure. Key findings in this area were the lack of opportunities for travel and social isolation. Furthermore, it was found that leisure, although often thought to be beneficial in managing stress and improving family functioning, may not be available to those living with anaphylaxis.