ACI International - Journal of the WAO

¹Wilfrid Laurier University Faculty of Social
Work, 75 University Ave. W., Waterloo, ON, N2L 3C5, Canada
²Hospital for Sick Children, Department of Social
Work, Toronto, ON, Canada
³Hospital for Sick Children, Toronto, ON,
Canada
⁴Faculty of
Social Work, Wilfrid Laurier University, Waterloo, ON,
Canada

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Abstract

Background: This study addresses the gap in the medical, mental health, and social work literature regarding the psychosocial dimensions of living with anaphylaxis. Methods/data base: Using qualitative methodology, parents representing 17 families were interviewed about their experiences in adjusting to living with anaphylaxis. The ages of the 17 diagnosed children ranged from toddler to 18. Parents were questioned about the sources, nature, and adequacy of information and support received, retrospective data about their experience at the time of diagnosis and subsequently, strategies for management of safety, and perceptions of the child's comprehension of and responses to the required adjustments. Results: Responses included information about the helpfulness of medical personnel and social networks, parenting dilemmas, family activities, parents' and children's anxieties, challenges, and coping strategies. The authors develop an understanding of some important patterns in the adaptation of children and their families to living with anaphylaxis. There are developmental and episodic points at which anxiety rises and additional information and support are required by the families. Conclusions: Parents identify the need to maintain a balance that is just right (the "Goldilocks principle") between protective and debilitating anxiety. Identification of gaps in crucial information and supports suggest recommendations to medical practitioners about how to realistically optimize the help given to families when a child has been diagnosed with anaphylaxis. These recommendations are consistent with the "family model" for treatment of chronic illness.