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50 ASCERTAINING THE PARENTAL PERSPECTIVE OF CARING FOR A CHILD WITH BILIARY ATRESIA
  1. J. Erlichman*,
  2. J. Arvay-Nezu*,
  3. J. Shea*,
  4. B. A. Haber+
  1. *Philadelphia, PA
  2. +The University of Pennsylvania School of Medicine

Abstract

Purpose of Study Ascertaining the parental perspective of caring for a chronically ill child provides valuable insights for clinicians striving to improve patient/family satisfaction, coping, and compliance. The purpose of the present study was to understand the parental impact of caring for a child with biliary atresia (BA).

Methods Families were recruited from a registry of BA patients seen at a single center. Three focus groups were held in summer and fall of 2003 with the parents of children with BA. A total of 18 parents of 12 children with BA participated in the three group sessions. Within 48 hours of each session the investigators met as a team to aggregate the data.

Study Design Through content analysis, statements generated during the focus group sessions were indexed and categorized. Four themes emerged from the three focus group sessions: emotional stress, need for social support, lack of education, and financial burden. Emotional stress was exemplified through feelings of “guilt, anger, helplessness, fear of the future, worry.” The ideal social support structure was comprised of four elements, though not all received support from all four sources: support from the hospital staff, friends, family, and co-workers. Every parent wanted to know the cause and course of BA and many felt frustrated by this lack of information. The financial impact of BA was evidenced in many ways. Some parents lost employment, stopped working, or switched jobs as a result of their child's condition. These consistently reiterated themes illustrate the parental impact of caring for a child with BA.

Conclusions Focus group sessions such as those discussed in this abstract delineate disease-specific issues that need to be incorporated into the comprehensive medical model when dealing with the child with BA. As has been shown for other disease models, meeting these parental needs will optimize patient health care delivery; improve compliance, coping, and overall family satisfaction with the patient care experience.

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