Paper
Friday, 21 July 2006
This presentation is part of : Models and Strategies to Care for the Chronically Ill
Caring for Children with Glutaric Aciduria Type 1: The Experiences of Irish Parents
Caroline O' Connor, MSc, BNS, RGN, RCN, National Centre for Inherited Metabolic Disorders, Children's University Hospital, Temple Street, Dublin 1, Ireland, Dublin 1, Ireland
Learning Objective #1: Identify common themes identified by families of children with Glutaric Aciduria Type 1 (GA1).
Learning Objective #2: Discuss the challenges encountered by families who have a child with GA1
Objectives:
The specific aim of this study was to explore the experiences of Irish parents of children with the condition Glutaric Aciduria Type 1 (GA1) (a rare inborn error of metabolism).
Design:
Qualitative descriptive design.
 Sample & Setting:
A sample of eight parents was interviewed using a semi-structured interview guide in a setting chosen by participants.
Findings: The findings of this study reflect an interpretation of the parents’ experience from their own perspective. Although each parent and each family is unique, there are visible similarities in their experiences. This study demonstrates that families of children with GA1 share experiences common to families of other chronically ill children. The study findings are presented as three main themes namely; diagnosis and adjusting to diagnosis, living with GA1, and challenges and stressors faced by parents of children with GA1.
The experiences described by the parents in this study indicate the magnitude of the struggle involved in supporting and providing care to their sick children while maintaining a relatively normal life for their other children and partners. Uncertainty and fear of the future prevail long after diagnosis. Living one day at a time, establishing and maintaining routine, careful vigilance of their child’s condition, establishing and utilising support networks are the most efficient coping strategies used by parents.
Implications
Recommendations are made for nursing practice, education and further research. Through listening to parental experiences, the health professional is provided with important information related to the stresses and strengths of the parenting experience thus assisting in the development of strategies to support families in the future. Development of short-term and intermediate goals in collaboration and negotiation with parents is recommended. Understanding of the uncertainty and level of vigilance parents live with daily may assist health professionals in developing and planning interventions to improve the quality of care.

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