Caring for Children with Glutaric Aciduria Type 1: The Experiences of Irish Parents

2.50
Hdl Handle:
http://hdl.handle.net/10755/150627
Type:
Presentation
Title:
Caring for Children with Glutaric Aciduria Type 1: The Experiences of Irish Parents
Abstract:
Caring for Children with Glutaric Aciduria Type 1: The Experiences of Irish Parents
Conference Sponsor:Sigma Theta Tau International
Conference Year:2006
Author:O' Connor, Caroline, MSc, BNS, RGN, RCN
P.I. Institution Name:Children's University Hospital, Temple Street, Dublin 1, Ireland
Title:Clinical Education Facilitator in Inherited Metabolic Disorders
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.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Sigma Theta Tau International

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleCaring for Children with Glutaric Aciduria Type 1: The Experiences of Irish Parentsen_GB
dc.identifier.urihttp://hdl.handle.net/10755/150627-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Caring for Children with Glutaric Aciduria Type 1: The Experiences of Irish Parents</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Sigma Theta Tau International</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2006</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">O' Connor, Caroline, MSc, BNS, RGN, RCN</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">Children's University Hospital, Temple Street, Dublin 1, Ireland</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Clinical Education Facilitator in Inherited Metabolic Disorders</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">caroline.oconnor@tsch.ie</td></tr><tr><td colspan="2" class="item-abstract">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 &amp; 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.</td></tr></table>en_GB
dc.date.available2011-10-26T10:38:23Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T10:38:23Z-
dc.description.sponsorshipSigma Theta Tau Internationalen_GB
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