The supportive care needs of parents with a child with a rare disease: a qualitative descriptive study

Pelentsov, Lemuel J., Fielder, Andrea L., and Esterman, Adrian J. (2016) The supportive care needs of parents with a child with a rare disease: a qualitative descriptive study. Journal of Pediatric Nursing, 31 (3). e207-e218.

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Abstract

There are few studies that exist which focus specifically on parents with a child with a rare disease. The purpose of this study was to better understand the lived experiences and supportive care needs (SCN) of parents caring for a child across a spectrum of rare diseases. A qualitative descriptive approach was used to guide the research, and four semi-structured focus group interviews were conducted with 23 parents (17 mothers and 6 fathers). Participants described 'feeling boxed-in outside the box' due to a number of limitations unique to their child's disease, daily practical challenges in providing care and the various relational impacts of caring for a child with a rare disease were discussed. The results from this study help to give clearer direction for health professionals on where to focus future efforts in better meeting the supportive care needs of parents and their child with a rare disease.

Item ID: 46174
Item Type: Article (Refereed Research - C1)
Keywords: children; experiences; parents; rare diseases; supportive care needs
ISSN: 1532-8449
Date Deposited: 28 Oct 2016 03:37
FoR Codes: 11 MEDICAL AND HEALTH SCIENCES > 1117 Public Health and Health Services > 111707 Family Care @ 100%
SEO Codes: 92 HEALTH > 9205 Specific Population Health (excl. Indigenous Health) > 920501 Child Health @ 100%
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