The Supportive Care Needs of Parents With a Child With a Rare Disease: A Qualitative Descriptive Study

Published:December 02, 2015DOI:


      • Focus groups used to investigate needs of parents of a child with a rare disease.
      • Parents felt socially isolated caring for their child with a rare disease.
      • Often parents have to assume the role of ‘expert’ in caring for their child.
      • Parents are frustrated by a lack of knowledge of disease by health professionals.
      • Caring for a child with a rare disease may impact on family relationships.
      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.

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