We are delighted to propose to you an article focusing on parenting a child with a rare disease, published in PubMed by Genevieve Currie and  Joanna Szabo from School of Nursing and Midwifery of Mount Royal University in Calgary, Canada. 

Article explores how parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parents’ experience of caring for a child with a rare disease is limited. 

For the purposes of this research fifteen parents of children with rare diseases participated in semistructured interviews. The results have then been subjected to an interpretive thematic analysis that has revealed that due to the rarity of the disease and an overall lack of knowledge of the disease, there is an increase in the burden on the family in relation to “rarity” in addition to “disability.”

Four insights were also revealed: (a) Parents often know more about the disease then Health Care providers, and this leads to entanglements in communication and collaboration as experts and parents; (b) there is lack of coordination of care between providers and services caring for children with rare diseases; (c) there is a gap in accessibility to government supports; and (d) due to fragmented care, parents must fill the aforementioned gaps by juggling multiple roles including that of advocate, case manager, and medical navigator.

This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research.

For further reading please click here.


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