Klippel-Feil Syndrome: A study of parents' experiences of diagnosis, health service use, and online support in a rare disease population

Date

12/14/2017

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Abstract

ABSTRACT SHIRLEY SHROPSHIRE KLIPPEL-FEIL SYNDROME: A STUDY OF PARENTS’ EXPERIENCES OF DIAGNOSIS, HEALTH SERVICE USE, AND ONLINE SUPPORT IN A RARE DISEASE POPULATION

DECEMBER 2017 This study describes the experience of diagnosis, health service use, and online support for parents who have a child diagnosed with Klippel-Feil Syndrome. The survey drew questions from the EurordisCare 2 and 3 surveys. A total of 15 parents participated in the study; parents were recruited from a closed online Facebook support group for parents of KFS children. This study describes psychosocial issues relevant to KFS, such as challenges, adjustments, and resources. Uncertainty in KFS treatment and management are delineated, including discussion of ways parents experience uncertainty. Access to physicians with KFS experience and travel were found to be barriers in care for the parents in this study. The positive role of a closed online support group and how the group fosters resilience are discussed.

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Keywords

Klippel-Feil syndrome, Rare disease, Parents, Health service, Patient-provider relationship, Diagnosis, Support group

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