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

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.

Name thesis:degree_name

Master of Science

Level thesis:degree_level

Masters

Discipline thesis:degree_discipline

Family Therapy

Grantor

Texas Woman's University

Year dc:date.issued

2017

Author dc:creator

• Shropshire, Shirley

Chair dc:contributor.committeechair

• Ladd, Linda

Committee members dc:contributor.committeemember

• Brock, Linda
• Kuhn, Veronica

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

Language dc:language.iso

en

Handle dc:identifier.uri

http://hdl.handle.net/11274/9765

OAI identifier oai:identifier

oai:twu-ir.tdl.org:11274/9765