{"id":{"repo_id":"twu","oai_identifier":"oai:twu-ir.tdl.org:11274/9765"},"canonical_url":"https://search.dev.ndltd.org/etd/twu/oai:twu-ir.tdl.org:11274/9765","repository":{"repo_id":"twu","name":"Texas Woman's University","base_url":"https://twu-ir.tdl.org/server/oai/request"},"display":{"title":"Klippel-Feil Syndrome: A study of parents' experiences of diagnosis, health service use, and online support in a rare disease population","abstract":"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.","abstract_html":"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.","abstract_has_math":false,"creators":["Shropshire, Shirley"],"institution":"Texas Woman's University","degree_name":"Master of Science","degree_level":"Masters","degree_discipline":"Family Therapy","degree_department":null,"school":null,"contributors":[],"advisors":[],"committee_chairs":["Ladd, Linda"],"committee_members":["Brock, Linda","Kuhn, Veronica"],"year":2017,"date_issued":"12/14/2017","date_published":"12/14/2017","updated_at":"2026-07-24T05:05:07Z","subjects":["Klippel-Feil syndrome","Rare disease","Parents","Health service","Patient-provider relationship","Diagnosis","Support group"],"languages":["en"],"rights":[],"rights_urls":[],"identifier_entries":[]},"links":{"outbound_url":"http://hdl.handle.net/11274/9765","outbound_label":"Handle","outbound_source":"dc:identifier.uri"},"metadata_groups":[{"id":"people","label":"People","entries":[{"key":"dc:contributor.committeechair","label":"Committee Chair","values":["Ladd, Linda"]},{"key":"dc:contributor.committeemember","label":"Committee Member","values":["Brock, Linda","Kuhn, Veronica"]},{"key":"dc:creator","label":"Author","values":["Shropshire, Shirley"]}]},{"id":"academic_context","label":"Academic Context","entries":[{"key":"dc:date.accessioned","label":"Dc Date Accessioned","values":["2018-05-10T16:38:37Z"]},{"key":"dc:date.available","label":"Dc Date Available","values":["2018-05-10T16:38:37Z"]},{"key":"dc:date.issued","label":"Date","values":["12/14/2017"]},{"key":"dc:type","label":"Dc Type","values":["Thesis"]},{"key":"thesis:degree_discipline","label":"Discipline","values":["Family Therapy"]},{"key":"thesis:degree_level","label":"Degree Level","values":["Masters"]},{"key":"thesis:degree_name","label":"Degree Name","values":["Master of Science"]},{"key":"thesis:institution_name","label":"Thesis Institution Name","values":["Texas Woman's University"]}]},{"id":"subjects_keywords","label":"Subjects and Keywords","entries":[{"key":"dc:subject","label":"Dc Subject","values":["Klippel-Feil syndrome","Rare disease","Parents","Health service","Patient-provider relationship","Diagnosis","Support group"]}]},{"id":"language_rights","label":"Language and Rights","entries":[{"key":"dc:language.iso","label":"Language (ISO)","values":["en"]}]},{"id":"identifiers","label":"Identifiers","entries":[{"key":"dc:identifier.uri","label":"Identifier URI","values":["http://hdl.handle.net/11274/9765"]}]},{"id":"additional","label":"Additional Metadata","entries":[{"key":"dc:description.abstract","label":"Abstract","values":["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."]},{"key":"dc:format.mimetype","label":"Dc Format Mimetype","values":["application/pdf"]},{"key":"dc:title","label":"Title","values":["Klippel-Feil Syndrome: A study of parents' experiences of diagnosis, health service use, and online support in a rare disease population"]}]}],"canonical_facts":{"dc:contributor.committeechair":["Ladd, Linda"],"dc:contributor.committeemember":["Brock, Linda","Kuhn, Veronica"],"dc:creator":["Shropshire, Shirley"],"dc:date.accessioned":["2018-05-10T16:38:37Z"],"dc:date.available":["2018-05-10T16:38:37Z"],"dc:date.issued":["12/14/2017"],"dc:description.abstract":["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. 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