Parents' experiences of children's health care for hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders.
Hypermobile Ehlers–Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) are underdiagnosed hereditary connective tissue disorders requiring health care across specialties. Using mixed methods, we explored how parents have experienced children's health care for hEDS/HSD. Surveyed parents...
| Publicado en: | Children's Health Care Vol. 51; no. 1; pp. 37 - 62 |
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| Autores principales: | , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Taylor & Francis Ltd
Jan-Mar 2022
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=154342582&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 154342582 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 02739615 7LJ jtl: Children's Health Care issn: 02739615 maglogo: N pubinfo: dt: Jan-Mar 2022 vid: 51 iid: 1 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 154342582 152627369 154342582 154342582 10.1080/02739615.2021.1960165 154342582 ppf: 37 ppct: 25 formats: fmt: @attributes: type: P tig: atl: Parents' experiences of children's health care for hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders. aug: au: Bell, Lauren Pearce, Gemma affil: School of Psychological, Social and Behavioural Sciences, Coventry University, Coventry, UK sug: subj: Ehlers-Danlos Syndrome Joint Instability Child Health Child Care Parental Attitudes Evaluation Human Multimethod Studies Child Surveys Interviews Thematic Analysis Professional-Family Relations Child: 6-12 years ab: Hypermobile Ehlers–Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) are underdiagnosed hereditary connective tissue disorders requiring health care across specialties. Using mixed methods, we explored how parents have experienced children's health care for hEDS/HSD. Surveyed parents (N = 297) reported varying experiences, though professional understanding was negatively appraised by most parents. Themes identified from interviews (n = 13) were: (1) awareness and understanding are fundamental, (2) the importance of the therapeutic relationship, (3) limitations of healthcare systems, and (4) diagnostic labels are meaningful. Findings suggest that achieving person-centered care may broadly improve health care for families with hEDS/HSD. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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