Ageing With Cerebral Palsy; What Are the Health Experiences of Adults with Cerebral Palsy? A Qualitative Study

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aut.relation.articlenumbere012551en_NZ
aut.relation.issue10en_NZ
aut.relation.journalBMJ Openen_NZ
aut.relation.volume6en_NZ
aut.researcherMcPherson, Kathryn
dc.contributor.authorMudge, Sen_NZ
dc.contributor.authorRosie, Jen_NZ
dc.contributor.authorStott, Sen_NZ
dc.contributor.authorTaylor, Den_NZ
dc.contributor.authorSignal, Nen_NZ
dc.contributor.authorMcPherson, Ken_NZ
dc.date.accessioned2019-03-04T00:28:35Z
dc.date.available2019-03-04T00:28:35Z
dc.date.copyright2016en_NZ
dc.date.issued2016en_NZ
dc.description.abstractObjective To enhance understanding of the experiences of ageing with cerebral palsy (CP) in adulthood with a particular focus on experiences with health services. Design A qualitative descriptive methodology was applied to capture adults' views of ageing with CP and related interactions with health services. Semistructured interviews were undertaken with data systematically coded and interpreted by grouping information into categories. Themes that encompassed the categories were identified through thematic analysis. Setting All healthcare settings. Participants 28 adults (14 women) with CP, aged 37–70 years. Results 5 themes covered the breadth of participants' experiences: (1) acceptance of change; (2) exploring identity: cerebral palsy as only one part of self; (3) taking charge of help; (4) rethinking the future and (5) interacting with health professionals. Being seen and being heard were the features described in positive healthcare interactions. Participants also valued health professionals who reflected on who holds the knowledge?; demonstrated a willingness to learn and respected participants' knowledge and experience. Conclusions Our findings could, and arguably should, inform more responsive strategies for disabled people in health services and, indeed, all health consumers. Our study supports other findings that impairments related to CP change and, for many, severity of disabling impact increases with age. Increased interactions with health and rehabilitation professionals, as a consequence of these changes, have the potential to impact the person's healthcare experience either positively or negatively. A ‘listening health professional’ may bridge their knowledge gap and, in recognising the person's own expertise, may achieve three things: a more contextualised healthcare intervention; a better healthcare experience for the person with CP and positive impact on the person's sense of autonomy and identity by recognising their expertise. Future research should identify whether this approach improves the healthcare experience for adults living with CP.en_NZ
dc.identifier.citationBMJ Open 2016;6:e012551. doi: 10.1136/bmjopen-2016-012551
dc.identifier.doi10.1136/bmjopen-2016-012551en_NZ
dc.identifier.issn2044-6055en_NZ
dc.identifier.urihttps://hdl.handle.net/10292/12301
dc.languageENGen_NZ
dc.publisherBMJ Publishing Group Ltd.
dc.relation.urihttps://bmjopen.bmj.com/content/6/10/e012551
dc.rightsThis is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
dc.rights.accessrightsOpenAccessen_NZ
dc.subjectAgeingen_NZ
dc.subjectCerebral palsyen_NZ
dc.subjectHealth professionalen_NZ
dc.subjectIdentityen_NZ
dc.subjectInteractionen_NZ
dc.titleAgeing With Cerebral Palsy; What Are the Health Experiences of Adults with Cerebral Palsy? A Qualitative Studyen_NZ
dc.typeJournal Article
pubs.elements-id212472
pubs.organisational-data/AUT
pubs.organisational-data/AUT/Health & Environmental Science
pubs.organisational-data/AUT/Health & Environmental Science/Clinical Sciences
pubs.organisational-data/AUT/PBRF
pubs.organisational-data/AUT/PBRF/PBRF Health and Environmental Sciences
pubs.organisational-data/AUT/PBRF/PBRF Health and Environmental Sciences/HH Clinical Sciences 2018 PBRF
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