Living with incurable cancer: what are the rehabilitation needs in a palliative setting?

Kirsti Loughran, Sarah Rice, Lisa Robinson

Research output: Contribution to journalArticle

Abstract

Background:Increasing numbers of people are living with incurable cancers. Symptoms, side effects, andtreatment burdens impact on physical functioning, yet little is known about the impact on people’s livesand how best to provide rehabilitation.Materials and methods:A qualitative study employing a phenomenological approach explored the livedexperience of incurable cancer. A purposive sample of six people participated in semi-structured inter-views. The data were analysed thematically at a semantic level to identify the functional difficulties experi-enced by people living with incurable cancer, the meanings of those difficulties, and participantsperceived rehabilitation needs.Results:People living with incurable cancer described cancer-related issues spanning all five domains ofthe International Classification of Functioning, Disability and Health (ICF). Although highly valued amongststudy participants, rehabilitation services were difficult to access, poorly utilised, and referrals were spor-adic and consequential; indicative of poor awareness of rehabilitation for people with incurable canceramongst potential referrers.Discussion:Participants valued a change in terminology away from“palliative”towards more positive lan-guage in line with enhanced supportive care movements. Validated tools such as the Palliative CareTherapy Outcome Measure, which align with the ICF, would allow rehabilitation professionals to demon-strate maintenance or improvement in participation and wellbeing.
Original languageEnglish
Pages (from-to)770-778
Number of pages9
JournalDisability and Rehabilitation
Volume41
Issue number7
Early online date29 Nov 2017
DOIs
Publication statusPublished - 27 Mar 2019

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