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

Abstract

Background: Increasing numbers of people are living with incurable cancers. Symptoms, side effects, and treatment burdens impact on physical functioning, yet little is known about the impact on people’s lives and how best to provide rehabilitation.

Materials and methods: A qualitative study employing a phenomenological approach explored the lived experience of incurable cancer. A purposive sample of six people participated in semi-structured interviews. The data were analysed thematically at a semantic level to identify the functional difficulties experienced by people living with incurable cancer, the meanings of those difficulties, and participants perceived rehabilitation needs.

Results: People living with incurable cancer described cancer-related issues spanning all five domains of the International Classification of Functioning, Disability and Health (ICF). Although highly valued amongst study participants, rehabilitation services were difficult to access, poorly utilised, and referrals were sporadic and consequential; indicative of poor awareness of rehabilitation for people with incurable cancer amongst potential referrers.

Discussion: Participants valued a change in terminology away from “palliative” towards more positive language in line with enhanced supportive care movements. Validated tools such as the Palliative Care Therapy Outcome Measure, which align with the ICF, would allow rehabilitation professionals to demonstrate maintenance or improvement in participation and wellbeing.

Implications for Rehabilitation

• Incurable cancer leads to a fluctuating multifactorial disability.

• People living with incurable cancer can benefit from rehabilitation input throughout their illness.

• Offering flexible and varied rehabilitation options for people living with incurable cancer will increase physical and emotional well-being, function, and coping.

• Allied health professionals should take and create opportunities to promote rehabilitation for people living with incurable cancer and their services to other potentially referring healthcare professionals to increase understanding of benefits and utilisation of available services for people living with incurable cancer.

Keywords:

• Incurable cancer
• rehabilitation
• palliative care
• functional impairment
• disability
• International classification of functioning
• disability and health (ICF)
• coping
• information

Acknowledgements

The authors would like to acknowledge the support of the Community Palliative Care Team in conducting the research, in particular, Debbie Collins, Jill McCord, Julie Dixon, Amy Scott, Karen Hertwick, and Anna Chadwick; the Northern Centre for Cancer Care Rehabilitation Team for their practical support; the interviewees for their open and candid interviews; the Cancer Perspectives group for their feedback during the study design, and Pete Middleton for support during the dissertation module.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

This work was supported by the small grant scheme of the North East of England Hub of the Council for Allied Health Professions Research (CAHPR).