Researching the rehabilitation needs of patients with life-limiting disease: Challenges and opportunities

Abstract

People with life-limiting disease are among the most vulnerable groups accessing healthcare. Given this vulnerability, polarized views have been expressed in the literature regarding such individuals' involvement in research studies. This is further compounded when the research is focused on rehabilitation, the concept of which is often misunderstood by patients, carers, and medical professionals. A number of factors can affect how we conduct research to elicit the needs of people with life-limiting disease, including social, historical, and cultural influences. Despite advances in palliative care research, challenges remain for those working across the specialism. In this review, we discuss the challenges of conducting rehabilitation research in this distinct clinical specialism and important considerations when involving patients and carers. We highlight the opportunities for understanding patient rehabilitation needs through mixed methods research design for studies involving those undergoing potentially complex rehabilitation interventions across settings.

Note

People with life-limiting disease will be referred to as ‘patients’ in the context of their being involved with the healthcare system and receiving care from a clinician.

Keywords:

• Rehabilitation
• Palliative care
• Ethics
• Research

Acknowledgements

Paula Leslie would like to acknowledge Dr Lisa Parker who discussed some of these ideas as part of an assignment in her Bioethics programme at the University of Pittsburgh. Justin Roe and Catherine Sandsund receive funding from the Royal Marsden Cancer Charity and acknowledge support from the National Institute for Health Research (NIHR) Royal Marsden/Institute of Cancer Research Biomedical Research Centre.