Establishing a research partnership for delivering palliative and end-of-life care for older people in rural and remote areas: a formative mixed-methods study

Abstract

Background
Many older people live in rural and remote areas. As the ageing population grows, conditions such as cancer, dementia and stroke will become more prevalent, causing a huge demand for palliative and end-of-life care. However, evidence regarding models of care and interventions in rural and remote areas is limited.

Aim
A new United Kingdom rural palliative care partnership was funded for 12 months. It aimed to understand the models of palliative and end-of-life care for older people with cancer, dementia and stroke in rural/remote areas across all four nations of the United Kingdom. It also aimed to identify the core priorities for research into rurality and palliative care for older people.

Methods
The project consisted of three integrated components, including: (1) a scoping review of relevant literature on rural palliative care for older people with cancer, dementia and stroke; (2) stakeholder engagement workshops using a modified Nominal Groups Technique and (3) qualitative interviews with family carers who supported rural-/remote-dwelling older adults towards the end of life.

Results
Our scoping review was undertaken in 2022. The search identified 1128 unique citations, of which five papers were included. There were no United Kingdom studies on models of palliative and end-of-life care delivered to older people with cancer, dementia or stroke within rural/remote locations. However, international models of care were identified. Models included technological interventions to reach those in remote locations, the role of palliative care nurses and the use of volunteers. Articles highlighted the importance of not replacing face-to-face care with technology for ease of reaching more people and emphasised the importance of effective interdisciplinary working in rural and remote palliative care.

Additionally, three online workshops to develop research capacity, identify models of care, understand issues of rurality and determine research priorities were attended by 15–20 stakeholders. Qualitative interviews were also undertaken with 20 family carers who had supported rural-/remote-dwelling older adults at their end of life. Data identified that rural/remote communities face challenges in accessing palliative and end-of-life care due to issues such as transport to and distance from services, poor broadband coverage and problems with workforce recruitment and retention.

Synthesising the data from these methods helped to identify some interventions and models of care for palliative and end-of-life care for older people in rural and remote areas. It also helped us to jointly shape and develop research priorities, which included workforce planning and service composition, facilitating preferred place of death and the role of technology. However, there are gaps in our understanding about how to improve the family carer support as well as digital literacy among older people to help them benefit from technological interventions.

Conclusions
Overall, there is a lack of research on palliative and end-of-life care models and interventions provided to older adults with cancer, dementia and stroke in rural and remote settings, especially in the United Kingdom. There is an urgent need to co-design community-based models of palliative and end-of-life care in rural and remote locations, considering the unique challenges of living in these areas.

Funding
This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135350.

A plain language summary of this research article is available on the NIHR Journals Library Website https://doi.org/10.3310/RWSG7439.