a) How do people help their frail older relatives or friends to manage health problems? A qualitative interview study
Dr Louisa Polak, Visiting Researcher
2021 – 2022
I am setting up a new study to examine the “informal” work involved in enabling frail older people to maintain their health and wellbeing at home, work done by people who would not describe themselves as carers. In the NHS we already seek to identify and support carers, but do not generally take account of the everyday teamwork that many older people rely upon. By focusing on this teamwork, the study’s findings will complement the growing body of knowledge about improving self-care for chronic conditions and reducing the need for hospital admission towards the end of life.
Funding[Application in progress]
b) Experiences of oldest-old spouses caring for their partner approaching end-of-life: A narrative interview study
Tessa Morgan, Woolf Fisher PhD student
2017 – 2021
Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Older spouses are frequently providing for their partner’s end-of-life care at home, despite potentially facing their own health issues. Little is known about spouse caregivers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. This group has also been identified as utilising less formal services whilst caring; raising further equity concerns.
This doctoral study comprises a systematic review of the existing evidence, identifying 19 published studies orientated around the themes “embodied impact of care”; “caregiving spouse’s conceptualisations of their role” and “learning to care”. A longitudinal narrative interview study was then conducted between August 2018-August 2019 comprising 41 interviews with 20 participants from 17 older couples. Analysis of these findings are on-going.
The first key finding has been that requiring older people to identify as carers to receive formal assistance leaves one group invisible and the other group unsatisfied with their support options. Older couples should instead be supported as a dyad within the context of greater promotion of their candidacy for support. A second key finding is that the dosette box plays an essential role in making older couples everyday care experiences bearable as well as operating as a “weapon of the weak” for them to monitor their pharamacist’s and GP’s quality of care. A final finding centres on the work these spouses do as “undercover integrators” to connect their partner’s care across care home, hospital and home settings.
Woolf Fisher Trust, New Zealand. Wellcome Trust (Grant WT103343MA)
- Morgan T, Bharmal A, Duschinsky R, Barclay S (2020) Experiences of oldest-old caregivers whose partner is approaching end-of- life: A mixed-method systematic review and narrative synthesis. PLoS ONE 15(6): e0232401. https://doi.org/10.1371/journal.pone.0232401
- Morgan, T., Duschinsky R, Barclay, S. Maintenance Art: Paul Stenner’s liminality and the case of older caregiving spouses Accepted book chapter – Planned publication late 2021.
- Morgan, T., Duschinsky R, Gott, M., Barclay S Do older spouses caring for their partner who is approaching their end-of-life position themselves as carers?– Under review
- Morgan, T., Duschinsky R, Barclay S. “I press the button”: A narrative study exploring how the dosette box makes older spouses end-of-life caregiving bearable – to be sent for review immanently
- Gott, M., Morgan, T., Williams, L. (2020) Gender and Palliative Care: A Call to Arms Palliative and Supportive Care 14:1-15.
- Gardiner, C., Robinson, J., Connolly, M., Hulme, C., Kang, K., Rowland, C., Larkin, P., Meads, D., Morgan, T., Gott, M. (2020) Equity and the financial costs of informal caregiving in palliative care: a critical debate BMC Palliative Care 19(71):1-7.
c) Self-management at the end of life
Joshua Gallagher, NIHR ARC PhD Student
2020 – 2023
Supporting self-management or ‘self-care’ for people living with chronic conditions is a current priority in UK health and social care, as described in the NHS Long Term Plan. By enabling better individual management of symptoms caused by disease, it is hoped that patients will be better able to live independently in their homes. However, it is unclear how self-management is experienced at the end of life as dependency on care services grows. With a view to improving self-management I intend to conduct fieldwork to understand this experience and propose ways in which self-management can be improved towards the end of life.
NIHR Applied Research Collaboration