Personalised care and patient experience: the PERSPEX study
Research type
Research Study
Full title
How is personalised care for people near end of life in hospital defined, prioritised, delivered, and experienced by patients, informal caregivers, clinicians and healthcare leaders? An ethnography and interview study (PERSPEX).
IRAS ID
334362
Contact name
Arjun Kingdon
Contact email
Sponsor organisation
The Princess Alexandra Hospital NHS Trust
Clinicaltrials.gov Identifier
DOI 10.17605/OSF.IO/U4BP2, Open Science Framework public database registration number
Duration of Study in the UK
2 years, 11 months, 6 days
Research summary
'Personalised care' is said to be important in the NHS Long Term Plan. Hospital inpatients with palliative care needs are a group for whom receiving personalised care is particularly important. Current evidence suggests that this group does not always receive personalised care and little evidence exists exploring the perspectives of hospital inpatients and their families about personalised care. We also lack evidence about the level of provision of personalised care in hospitals, and which components of 'personalised care' are most important to patients, families and clinicians.
In this study, we will recruit current hospital inpatients who are thought to be possibly in the last year of life, their families and members of their treating team. We will observe participants communicating in ward round reviews, family meetings and other clinical encounters. With permission, we will interview participants about their experiences of receiving or giving clinical care and how it is 'personalised' or not. The number of observed clinical encounters and interviews will be flexible depending on participants' preferences. Participants can take their own audio-recordings and share with the research team if they wish.
Interviews will have an order of questions that are flexible and will be recorded with permission. The information collected will have names and places removed to make it impossible to identify who took part. The analysis will look for patterns and differences in views, experiences and understanding. Findings will be shared widely with local service providers and the public to help inform future end-of-life care practice.
This study is funded by AK's award of an Edward Showler Fellowship at the University of Cambridge.
REC name
Wales REC 4
REC reference
24/WA/0286
Date of REC Opinion
9 Oct 2024
REC opinion
Favourable Opinion