The Responses Study
Research type
Research Study
Full title
Exploring Patient Responses to Advance Care Planning – A Qualitative Study
IRAS ID
275766
Contact name
Jonathan Koffman
Contact email
Duration of Study in the UK
0 years, 11 months, 2 days
Research summary
Patients who are living with a life-limiting and progressive illness often undergo a process called Advance Care Planning (ACP). An advance care plan is simply a written guide spelling out a person’s likes, dislikes, wishes, and the treatments they would want to refuse or the rituals they would want to follow - whether during illness or at the end of life. The planning process helps people and their relatives think about different scenarios, and the plans that would be used by medical staff if that person becomes too ill to communicate. ACP discussions often involve talking about difficult and challenging issues.
It is widely accepted by the Palliative Care profession that ACP is an important and worthwhile process. Research to date has focussed on issues such as how many patients have achieved their wishes and why, what makes ACP possible, and what prevents patients or healthcare professionals from starting these discussions. However, there has been little research into the effect ACP discussions can have on a patient and their relatives, or how patients react to them. As a result, we do not have a full understanding of the psychological impact on patients and their families, and any resulting changes in patients’ outlook, emotional state, family and clinical relationships, and what they do.
Understanding these phenomena will be vital to improving the delivery of palliative care services in the future, contributing to improvements in carrying out ACP discussions, and caring for patients and relatives after they have occurred. Increasing our knowledge base will allow us to make recommendations to healthcare professionals about how best to conduct these important discussions, and how best to support patients and their relatives following ACP discussions.
We have designed a Qualitative study to explore an individual’s psychological responses to ACP, and its influence on their subsequent thoughts, emotions and behaviours. Participants will take part in a semi-structured interview to explore their perspective on previous ACP discussions. Participants will be recruited from a large Hospice in Surrey. This research forms the project for a Masters in Palliative Care at King’s College London.
REC name
London - Bloomsbury Research Ethics Committee
REC reference
20/LO/0118
Date of REC Opinion
17 Apr 2020
REC opinion
Further Information Favourable Opinion