Exploring Advance Care Planning
Research type
Research Study
Full title
Exploring Advance Care Planning: communication processes in hospital and community settings
IRAS ID
231109
Contact name
Jennifer Rogerson
Contact email
Sponsor organisation
Healthwatch Essex
Duration of Study in the UK
0 years, 3 months, 30 days
Research summary
Advance Care Planning (ACP) forms one of the key components in end of life care. ACP is supported and encouraged by the NHS and the public (60-90% of people support ACP). The benefits of advanced directives (Ads) and ACP are well documented. Randall et al (2010: 1348) argue that the literature on ADs and ACP show that those engaged in ACP experience end of life care that more closely matches their wishes than those who do not. They also receive less aggressive care at the end of life. Yet, Stewart et al (2011), Hasson et al (2010) and Seymour (2004) elaborate on a growing research finding: despite the benefits, people are reluctant to engage ACP. Indeed, only 8% of the UK public has an ACP (RCP 2009). Therefore, in order to improve end of life care, our research aims to address a gap in the literature on communication that centres on why people do not do ACP.
In conjunction with this question, we aim to examine how end of life care is experienced in Essex. By observing and interviewing people throughout the care-cycle (participant-observation in one hospital and community homes), alongside focus groups, we will begin to address questions of ACP reluctance and to build an ethnography of end of life care in Essex.
The research is based at Basildon Hospital and Macmillan affiliated hospices at home. People will be recruited via health professionals’ recommendations and will be receiving palliative care. Focus group participants will be recruited via the Healthwatch Essex networks and social media and will be open to anyone in the care-cycle who has experienced, been interested in or offered end of life care and/or ACP.
REC name
London - Stanmore Research Ethics Committee
REC reference
17/LO/1467
Date of REC Opinion
4 Oct 2017
REC opinion
Further Information Favourable Opinion