Thinking Ahead
Research type
Research Study
Full title
Thinking ahead about medical treatments in advanced illness: A qualitative study of barriers and enablers in end-of-life care planning with patients and families from Black, Asian and Minority Ethnic (BAME) backgrounds
IRAS ID
251664
Contact name
Christina Faull
Contact email
Sponsor organisation
University Hospitals of Leicester NHS Trust
Duration of Study in the UK
2 years, 5 months, 30 days
Research summary
Summary of Research
This study will explore how patients with serious illness from Black Asian and Minority Ethnic (BAME) backgrounds, family carers and the doctors and nurses who support them, think ahead about becoming very ill and dying. We want to:
•Understand different approaches people have to this and things that help or prevent conversations and future planning within the family and with doctors and nurses;
•Identify how professionals can best support patients and what training is needed to do this.
We will aim to understand:
•BAME patients and family carers’ experiences of serious illness and end of life care planning,
•how their experiences compare with their actual needs and wishes,
•how services can be developed to meet their needs and provide excellent end of life care.
Information will be collected by:
1.Creating 20 detailed case studies. Patients, their family carers and the doctors and nurses supporting them, will be interviewed up to 3 times over 4 months. Patients’ medical records will also be reviewed for information about their conversations with doctors and nurses and decisions about care.
2.Interviewing 20 bereaved family carers about their views and experiences of talking with relatives or friends about becoming very ill and dying and of end of life care planning.
3.Bringing together patients, family carers, professionals, managers, local NHS decision-makers, and educators to workshops to look at the findings from our interviews and to shape on how they can be used to make care better for the patients and families.Findings will be shared with professionals and with the public via journals, at conferences and community events and posted on a study website. Health and social care trainers and professionals will be informed of study findings via local hospices and Universities teaching programmes and a free online learning resources will also be developed.
Summary of Results
This study explored the experiences of terminally ill patients and their families from different ethnic backgrounds and whether and how they think ahead about their health getting worse and dying. It included 93 interviews from 18 patient case studies, 19 interviews with bereaved family care givers and workshops with 50 public and professional stakeholders.Most patients and their family care givers lived with hope, the future only considered in terms of practical matters of wills and funerals rather than thinking about becoming less well and dying which, for some, was counter to their beliefs. Family duty and community expectations stopped some participants from seeking additional support. However, where the family did not know how gravely ill the patient was their unexpected decline and death could be a devastating experience, with regret that they had been denied the chance to prepare and to make the best use of the time. Health care professionals (HCPs) appear to feature little in people’s lives. Some participants indicated a lack of trust and a poor experience of health care but others talked of good experiences.
People want care that is personal to them and compassionate. This is no different to people from white British backgrounds and supports the use of different physical, social, spiritual and psychological care frameworks used in palliative care to address the individual needs of patients and families. However, HCPs need additional skills to navigate complex, sensitive communication and enquire about aspects of people’s lives that may be unfamiliar. Personalising care requires HCPs to get to ‘know’ the person and develop confidence and skills to supporting patients and their families. Training, using stories based on our interviews, was seen as an effective way to support this. Effective communication and information sharing between trusted individuals was seen by stakeholders as important in providing better care.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
18/WM/0310
Date of REC Opinion
6 Nov 2018
REC opinion
Favourable Opinion