Understanding and responding to those bereaved through their family members' substance misuse
Principal Investigator: Prof. Tony Walter
Funding Body: ESRC
Duration: September 2012 - August 2015
Practitioner Guidelines: Bereaved through substance use
Project rationale and aims
What have we been doing?
- 100 interviews with 106 adults (including 6 couples) bereaved after the drug or alcohol-related death of a family member or other close person, 66 in England and 34 in Scotland
- Focus group discussions with 40 practitioners (some also bereaved) from a wide range of services.
- On the basis of what we learned we set up a working group of practitioners (some also bereaved) tasked to develop guidelines for service delivery.
- Subject to further funding, we will work with organisations to validate and test these guidelines.
Why have we done it?
People bereaved by substance use have been neglected by research, policy and practice and are therefore at risk. This research has aimed to understand their experiences and work with services to develop better responses – whether by the police, coroner’s courts, funeral services or bereavement and substance use agencies.
Who has been doing it?
Funded by the Economic and Social Research Council (2012 to 2015), death studies researchers from the Centre for Death and Society at the University of Bath have collaborated with addiction studies researchers at the University of Stirling, together with a family member advisor who has experienced this type of bereavement and provided support to others.
How did we do it?
Stage 1: Interviewing bereaved people
We recruited as wide a range of interviewees as possible through:
- A project awareness event in Bristol to which representatives from local services and organisations were invited, informed about the project and asked for their feedback and help with recruiting interviewees.
- Advertising through alcohol and drug treatment services and networks, bereavement organisations and networks, and word of mouth.
- Drawing on the bereaved family member advisor’s extensive network of contacts in the field.
Our style of interviewing was informal and conversational. Interviewees talked at length about their experiences, not only through answering our questions, but also introducing their own issues. Their responses were studied and analysed, and comparisons made between the two study areas. The findings were undergirded by the practice guidelines in stage 2.
What did we find?
These deaths are especially difficult to grieve due to:
- the pressures of coping with the person’s substance use while they were alive;
- the circumstances surrounding the person’s death;
- the stigma these deaths attract, which may also pathologise or blame the families, devaluing their grief and depriving them of social support;
- remembering and memorialising a life and death defined by alcohol and/or drugs and that the bereaved and/or others, may consider unfulfilled
One important consequence of stigma is that these bereaved people are often poorly served and insensitively treated by the services they come into contact with. Since substance related deaths may be considered suspicious or unexplained, establishing the cause of death may require investigation by the police and the coroner in England or the Procurator Fiscal in Scotland. This can involve the bereaved person in having to deal with a range of different and separate practitioners and procedures, often with little or no guidance, or coherent national or local strategy for the way organisations respond to them. .
Stage 2: Developing practice guidelines
To understand practitioners’ side of the story we held:
6 Focus groups - 4 in England and 2 in Scotland 6 to 8 participants in each (40 total). Group members came from a wide range of services, including those dealing with the death itself such as the police as well as local and national addiction and bereavement organisations and networks. Each group discussed the research findings in light of their own experiences as practitioners. Their insights into the pressures and challenges of working in a multi-agency context helped inform their key suggestions for improving how services respond.
A Working Group, chaired by practitioner Peter Cartwright. The group comprised a range of practitioners, some also bereaved, and met twice over a period of 3 months to develop guidelines based on the interview and focus group findings. Between meetings, subgroups worked together and pooled their findings at the second meeting. The chair collated these findings into a first draft of the guidelines, which were then further edited by the researchers and then externally reviewed before being launched in London on 23 June 2015.
A future stage 3: Validating and testing the practice guidelines
Subject to further funding, we will work with practitioners to:
- build flexibility into the guidelines to ensure their adaptability to different agencies and groups of bereaved people;
- pilot the guidelines in organisational settings;
- develop online resources, including written guides, films, case studies and digital resources.
Guiding and monitoring the research
The Advisory group. 6 practitioners met three times with members of the research team to provide guidance from a range of perspectives.
Practice Guideline reviewers: the research team, advisory group and working group members, professionals/practitioners from Adfam, DrugFAM, Cruse (England and Scotland), SFAD, FASS, the media.
The research team: comprising 9 members (based in both Bath and Stirling) - 2 leading investigators, 4 researchers, a family member advisor and 2 consultants.
Project outputs and impacts
As well as the outputs, the project’s impact has been maximised by including practitioners and bereaved people at every stage of the research process from project design to dissemination. The project’s main output, i.e. the practice guidelines, speak to a wide range of practitioners and services coming into contact with those bereaved through substance use.
The research findings are being disseminated as follows:
- Press releases, articles and interviews
- Project webpage
- Articles for publication in international academic and practice journals
- Conference papers
- Poster presentations
- Practice Guidelines
- A book to be published by Routledge 2017
We would like to thank all those who contributed to the research as part of the Advisory Group, the six Focus Groups, the Working Group and the Guidelines’ Reviewers.
However, special thanks go to the 106 bereaved people who so generously shared their experiences with us for the benefit of the research and its main output, the practice guidelines.