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University of Bath

Understanding and responding to those bereaved through their family members' substance misuse

This research sought to understand the experiences of people bereaved through substance misuse and work with services to develop better responses.

Project activities

  • We conducted 100 interviews with 106 adults (including six couples) bereaved after the drug or alcohol-related death of a family member or other close person, 66 in England and 34 in Scotland
  • We held focus group discussions with 40 practitioners (some also bereaved) from a wide range of services
  • 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

Project rationale

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.

Project team

Researchers from the Centre for Death & 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.

Outputs

Bereaved through substance use

(2018) C.Valentine, ed. 'Families Bereaved by Alcohol or Drugs', London: Routledge.

(2017) L Templeton, C Valentine, J McKell, A Ford, R Velleman, T Walter, G Hay, L Bauld, J Hollywood. ‘Bereavement Following a Fatal Overdose: the experiences of adults in England and Wales’, Drugs: Education, Prevention and Policy 24(1), 58-66.

(2017) Walter, T., Ford, A., Templeton, L., Valentine, C., Velleman, R. 'Compassion or Stigma? How adults bereaved by alcohol or drugs experience services', Health & Social Care in the Community 25(6), 1714-1721.

(2016) L Templeton, A Ford, J McKell, C Valentine, T Walter, R Velleman, L Bauld, G Hay, J Hollywood. ‘Bereavement through substance use: findings from an interview study with adults in England and Scotland’, Addiction Research & Theory, 24(5): 341-354. DOI: 10.3109/16066359.2016.1153632.

(2016) Valentine, C., Bauld, L., Walter, T. 'Bereavement following substance misuse: A disenfranchised grief', Omega, 72(4): 283-301.

(2015) C Valentine, T Walter ‘Creative responses to a drug- or alcohol-related death: a sociocultural analysis', Illness, Crisis & Loss, 23(4): 310-322.

Funder

Economic and Social Research Council

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.

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.

Project budget

£461,000

Partners

Enquiries

cdas@bath.ac.uk 01225384515

Stage 1: Interviewing bereaved people

Recruiting participants

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

Qualitative interviewing

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 we learnt

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

Focus groups

In order to understand the practitioners’ side of the story, we held six focus groups (four in England and two in Scotland). There were six to eight 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.

Working group

we constructed 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 three 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.

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

Advisory Group

Six 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), Scottish Families Affected by Alcohol & Drugs (SFAD), Family Addiction Support Service (FASS), the media.

The research team

Nine members (based in both Bath and Stirling) comprising:

  • two leading investigators
  • four researchers
  • a family member advisor
  • two consultants