1. Adults Bereaved Through Substance Use Introduction to research project and guidelines

2. The research project The project was funded by the ESRC and conducted by researchers at the Universities of Bath & Stirling 2012-2015 http://www.bath.ac.uk/cdas/research/understanding-those- bereaved-through-substance-misuse/

3. Overview 1. Phase 1: 100 interviews with 106 adults bereaved through substance use. 2. Phase 2: 6 focus groups with 40 professionals and bereaved people. 3. Phase 3: A working group of 12 professionals and bereaved people produced practice guidelines.

4. Phase 1: 100 interviews with bereaved adults o Interviewees talked about their experiences of loss & support. Female 79, Male 27 (ages 22-75). 12 in treatment; 9 in recovery. o The deaths: M 79, F 23 (ages 16-84). Mainly alcohol and/or opiates, incl alcohol-related illness, overdose, suicide, murder. o Time since death: ave 8 yrs (1 month to 30+ yrs) o Relationship to deceased: o 56 parents (incl some couples interviewed together) o 21 children o 13 spouses/partners (incl ex’s & 1 LGBT) o 13 siblings (incl step-sibs) o 6 friends, 3 nieces o Interviewees & deceased were mainly white British

5. Phase 1: Findings - Living with substance use The bereavement typically came on top of the stress of living with the person’s substance use, often over many years. Addicted families have been bereaved for a very long time, they lost that person a long time ago...and so they have been grieving for a very long time (Mother)

6. Phase 1: Findings – Official processes Official processes immediately following the death were experienced in a range of ways. We were just part of the process, we weren’t a bereaved family (Father) The detectives were very nice. I didn’t feel they were being judgemental or anything towards me or [him], they were very sorry about his death (Mother)

7. Phase 1: Findings - Stigma Interviewees were acutely aware of stigma (actual, perceived, & self-stigma) attaching to them as well as to the deceased, and felt they had to respond to this. ‘Unemployed Man Dies of Drug Overdose’.... You’re not getting the chance to go out and say to them, ‘look that’s not really how it was’ (Couple) I’ve always talked about [my son’s] drug problem, I have never shoved it under the carpet....it’s in our life, it’s part of who we are now (Father)

8. Phase 1: Findings - Memory Grief could entail active choices about: how to remember the deceased dealing with anger at them finding comfort in a medical model of addiction which reduced the sense of guilt I didn’t want her death to be defined by her addiction (Brother) There are so many bad memories that you actually forget any good memories (Mother) I was helped to realise it wasn’t my fault, it wasn’t my fault that she drank, to see alcoholism as a disease (Daughter)

9. Phase 1: Findings – Support Formal structures of support were often lacking: If it’s a murder then there would be a family liaison officer, if it was an accident then there might be victim support. But there was nothing at all (Mother). Professionals could show more empathy: The [police] seemed to have a significant lack of awareness of what is must be like for a family (Father)

10. Phase 1: Findings - overall Responses were immensely varied - there is no stereotypical response. So support should be flexible and individualised.

11. Phase 2: Six focus groups 2 Scottish groups 4 English groups Informed by findings from Phase 1 Enabled professionals and service users together to explore what kinds of support are effective.

12. The bereavement support map The map (next slide) is based on what interviewees & focus group members said about who they were in touch with and/or who they turned to for help or support. The map depicts 40+ kinds of organisations / practitioners. This shows: how confusing it can be for bereaved people and practitioners to know where to look for support the challenges of joined-up working a need for specific guidelines for different practitioner groups?

14. Phase 3: Practitioner Guidelines 1. Developed by practitioners for practitioners. 2. Not specifically for bereaved people. 3. Generic. Think about the support map: There may be extra things for some professions or organisations to consider. 4. Resources section for more information.

15. Guidelines: 5 key messages 1. Show kindness and compassion. 2. Language is important. 3. Every bereaved person is an individual. 4. Everyone can make a contribution. 5. Working together.