How do families who have been bereaved by substance use, use their experience to advocate for drug policy change and how does this affect them personally?

Abstract

Background: Drug deaths in England and Wales are the highest they have been since records began. It is estimated that 275,896 adults in the United Kingdom are in touch with drug and alcohol services. It is thought that for every person who dies from drug use there will be ten close family or friends who grieve. Some people who have been bereaved by drug use their experience to campaign, or advocate, for drug policy change in the hopes to change laws and improve stigma for drug users and their families. There is sparse research on if campaigning work helps with their grief. There is also little research on barriers these campaigners feel they face.

Methods: An exploratory qualitative methodology using a phenomenological approach was the approach taken for this study. Semi structured online interviews were used to collected data. Purposeful sampling was used for this study and seven participants took part. Interviews were transcribed and analysed using thematic analysis.

Results: Findings showed that families who had been bereaved by drug use although did not think campaigning helped explicitly with grief, did express that it gave them a focus. Participants also expressed that campaigning gave them meaning and felt that their message would help reduce drug deaths. Campaigning gave all the participants a sense of community and improved opportunities for them to meet people who had similar experiences which was deemed important to help cope with their grief.

Conclusion: Barriers to campaigning found in this study were lack of support from family and friends, stigma, cost, and it being traumatic to discuss death frequently. All participants felt that lived experience was as important, or more important, than professional opinion alone.