Phase Four: Undertaking Research

Families and loved ones hold invaluable insights into the person who died; their history, circumstances, struggles, and the barriers they faced in accessing or engaging with support. Their perspective is often essential to understanding the full context of what happened and identifying opportunities for prevention that may not be apparent from professional records alone.

Beyond the practical value to the review, many families find participation in the process meaningful and therapeutic. Bereaved families often express that contributing to a review helps them find some purpose in their profound loss, knowing that lessons learned from their loved one’s death might prevent similar tragedies and save other lives. This can be an important part of their grieving process, providing a sense that their loved one’s death was not entirely in vain and that something positive can emerge from their pain.

However, family involvement must always be approached with sensitivity, respect, and without pressure. Participation should be voluntary, and families should be supported throughout the process with clear information about what involvement means, trauma-informed communication, and ongoing emotional support as needed.

The following guidance outlines how to approach families about participation, support them effectively throughout the review, and ensure their contribution is handled with the care and dignity they deserve, as described by family members themselves.

Pre-Engagement Considerations 

Understanding Grief Timelines and Readiness 

Acute Grief Period (0-12 months) 

• Families are often overwhelmed with anger, confusion, and intense emotional pain during the first year 

• Consider that immediate engagement may not be appropriate, as families report being “useless” and unable to coherently share their experiences 

• However, timing is highly individual - some families may be ready sooner than others 

 

Optimal Engagement Window 

• Many families report being more ready to engage meaningfully 12-24 months after their loss 

• By this time, they have often processed initial grief and may have accessed counselling support 

• Families express wanting their loved one’s story to be heard and not wanting them to become “just a statistic” 

 

Approach Methods 

Consider Open Invitation Rather Than Direct Contact 

• Use public appeals or information campaigns rather than direct outreach to unknown families 

• This allows families to self-select when they feel ready to participate 

• Reduces risk of re-traumatising families who may be unaware of alcohol’s role in the death 

• Addresses concerns about approaching families at inappropriate times 

 

When Direct Contact is Necessary 

• Ensure approach is clearly explained, sensitive, and without pressure

• Allow families adequate time to consider participation 

• Be prepared that some families may not know alcohol was a contributing factor 

 

Understanding Complex Grief and Stigma 

Recognise Unique Aspects of Addiction-Related Loss 

• Families experience “complex grief” with feelings of guilt, anger, and shame 

• There may be history of difficult relationships with services prior to death 

• Families often feel they weren’t listened to or believed by professionals 

• Consider potential trauma from previous negative experiences with healthcare systems 

 

Address the Interconnection of Mental Health and Substance Use 

• Understand that families see addiction as a mental health illness, not a choice 

• Be prepared to hear about systemic failures where mental health and addiction services work in silos 

• Recognise families’ frustration with “either/or” approaches rather than integrated care 

 

Creating Meaningful Engagement 

Ensure Families Feel Heard, Not Just Consulted 

• Avoid making the process feel like a “tick-box exercise” 

• Allocate sufficient time for families to tell their full story 

• Validate family experiences even when they differ from official records 

• Be prepared to hear criticism of services and systems 

 

Value Family Knowledge and Experience 

• Families often have detailed insights into what led to substance use and the person’s journey 

• They may have tried to engage services and can highlight system gaps 

• Their perspective on prevention and early intervention is invaluable 

 

Preparation for Difficult Conversations 

Be Ready for Complex Cases 

• Expect to hear about multiple system failures across health, social care, and criminal justice 

• Families may have experienced adversarial relationships with professionals 

• Some may have ongoing legal proceedings or complaints 

 

Professional Competence Requirements 

• Ensure reviewers have appropriate investigation and communication skills 

• Avoid defensive responses when services are criticised 

• Maintain professional boundaries while showing empathy 

 

Support and Continuity 

Link to Ongoing Support 

• Connect families with peer support groups and bereavement services 

• Consider both practical information and emotional support needs 

• Recognise that men may be particularly reluctant to seek help and may need additional encouragement 

 

Follow-through and Feedback 

• Explain clearly what will happen with the information shared 

• Provide feedback on outcomes and recommendations arising from the review 

• Offer closure conversations rather than ending abruptly after information gathering 

• Ask families what they would find helpful as next steps 

 

Key Principles 

1. Timing is individual - be flexible and responsive to family readiness 

2. Families want to prevent future deaths - frame participation as contributing to systemic improvements 

3. Listening is therapeutic - the process itself can be healing when done well 

4. Integration matters - understand the interconnected nature of mental health and substance use 

5. Follow-through is essential - families need to see meaningful outcomes from their participation 

Those who have completed previous reviews recognised that bringing everything together into one report could be overwhelming. It can also be hard to accept that you are finished after working on this for such a long period of time. Particularly when the qualitative information brings a great deal of richness to the report, it can be difficult to know when enough is enough. 

Discussing the process with other members of the project team can support with this, whilst also having a detailed timeline that includes an end-point for data collection. Attending meetings of the ADRN and using the shared Microsoft Teams space can be helpful to discuss these matters and to get peer support. 

One member of the ADRN shared that a valuable way of managing the qualitative aspect of reporting involved creating a timeline for a number of individuals within the review, which helped to track their journey through services. Considering dissemination of results, they had also presented findings from the report across two workshops, with attendees including those who attended support groups for drugs and alcohol. There is therefore always the opportunity to bring in more qualitative information after the initial report is completed, with this having a noticeable impact. 

Those who have completed alcohol death reviews recognise the significant potential that they have to make a difference and improve outcomes. They felt that these reviews were an opportunity to learn lessons and inform improvements that might help to prevent other people losing their lives in the future. 

That being said, reviews can be very demanding, both emotionally and technically. Researchers can spend significant time reading files that, by the nature of the project, often contain distressing details and extremely difficult circumstances. While technical skill is an important part of researchers’ suitability, their emotional wellbeing has to be catered for, too. 

Alcohol Focus Scotland facilitates the Alcohol Death Researchers’ Network (ADRN), which currently meets quarterly. This is a group for people directly involved in research, and functions as a forum to discuss technical challenges but also, while respecting confidentiality, the challenges of the work. This was highlighted as a positive intervention by experienced researchers, and can be accessed anytime by contacting AFS. 

Making sure data group members have the opportunity to discuss their work with colleagues in the wider review group is important too. Research can be frustrating, and the detail of some cases may present emotional challenges for staff – make sure that there are adequate line management and support structures in place for the data group. The Alcohol Death Researchers’ Network is also available for support.