Understanding and responding to those bereaved through their family members' substance misuse
Lead Research Organisation:
University of Bath
Department Name: Social and Policy Sciences
Abstract
By investigating experiences and concerns of family members bereaved by substance misuse, this two-phase study will develop, test and validate guidelines to assist practitioners in supporting this group. At a time when substance misuse related deaths are increasing and support for bereaved families lacking, it will address a significant gap in understanding and addressing the needs of this group. This will be achieved through in-depth interviews with bereaved family members and consultation with policy-makers and practitioners in South West England and the West of Scotland. Based in the Centre for Death and Society at the University of Bath, the study will involve collaboration with researchers from the Universities of Stirling and Glasgow, with expertise in addiction studies, and include a bereaved family member as part of the Research Team. This collaboration will provide access to academics, policymakers, practitioners and family members to ensure that the study is conducted ethically, informed by practice and findings have maximum impact. The use of two study locations will increase representativeness. It is timely in view of a new Department of Health work programme on bereavement and increased attention being given to families in national drug and alcohol strategies.
Whilst much is known about the impact of substance misuse on families across the globe, little research has explored the experiences of family members whose relative has died through substance misuse, The only UK studies to focus on bereavement through drug use, have highlighted the lack of guidance for practitioners (Guy, 2004). A recent report suggested 1.5 million adult family members in the UK are affected by the illegal drug misuse of a relative. Though alcohol was not included, the numbers of families affected are believed to be even higher because alcohol misuse is a greater problem. Across the UK in 2008 there were 9,031 identified alcohol-related deaths (ONS, 2010) and 3,442 identified drug-related deaths reported to coroners (NPSAD, 2009). Death rates tend to be higher in drug and alcohol misusing populations than the general population, more likely to be sudden, related to overdose or suicide and associated with shorter life expectancies. Many family members will have been seriously affected by their relative's substance misuse, including worrying that their relative may die. Many will ultimately have suffered bereavement. Studies of those bereaved by other marginalised deaths, such as murder, suicide or AIDS, have highlighted that grief may be compounded by social and moral stigma and coping with disturbing memories.
With ethical approval from the Universities of Bath, Stirling and Glasgow, up to 50 bereaved family members from each study site: South West England and the West of Scotland, will be recruited from a range of sources to obtain a varied sample that will enable comparisons to be made within and between the two sites. Those who participate will be interviewed at length and on their own, with interviews undertaken sensitively and support services made available if needed. Interviewing will encourage participants to introduce their own topics of concern so as to develop theory that reflects their own experiences and meanings. Data will be analysed alongside subsequent interviewing, so that interviewing and analysis inform each other, a particularly effective approach in areas where little research exists. In addition to theory development, findings will inform development, testing and validating of new practice guidelines in consultation with policy-makers, practitioners and bereaved people.
Findings will raise awareness of issues faced by this important but neglected group of bereaved individuals and promote evidence-based practice through being widely disseminated via conferences and publications and shared with a range of interested people and organisations, including research participants and other bereaved family members.
Whilst much is known about the impact of substance misuse on families across the globe, little research has explored the experiences of family members whose relative has died through substance misuse, The only UK studies to focus on bereavement through drug use, have highlighted the lack of guidance for practitioners (Guy, 2004). A recent report suggested 1.5 million adult family members in the UK are affected by the illegal drug misuse of a relative. Though alcohol was not included, the numbers of families affected are believed to be even higher because alcohol misuse is a greater problem. Across the UK in 2008 there were 9,031 identified alcohol-related deaths (ONS, 2010) and 3,442 identified drug-related deaths reported to coroners (NPSAD, 2009). Death rates tend to be higher in drug and alcohol misusing populations than the general population, more likely to be sudden, related to overdose or suicide and associated with shorter life expectancies. Many family members will have been seriously affected by their relative's substance misuse, including worrying that their relative may die. Many will ultimately have suffered bereavement. Studies of those bereaved by other marginalised deaths, such as murder, suicide or AIDS, have highlighted that grief may be compounded by social and moral stigma and coping with disturbing memories.
With ethical approval from the Universities of Bath, Stirling and Glasgow, up to 50 bereaved family members from each study site: South West England and the West of Scotland, will be recruited from a range of sources to obtain a varied sample that will enable comparisons to be made within and between the two sites. Those who participate will be interviewed at length and on their own, with interviews undertaken sensitively and support services made available if needed. Interviewing will encourage participants to introduce their own topics of concern so as to develop theory that reflects their own experiences and meanings. Data will be analysed alongside subsequent interviewing, so that interviewing and analysis inform each other, a particularly effective approach in areas where little research exists. In addition to theory development, findings will inform development, testing and validating of new practice guidelines in consultation with policy-makers, practitioners and bereaved people.
Findings will raise awareness of issues faced by this important but neglected group of bereaved individuals and promote evidence-based practice through being widely disseminated via conferences and publications and shared with a range of interested people and organisations, including research participants and other bereaved family members.
Planned Impact
Through a combination of bereavement and addiction studies expertise involving three leading universities, Bath, Stirling and Glasgow, this research is uniquely placed to contribute to knowledge and benefit academics and researchers from a wide range of disciplines. This will be achieved through contributing to theory development in an under-researched area; research practice in coping with methodological and ethical challenges of researching sensitive topics; understanding both the role and implications of social and cultural diversity within a society and commonalities in experiences of this type of bereavement that have a global application.
This research, by addressing two of the ESRC's strategic priorities, i.e. informing interventions and contributing to a fair society, will have a major impact on the following groups and individuals from the academic and non-academic community:
1. Practitioners, commissioners and key stakeholders in a range of fields
The knowledge exchange between academics and practitioners that will be fostered by this research, particularly in developing, testing and validating practice guidelines, which are expressly needed (see letters of support), will maximise impact in relation to a wide range of professionals involved with commissioning, managing and delivering services to families bereaved as a result of relatives' substance misuse. These include: drug and alcohol workers and the facilitators of support or self-help groups for families affected by a relative's substance misuse; bereavement and health care practitioners such as social workers, clinical psychologists, bereavement counsellors, palliative care nurses, oncologists, doctors, clergy, funeral directors; national organisations and networks e.g. Adfam (families affected by addiction), Drugfam, SFAD (Scottish Families affected by Drugs), Cruse and the Bereavement Services Association, the Federation of Drug and Alcohol Professionals, and the Dying Matters Coalition. All these groups will gain greater understanding of the impact on family members of the substance misuse-related death of a relative and what their specific support needs are. This new knowledge will directly inform service delivery and policy for this area.
2. Service users and families
The research will engage and impact on those who participate in the study through providing them with the opportunity to talk about things they may not have had the chance to talk about before. Furthermore, these participants will know that there has been little research done in this area and that they are helping fill a gap in knowledge, which will be used to raise awareness, enhance understanding and inform guidelines to enable support to be made available. In addition some participants will be directly involved in developing, testing and validating the practice guidelines. The interventions that these guidelines will inform will ultimately impact on the wider group of families as end users.
3. Students and those continuing professional development
This work will inform the teaching of social science courses, i.e. sociology, social policy, social work and health and illness, at each of the Universities (and at other universities), for example, in applying theory to specific social issues, such as marginalised and vulnerable groups, death and society, addiction, research methodology and ethics in relation to sensitive topics etc. and has potential to be incorporated into professional learning courses of disciplines affected by this research. At the University of Bath it will inform Foundation Degree in Funeral Services' units; at the University of Stirling, CPD units for families and substance misuse; and at the University of Glasgow, taught postgraduate units for the Drugs and Alcohol studies' programme. The research will also inform bereavement and addiction training programmes, such as those provided by Cruse, ADFAM and Drugfam.
(see pathways to impact)
This research, by addressing two of the ESRC's strategic priorities, i.e. informing interventions and contributing to a fair society, will have a major impact on the following groups and individuals from the academic and non-academic community:
1. Practitioners, commissioners and key stakeholders in a range of fields
The knowledge exchange between academics and practitioners that will be fostered by this research, particularly in developing, testing and validating practice guidelines, which are expressly needed (see letters of support), will maximise impact in relation to a wide range of professionals involved with commissioning, managing and delivering services to families bereaved as a result of relatives' substance misuse. These include: drug and alcohol workers and the facilitators of support or self-help groups for families affected by a relative's substance misuse; bereavement and health care practitioners such as social workers, clinical psychologists, bereavement counsellors, palliative care nurses, oncologists, doctors, clergy, funeral directors; national organisations and networks e.g. Adfam (families affected by addiction), Drugfam, SFAD (Scottish Families affected by Drugs), Cruse and the Bereavement Services Association, the Federation of Drug and Alcohol Professionals, and the Dying Matters Coalition. All these groups will gain greater understanding of the impact on family members of the substance misuse-related death of a relative and what their specific support needs are. This new knowledge will directly inform service delivery and policy for this area.
2. Service users and families
The research will engage and impact on those who participate in the study through providing them with the opportunity to talk about things they may not have had the chance to talk about before. Furthermore, these participants will know that there has been little research done in this area and that they are helping fill a gap in knowledge, which will be used to raise awareness, enhance understanding and inform guidelines to enable support to be made available. In addition some participants will be directly involved in developing, testing and validating the practice guidelines. The interventions that these guidelines will inform will ultimately impact on the wider group of families as end users.
3. Students and those continuing professional development
This work will inform the teaching of social science courses, i.e. sociology, social policy, social work and health and illness, at each of the Universities (and at other universities), for example, in applying theory to specific social issues, such as marginalised and vulnerable groups, death and society, addiction, research methodology and ethics in relation to sensitive topics etc. and has potential to be incorporated into professional learning courses of disciplines affected by this research. At the University of Bath it will inform Foundation Degree in Funeral Services' units; at the University of Stirling, CPD units for families and substance misuse; and at the University of Glasgow, taught postgraduate units for the Drugs and Alcohol studies' programme. The research will also inform bereavement and addiction training programmes, such as those provided by Cruse, ADFAM and Drugfam.
(see pathways to impact)
Organisations
- University of Bath (Lead Research Organisation)
- National Association of Funeral Directors (Collaboration)
- NHS England (Collaboration)
- Bereavement Through Addiction (Collaboration)
- Broadway Lodge (Collaboration)
- California Institute of Technology (Collaboration)
- PUBLIC HEALTH ENGLAND (Collaboration)
- The Compassionate Friends (Collaboration)
- Drugfam (Collaboration)
- Alcohol Concern (Collaboration)
- Adfam (Collaboration)
- Police Scotland (Collaboration)
- MANCHESTER METROPOLITAN UNIVERSITY (Collaboration)
- Family Addiction Support Service (Collaboration)
- Coroner's Officers and Staff Association (Collaboration)
- Taconic International (Collaboration)
- Scottish Families Affected by Alcohol and Drugs (Collaboration)
- Cruse Bereavement Care (Collaboration)
Publications
Walter, T
(2015)
Compassion or Stigma? How adults bereaved by alcohol or drugs experience services
in Health and Social Care in the Community
Valentine, C.
(2016)
Drug and alcohol-related deaths: What of those left behind?
Valentine, C
(2015)
Death by drugs or alcohol: what happens to those left behind?
in The Conversation
Valentine, C
(2017)
Families Bereaved by Alcohol or Drugs: Coping and support
Valentine, C
(2015)
Why do we lack compassion for bereaved families of those who have died of alcohol or drugs?
in The Independent
Valentine, C
(2016)
Drinking Dilemmas. Space, culture and identity
Valentine C
(2015)
Creative Responses to a Drug- or Alcohol-Related Death A Sociocultural Analysis
in Illness, Crisis & Loss
Valentine C
(2016)
Death and Social Policy in Challenging Times
Valentine C
(2018)
Service failures and challenges in responding to people bereaved through drugs and alcohol: An interprofessional analysis.
in Journal of interprofessional care
Valentine C
(2016)
Bereavement Following Substance Misuse A Disenfranchised Grief
in OMEGA - Journal of Death and Dying
| Description | 1) The most important thing we have DEVELOPED is a process of engaging practitioners, from the project's conception through to after its conclusion. (By practitioner, we mean bereavement workers; anyone - police, journalists, etc - whose work brings them into contact with bereaved families; and anyone working to support substance users and their families.) i) A bereaved parent who ran an innovative support group helped us conceive the research concept and was a key member of the research team, helping us engage with practitioners throughout. ii) After completing 100 research interviews with bereaved individuals, we held six focus groups comprising 40 professionals (some of whom were also bereaved by substance use) which teased out the service implications of our interview data and revealed the value of practitioners engaging with first-hand accounts of how bereaved people experience services. iii) These implications were then handed over to a working group of 12 practitioners, chaired by a practitioner, tasked to develop practice guidelines based on our research. The Guidelines were therefore written in practitioner language, and have been both welcomed and disseminated by practitioners to an extent we had barely dared hope for. Our intention for the project to be collaborative really paid off; for example, focus group practitioners responded very constructively to learning of multiple examples of service failure, and after the project's end practitioners continue to disseminate the Guidelines and incorporate them into their own training materials. 2) Our most important FINDING is that bereavement by substance use is critically affected - for good or ill - by the mourner's experiences of services after the death. We produced a 'map' identifying over 40 services that mourners might encounter, more than in many other bereavements because of involvement by police, coroners, media and substance treatment agencies. Practitioners themselves are often unaware of how complex and fragmented the 'system' is and how confusing to those reeling under the shock of bereavement; they have worked with us to explore how to improve co-ordination and information. We also found that practitioners' attitudes and language can profoundly affect whether a bereaved person feels supported and their loss acknowledged. 3) Though grief always depends on the mourner's pre-mortem relationship to the deceased, we found extra dimensions to this in that the death may have been preceded by years or even decades of living with the person's substance use, which some described as 'a living bereavement'. This impacted how they subsequently grieved the person's death. Mourners had often felt the stigma of being associated with substance use while the deceased was alive, so were particularly vulnerable to insensitive responses in the aftermath of the death. 4) We discovered the complexity and variability of stigma. Stigma can be actual, perceived, or self-stigma. It can motivate bereaved people to challenge the stigmatisation of those living and dying with drugs and alcohol - some wrote autobiographical books, others wrote songs and produced videos, others produced education materials about substance use, others set up support services. |
| Exploitation Route | Our strategy has been to hand our findings to practitioners to develop in partnership with us. Our pathway to impact may be summarised as: Collaboration ? research ? findings ? working group ? guidelines ? dissemination. Not only have a wide range of practitioners widely and enthusiastically disseminated the Guidelines, but practitioners are also incorporating the Guidelines into their own training materials. Both the Guidelines launch in London 23.6.15 to a hundred practitioners, and a post-project gathering of agencies we convened on 5.11.15, have further catalysed different practitioner groups to co-operate in new ways. The 5.11.15 meeting agreed to set up a LinkedIn inter-practitioner group and to develop a Website bringing together resources from different agencies. As well as writing articles, the research team has contracted with Routledge to write a book Families Bereaved by Alcohol or Drugs: Experiences, Coping, Support, to be published 2017. Subsequently Jessica Kingsley, a publisher of practitioner books, approached us, and we have helped the practitioner who chaired the working group develop a proposal for a complementary book, which has been accepted by this publisher. The research team have given presentations on the projects' findings to a range of both professional and academic conferences. |
| Sectors | Communities and Social Services/Policy Healthcare |
| URL | http://www.bath.ac.uk/cdas/research/understanding-those-bereaved-through-substance-misuse/ |
| Description | While scholarly articles, blogs and conference and workshop presentations comprise outputs, our key output is our Guidelines for practitioners, launched at a well-attended conference in central London on 23 June 2015. We have been not only gratified but also amazed at the overwhelmingly positive response to the Guidelines, with practitioners both enthusing about the content and disseminating the Guidelines on to their colleagues. We distributed 2000 hard copies - mainly through conferences, workshops and other meetings - to a wide range of over 70 national and local organisations, including Cruse Bereavement Care, Adfam's regional networks of family support workers across England, NHS Scotland, Public Health England, mental health services, the Prison Service, drug and alcohol treatment providers, support services for families affected by substance use, local government, various commissioners of services, all coroners and their staff, Social Services departments etc. These and other agencies have been very grateful to receive the Guidelines and for them to be widely available. The Guidelines are also available online. It is not possible accurately to measure number of views, but project's website received 719 visits from June to August 2015 - the period in which the Guidelines were launched. At least 24 other websites provide or link to the Guidelines, including Adfam; Addiction and the Family International Network; the Coroners Officers and Staff Association; Drink and Drug News magazine; The Independent newspaper; NICE; the Probation Service; Social Care Online; and Substance Misuse Management in General Practice. Turning Point (a drug & alcohol treatment agency) added the Guidelines to their staff intranet; Alcohol Concern used the Guidelines' five key messages in an online memorial project; and Public Health England disseminated Guidelines to all Local Authority Public Health teams. A Working Group member notes that change in practice does not occur overnight and while 'learning by one's mistakes' may be an over-generalisation, developing the skills to demonstrate good practice is often an incremental process in which the Guidelines provide a useful resource. - A GP wrote to us: 'The Guidelines have been received very well; am circulating widely... It has started some valuable reflections. Very impressed with the tone, content, usefulness as a teaching tool.' - A bereavement support worker wrote: 'We have put a link to the guidelines on the website. Congratulations on an incredibly successful tangible outcome. It has been great to be involved.' - An addictions worker wrote 'The Guidelines were extremely helpful Most helpful were the key messages, particularly the first two covering kindness and compassion along with good practice and the use of language.' These last two comments are particularly gratifying as, from the start of the project, we have known that many bereavement workers find it hard to support people after a substance-related death and that addictions workers rarely provide support to families after the client has died. The Guidelines provide these workers with the tools to address this particularly difficult kind of bereavement. A number of researchers have contacted us wishing to access our dataset via the ESRC data archive. This reflects a surge of interest in this field by researchers as well as practitioners, and we are hopeful that our research will continue to exert influence through secondary analysis of our data by other researchers. |
| First Year Of Impact | 2015 |
| Sector | Communities and Social Services/Policy,Education,Healthcare |
| Impact Types | Policy & public services |
| Description | Online training course for practitioners |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Influenced training of practitioners or researchers |
| URL | http://www.bath.ac.uk/cdas/documents/Guidelines_Training_Slides.pptx |
| Description | Cruse/ADFAM |
| Organisation | Adfam |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | A complementary project is being run by the Cruse/Adfam partnership and links have been made to ensure communication between both projects. Members from each group sit on the other's advisory board and regular meetings are held between the two research teams. The teams are looking to collaborate on a follow on project. |
| Collaborator Contribution | See above |
| Impact | No outputs as a direct result at this time. Collaborative publication is planned. |
| Start Year | 2013 |
| Description | Cruse/ADFAM |
| Organisation | Cruse Bereavement Care |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | A complementary project is being run by the Cruse/Adfam partnership and links have been made to ensure communication between both projects. Members from each group sit on the other's advisory board and regular meetings are held between the two research teams. The teams are looking to collaborate on a follow on project. |
| Collaborator Contribution | See above |
| Impact | No outputs as a direct result at this time. Collaborative publication is planned. |
| Start Year | 2013 |
| Description | DACON |
| Organisation | Taconic International |
| Country | Ireland |
| Sector | Private |
| PI Contribution | DACON is the SW regional network of Adfam, a national organisation working to improve support for families affected by alcohol and drugs. Already an Adfam trustee, research team member Lorna Templeton became a member of this group in 2015. At the January 2016 meeting there was interest in our bereavement study and copies of the practice guidelines were made available to members who did not already have these. Since then, Lorna has met with a practitioner from a treatment service in Bristol who now facilitates the Bereavement Through Addiction support group. The DACON network has agreed to focus on bereavement at one of its 2016 meetings. |
| Collaborator Contribution | DACON provides a further outlet for dissemination of our findings, and a potential future research collaborator. |
| Impact | See above. |
| Start Year | 2015 |
| Description | End-of-life care for people with drink or drug issues |
| Organisation | Manchester Metropolitan University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | One of the team from the Bereaved Through Substance Use research (Templeton) is co-investigator of one of the five project strands in the End of Life Care project (Strand 4, on families, friends and carers). A key element of Strand 4 is secondary analysis of the Bereaved Through Substance Use interview transcripts (held in the ESRC Archive) and using the experiences and findings from the Bereaved Through Substance Use study to inform Strand 4 of the End of Life Care study and the study as a whole. |
| Collaborator Contribution | All 5 strands of the study contribute to our understanding of how families live with substance use and its aftermath |
| Impact | See above |
| Start Year | 2016 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | Adfam |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | Bereavement Through Addiction |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | California Institute of Technology |
| Department | NASA Spitzer Space Telescope |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | Coroner's Officers and Staff Association |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | Cruse Bereavement Care |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | Drugfam |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | National Association of Funeral Directors |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | Public Health England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | Scottish Families Affected by Alcohol and Drugs |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Network of practitioners supporting people bereaved by substance use |
| Organisation | The Compassionate Friends |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We initiated this network by calling representatives together on 5 Nov 2015. We recognised from our research, particularly the focus groups and working group, of the value of better communication between organisations and individuals working in this field. |
| Collaborator Contribution | A LinkedIn group has been formed, and a website is envisaged. |
| Impact | See above |
| Start Year | 2015 |
| Description | Working group |
| Organisation | Alcohol Concern |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Part of our research process was to convene a working group of 12 practitioners, tasked with developing the Guidelines for Practitioners. The group members clearly valued participating, and making a number of new contacts in and through the group |
| Collaborator Contribution | They devised and wrote the Guidelines for Practitioners, a key outcome of the research project. |
| Impact | "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death" http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Start Year | 2015 |
| Description | Working group |
| Organisation | Bereavement Through Addiction |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Part of our research process was to convene a working group of 12 practitioners, tasked with developing the Guidelines for Practitioners. The group members clearly valued participating, and making a number of new contacts in and through the group |
| Collaborator Contribution | They devised and wrote the Guidelines for Practitioners, a key outcome of the research project. |
| Impact | "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death" http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Start Year | 2015 |
| Description | Working group |
| Organisation | Broadway Lodge |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Part of our research process was to convene a working group of 12 practitioners, tasked with developing the Guidelines for Practitioners. The group members clearly valued participating, and making a number of new contacts in and through the group |
| Collaborator Contribution | They devised and wrote the Guidelines for Practitioners, a key outcome of the research project. |
| Impact | "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death" http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Start Year | 2015 |
| Description | Working group |
| Organisation | California Institute of Technology |
| Department | NASA Spitzer Space Telescope |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | Part of our research process was to convene a working group of 12 practitioners, tasked with developing the Guidelines for Practitioners. The group members clearly valued participating, and making a number of new contacts in and through the group |
| Collaborator Contribution | They devised and wrote the Guidelines for Practitioners, a key outcome of the research project. |
| Impact | "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death" http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Start Year | 2015 |
| Description | Working group |
| Organisation | Coroner's Officers and Staff Association |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Part of our research process was to convene a working group of 12 practitioners, tasked with developing the Guidelines for Practitioners. The group members clearly valued participating, and making a number of new contacts in and through the group |
| Collaborator Contribution | They devised and wrote the Guidelines for Practitioners, a key outcome of the research project. |
| Impact | "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death" http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Start Year | 2015 |
| Description | Working group |
| Organisation | Family Addiction Support Service |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Part of our research process was to convene a working group of 12 practitioners, tasked with developing the Guidelines for Practitioners. The group members clearly valued participating, and making a number of new contacts in and through the group |
| Collaborator Contribution | They devised and wrote the Guidelines for Practitioners, a key outcome of the research project. |
| Impact | "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death" http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Start Year | 2015 |
| Description | Working group |
| Organisation | NHS England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Part of our research process was to convene a working group of 12 practitioners, tasked with developing the Guidelines for Practitioners. The group members clearly valued participating, and making a number of new contacts in and through the group |
| Collaborator Contribution | They devised and wrote the Guidelines for Practitioners, a key outcome of the research project. |
| Impact | "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death" http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Start Year | 2015 |
| Description | Working group |
| Organisation | National Association of Funeral Directors |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Part of our research process was to convene a working group of 12 practitioners, tasked with developing the Guidelines for Practitioners. The group members clearly valued participating, and making a number of new contacts in and through the group |
| Collaborator Contribution | They devised and wrote the Guidelines for Practitioners, a key outcome of the research project. |
| Impact | "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death" http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Start Year | 2015 |
| Description | Working group |
| Organisation | Police Scotland |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Part of our research process was to convene a working group of 12 practitioners, tasked with developing the Guidelines for Practitioners. The group members clearly valued participating, and making a number of new contacts in and through the group |
| Collaborator Contribution | They devised and wrote the Guidelines for Practitioners, a key outcome of the research project. |
| Impact | "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death" http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Start Year | 2015 |
| Description | 6th Annual DrugFam Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Increased interest from those already involved tangentially with the project. Event only just taken place, so impact not yet measurable |
| Year(s) Of Engagement Activity | 2014 |
| Description | 7th Annual DrugFam Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | 40 to 50 people were present, mostly bereaved family members, but some practitioners from drug and alcohol support services and bereavement services. There was much interest in our Guidelines and bereaved people contributed written feedback on them. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.adfam.org.uk/cms/docs/drugfam_bereavement_conference_2015.pdf |
| Description | AWP Mental Health NHS Trust |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of our research findings to a mixed discipline audience of practitioners. Distribution of our Guidelines. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Alcohol Concern Cymru |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on bereavement support after a bad death for Alcohol Concern Cymru's Annual Conference. Drawing on research into substance use bereavement and suicide, sparking off question and answer session. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.bath.ac.uk/cdas/documents/bereavement_project_15/Alcohol_Concern_Bereavement_Support_slid... |
| Description | Aquarius |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation at Aquarius (non-statutory treatment service) annual conference, mixed staff audience from across the organisation (primarily Birmingham and the West Midlands). Practice guidelines also distributed. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://aquarius.org.uk/ |
| Description | BSA Drinking Dilemmas Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Type Of Presentation | paper presentation |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The paper presented attracted questions from peers who were interested in the research The BSA asked the researchers to contribute a chapter to an edited collection based on the paper presented. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Barts Bereavement Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The presenter received a letter of thanks outlining how people had been struck by the early findings of the research and were interested in learning more in the future. The letter stimulated a research paper based on the comments received from delegates. The paper, 'How people bereaved by alcohol or drugs experience compassion and stigma', is to be published by 'Health and Social Care in the Community'. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Blog by one of the research team. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.cph.org.uk/blog/bereavement-following-drug-or-alcohol-use/ |
| Description | Brake: Sudden |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 30 min webinar on the bereavement through substance use study. A range of participants, incl bereavement and other counsellors, substance use treatment service workers, funeral celebrants. Practice guidelines (pdf) made available to all attendees along with details of published papers from the study. Positive feedback, e.g. "the webinar will inform my future practice." |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.suddendeath.org/ |
| Description | British Psychological Society Faculty of Addictions |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Two posters were on display summarising the study's findings thereby raising awareness; hard copies of the study's practice guidelines were also available for people to take away. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Cruse Bereavement Care Annual National Conference workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Type Of Presentation | keynote/invited speaker |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | 'Bereavement following drug or alcohol related deaths' was a workshop delivered at the Cruse Annual Conference 2013 This workshop invited those with personal experience of drug and alcohol-related loss, and those who have worked with such clients, to share their experiences. It also reported on the early stages of the research project. The wider Cruse network became aware of the project. Relationships have since developed with the National Office and local branches |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.cruse.org.uk/conference-2013-workshops-and-seminars |
| Description | DDD Conference presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Type Of Presentation | paper presentation |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 'Integrating theory and practice: Family members bereaved by a drug and alcohol related death'. This conference presentation given by Tony Walter and Christine Valentine outlined the research and findings up to September 2013 and attracted questions and discussions afterwards. Interest in the project was high from academic colleagues, and possible future collaborations were discussed. |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.open.ac.uk/health-and-social-care/main/research/research-events/events-archive/death-dyin... |
| Description | DHI (Developing Health and Independence) annual Reach Out conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on the project at the local DHI (Developing Health and Independence) annual Reach Out conference which is focused on families. There were probably about 80 people there, a mix of families, workers/volunteers, and commissioners. The presentation was well received. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Distribution of Guidelines |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A major output of our research is "Bereaved through substance use: Guidelines for those whose work brings them into contact with adults bereaved after a drug or alcohol-related death." 2000 copies were printed, and demand for the Guidelines was voracious. Batches of the guidelines were mailed/taken to, and/or requested by, at least 75 organisations and conferences. Links to the online Guidelines have been made from, to our knowledge, 7 practitioner websites, but the actual number is almost certainly a lot higher. Many receiving the Guidelines asked for more copies to circulate to their colleagues & contacts, eg: 'I would be really pleased to be able to have a copy of the printed guidelines to be able to approach my managers and see if I can progress them in our organisation.' (funeral director) 'We have put a link to the guidelines on the website. Congratulations on an incredibly successful tangible outcome. It has been great to be involved.' (Bristol Drugs Project) 'I have utilised our many contacts has to circulate the Bereavement Guidelines to Glasgow Alcohol drug partnership, Heads of Service in Social work and addiction services, Procurator Fiscal in Glasgow, all the 3rd sector commissioned addiction services in Glasgow and that includes rehabs, Chief Inspector of Scottish Prisons, Police Scotland, GP's in Shared Care clinics in Glasgow to name but a few.' (FASS - Families Affected by Drug & Alcohol Use, Glasgow) |
| Year(s) Of Engagement Activity | 2015,2016 |
| URL | http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |
| Description | Drugs and Alcohol Today |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Conference attended by 200 drug and alcohol support workers. Our Guidelines included in conference pack. Presentation attended by 20. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.illycorp.com/wp-content/uploads/2015/09/Drugs-and-Alcohol-Today-ILEC-Conference-2015-nm1.... |
| Description | Grampian Child Bereavement Network |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentations on what we know from our research about young people bereaved by substance use. Purpose: to share information from the study to provide an evidence base for the training provided by GCBN. Evaluated very positively, leading to request to repeat at a second training day later in the year. |
| Year(s) Of Engagement Activity | 2015 |
| Description | House of Lords |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | This House of Lords event, hosted by Lord Kamlesh Patel, aimed to raise the profile and share progress of a related project on bereavement through substance use, being run by Adfam and Cruse. The member of our study team who attended is also a Trustee of Adfam, and sits on the Advisory Group of the Adfam/Cruse study, and so attended on behalf of both the bereavement through substance use study and in her Trustee capacity - and was able to take some hard copies of the bereavement practice guidelines for distribution. This provided an opportunity to raise awareness of bereavement through substance use at Government level. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Local Cruse group presentations |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Volunteers from local Cruse Bereavement Care branches attended 2 presentations on the progress and findings of the project so far, and engaged in group work to discuss how these could be used to develop best practice guidelines. The volunteers attend sessions such as these to enhance their understanding of issues around bereavement in many different circumstances, and are all trained counsellors. Engagement of local groups in the research has led to ongoing relationships between researchers and Cruse. Cruse are keen to be involved in the development and roll out of best practice guidelines in the next phase of the project. |
| Year(s) Of Engagement Activity | 2013,2014 |
| Description | New Directions in the Study of Alcohol Group annual conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation included a section on the bereavement through substance use study. A few copies of the practice guidelines were available for attendees to take away. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Newsletter on focus group findings |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | Around 150 people received an e-newsletter outlining the findings of the project focus groups to those involved in the focus groups as well as those interviewed for the project as well as stakeholders and advisory group members. Responses from those contacted indicated that the continued contact is much appreciated and contributes to their sense of 'giving back' in difficult circumstances. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Newsletters to participants |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | Around 150 people have now received two newsletters from the research team informing them of the progress of the research and our intended next steps. Recipients include all those interviewed for the project and the practitioners who have contributed at many stages to the project. A number of recipients replied with thanks that they were being kept updated as to progress, and that they felt that their stories were being heard. Many participants report that the knowledge they are helping towards better guidelines and best practice helps them with their grief. |
| Year(s) Of Engagement Activity | 2013,2014 |
| Description | Norfolk |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to a parental substance misuse learning day, a mixed discipline audience from across Norfolk of approx 150 people. Practice guidelines also distributed. |
| Year(s) Of Engagement Activity | 2008,2015 |
| Description | Open-access PowerPoint slides for educators |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | This PowerPoint presentation for Educators is freely available on the project's website |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.bath.ac.uk/cdas/documents/Project_Summary_Slides.pptx |
| Description | Open-access PowerPoint slides for trainers |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | This PowerPoint presentation for Trainers is freely available on the project's website |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.bath.ac.uk/cdas/documents/Guidelines_Training_Slides.pptx |
| Description | Print and online media |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | 49 print and online news media covered the launch of our Guidelines in June 2015. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Project final event |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | This day-long event in central London presented the project's findings and launched the Guidelines to about 100 invitees from key practitioner organisations. The interest in and uptake of the Guidelines was remarkable, exceeding our expectations and indicating the value placed in the project by all organisations in the field. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Radio interviews |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | 4 radio interviews re launch of our Guidelines, June/July 2015 |
| Year(s) Of Engagement Activity | 2015 |
| Description | Saltash, Cornwall |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to a drug-related deaths conference, a mixed discipline audience from across Cornwall and Devon or approx 150 people. Practice guidelines also distributed. |
| Year(s) Of Engagement Activity | 2015 |
| Description | St Christopher's Hospice, London |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation and group work with practitioners, including bereavement counsellors and those working for drug and alcohol support organisations. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Study of Addiction Conference - poster |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster presentation attracted huge amount of interest The poster won first prize at the conference poster competition |
| Year(s) Of Engagement Activity | 2014 |
| Description | Study of Addiction Conference - presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Postive feedback on presentation Delegates commented on the power of the data, importance of the study and need to recognise this forgotton group of people |
| Year(s) Of Engagement Activity | 2014 |
| Description | University of Bath Public Engagement Showcase |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Around 250 academics and post-graduate students attended a public engagement showcase where we displayed information about the project and were able to engage colleagues in conversation about the research and emerging outcomes. Higher awareness among colleagues of the research and possible interest in further collaboration post current project. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Working group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The working group comprised 12 members of key national practitioner organisations in the fields of substance use and bereavement. Using the project's research findings, the group took responsibility to devise and write the Guidelines for Practitioners that are a key output of the project. We considered it essential that guidelines for practitioners, even though based on academic research, should be devised and written by practitioners if they are to be any use to practitioners - the voracious appetite for the published Guidelines vindicates this. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.bath.ac.uk/cdas/documents/bereaved-through-substance-use.pdf |