Substance misuse and traumatic grief

This report is based on research findings and support recommendations presented by expert speaker Lorna Templeton (Bristol) at a Sudden ‘Meet the Expert’ webinar held in November 2016.

Introduction

Substance misuse and traumatic grief, and the effect they have on bereaved families, are important issues that remain under-researched. Tragically, in England and Wales alone, 2,479[1] deaths were attributed to illegal drug misuse in 2015, but little work has been carried out to consider the impact that this often stigmatised form of bereavement has on surviving friends, families and colleagues.

Through Brake’s work supporting victims of road crashes, we are also aware of the relationship between sudden, traumatic bereavement and future misuse of substances and alcohol.

This issue was also identified by the 2011 Louise Casey ‘Review into the Needs of Families Bereaved by Homicide’ report, which found that 5% of interviewees who had been bereaved by homicide, and 8% of bereaved family members, reported that they had misused substances following their bereavement.[2] Further studies have identified the potential for the traumatic loss of a friend or family member to lead to future substance misuse.[3] However, overall, this is another area where research has been limited.

This event report will firstly consider the support needs of families who have been affected by a loved one’s substance or alcohol misuse, and will then give an overview of the impact of bereavement through substance use.

1. Supporting family members who have been affected by substance misuse

Why is it important to think about and support family members who have been affected by a loved one’s drug and alcohol use?

Historically, attitudes to families affected by a loved one’s substance use have been very negative. Often, family dysfunction has been blamed, and there has generally been a failure to engage with family members and to understand their personal experiences. Interventions have tended to focus primarily on aiding recovery, rather than considering the needs of the wider family.

The sheer scale of this issue also makes support essential – alcohol and substance misuse issues are widespread. A growing number of people are affected by a loved one’s drug or alcohol usage, which can have a traumatic ripple effect.

In the UK alone, there were 8,697 deaths related to alcohol in 2014, and alcohol-related deaths rose by 13% between 2004 and 2014. [4] Furthermore, the number of deaths related to drug misuse in England and Wales have reached its highest level since 1993, when the recording of comparable began.[5] These figures give only an indication of how many people might be affected by such deaths.

Further research into the experiences of families affected by substance misuse is essential to ensure that organisations and policy-makers can best support these groups.

The effect of addiction on family members

Although Lorna and her colleagues’ research has taken place in a range of settings, cultures and countries, they have identified that many people report similar core experiences when talking about a family member’s addiction.

The main core experiences identified are:

Individuals suffering from substance and/or alcohol addiction commonly report co-existing problems, such as mental health issues
Families who are affected by a loved one’s addiction often also report challenges relating to domestic abuse
Relationship breakdowns and other significant family problems are common. Substance misuse can lead to a huge amount of strain, stress and worry for an affected family
A range of negative emotions are reported by family members; particularly shame, guilt, anger, despair, confusion and hopelessness
Isolation is very common, frequently as a result of stigma. Without seeking support for themselves, families often struggle and face difficulties. Unfortunately, information about where families can seek help and support is often limited.

The effect of substance misuse on children

There has been a great deal of research into the effects of a parent’s or relative’s substance misuse on children; findings from this research have identified that children will often experience many of the same symptoms as adults.

Common findings from research into the experiences of children identified:

Children affected often say that they are living in a very unpredictable environment. Issues such as isolation are common; emotions such as fear are regularly reported.
Children may be disproportionately affected by families seeking to keep an addiction secret. This may prevent a child from getting professional support.
Like adults, children may experience a significant feeling of loss. Divorce, separation and the breakdown of other relationships can have a major effect on children. In situations where one, or both, parents are suffering from substance misuse issues, absent, inconsistent or neglectful parenting may present a challenge.
The breakdown of family relationships can lead to children being expected to take on the role of carer, for either a parent or siblings. This can significantly impede a child’s development.
There is a greater risk of children developing a range of issues in later life, particularly relating to substance or alcohol misuse. Children may also experience mental health or behavioural problems.
Children may blame themselves for problems in the family – in some cases they may have been told that that they are responsible for the issue.

Are all children equally affected by a family member’s addiction?

A growing body of research has highlighted that not all children are equally affected by a relative’s substance misuse. There has been increased recognition of a set of protective factors and processes, both at individual, familial and environmental levels, that can help support a child and improve their sense of ‘resilience’. Whilst it is vital that all children are still offered professional support, identifying these protective factors has increasingly become a part of interventions.

Protective factors can include:

The presence of a stable adult figure, particularly if at least one parent is not misusing substances. A secure, supportive family environment is particularly beneficial.
Developing a safe and close bond with an adult with a caring capacity.
A positive wider support network; this may include a child’s peers.
The child’s personality and character traits.
Contextual factors, for example if the period of substance misuse is short term or if the parent or relative with the substance misuse issue is undergoing rehabilitation.

These protective factors allow a child to develop an increased ability to cope with change. By developing their confidence and self-efficacy, children will grow a wide and strong range of coping responses, problem solving abilities and other mechanisms to enhance their resilience.

The Stress-Strain-Coping-Support (SSCS) model

The Stress-Strain-Coping-Support (SSCS) model[6] has been developed through primary research with family members, and is a unique way of describing how families are affected by substance misuse. Whereas other models covering substance misuse have generally assumed familial dysfunction, the SSCS model identifies that families affected by substance misuse experience common stressful events, and may suffer physical and psychological health issues. The model also avoids stigmatising terms, such as enabling, dysfunctional and co-dependent. In its simplest form, this model identifies the stresses and strains that families often experience.[7]

The SSCS model also recognises that although families may experience significant stress, both stress and levels of strain can be mediated by the following factors:

The quality, amount and availability of information available to a family. Access to clear information is very important.
How a family member responds to (copes with) the dilemmas that they are facing.
High-quality social support can mitigate a lot of stress and challenges for a family. It can be very important to a family seeking to address stigma and receive professional support.

The 5-Step Method

The 5-Step Method is a widely commended evidence-based intervention, developed as a result of research undertaken by Lorna and her colleagues. It has been recommended by the National Institute for Health and Care Excellence (NICE), and is widely used throughout the UK. A version aimed for children, ‘Steps to Cope’, has been introduced in Northern Ireland. It has also been translated and adopted by various groups outside of the UK.

The 5-Step Method is based on evidence from primary research with family members, and on the SSCS model, which was developed to describe those experiences. The five steps to the intervention should be delivered in the following order, although the number, frequency and length of intervention sessions can vary:

Step 1: Practitioners should take time to listen in a non-judgemental way to the experiences and concerns of family members. It is important that people are able to express and explore their concerns, in a reassuring and positive environment.

Step 2: The family should be given practical, relevant, specific and targeted information. While the usual content of this would be related to alcohol and drugs, it may be beneficial for this to be extended more widely, to cover things such as mental health issues, or general, practical guidance around welfare and housing.

Step 3: Explore how the family members cope, the coping responses that they use, and the alternatives that they wish to consider.

Step 4: Examine the support network that the family has in place, and any social support they may be receiving. Observations from this, and acknowledgment of any potential gaps in social support, can then be used to identify additional support that could be developed or accessed.

Step 5: With the consent of the family, discuss and explore any further or additional needs. This process could involve signposting, or referrals, to outside agencies that can provide specialist support. This stage also provides opportunity for consideration of whether others within the family, particularly children or wider family members, could benefit from additional support.

The 5-Step Method is person centred, and aims to develop and empower through developing building blocks, without being a directive form of intervention. It is usually delivered as a 1:1 intervention, but self-help and group variations have been used.

Evaluation of the intervention has included a randomised controlled trial in primary care (with follow-up to 12 months) and a number of other studies. Together, there is substantial evidence of the positive impact the method can have on family members. By successfully and properly implementing the method, the stress and strain experienced by family members, and the overall family burden, can be decreased.[8]

The Steps to Cope intervention

The Steps to Cope intervention has been adapted from the 5-Step Method, to assist children affected by a relative’s substance use. It has been introduced in Northern Ireland, and initial feedback has been very positive.[9]

Future for the 5-Step Method

The 5-Step programme of work is developing in a number of ways, and international usage of the model is beginning to take off. For example, there is a version for gambling and also translated versions of key materials in some countries.

2. Supporting families bereaved by substance use

Why is it important to support families who have been bereaved by substance use?

The answers to this are very similar to the answers to the earlier question: ‘Why is it important that we think about and support family members who have been affected by a loved one’s drug and alcohol use?’ These include:

There has been very limited research into this area.
Pre-existing research has identified these as ‘special deaths’. Similarities can be recognised in the experiences of people who have been bereaved by suicide or murder. These shared experiences relate through both the circumstances of the death, but also levels of stigma and disenfranchised grief.
People bereaved through substance use are poorly understood, marginalised and isolated. Historically, there has been a lack of support for these people, and limited awareness of their needs.
The number of substance use related deaths are rising in the UK. Qualitative data has also highlighted the increasing difficulty in accessing services required to support those bereaved through addiction.

Bereavement through substance use: research

From 2012 to 2015, Lorna was part of a research team that undertook a study of adults bereaved through substance use. The research was carried out in Scotland and South West England, with 100 interviews undertaken with 106 adults, all of whom had been bereaved through substance use. The majority of interviewees were female – in part this may reflect the gender imbalance in deaths caused by alcohol and substance use.[10] Previous research into substance misuse has tended to focus on parents, siblings and partners; this study attempted to broaden this where possible, including friends and wider family members.

Overview of findings from this research

This study highlighted that people bereaved through substance use often had a shared, core experience, but key differences were also identified. Qualitative data showed that experiences prior to the death have a major impact on the impact of the bereavement. The research also highlighted the variation in engagement levels of substance users with support services; however, it was clear that many individuals had not received support prior to their death.

Key challenges

The following key challenges were identified from the bereavement through substance use study.

Relapses

In some instances, the deceased individual had recently relapsed into substance use. In many cases, this was unknown to the bereaved relatives, who were under the impression that their loved one had moved on positively from their substance issues.

Research has highlighted that the risk of overdose is particularly high following extended periods of abstinence. Families who believe that a relative’s substance use is decreasing can be particularly devastated in such circumstances.[11]

Trauma, and cause of death

Many deaths from substance use involved some additional form of trauma, with the cause of death often violent or unexpected. Although the majority of deaths were sudden, some were more expected, particularly in cases where alcohol use had led to long-term health issues.

Causes of death therefore included overdoses, serious injuries, road crashes, murder and suicide. Some cases involved deaths that had occurred abroad, adding an additional layer or complication and stress to the bereaved family and friends.

Wider challenges

Interviewees also reported that the deceased or their family may have been experiencing a wider range of problems, such as mental health issues, further complicating their grief and bereavement. Some also said that they had witnessed previous overdose or suicide attempts by the deceased, impacting on the trauma they experienced prior to the bereavement. Some interviewees had been present during resuscitation attempts at the time of the death.

‘Living bereavement’

An additional challenge reported was that knowledge of the deceased’s substance use prior to the death meant that family members had often been living with the prospect of death for an extended period of time. Many of those interviewed reported a pre-existing sense of loss before the death; the phrase ‘living bereavement’ was used by some. These pre-existing factors had a major impact on the response of participants to the death itself.

Location of the death

In a number of cases, the deceased had died alone, or been found in a public place. A sense that deaths often occurred without dignity, peace or privacy was common. A number of organisations have reported that many overdoses occur in public,[12] and witnessing a substance misuse related death can be very traumatic. Friends and family are the most likely to witness an overdose,[13] which can often be violent and distressing to watch; in some cases the deceased may experience psychosis. Because it is likely that the emergency services will attend the scene, friends and family may also witness upsetting attempts at resuscitation. However, these experiences were countered by a number of deaths which took place in hospital and of deaths where the interviewee (and/or other relatives) was able to be with the deceased when they died.

Stigma

For people who have been bereaved by substance use, stigma can be a major challenge. Stigma can come from many groups and locations, including family, friends and communities. Dealing with the media, and the public portrayal of the deceased, can also be very challenging for a bereaved family. Unfortunately, stigma can also come through relationships with practitioners and support services, and can prevent families from seeking the support they may require, intensifying the impact of grief.

The study reinforced findings from previous research, which have identified that families may seek to hide or misrepresent the causes of death, to avoid public reaction and stigma.[14] Reporting a death to friends, neighbours or even the deceased’s colleagues can be very difficult and distressing.[15]

Attitudes towards the bereavement may also differ within a family, with the potential for members to approach the death in very different ways. Whilst a number of studies have highlighted that stigma can come from a community’s response to a bereavement, shame and stigma can also come within the family.

Grieving

Alongside the prevalence of stigma, a number of other factors can complicate the mourning process. Research has highlighted bereavement through substance or alcohol misuse as ‘special deaths’, due to the prevalence of disenfranchised grief and high levels of trauma associated.[16] This can be particularly problematic in cases where there are witnesses to the death.

Factors that affect grieving

Various factors can affect the grief experience: families may not have been aware of the substance use prior to the death, may have lost contact with the deceased or may suffer from their own substance or alcohol issues. Families who were unaware of the substance use can face particular challenges, and, in such situations, may feel responsibility for the death, or guilt that they were unable to prevent it.[17]

‘Spoiled identity’

Surviving families or friends may also find it hard to remember the deceased positively, especially following revelations about their substance use. This can lead to a perception of a ‘spoiled identity’,[18] where the family finds it difficult to comprehend previously unknown characteristics. In some cases interviewees found themselves ‘fighting’ to have their loved one viewed in a positive light because of others (both within and external to the family) who held negative views of the person who died usually through a narrow focus on them as a ‘user’.

Challenges to family relationships

The discovery of the deceased’s substance use can lead to the breakdown of relationships within a family, making the bereavement even more challenging. Guilt or shame can also complicate the grieving process in cases where family or friends are suffering from their own alcohol or substance misuse issues, particularly if they feel responsible for introducing the deceased to alcohol or substances. However, research[19] has also highlighted that some families report a sense of relief following the bereavement, with a sense that their loved one had now been released from their problems and is at peace; in some cases the interviewee also reported being at peace.

Conclusions

What is helpful to people who have been bereaved through substance use?

Overall, the bereavement through substance use study found that interviewees had a very mixed experience of the help and support that they received from a wide range of others – professionals, families, friends and colleagues. Unfortunately, there were very many examples of poor and unhelpful responses which lacked thought and compassion. However, there were also examples of good support although overall the study highlighted a general lack of support and understanding for this group of bereaved adults. Some of the highlights from this area of the study included:

It is important that the emergency services and other professionals are knowledgeable about the details and cause of the death, and able to present clear information to a family. Attempts by professionals to avoid stereotyping and to take extra care with a family, have been reported as being highly appreciated.[20]
The processes following a sudden and unexpected bereavement can be very complicated, and any support that professionals can offer during this period can be very helpful.
It is important that professionals are aware that a death from substance use could be the result either of a one-off experiment, or prolonged addiction.
Language can be vital. Avoiding phrases with negative connotations such as ‘junkie’ or ‘addict’ is important; media representation should seek to ensure that individuals are accurately represented, and not just portrayed as having substance misuse issues.[21]
Framing serious substance use (addiction) as a ‘disease’ can be beneficial for some family members, and helps to break down stigma, guilt and shame.[22]
Having pre-existing knowledge about the nature of substance misuse, and understanding about associated psychological factors and issues can also be very helpful.

Following their research, the bereavement through substance use project published best practice guidelines for any professional working with people bereaved through substance use.

The guidelines contain five key messages:

Show kindness and compassion
Language is important
Every bereaved person is an individual
Everyone can make a contribution
The importance of working together.

The full practice guidelines can be accessed free of charge online here: http://rebrand.ly/bereavementproject

About Lorna Templeton

Lorna has over 20 years’ experience of research in the fields of addiction and mental health, and has published a number of book chapters and journal articles on these areas. Lorna has worked as an independent research consultant since 2010 having previously worked for the Avon and Wiltshire Mental Health Partnership NHS Trust (at the Bath Mental Health Research & Development Unit) and the National Addiction Centre in London. Lorna is the Trustee of two charities in the sector – Adfam and AFINet.

References

[1] Office for National Statistics. 2016. Deaths Related to Drug Poisoning in England and Wales: 2015 Registrations. [Online]. [Accessed 06/06/17]. Available from: http://ow.ly/TNfV30cmddD

[2] Casey, L. 2011. Review into the Needs of Families Bereaved by Homicide. [Online]. [Accessed 15/11/16]. Available from: www.justice.gov.uk/downloads/news/press-releases/victims-com/review-needs-of-families-bereaved-by-homicide.pdf

[3] Horton, E. et al. 2016. Premature, Untimely, and Traumatic Death of Family Members, and Mental Health Disorders among Inpatient Substance Users. Illness, Crisis and Loss. [Online]. ?, ?, pp. 1-19. [Accessed 15/11/16]. Available from: http://icl.sagepub.com/content/early/2016/03/15/1054137316638078.abstract

[4] ONS. 2016. Alcohol Related Deaths in the United Kingdom: Registered in 2014. [Online]. [Accessed 09/11/2016]. Available from: https://bit.ly/32XIVPi

[5] NHS. 2016. Statistics on Drugs Misuse: England, 2016 [NS]. [Online]. [Accessed 08/11/2016]. Available from: http://content.digital.nhs.uk/catalogue/PUB21159.

[6] Orford, J. et al. 2005. Family Members of Relatives with Alcohol, Drug and Gambling Problems: a Set of Standardized Questionnaires for Assessing Stress, Coping and Strain. Addiction [Online]. 100 (11), pp. 1611-1624. [Accessed 18/11/16]. Available from: http://onlinelibrary.wiley.com/wol1/doi/10.1111/j.1360-0443.2005.01178.x/abstract

[7] Orford, J. et al. 2010. Family Members Affected by a Close Relative’s Addiction: The Stress-Strain-Coping-Support Model. Drugs: Education, Prevention and Policy [Online]. 17 (S1), pp. 36-43. [Accessed 10/11/2016]. Available from: www.tandfonline.com/doi/abs/10.3109/09687637.2010.514801

[8] Orford, J. et al. 2007. The 5-Step Family Intervention in Primary Care: II. The Views of Primary Healthcare Professionals. Drugs: Education, Prevention and Policy. [Online]. 14 (2), pp. 117-135. [Accessed 11/11/2016]. Available from: www.tandfonline.com/doi/abs/10.1080/09687630600997477

[9] Templeton, L. and Sipler, E. 2014. Helping children with the Steps to Cope intervention. Drugs and Alcohol Today. [Online]. 14 (3), pp. 126-136. [Accessed 11/11/2016]. Available from: www.emeraldinsight.com/doi/pdfplus/10.1108/DAT-03-2014-0015

[10] National Institute on Alcohol Abuse and Alcoholism. 2016. Alcohol Facts and Statistics. [Online]. [Accessed 11/11/2016]. Available from: www.niaaa.nih.gov/alcohol-health/overview-alcohol-consumption/alcohol-facts-and-statistics

[11] Valentine, C. et al. 2016. Bereavement Following Substance Misuse: A Disenfranchised Grief. Journal of Death and Dying. [Online]. 72 (4), pp. 283-301. [Accessed 11/11/2016]. Available from: http://opus.bath.ac.uk/39643/

[12] The Scottish Government. 2016. Reducing Drug Users’ Risk of Overdose. [Online]. [Accessed 15/11/2016]. Available from: www2.gov.scot/Resource/Doc/243164/0067668.pdf

[13] WHO. 2014. Information Sheet on Opioid Overdose. [Online]. [Accessed 11/11/2016]. Available from: www.who.int/substance_abuse/information-sheet/en/

[14] Valentine, C. et al. 2016. Bereavement Following Substance Misuse: A Disenfranchised Grief. Journal of Death and Dying. [Online]. 72 (4), pp. 283-301. [Accessed 11/11/2016]. Available from: http://opus.bath.ac.uk/39643/

[15] The Cambridge Centre. 2016. A Drug and Alcohol Bereavement Guide: Support for Families, Carers and Friends. [Online]. [Accessed 11/11/2016].

[16] Guy, P. and Holloway, M. 2007. Drug Related Deaths and the ‘Special Deaths’ of Late Modernity. Sociology. [Online]. 41 (1), pp. 83-96. [Accessed 14/11/2016]. Available from: http://soc.sagepub.com/content/41/1/83.abstract

[17] Da Silva, E. et al. 2007. Death by Drug Overdose: Impact on Families. Journal of Psychoactive Drugs. [Online]. 39 (3), pp. 301-306. [Accessed 14/11/2016]. Available from: www.tandfonline.com/doi/abs/10.1080/02791072.2007.10400618

[18] Guy, P. 2004. Bereavement through Drug Use: Messages from Research. Practice. [Online]. 16 (1), pp. 43-54. [Accessed 14/11/16]. Available from: www.tandfonline.com/doi/pdf/10.1080/0950315042000254956?

[19] Templeton, L. et al. 2016. Bereavement through Substance Use: Findings from an Interview Study with Adults in England and Scotland. Addiction Research & Theory. [Online]. 24 (5), pp. 341-354. [Accessed 18/11/16]. Available from: www.tandfonline.com/doi/abs/10.3109/16066359.2016.1153632

[20] Walter, T. et al. 2015. Compassion or Stigma? How Adults Bereaved by Alcohol or Drugs Experience Services. Health and Social Care in the Community. [Online]. [Accessed 15/11/16]. Available from: http://onlinelibrary.wiley.com/doi/10.1111/hsc.12273/epdf

[21] Guy, P. 2004. Bereavement through Drug Use: Messages from Research. Practice. [Online]. 16 (1), pp. 43-54. [Accessed 14/11/16]. Available from: www.tandfonline.com/doi/pdf/10.1080/0950315042000254956?

[22] Ibid.