•
Understanding & responding to
adults bereaved through
substance use
Lorna Templeton
(on behalf of the project team)
SSA Annual Symposium, November 2014
The Project Team:
 Tony Walter, Christine Valentine, Lorna Templeton,
Amy Brickhill (University of Bath).
 Linda Bauld, Jennifer McKell, Allison Ford, CaroleAnne Greenan (University of Stirling).
 Joan Hollywood (bereaved family member advisor).
 Gordon Hay, Richard Velleman (Consultants).
ESRC funded (2012-2015) – England & Scotland.
http://www.bath.ac.uk/cdas/research/understanding-thosebereaved-through-substance-misuse/
Context
A
sizeable population, although no
firm estimates of prevalence.
Lack of academic research, only a
handful of studies.
Issue largely omitted from policy and
practice, with some exceptions.
Research study overview
1.
2.
3.
Phase 1: 100 in-depth qualitative
interviews with adults who have
experienced this type of
bereavement (complete).
Phase 2: 6 focus groups with 40
professionals and bereaved people
(complete).
Phase 3: working group to develop
practice guidelines (in progress).
Interview sample, N=106
oFemale
79, Male 27 (age range 22-75).
oDeceased: Male 79, Female 23 (age range 16-84).
oMajority White British (interviewees & deceased).
oTime since death: average 8 yrs (range 1 month to 30+ yrs).
oRelationship of interviewee to deceased:
o56 parents (several couples interviewed together).
o21 children (includes 1 adopted child).
o13 spouses/partners (includes ex’s and 1 LGBT).
o13 siblings (includes step-siblings).
o6 friends.
o3 nieces.
o12 in treatment and 9 in recovery (interviewees).
oWide range of causes of death: alcohol featured in roughly
half of the deaths, drug deaths predominantly involved
opiates.
Findings: some emerging themes from
interviews & focus groups
oDiversity
of sample: characteristics, experiences & needs.
oNegative impact of living with substance (mis)use can
continue after death, affecting grieving & remembering.
oCompounding factors:
oCircumstances of the death.
oDiscourses of understanding substance use/addiction
(both before & after death).
oStigma (actual and perceived).
oWhat do this group need, and how should it be delivered?
oCreative responses & other ‘positive’ outcomes.
oIs this a unique bereavement?
Impact can continue at & beyond death
“So for me when she first died it was a relief that that was over
.....it is difficult because you feel guilty for feeling like that.....you
think it’s wrong to have feelings like that and therefore you feel
that perhaps you don’t have the right to grieve and be so
upset.....it took me a while to realise that I had the right to be
upset” (daughter)
“...I know it’s an unusual thing to say but I prefer it that he’s dead
you know, it’s been so much more peaceful since he’s died, just
to not have to witness someone’s profound suffering like that....it
feels like he’s at peace, that’s how it feels now” (son)
Addiction is a very hard thing to get through. But...you will always
live in hope that they were going to turn their lives around. And
that’s why I supported him....many other people have said, well, I
would have chucked him out a long time ago and said I don't
want anything to do with him. But I could never do that” (mother)
“I think I was really conscious of the fact that I didn’t want anyone
to think just because he was an alcoholic and just because he
died young doesn’t make him a bad dad, he was a fantastic
father, he really was....and I wanted people [at the funeral] to
know how special he was to us” (son)
Discourses around ‘addiction’
“I remember at the funeral I wanted any proceeds to go to
Nacoa [National Association for the Children of
Alcoholics].....[but my] brother-in-law didn’t want the funeral to
have any mention of alcohol. So I thought, this is what killed him
but we’re not to mention it” (ex-wife)
“alcoholism, it’s a hell of a problem to deal with. And I think
anybody trying to deal with it has to accept that there are limits
on what you can do because ultimately each person chooses his
own life. And I think that’s an important message....It may be that
with all your best efforts the problem will still be there and.....in
the end it may result in death” (father)
“.....knowing that it was a disease and she couldn’t help
herself....I think that was the first time in my life when I was
helped to realise it wasn’t my fault, it wasn’t my fault that she
drank, to see more of alcoholism as a disease” (daughter)
Stigma
“[people] shouldn’t, like I did.....stigmatise themselves, they shouldn’t put
themselves down or worry about what other people are going to think.....
It’s so important to be able to talk about how you’re feeling and....not
worry that you’re going to be judged for how you’re feeling, or that your
loved ones are going to be judged” (brother)
“…I just read, ‘Unemployed man dies of drug overdose’ and it was [my
son]….so I wrote to the editor of the paper, I explained the type of
person [my son] was and I don’t think the main point about him was
that he was unemployed, there was more to [him] than an
unemployed man.....[but] that headline is the headline they want, they
don’t want this person to be an ordinary nice person, they want him to
be a drug addict” (father)
“And it’s just a horrible stigma, you get a label on you, you are labelled,
especially by the police.....it’s as if when she died ‘Oh another one
bites the dust’. That’s the impression we got you know when it all
happened, it was just horrible” (mother)
Support: mapping the response
Support: poor experiences
“I did feel desperately let down because....there was a young
man fighting for his life and surely somebody in that A&E
department would have had the decency to say, ‘Well I
think he needs next of kin’ but no, they didn’t (mother)
“The police weren’t brilliant, the way they told my mum. She
has a post office....a policeman came in and said ‘do you
have any relatives in [town]?’ She went ‘oh yes, my son’
and he just went ‘oh, well he’s been found dead’....He said
this in the shop with customers there” (sister)
“it was just routine to them [policemen]....you are going to tell
a mother that her son just died, it doesn’t matter what kind
of person she is or what kind of person he was, you try and
show a bit of compassion. You don’t just go in as if it was
an ordinary run of the mill thing” (mother)
“I thought there is no emotion or anything with you....I just felt
her mannerism wasn’t somebody with compassion and
empathy, it was just, you know, this is my job” (mother)
Support: making a difference
“a person who helped us absolutely incredibly at the most
crap time was [my son’s] doctor. He was so
understanding and we talked....that was the best
counselling that we had” (mother)
“The doctor in A&E who signed his death... he said ‘This
gentleman had died’ and that made such a difference to us.
We were upset and I thought he wasn’t referred to as ‘This
drug addict has died’” (parents)
“But I found a very sympathetic, very lovely [undertaker]
who was wonderful and who took care of everything. He
was just incredibly empathetic and softly spoken and didn’t
make any assumptions about the situation” (mother)
“There were two policewomen who came and they stayed
and they made us tea and they comforted us....[my son]
was known to the police because he had been an addict,
he had been in trouble and that’s awful as a mother. You
feel like society looks down on you. But I didn’t get that
sense, no. They couldn’t have been more helpful” (mother)
Developing a better response, what’s needed?
1.
2.
3.
4.
5.
6.
7.
“It’s everyone’s job”.
Joined-up & well co-ordinated
“....the police, going back to
response, nationally & locally.
when Rich died, never called
Need for a common language
him Richard; they called him
the body. And that was
to understand and to respond.
horrible. It was
Tackle attitudes & stigma to
depersonalised”
substance use/associated
deaths.
Need for information,
“When we did get to see him,
education, awareness and
the mortician brought him
understanding – about the
down, and when we were
nature of substance use but
ready to go he said, shall we
go back, then, Rich? And he
also grief and bereavement.
said nice looking boy. I said,
Manage diversity in this group
oh, thank you”
of bereaved people.
Response needs to be
immediate, responsive, flexible,
(mother)
not time-limited, respectful (to
deceased and bereaved),
personal, kind, compassionate.
Presence of alcohol/drugs in other ways
Participants who themselves have/had alcohol problems –
in treatment/recovery.
 Association between their use, and their
treatment/recovery, and the death.
 Influences experience of, impact of, and understanding
of the death.
 Important role to play in other ways, and for others who do
not have such problems.
 Coping/escapism.
 Presence of alcohol at funerals.
 Remembering.

“....he loves St Patrick’s Day and I usually take a beer
with me. If it is St Patrick’s Day I will pour it on the
grave. Because I know he’s an alcoholic, but at the end
of the day that was his thing. Paddy’s Day was a good
knees-up and why shouldn’t he after he’s died” (niece)
Creative responses
Writing – books, songs, letters, poetry.
 Contributing to memorial quilts & events.
 Making films.
 Raising money for related charities.
 Volunteering, training, working in these areas to help
others, setting up support/services.

“I decided I was going to write a book, which I have
subsequently done… it is a book about loss by
bereavement, by addiction, drugs… I think a lot of
people have found it helpful, actually. Loads of people
have read it and said that’s really helped me” (mother)
I write a lot of poetry about him. I write a lot of songs
about him (niece)
Positive outcomes
“....I do think the relationship I have with my mum has made me
who I am and from that I have a lot of empathy and a lot of
determination and it has enabled me to achieve things in my life
that I may not have done otherwise” (daughter)
“I think it has completely defined me....it made me grow up really
quick.....I think as well I appreciate life because of it....it
certainly has changed, defined who I am, not completely. I am
who I am, but it did shape my life definitely” (daughter)
“since my uncle died, I’ve turned my life around. I had
nothing....my mental health was really quite severe. I was
getting into lots of debt and, when he passed away, I just
realised that you need to be living. And the biggest thing I
want to do is just make an impact on other people’s lives and
take care of people that are in the worst part of their
lives....you know if I can help just at least one person and then
I’ve done something good in the world” (niece)
Is this a unique bereavement?
“...bereavement is a difficult thing for people to, or death is
a difficult thing for people to deal with anyway, they react
weirdly to it. But the fact that it is death through an
addiction I think emphasises that” (daughter)
“It would be good to have something like Cruse or
bereavement counselling, but it would be good if somebody
had a specialism in it because as I said there's always guilt
around death.....The people around them feel that they
could have done something, and I think that’s a thing when
anyone's abusing any substance....it's that support to really
know it's not their fault” (daughter)
“The big thing for us is that [our son] died; not how he died
really” (parents)
Concluding thoughts
This is a group who face several complex and
distressing dilemmas.
 Our research extends knowledge about bereavement
through substance use.
 Findings contribute to gaps in understanding sub-groups
of the bereaved, and theories of grief & bereavement.
 Similarities with other types of death, but there may be
factors which are unique to this type of death.
 This is a group lacking in support (before and after
death) and we hope that our study will make a
contribution to raising awareness, resulting in greater
attention within policy & practice.

“I noticed how lost the family were after this death. And we
just didn’t have any support”(niece)