Bereavement through substance use: research, awareness and

support

Lorna Templeton

(on behalf of the project team)

DrugFAM’s 6th Annual ‘Bereaved by Addiction’ Conference: 4th October 2014

More information on our project

The Project Team: Tony Walter, Christine Valentine, Lorna Templeton,

Amy Brickhill (University of Bath). Linda Bauld, Jennifer McKell, Allison Ford, Carole-

Anne 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-those-bereaved-through-substance-misuse/

Aims of presentation

Introduce the experiences of a population of family members and individuals bereaved through substance use.Summarise the research we have done. Think about how our findings help to

raise awareness of this group of people. Explore the support needs of people

who have been bereaved in this way.

ContextSubstance use as the most inclusive term.A sizeable population. Lack of academic research. Issue largely omitted from policy and

practice, with some exceptions.Collaborative working e.g. our 2 fields of

research, BTA (Bristol), Drugfam, Adfam, Cruse; further links coming out of our project.

Why our study is important“...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)

“I just think if me taking part in this, if that’s going to help a family who loses somebody.....It doesn’t matter who if they’re so deeply

impacted by it. If this research means that they’re going to be fully supported and they don’t have to feel alone, then that’s just

going to be amazing” (niece)

“....one of the things that sticks in my mind about my mum’s death is the undignified way she died and how I should have had more of a voice to have done something about that......to me if I can talk about some of that that maybe produces some guidelines that makes something different for somebody else, that would

be a really positive thing to have done” (daughter)

Research study overview

1. Phase 1: 100 qualitative interviews with 106 adults who have experienced this type of bereavement (complete).

2. Phase 2: 6 focus groups with 40 professionals and bereaved people (complete).

3. Phase 3: working group to develop practice guidelines (in progress).

Interview sample – 106 adultsoFemale 79 and male 27.oAge at interview 22-75 years.oAge at time of death 13-68 years. o12 in treatment and 9 in recovery.oRelationship to deceased:

o56 parents.o21 children (includes 1 adopted child).o13 spouses/partners (includes ex’s and 1 LGBT).o13 siblings (includes step-siblings).o6 friends.o3 nieces.

oDeceased: Male 29 and Female 24.oAge range 16-84 years.

Interview sample – more informationoMajority of interviewees and deceased were not living together when the death occurred. oTime since death – ranged from 1 month to 30+ years, average 8 years. oAlcohol featured in roughly half of the deaths; drug deaths predominantly involved opiates. oWide range of causes of death and of the role of alcohol/drugs in the death.oMajority of interviewees and those who died were White British. oDiversity of sample reflected the diversity of their experiences.

Findings – a focus on support (some emerging themes from the interviews)

oDiversity. oContinuity of/gaps in support. oKeeping the family/close others informed. oShowing/not showing kindness, concern, tact.oRespecting or not respecting privacy. oBeing available and taking time. oMedia responses. oStigma – both actual and perceived. oGeneric or specific support? Meeting others with similar experiences. oFor every source of support and the delivery of support, there are both good & poor examples.

Keeping the family/close others informed“....the fact of the matter is I did feel desperately let down

because all I know the facts are that 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 of a son)

 

“I tried to find out what happened so the actual doctor who done the autopsy, he phoned me, I phoned the police in

[town] to find out and to query some stuff. And he, they in turn contacted the doctor who in turn contacted me and

then tried to explain. So the doctor who done the autopsy and the procurator fiscal in [town], they helped me no

end” (Father of a son)

Showing/not showing kindness, concern, tact

“And there seemed to be a lot of policemen and they said we’re searching the house. I said, have you got a search

warrant? He said we don't need a search warrant. I questioned, you know, how they could do this, but they

were very sort of - they treated us terribly.....And in contrast to that, as we were going into the house, just going to walk

up the path, the paramedic from the ambulance came out….Oh, he was nice. And he stopped and he said I’m so

sorry. He said I did everything I could. But he said, you know, he’d been there some time. It was quite the opposite

of the police” (Parents of a son)

Respecting/not respecting privacy“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 XX ?’ She went ‘oh, oh yes, my son, he lives

[there] and he just went ‘oh, well he’s been found dead’... He said this in the shop with customers there” (Sister of a brother)

 

“They just said that they needed to talk to me about something, so I immediately said; oh it’s [my partner] isn’t it? And they said

yes, can we come and speak to you? And I said well I’m at work now you know, is there anything I can do? Can it wait?

And they said, we do need to speak to you and it is urgent.....they were….as gentle as they could be, I think they asked me was there somewhere where we could go to speak in private..... I took them to one of the little bit of a restroom

where we sit and have a cup of tea and they [told me]” (Partner)

Being available/taking time“But a person who helped us absolutely incredibly at the

most crap time was [my son’s] doctor …he came round and he was absolutely incredible. He was so

understanding and we talked. You know, I mean that was the best counselling that we had” (Mother of a son)

 

“And you know when my GP never visited, never phoned, never came near when [my son] died, and he was his

patient as well....I came back from the undertakers and we got a message from one of the doctors, an answer phone message to say....yes I was supposed to phone

you yesterday but I didn’t, sorry, I am phoning today, you are obviously not in, just to let you know tomorrow we are running industrial action so if you need a doctor phone on Monday. That was the message I got” (Mother of a son)

Stigma & falling through the net“There is like a big stigma, like nobody knows what to say and they almost like kind of look down on you as if it’s some kind of like lower class sort of problem that oh, you know, we don’t talk about things like that. I think well actually we should talk about things like that.....there’s not much about actually what it does to your relationships and what it does for the people that are

left behind” (Daughter of a father)

 

“I think there should be something where there is an immediate liaison from Police to family liaison because....if it’s a murder there would be a family liaison officer, if it was an accident there might be victim support. But there was nothing at all. Nobody who made contact or that I was put in contact with.

And somehow you don’t fit anywhere either......So you feel like you fall between everything and there is nothing that I can see particularly for families where it’s been drugs” (Mother of a son)

Support & meeting others with similar experiences

“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. So yes it's just that would be good” (Daughter of a mother)

 “And we went on like that, really, for a couple of years.... that’s

when I discovered DrugFAM.......And that was a lifeline....Because all of a sudden I realised I wasn’t alone

anymore, or we weren’t alone anymore....And that was just incredibly helpful. I mean, it didn’t actually make any practical

difference, but it made a lot of sort of emotional difference.....because we could talk to people who understood

how we felt” (Mother of a daughter)

Findings – a focus on support (some emerging themes from the focus groups)

1. “It’s everyone’s job” (application of safeguarding mantra).

2. Response needs to be at both national & local levels, and be much better co-ordinated.

3. Cultural/societal, individual and organisational change needed to challenge and tackle stigma & language.

4. Need for information, education, awareness and understanding – about the nature of substance use but also grief and bereavement.

5. Allow for diversity & difference.

6. Response needs to be immediate, responsive, flexible, not time-limited, respectful (to deceased and bereaved), joined up, personal, kind, compassionate.

Thoughts of focus group participants“It’s changing the culture, I just automatically, that’s just

part of my job. I don’t have to think to do it, I just do it”

 

“For me, you have to strip it right back to raising awareness and getting rid of stigmatisation....because society

creates that and I think that environment is the thing that needs to go”

 

“I think that it’s important there’s recognition of the stigma and shame around these deaths and how very often

people are disenfranchised from their grief.....it’s [also] important that people recognise [that] these aren’t like

normal bereavements, whatever one of those might be”

Mapping the response

Improving the responseoOverwhelming, daunting – even to be in contact with just some of the people on the map.oOverwhelming for professionals too?oFour significant challenges:

1. The need for a response which is joined up, nationally and locally.

2. Coming up with a common language to understand and be able to respond.

3. Tackling attitudes and stigma (in all its forms) to substance use and associated death.

4. Managing diversity in this group of bereaved people.

Concluding thoughts This is a group who face several complex and

distressing dilemmas. Our research extends knowledge about how people can

be affected by the alcohol- or drug-related death of a relative/friend.

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.