We conduct a qualitative research project to gain insight into the problems faced by family members of people with a substance use problem. A number of inter-related themes emerge: confusion/lack of awareness; imbalance/pervasion of the problem; heightened negative emotions; family support/treatment; coping; outcomes; family, and other stressors. The important role of family support groups is emphasised. (2,761 words)
The book Beating the Dragon: The Recovery from Dependent Drug Use by Scottish academics James McIntosh and Neil McKeganey [1] had a huge impact on me. It not only helped me gain a better understanding of recovery from drug addiction (cf. Chapter 7), but also emphasised to me the importance of listening to the voices of people affected by substance use problems, either directly or indirectly. It really opened my eyes to the value of qualitative research in helping individuals, families and communities tackle substance use problems.
The qualitative research methodology Grounded Theory was developed two sociologists, Barney Glaser and Anselm Strauss [2]. I started to learn about, and then teach some of my talented Psychology undergraduate students how to use, the approach after reading Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory by Anselm Strauss and Juliet Corbin [3].
The first piece of qualitative research we conducted was carried out by Gemma Salter for her final year psychology project in 2003/4. After talking with Sian Howells, the WGCADA Family Worker, and Mike Blanche, who set up Drug and Alcohol Family Support (DAFS) in Blaenau Gwent, South Wales, I had gained some insight into the problems faced by family members of people with a substance use problem. Sian and Mike were keen for us to conduct research with family members with whom they interacted, in order to provide insights into how they were negatively affected by their loved one’s substance use problem and how these consequences might be ameliorated. Our findings would then be disseminated to a wider audience.
From what I had read and heard, there was far too little support in the community for people indirectly affected by substance use problems. Figures at the time suggested that there were at least 250,000 – 300,000 people with a serious drug problem and over 1.8 million drinking alcohol at a harmful level in the UK. If two close family members (a conservative estimate) were affected, this meant that there were at least 4.2 million people in the UK alone living with the negative consequences of someone else’s drug and/or alcohol problem.
Gemma’s research involved semi-structured interviews (lasting 42 – 129 minutes) with nine parents and one grandparent (who had assumed the role of parent) of people with a drug and/or alcohol problem. The participants were recruited from WGCADA (Swansea) and DAFS. Interviews were taped, transcribed, and then analysed using Grounded Theory.
Eight important themes emerged from Gemma’s analysis, which she termed: confusion/lack of awareness; imbalance/pervasion of the problem; heightened negative emotions; family support/treatment; coping; outcomes; family, and other stressors. These inter-related themes, each comprising various concepts, were integrated into a preliminary model describing the impact of substance misuse on the families interviewed, and various related matters. The following summary of Gemma’s findings is based, in large part, on an article I wrote for the magazine Drink and Drugs News in November 2004 (p. 12). Some quotes from study participants have been added.
Families face a number of difficulties when one of their children develop a substance use problem. Parents, as well as siblings and relatives, are likely to feel extremely stressed about a whole range of problems—initial confusion about the nature of the substance use, imbalance as the problem takes over, a barrage of negative and contradictory emotions, the stigma associated with substance use, and problems associated with the treatment system.
Confusion arises and increases because parents are not aware of what is going on with their loved one, and because of a lack of knowledge about substance use and its associated problems. Initially, parents are not aware of what substances are being used, the method of administration, and the seriousness of use. For some parents, confusion and uncertainty continue for a long time.
There is usually a gradual process of realisation, as family members witness the consequences of use, rather than a clear-cut understanding of what is going on. Some parents are constantly trying to ‘catch-up’, in order to fully understand new or different stages of their loved one’s addiction or recovery process.
‘I found out within less than a year that he was injecting himself. Purely, I found out because… he had phlebitis in the legs. He had infections there, and ulcers.’
The process of understanding what is going on is often confounded by the user’s deceit and lies, which create an atmosphere of mistrust. Even if they are not deceitful, users can be in denial about their problem. Some parents are also in denial, generally because they don’t know how to deal with the problem. They experience contradictory thoughts and behaviours, particularly towards their loved one. All these factors add to the ongoing confusion.
‘I seemed to be looking for the good in him…I know he hurt me by pinching [stealing], but he’s family… As a son he leaves a lot to be desired, but he’s still my son, and this is the hard part about it.’
Parents are involved in a learning process about the nature of their loved one’s problem and how it can be overcome. In order to achieve a greater degree of clarity, they must learn about and understand the drug(s) involved, the reasons for use and consequences of use (e.g. drug withdrawal, overdose), the nature of recovery, and what different forms of treatment involve and how they can be accessed. Confusion can be exacerbated by information obtained from questionable sources, such as some elements of the media.
Parents’ lives are knocked off balance, as the substance use problem pervades and dominates the family. This imbalance is characterised by a series of worries, which tend to dominate parents’ thoughts, and cause a significant amount of stress. These worries are either general in nature or specifically relate to fears regarding the user’s safety or health.
‘I was frightened we were going to have a phone call to say he was dead, or he was in hospital with an overdose… We were just waiting for a knock on the door to say they’d found him in the gutter or something like that.’
Some parents whose family member is in recovery from addiction worry about them relapsing.
‘You’ve always got that worry that they will relapse and go back, and I think I will always have that. I don’t think I will ever get away from that.’
In the turmoil of worry about their loved one’s health and safety, parents often feel as if they dislike or even hate their child, hoping that they would die or disappear to remove the problem altogether. In most cases, this feeling contradicts concurrent feelings of parental love and obligation and serves to further confuse and stress the parent. Many of the parents also experience other negative emotions, such as feelings of isolation, shame, grief, and anger.
The addiction treatment system offers little initial comfort, as parents become frustrated with long waiting times for their loved one.
‘I get annoyed about it, angry and frustrated as well…I think the access [to treatment] is very, very slow, and I think this is where a lot of problems arise. As is the case with my son, they get frustrated, and they get despondent, and they think… what’s the use?… Access needs to be a lot, lot quicker.’
Then comes the stress of stigma and prejudice. Although most parents don’t experience stigma aimed at them directly, they suffer when it’s targeted at their child and often try and conceal the problem. There is a tendency for a parent to feel that other people think the user’s problem is the parents’ fault.
‘You could tell by the tone in her voice that she was pointing the finger. It makes you feel that you haven’t done things right for your family. Where have you gone wrong, is what you say to yourself?’
It doesn’t take long for the effects of stress to manifest itself in physical and psychological health problems. Physical symptoms come in the form of eating and sleeping problems, high blood pressure, stomach problems, irritable bowel syndrome, and tension aches. The emotional effect is severe enough that parents often visit their GP for help, where they are often prescribed anti-depressants. These drugs can cause problems for the family member, i.e. they may not alleviate the symptoms, they may produce side effects or withdrawal effects, or may be highly addictive, e.g. Librium.
‘I lost two stone in weight because of not eating properly. My husband developed two ulcers… We weren’t sleeping… My oldest son thought we were having problems in our marriage because we’d both gone to looking terrible.’
Other practical concerns can soon weigh in, not least the financial implications of paying for the user’s treatment, paying off their debts and, in some cases, actually paying for drugs to support the user’s habit.
Parents often put their social life on hold, fearing for the health and safety of their child every time they go out, or worrying what condition their house might be in when they return. They might not feel well enough to socialise, or they might simply not be able to take a holiday anymore because of lack of money.
Immediate members of the family feel the disruption, as they become wary of the unpredictable, and sometimes thieving, nature of the user. Often the user repeatedly returns to the family home after living away, and the parents are faced with a grown adult being dependant on them again.
‘I would not have expected to still be responsible in the way I feel responsible for a son of 30… It feels almost as though I still have a child in the home… even though in some ways he is an adult… Overall, it’s like still being responsible for a child.’
Arguments and tension increase, which is not helped when there are contradictions in the way that different members of the family feel and act. The user often steps in to divide the parents, creating further problems between them.
‘I approach it a completely different way my wife approaches it…I mean at the end of it, she was telling me I can’t go on with this, he’s gotta go. And at that time, I was saying no, we’ve done so much work… so we bicker about that quite a lot.’
With all attention on the user, it is not surprising that the user’s siblings can be neglected. The parent spends so long worrying about the user, that they have little time to see to others in the family—they are left to look after themselves. Relations between the user and their brother or sister sometimes have little hope of staying civil.
The wider family may provide whatever support they can by talking about problems, but there is rarely any active involvement. This is not usually intentional—merely a symptom of a lack of understanding of the issues involved, or how best they could help.
Parents use different coping methods—these are sometimes helpful, but at other times cause further stress. Some parents are deliberately non-confrontational, giving the user money, buying substances for them, and caring for them—but not confronting them directly about their problem. Others use avoidance coping, avoiding actively dealing with the problem and its consequences, denying the problem, concealing it, and refusing to let the user move back into the family home. Many parents try their best at active coping, trying to do something to improve the situation by threatening, giving the user an ultimatum, or helping them with their treatment.
Many parents also reported coping on a day-to-day basis. Some parents feel that this way of getting by is an improvement, at least offering them flexibility and exposing them less to the risk of feeling let down if plans or promises are broken. Others feel this is a negative approach.
‘You’re just living day-to-day. I come home from work thinking… “what am I going to expect now? What have I got to deal with now?”…You can’t look ahead because there isn’t a way forward. You just live day-to-day and hope you can cope with it.’
For many parents, it is important to be able to explain, or attribute some cause to, their loved one’s substance use problem. They might turn to the disease model of addiction, or look to blaming themselves or others. There is no consistent method of coping, and parents are likely to vary their method in response to different problems, and in an effort to find the best way to cope. The fluctuations in coping may clash with their partner’s opposing fluctuations, further increasing tension within the family.
Parents who belong to a family support group find tremendous support from sharing experience with other people in the same situation. Learning about various issues relating to substance use is, in itself, a way of learning to cope, and the groups reduce isolation by bringing people together into an empathic and hopeful social environment. Parents report that they can put their problems into perspective, and feel better by having the opportunity to help others.
‘I came out feeling marvellous… These people know what I’m going through, nobody else had known. I thought I was the only one that was going through this terrible time… Listening to these people’s stories I realised how other people… had coped, how things had got better… Every week I go… I get something out of it, and if I don’t get anything out of it then at least I think I’ve helped somebody else.’
Many of the barriers that parents experience, in trying to get family support, relate to ‘the system’. Parents find that there is a lack of services dedicated to families—or if they are there, they don’t know about them, or how to find them. Sometimes the long delay in accessing help is more about personal barriers. Parents are often reluctant to talk about or admit that there is a substance use problem in the family. Often, they are simply too preoccupied with the user’s needs to seek help for their own.
Finally, it should be noted that parents often alter their views on substance-related issues, through their personal experience and interacting with the treatment system. Many make practical changes in their lives and some start to work in the substance use and counselling fields.
‘I think I’ve become a lot more tolerant to addictive behaviour… Whereas before my initial reaction was… making a moral judgement… I’ve really moved away from that to feeling a bit sorry for people who’ve fallen into what I see now is a trap.’
‘It pushed me down a really different road to which I would have gone… I think I’m a lot stronger now and I think I’ve achieved something since then. I got back into education, I’ve become a counsellor, I’ve done a management course, I’m running this [family support organisation].
The present research study of family members who have accessed a family support group was small-scale, but intensively analysed. The insights from it show the multi-faceted nature of the impact of substance misuse on the family. One message is clear: society must learn to attend to the many needs of the families and carers of people with a substance use problem.
In finishing this chapter, I must emphasise how thrilled I was with the quality of Gemma’s research. She was awarded the Departmental Project Prize for that year and went on to graduate with a First Class Honours degree. Gemma Salter was one of the most talented students with whom I have had the pleasure of working. As you will see from a later chapter, her ‘career’ with Wired In had not ended.
The photograph is of a dinner for members of WGCADA and the Wired In team at the King Arthur in Reynoldston, Gower, South Wales. Sian Howells, WGCADA Family Worker is at the front, with Lucie James (Wired In) on her left and Norman Preddy (CEO, WGCADA) to her right. Photograph was taken 2004.
Endnotes:
1. James McIntosh and Neil McKeganey, Beating the Dragon: The Recovery From Dependent Drug Use, Pearson Education Limited, 2002.
2. Barney Glaser and Anselm Strauss, The Discovery of Grounded Theory, Chicago: Aldine, 1967.
3. Anselm Strauss and Juliet Corbin, Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, Sage Publications Inc, 1998.
> My Journey: 11. Stories of Loved Ones Indirectly Affected by Substance Use Problems
