Substance Use & Misuse, 49:762–769, 2014 C 2014 Informa Healthcare USA, Inc. Copyright ISSN: 1082-6084 print / 1532-2491 online DOI: 10.3109/10826084.2014.891616
ORIGINAL ARTICLE
Alcohol Consumption, Dependence, and Treatment Barriers: Perceptions Among Nontreatment Seekers with Alcohol Dependence ´ Sara Wallhed Finn, Ann-Sofie Bakshi and Sven Andreasson Department of Public Health Sciences, Karolinska Institutet, Stockholm, Sweden INTRODUCTION
Background: Alcohol use disorders are highly prevalent worldwide. However, only a minority with alcohol dependence seek and undergo treatment. From a public health perspective, it is important to understand why people do not seek treatment. Objectives: This study aims to describe how people with alcohol dependence perceive and discuss treatment for alcohol use disorders and their reasons for seeking and not seeking treatment. Methods: 32 alcohol dependent adults from the general population participated in focus groups and individual interviews in Stockholm during 2011–2012. Data were analyzed with thematic content analysis. Results: Suffering from alcohol dependence, as well as realizing the need for, and entering treatment, were associated with shame and stigma, and were strong barriers to treatment. Other barriers included the desire to deal with alcohol problems on one’s own and the view that seeking treatment required total abstinence. Negative health-effects were mainly a nonissue. The participants’ knowledge about treatment options was limited to lifelong abstinence, medication with Disulfiram and residential treatment. These were seen as unappealing and contrasted sharply with preferred treatment. Conclusions/Importance: Public health literacy regarding alcohol use, dependence, and treatment ought to be improved in order to lower barriers to treatment. Treatment services need to better match the needs and wishes of potential service users, as well as taking stigmatization into account. In order to develop suitable treatments, and to reach the majority who do not seek treatment, the clinical understanding of alcohol dependence needs to be expanded to include mild to moderate dependence.
The WHO estimates the worldwide one-year prevalence of alcohol use disorders at 3.6% (Rehm et al., 2009). In Sweden, 4.0% of the adult population is estimated to be alcohol dependent (Andr´easson, Danielsson, & Hallgren, 2013a). A majority of these, around 75%, have a mild to moderate form of dependence; fulfilling three or four of the seven DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition) criteria for dependence, while a minority, circa 25%, have a more severe form of dependence, fulfilling five or more criteria (American Psychiatric Association, 2000). Though treatment-seeking has been found to increase the rates of recovery from alcohol dependence (Cohen, Feinn, Arias, & Kranzler, 2007; Dawson, Grant, Stinson, & Chou, 2006), only a minority with alcohol dependence seek and undergo treatment (Cohen et al., 2007; Blomqvist, Cunningham, Wallander, & Collin, 2007). Those who do so tend to have severe dependence, while the majority with mild to moderate dependence usually does not seek treatment. These two groups have been described as “the two worlds of alcohol problems”; where the treatment population tends to be middle-aged, male, suffering from more severe alcohol problems, have psychiatric co-morbidity and social problems such as unstable housing or unemployment. Whereas the nonclinical population has less severe alcohol problems, lower psychiatric co-morbidity and fewer social problems (Berglund, Fahlke, Berggren, Eriksson, & Balldin, 2006; Storbj¨ork & Room, 2008). While mortality in this group is twice that of the general population, it is considerably lower than the mortality risk in the clinical population (Roerecke & Rehm, 2013). However, research has thus far mostly been limited to the clinical population, and little is known about the characteristics of the much greater population with mild to moderate dependence
Keywords alcohol, dependence, general population, treatment barriers, qualitative method, focus groups, interviews, Sweden
Address correspondence to Mrs. Sara Wallhed Finn, Master of Science, Department of Public Health Sciences, Karolinska Institutet, Riddargatan 1 mottagningen f¨or alkohol och h¨alsa, Beroendecentrum Stockholm, Riddargatan 1, 11435 Stockholm, Sweden; E-mail: [email protected]
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(Cunningham & McCambridge, 2012; Andr´easson, 2012). From a public health and medical perspective, it is important to understand why this group does not seek treatment. There are many different barriers to treatment; stigma, not recognizing problems related to alcohol, not perceiving a need for treatment, or a wish to handle alcoholrelated problems on one’s own (Cunningham, Sobell, Sobell, Agrawal, & Toneatto, 1993; Grant, 1997). A lack of knowledge about available treatment options also plays a role, as do concerns about treatment content (Copeland, 1997). Few studies have examined how the general population view treatment options, and more consumeroriented approaches have been recommended (Tucker, Foushee, & Simpson, 2009). The majority of studies on alcohol dependence and treatment, especially on barriers to treatment, have taken a quantitative approach. However, in order to understand these phenomena more fully, qualitative studies of how people with dependence perceive and discuss treatment are also required (Room, 2005). RESEARCH AIM
This study aims to describe and explain how people with alcohol dependence perceive and discuss treatment for alcohol use disorders and their reasons for seeking and not seeking treatment. Focus groups and individual interviews will be used to collect data. The data will be analyzed in relation to the participants’ grade of alcohol dependence, age, and occupational status. METHOD
Focus groups were used to elicit points of views as well as socially shared representations of alcohol consumption and treatments (Barbour & Kitzinger, 1999). However, focus group discussions between strangers may not always generate personal accounts, especially concerning issues that can be considered sensitive, as alcohol problems (Grønkjær, Curtis, De Crespigny, & Delmar, 2011). Individual interviews were therefore also conducted to enrich data. The participants were recruited by a market research company with access to a panel, consisting of approximately 115,000 people living in Stockholm county, Swe-
den. 16,895 people, that earlier had responded to questionnaires about drinking and smoking habits, were randomly selected by age and gender. They were asked to answer an online questionnaire including the AUDIT-C (Alcohol Use Disorders Identification Test Consumption; Babor, Higgins-Biddle, Saunders, & Monteiro, 2001) and the seven DSM-IV criteria for alcohol dependence (American Psychiatric Association, 2000). The inclusion criteria were: age 18–65, resident of Stockholm County, having a hazardous alcohol consumption measured with AUDITC (cut-off > 4 for women and > 5 for men) and meeting three or more DSM-IV criteria for alcohol dependence over the last 12 months. In total, 3,648 people completed the questionnaire and 812 met the inclusion criteria. Two hundred forty-eight people agreed to be contacted regarding the study, of whom 32 participated in the study between December 2011 and May 2012. Focus Groups and Individual Interviews
The participants were allocated into focus groups according to three criteria: number of DSM-IV criteria for alcohol dependence met, age, and occupational status. Grade of alcohol dependence was defined as “low” if the participant met three or four of the DSM-IV criteria and “high” for five to seven criteria (Hasin & Beseler, 2009). Due to difficulties in recruiting participants with five to seven criteria, Group 7 was mixed in regards to occupational status. Group 2 had two participants due to a number of noshows. In total, seven focus group discussions were conducted, according to the following Table 1. Open-ended, semi-structured questions were used in the group discussions, consisting of 11 themes. The themes covered different aspects of the participants’ views on alcohol consumption, alcohol problems and dependence, treatment options and settings. The focus group discussions lasted 50–80 minutes and were led by a moderator and assisted by a secretary. At the end of each focus group discussion, participants were offered the chance to be interviewed individually; 31 of 32 participants showed interest. Two participants from each group were randomly chosen and asked to participate, of whom two declined. In total 14 individual interviews, that lasted 30–60 minutes, were carried out. The same questions as in the focus groups were used, with additional focus on the
TABLE 1. Details of focus group participants Group
Number of participants (female; male)
Grade of alcohol dependence
1 2 3 4 5 6 7 Total
4 (1; 3) 2 (0; 2) 4 (2; 2) 5 (3; 2) 7 (5; 2) 5 (1; 4) 5 (2; 3) 32 (14; 18)
Low High Low Low Low Low High
AUDIT-C score
Age
Occupational status
5–8 10 4–8 4–9 5–8 5–7 4–7 4–10
22–27 36–39 40–62 18–27 23–34 22–34 41–56 18–62
Student Employed Employed Student Unemployed Employed Employed and unemployed
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individual’s experiences of alcohol problems, personal views on treatment and treatment-seeking. All focus groups and interviews were audio taped and transcribed verbatim. Participants in both focus group discussions and individual interviews were given verbal and written information about the study, and gave written consent. All sessions were conducted at a specialist alcohol clinic in Stockholm.
focus groups there were examples of how treatment seeking is seen as surrendering to the stereotypical identity of “the alcoholic”, typically characterized as a drunkard on a park bench:
Analysis This study is grounded in social constructionist epistemology, the presupposition of the social construction of reality (Burr, 2003). Reality is seen as continuously reconstructed through language, rather than independently existing and represented by language. Language is considered a social phenomenon, which both structures our experiences of the world and also gives it meaning. Meaning is thus relational, contextually dependent, and constantly changing. The analysis was made using thematic analysis as described by Braun & Clarke (2006). Data were read repeatedly to identify categories of relevance to the research aim. These categories were then grouped accordingly to coherence in topic, as well as in relation to the research aim, and themes were thereby constructed. The themes were defined as a result of interplay between the data, research aim, and theory. Themes were topics that reoccur in the whole dataset, as well as being of high relevance to the discussions. Two researchers conducted the sampling as well as the analysis, and in order to eliminate ambiguities and to reach consensus, the authors constantly discussed the construction of themes and their interpretation. The study has been approved by the Regional Ethics Board of Stockholm.
Interviewer: No.
RESULTS
Two main themes; “Barriers to treatment” and “Assessing treatment alternatives”, each with four subthemes, were identified through analysis of the transcripts from the focus groups and the interviews. The results from the individual interviews mainly corroborate the findings from the focus groups, but contain more personal narratives compared with the focus group discussions. There were few differences found in the data in regards to participants’ grade of alcohol dependence, age, and occupational status. The differences that were found are commented upon in each theme. Barriers to Treatment
Stigma A dominant theme throughout all focus groups as well as in the individual interviews was how problematic drinking, alcohol dependence, and seeking treatment are closely related to shame and stigma, a recurring theme in the literature (Grant, 1997; Corrigan, Watson, Warpinski, & Gracia, 2004; Room, 2005; Schomerus et al., 2011). In several focus groups, participants discuss the importance of keeping up appearances and the need to hide problematic drinking behavior from others. Realizing the need for and seeking treatment is viewed negatively by the participants and is seen as shameful, a sign of failure. In the
Mikael: But it’s this business of seeking help you know, it is an enormous step, even more so going to residential treatment and so on, then you are, oh then you are really way down, a summer alcoholic doesn’t need help.
Peter: He isn’t feeling well Interviewer: But who is being shameful, what is shameful about this, because you. . . Mikael: I think this is old and bound by tradition and has always been seen to be, this is a person who has completely failed at life and can’t manage to support himself or his family and loses his job and sits boozing all day on a park bench. It can’t be more shameful. Peter: Yes, but you have the stigma there you know. Focus group 7
Treatment seeking is linked to failure and also social deprivation, whereon the stigma is based. By admitting to having problems with alcohol and seeking treatment a change of identity takes place, gravitating toward the stereotype of “the alcoholic.” The participants tended to moderate this clich´e by adding that anyone could be alcohol dependent and that dependence does not necessarily lead to social deprivation. Still, this stereotype persists throughout the sessions, thus maintaining the stigmatization of the dependent person. Alcohol as a Bad Habit When different barriers to treatment were discussed, some participants mentioned a preference for a change of lifestyle without treatment. Problematic alcohol consumption was thus constructed as a bad habit which is triggered by certain contexts, like restaurants and nightclubs, and can be altered by changes made in everyday life. The wish to handle alcohol use on one’s own as a reason for not seeking treatment is also reported by Cunningham et al. (1993). Total Abstinence A common view, especially in the age group 18–34, was that seeking treatment required total abstinence from alcohol—often for the rest of one’s life. This perceived requirement was seen as a barrier to seeking treatment, as participants were more open to cutting down or drinking in moderation rather than total abstinence. Health Concerns about health impacts of alcohol use were mainly absent in the discussions, especially regarding physical health effects. In the high-dependent groups, negative effects on mental health were mentioned as an indicator of problematic drinking behavior and were seen as a reason to seek treatment: Fredrik: I d say, as I said before, the psychological health in that case. Physically I can t see, well, I haven t had a sick day in years.
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I go to work, work quite a lot. I exercise; I always bike, I run tens of kilometres a week in a pretty good time.
Focus group 2 However, in general, the connection between health and alcohol use seem to be a nonissue for the participants, a phenomenon also mentioned by Cunningham et al. (1993) and Grønkjaer et al. (2011). Assessing Treatment Alternatives
Sparse Knowledge About Treatment As a part of the focus group discussions, the moderator presented the most common treatment alternatives for alcohol use disorders. A majority of the participants were surprised about the variety of treatment options and expressed scant knowledge about the content of treatments. Different Types of Treatment The participants were generally negative toward internetbased treatment or telephone help lines, as they did not think these types of treatment had any effect on drinking. They preferred a personal meeting; however, the aforementioned interventions were identified as suitable first steps before entering treatment, both to assess one’s alcohol use and to receive guidance to suitable treatment. Pharmacological treatment was viewed negatively by the participants. A common reason expressed was that medication merely targets the symptoms without addressing the underlying problems. In order to make a full recovery one must understand the cause, preferably through psychotherapy. This implies that the habit of drinking in itself is not perceived as the core problem, rather that there are underlying reasons that have to be dealt with. Psychotherapy was the treatment that most participants were positive towards and would prefer. Disulfiram was the most well-known pharmacological treatment. Participants viewed this as a treatment for people with severe dependence and that they would have little choice in the treatment. Almost all the participants were negative to using Disulfiram themselves. Acamprosate and Naltrexone were mainly unheard of, but commented upon as attractive alternatives: Oskar: [. . .] I have my mate, what’s it called, yes his godfather for instance is a superalcoholic, and this was really the last resort, to have Antabuse implants. After that he continued drinking anyway. So, for me, I kind of associate it with severe alcoholism, it would have been tough to realise that this is where you are. Interviewer: But the other medications? Oskar: They sound a lot better actually. Just going by the little I’ve heard sort of, these I could consider. Simon: It’s a bit like Nicorette [Nicotine replacement chewing gum] Oskar: Yes, exactly, so you can have a drink at a social event without having to go to the loo to puke kind of. Focus group 5
As Acamprosate and Naltrexone impose considerably fewer restrictions than Disulfiram, they are much preferred by the participants, and seen as less stigmatiz-
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ing. Disulfirams pharmacological properties and the perceived lack of choice in its use mean high restrictions on personal agency and body, which was viewed very negatively by the participants. Residential treatment was a well-known treatment option, but seen as a final way out when other treatments have failed. Alcoholics anonymous (AA) was the best known self-help group, and opinions about this option were divided; some participants argued help from peers with their own experience of alcohol problems is valuable and effective, while others preferred to see a professional expert. For some participants, these two alternatives were seen as equally desirable: Erik: But if you go to the doctor you want a specialist or someone who knows a lot. I most trust the person who either has personal experience of what you re seeking help for, or someone who s a specialist in the area, who should know everything.
Focus group 1 Components of Attractive Treatment The variety of treatments was viewed positively by the participants, as individual factors such as degree of alcohol dependence, personality traits and personal preference were considered as important factors for the suitability of treatment type. An important component of attractive and effective treatment was confidence in the care provider. Factors that generated confidence vary from participant to participant, examples given were; experience of treating alcohol problems, expert knowledge, and supportiveness. Components of attractive treatments were: easy access without bureaucracy, methods with a high degree of autonomy, as well as treatments that make it possible maintaining everyday life during treatment. Treatment Settings Specialist clinics were favored by participants, primarily due to the perception that expert knowledge is required to deal with alcohol dependence. Treatment in primary care evoked different responses; some were negative as they thought primary care lacked expertise. Others, especially participants in the age group 40–65 years, viewed primary care as an attractive option, saying that it would be a smaller step to take and less stigmatizing compared with specialist clinics, where one would be an identified alcohol patient. Tucker, Foushee, & Simpson (2008) recommend primary care as an appropriate setting, especially for people with mild to moderate alcohol problems, and emphasise that the lack of public knowledge about this alternative is a barrier to treatment. Participants that were students viewed student health services as an attractive option with easy access. Treatment in occupational health care was often absent in the discussions, or seen as less appealing than the other alternatives. Several participants mention fear of negative career impact, if their employer found out about an alcohol problem. Brewer (2006) reported similar findings about alcohol-dependent women’s recovery process, where
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participants expressed a need to hide their condition due to shame and fear of negative consequences for their careers. During the individual interviews, the participants shared personal experiences of problematic alcohol use, and several expressed that this was easier to talk about individually. The analysis of these interviews confirmed the main findings from the focus groups and moreover, some of the participants shared their own experiences of treatment. However, views on treatment were sparse and when asked why, some participants stated that discussing treatment was easier in a group setting rather than individually as their personal knowledge of the alternatives often was limited. DISCUSSION
This study investigated how people with alcohol dependence discuss treatment, and their reasons for seeking and not seeking treatment for alcohol dependence. All participants were recruited from the general population and screened for alcohol dependence with DSM-IV. The majority of the participants fulfilled the criteria for mild to moderate dependence and a few for severe dependence. Few differences were found in the data in regard to the participants’ grade of alcohol dependence, age, and occupational status. This indicates that the perceptions are part of sociocultural structures rather than being group specific. Dependence and Stigma
In this study, the image of the dependent person stereotyped as “the alcoholic,” someone who has lost everything because of alcohol, was highly persistent. This stigma has little connection with reality, as only a small part of the alcohol-dependent population is socially deprived. Nevertheless, this distorted view of dependence is a concrete barrier in the treatment seeking process. This stereotype may well be due to a lack of knowledge about alcohol dependence. The participants expressed ambivalence toward the stereotype’s validity, recognizing that dependence does not necessarily mean social deprivation. According to the participants, the realization that one is dependent and needs to seek treatment is accompanied by an adoption of the identity of “the alcoholic.” Similar results from drug treatment research have been made by Radcliffe & Stevens (2008); where the informants’ ambivalence to enter treatment is often in part due to a belief that “the junkie identity” will be triggered by seeking treatment. This process is comparable with what the participants in this study described, and defined as a detrimental process of marginalization by Cunningham et al. (1993), Room (2005) and Schomerus & Angermeyer (2008). However, knowledge about the effect of stigma on actual treatment seeking is limited. In an epidemiologic study, Keyes et al., (2010) found that people who perceived a high grade of stigma associated with alcohol were less likely to utilize treatment services compared with those who perceived a lower grade of stigma. A further explanation of the difference between the participants’ and the clinical assessment of dependence is that
alcohol dependence, up until now, has been defined and treated as a chronic relapsing disorder. This definition is, however, mainly based on studies of clinical populations, of severely dependent individuals. The greater population outside treatment, with mild to moderate dependence, has not been studied as extensively. Cunningham & McCambridge (2012) and Andr´easson (2012) have suggested that this clinical perspective may limit the understanding of dependence and hamper the development of differentiated treatment. Consequently, mildly to moderately dependent people are left without adequate treatment alternatives. The Impact of Knowledge on Treatment Seeking
The relationship between alcohol use and health was regarded a nonissue by the participants, which may, at least partly, be explained by the participants’ limited knowledge about the consequences of heavy drinking on health, both their own and in general. This constitutes a barrier to treatment, especially among the participants with low to moderate dependence. However, there are exceptions, as the high dependence groups mentioned that negative effects on their psychological health would be a reason to seek treatment. This finding is in accordance with other descriptions of the differences between the clinical and nonclinical population, where treatment seekers have a higher prevalence of psychiatric comorbidity (Storbj¨ork & Room, 2008; Berglund et al., 2006). Participants’ knowledge of interventions for alcohol dependence was limited to more or less involuntary treatment with Disulfiram, residential treatment and lifelong abstinence. These options were considered unappealing, making this understanding of treatment services a barrier to treatment seeking. For the participants, the main characteristics of appealing treatment were a high degree of autonomy and participation. Psychological treatment was the preferred form of treatment, which confirms the findings from an interview survey in the general Swedish population (Andr´easson, Danielsson, & Wallhed Finn, 2013b). Improved public health literacy on alcohol use, dependence and treatment options, could well lower the barriers to treatment. There are two important issues regarding treatment that need to be clarified to the public. The first is that seeking treatment does not necessarily mean lifelong abstinence from alcohol. The younger participants were especially negative toward completely giving up drinking but would consider cutting down. Controlled drinking has been found to be feasible for people with mild to moderate dependence (Witkiewitz, 2013), indicating that information about treatment options, as well as treatments themselves, need to focus more on this alternative. The second issue is to increase knowledge about pharmacotherapy, as Acamprosate and Naltrexone were unknown to most participants but were seen as attractive treatments when presented. Knowledge about alcohol dependence and treatment may, according to Schomerus & Angermeyer (2008), be equally as important as reducing stigma in increasing help seeking. Possible ways to reach this group could be via the internet and telephone help
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lines, as they are seen as attractive first steps for assessment of alcohol use and guidance to treatment. Finally, focusing on the service providers, the findings from this study emphasize the importance of taking into account the highly negative impact of stigma on the treatment seeking process. The study highlights the importance of offering services better matched to the needs of the potential service users. One way to lower the threshold to treatment seeking may be to increase treatment for alcohol dependence in generalist health care, as this was seen as a less stigmatizing treatment option. However, primary care practices and general practitioners need to better communicate their ability to treat people with drinking problems, as their expertise in this field was often questioned. Another way to lower the threshold would be to offer a wide range of treatment options, which also take into account the desire for autonomy and participation in all treatment. Strengths and Limitations of the Study
The selection process had a considerable number of nonresponders, which is a significant limitation of the study. The setting for data collection at a specialist alcohol clinic may have had a negative effect on participation in the study. The market research company, which carried out the recruitment, did not provide further data of this process. It is therefore impossible to draw any conclusions about possible differences between responders and nonresponders. The participants stated that the focus group setting had a constraining influence and the focus groups elicited few personal accounts on drinking habits and treatment seeking. However, the participants extensively shared their own experiences, of which many can be considered as sensitive and personal, during the individual interviews. Even though the individual interviews were undertaken after the focus group discussions, the risk that the group discussions contaminated the individual interviews is considered as very low. Both the experienced interviewers, who conducted the data collection, judged that the participants’ shared personal experiences and views during the interviews that were independent of the group discussions. A majority of the participants referred to the group discussions in the individual interviews and clarified their own points of view. The aim of this study was to describe and explain how people with alcohol dependence, recruited from the general population, perceive and discuss treatment for alcohol use disorders and their reasons for seeking and not seeking treatment. One of the strengths of this study was that the participants were recruited in a nonclinical setting, and therefore included both participants who had gone through the treatment-seeking process and participants who had not. This mix of participants resulted in richer and more varied data. An additional strength of this study is the combination of different data sources. Focus groups were used to capture socially constructed representations and group dynamics to elicit discussion. This proved to be fruitful
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when the participants talked about issues largely unknown to them and generated extensive discussions about issues that elicited limited response in the individual interviews. The individual interviews generated personal narratives and thereby served as comparison to the focus group sessions. CONCLUSION
To help people reflect on and adequately assess if their drinking habits require treatment, the clinical world needs a better understanding of the population of people with mild to moderate alcohol dependence. A consumeroriented approach is key to addressing these peoples’ values and thereby facilitate access to treatment, by reducing stigmatization and increasing public health literacy. Moreover, this approach may enable the development of treatments that better meet the needs of this population. Future research should aim to investigate how different aspects of stigma and public health literacy regarding alcohol dependence, influence actual treatment seeking. Declaration of Interest
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article. THE AUTHORS Sara Wallhed Finn is a clinical psychologist at a specialized alcohol clinic, Riddargatan 1, within the Stockholm Centre for Dependency Disorders. She is also a doctoral student of Social Medicine at Karolinska Institutet, Stockholm. Her doctoral education is focused on treatment preferences and treatment methods for people with moderate alcohol dependence. She is a co-author on publications about preferences for treatment and also SUD and ADHD.
Ann-Sofie Bakshi has a PhD in Communication Studies. Her main research area is implementation processes in health care systems. Another research interest is the societal impact of policy and political regulation in relation to equity in health, where she has done research and evaluations on the behalf of the Swedish government and the European Union.
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Sven Andr´easson, MD, PhD, Professor of Social Medicine at Karolinska Institutet Head of Riddargatan 1, alcohol clinic within the Stockholm Centre for Dependency Disorders. Senior consultant at the Swedish Public Health Agency and at the National Board of Health and Welfare. Member of the board of Systembolaget, the Swedish alcohol retail monopoly. Chairman of the Swedish Alcohol Policy Forum. His research focuses on the epidemiology, prevention, and treatment of alcohol and drug related disorders.
GLOSSARY
Acamprosate and Naltrexone: Pharmacological treatments for alcohol dependence, which reduce alcohol consumption and the risk for heavy drinking. These do not cause unpleasant somatic reactions in conjunction with alcohol use. Disulfiram: The oldest of pharmacological treatments for alcohol dependence, and also known under its generic name “antabuse.” Disulfiram inhibits the liver enzyme aldehyde dehydrogenase, which causes unpleasant somatic reactions in conjunction with alcohol use. Focus group: A method for data collection, where a moderator leads a group discussion about a specific topic. The participants are encouraged to interact and discuss the topic with each other. Social constructionist: An approach within the social sciences that views reality as a social construction through language. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders, (4th Ed., Text Revision). Washington, DC: American Psychiatric Association. Andr´easson, S. (2012). Misleading conclusions from clinical research. Addiction, 107(1), 13–14. Andr´easson, S., Danielsson, A. K., & Hallgren, M. (2013a). Severity of alcohol dependence in the Swedish adult population: Association with consumption and social factors. Alcohol, 47(1), 21–25. Andr´easson, S., Danielsson, A. K., & Wallhed Finn, S. (2013b). Preferences regarding treatment for alcohol dependence. Alcohol and Alcoholism, 48(6), 694–699. Babor, T. F., Higgins-Biddle, J. C., Saunders, J. B., & Monteiro, M. G. (2001). AUDIT, The alcohol use disorders identification test. Guidelines for use in primary care (2nd ed.). Geneva: World Health Organization. Barbour, R. S., & Kitzinger, J. (1999). Developing focus group research. Politics, Theory and practice. London: SAGE Publications. Berglund, K., Fahlke, C., Berggren, U., Eriksson, M., & Balldin, J. (2006). Individuals with excessive alcohol intake recruited by advertisement: demographic and clinical characteristics. Alcohol and Alcoholism, 41(2), 200–204.
Blomqvist J., Cunningham, J., Wallander, L., & Collin, L. (2007). Att f¨orb¨attra sina dryckesvanor − om olika m¨onster f¨or f¨or¨andring och om vad v˚arden betyder. En rapport fr˚an projektet “L¨osningar p˚a alkoholproblem”. [Improving drinking habits – different patterns of change and the importance of treatment]. Stockholm University, Centre for Social Research on Alcohol and Drugs (SoRAD), 7, 1–147. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. Brewer, M. K. (2006). The contextual factors that foster and hinder the process of recovery for alcohol dependent women. Journal of Addictions Nursing, 17(3), 175–180. Burr, V., (2003). Social constructionism. (2nd ed.) East Sussex: Routledge. Cohen, E., Feinn, R., Arias, A., & Kranzler, H. R. (2007). Alcohol treatment utilization: Findings from the National Epidemiologic Survey on Alcohol and Related Conditions. Drug and Alcohol Dependence, 86(2–3), 214–221. Copeland, J. A. (1997). A qualitative study of barriers to formal treatment among women who self-managed change in addictive behaviours. Journal of Substance Abuse Treatment, 14(2), 183–190. Corrigan, P. W., Watson, A. C., Warpinski, A. C., & Gracia, G. (2004). Stigmatizing attitudes about mental illness and allocation of resources to mental health services. Community Mental Health Journal, 40(4), 297–307. Cunningham, J. A., & McCambridge, J. (2012). Is alcohol dependence best viewed as a chronic relapsing disorder? Addiction, 107(1), 6–12. Cunningham, J. A., Sobell, L. C., Sobell, M. B., Agrawal, S., & Toneatto, T. (1993). Barriers to treatment: Why alcohol and drug abusers delay or never seek treatment. Addictive Behaviors, 18(3), 347–353. Dawson, D. A., Grant, B. F., Stinson, F. S., & Chou, P. S. (2006). Estimating the effect of help-seeking on achieving recovery from alcohol dependence. Addiction, 101(6), 824–834. Grant, B. (1997). Barriers to alcoholism treatment: Reasons for not seeking treatment in a general population sample. Journal of Studies on Alcohol, 58(4), 365–371. Grønkjær, M., Curtis, T., De Crespigny, C., & Delmar, C. (2011). Acceptance and expectance: Cultural norms for alcohol use in Denmark. International Journal of Qualitative Studies on Health and Well-being, 6(4), 8461–8472. Hasin, D. S., & Beseler, C. L. (2009). Dimensionality of lifetime alcohol abuse, dependence and binge drinking. Drug and Alcohol Dependence, 101(Suppl 1), 53–61. Keyes, K. M., Hatzenbuehler, M. L., McLaughlin, K. A., Link, B., Olfson, M., Grant, B. F. & Hasin, D. (2010). Stigma and treatment for alcohol disorders in the United States. American Journal of Epidemiology, 172(12), 1364–1372. Radcliffe, P., & Stevens, A. (2008). Are drug treatment services only for “thieving junkie scumbags”? Drug users and the management of stigmatised identities. Social Science & Medicine, 67(7), 1065–1073. Rehm, J., Mathers, C., Popova, S., Thavorncharoensap, M., Teerawattananon, Y., & Patra, J. (2009). Global burden of disease and injury and economic cost attributable to alcohol use and alcoholuse disorders. Lancet, 373(9682), 2223–2233. Roerecke, M., & Rehm, J. (2013). Alcohol use disorders and mortality: A systematic review and meta-analysis. Addiction, 108(9):1562–1578. Room, R. (2005). Stigma, social inequality and alcohol and drug use. Drug and Alcohol Review, 24(2), 143–155.
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Schomerus, G., & Angermeyer, M. C., (2008). Stigma and its impact on help-seeking for mental disorders: What do we know?. Epidemiologia e psichiatria sociale, 17(1), 31–37. Schomerus, G., Lucht, M., Holzinger, A., Matschinger, H., Carta, M., & Angermeyer, M. C., (2011). The stigma of alcohol dependence compared with other mental disorders: A review of population studies. Alcohol and Alcoholism, 46(2), 105– 112. Storbj¨ork, J., & Room, R. (2008). The two worlds of alcohol problems: Who is in treatment and who is not? Addiction Research and Theory, 16(1), 67–84.
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Tucker, J. A., Foushee, H. R., & Simpson, C. A. (2008). Public perceptions of substance abuse and how problems are resolved: Implications for medical and public health services. Southern Medical Association, 101(8), 786–790. Tucker, J. A., Foushee, H. R., & Simpson, C. A. (2009). Increasing the appeal and utilization of services for alcohol and drug problems: What consumers and their social network prefer. International Journal of Drug Policy, 20(1), 76–84. Witkiewitz, K. (2013). “Success” following alcohol treatment: Moving beyond abstinence. Alcoholism: Clinical and Experimental Research, 37(Suppl 1), 9–13.
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ORIGINAL ARTICLE
Alcohol Consumption, Dependence, and Treatment Barriers: Perceptions Among Nontreatment Seekers with Alcohol Dependence ´ Sara Wallhed Finn, Ann-Sofie Bakshi and Sven Andreasson Department of Public Health Sciences, Karolinska Institutet, Stockholm, Sweden INTRODUCTION
Background: Alcohol use disorders are highly prevalent worldwide. However, only a minority with alcohol dependence seek and undergo treatment. From a public health perspective, it is important to understand why people do not seek treatment. Objectives: This study aims to describe how people with alcohol dependence perceive and discuss treatment for alcohol use disorders and their reasons for seeking and not seeking treatment. Methods: 32 alcohol dependent adults from the general population participated in focus groups and individual interviews in Stockholm during 2011–2012. Data were analyzed with thematic content analysis. Results: Suffering from alcohol dependence, as well as realizing the need for, and entering treatment, were associated with shame and stigma, and were strong barriers to treatment. Other barriers included the desire to deal with alcohol problems on one’s own and the view that seeking treatment required total abstinence. Negative health-effects were mainly a nonissue. The participants’ knowledge about treatment options was limited to lifelong abstinence, medication with Disulfiram and residential treatment. These were seen as unappealing and contrasted sharply with preferred treatment. Conclusions/Importance: Public health literacy regarding alcohol use, dependence, and treatment ought to be improved in order to lower barriers to treatment. Treatment services need to better match the needs and wishes of potential service users, as well as taking stigmatization into account. In order to develop suitable treatments, and to reach the majority who do not seek treatment, the clinical understanding of alcohol dependence needs to be expanded to include mild to moderate dependence.
The WHO estimates the worldwide one-year prevalence of alcohol use disorders at 3.6% (Rehm et al., 2009). In Sweden, 4.0% of the adult population is estimated to be alcohol dependent (Andr´easson, Danielsson, & Hallgren, 2013a). A majority of these, around 75%, have a mild to moderate form of dependence; fulfilling three or four of the seven DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition) criteria for dependence, while a minority, circa 25%, have a more severe form of dependence, fulfilling five or more criteria (American Psychiatric Association, 2000). Though treatment-seeking has been found to increase the rates of recovery from alcohol dependence (Cohen, Feinn, Arias, & Kranzler, 2007; Dawson, Grant, Stinson, & Chou, 2006), only a minority with alcohol dependence seek and undergo treatment (Cohen et al., 2007; Blomqvist, Cunningham, Wallander, & Collin, 2007). Those who do so tend to have severe dependence, while the majority with mild to moderate dependence usually does not seek treatment. These two groups have been described as “the two worlds of alcohol problems”; where the treatment population tends to be middle-aged, male, suffering from more severe alcohol problems, have psychiatric co-morbidity and social problems such as unstable housing or unemployment. Whereas the nonclinical population has less severe alcohol problems, lower psychiatric co-morbidity and fewer social problems (Berglund, Fahlke, Berggren, Eriksson, & Balldin, 2006; Storbj¨ork & Room, 2008). While mortality in this group is twice that of the general population, it is considerably lower than the mortality risk in the clinical population (Roerecke & Rehm, 2013). However, research has thus far mostly been limited to the clinical population, and little is known about the characteristics of the much greater population with mild to moderate dependence
Keywords alcohol, dependence, general population, treatment barriers, qualitative method, focus groups, interviews, Sweden
Address correspondence to Mrs. Sara Wallhed Finn, Master of Science, Department of Public Health Sciences, Karolinska Institutet, Riddargatan 1 mottagningen f¨or alkohol och h¨alsa, Beroendecentrum Stockholm, Riddargatan 1, 11435 Stockholm, Sweden; E-mail: [email protected]
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(Cunningham & McCambridge, 2012; Andr´easson, 2012). From a public health and medical perspective, it is important to understand why this group does not seek treatment. There are many different barriers to treatment; stigma, not recognizing problems related to alcohol, not perceiving a need for treatment, or a wish to handle alcoholrelated problems on one’s own (Cunningham, Sobell, Sobell, Agrawal, & Toneatto, 1993; Grant, 1997). A lack of knowledge about available treatment options also plays a role, as do concerns about treatment content (Copeland, 1997). Few studies have examined how the general population view treatment options, and more consumeroriented approaches have been recommended (Tucker, Foushee, & Simpson, 2009). The majority of studies on alcohol dependence and treatment, especially on barriers to treatment, have taken a quantitative approach. However, in order to understand these phenomena more fully, qualitative studies of how people with dependence perceive and discuss treatment are also required (Room, 2005). RESEARCH AIM
This study aims to describe and explain how people with alcohol dependence perceive and discuss treatment for alcohol use disorders and their reasons for seeking and not seeking treatment. Focus groups and individual interviews will be used to collect data. The data will be analyzed in relation to the participants’ grade of alcohol dependence, age, and occupational status. METHOD
Focus groups were used to elicit points of views as well as socially shared representations of alcohol consumption and treatments (Barbour & Kitzinger, 1999). However, focus group discussions between strangers may not always generate personal accounts, especially concerning issues that can be considered sensitive, as alcohol problems (Grønkjær, Curtis, De Crespigny, & Delmar, 2011). Individual interviews were therefore also conducted to enrich data. The participants were recruited by a market research company with access to a panel, consisting of approximately 115,000 people living in Stockholm county, Swe-
den. 16,895 people, that earlier had responded to questionnaires about drinking and smoking habits, were randomly selected by age and gender. They were asked to answer an online questionnaire including the AUDIT-C (Alcohol Use Disorders Identification Test Consumption; Babor, Higgins-Biddle, Saunders, & Monteiro, 2001) and the seven DSM-IV criteria for alcohol dependence (American Psychiatric Association, 2000). The inclusion criteria were: age 18–65, resident of Stockholm County, having a hazardous alcohol consumption measured with AUDITC (cut-off > 4 for women and > 5 for men) and meeting three or more DSM-IV criteria for alcohol dependence over the last 12 months. In total, 3,648 people completed the questionnaire and 812 met the inclusion criteria. Two hundred forty-eight people agreed to be contacted regarding the study, of whom 32 participated in the study between December 2011 and May 2012. Focus Groups and Individual Interviews
The participants were allocated into focus groups according to three criteria: number of DSM-IV criteria for alcohol dependence met, age, and occupational status. Grade of alcohol dependence was defined as “low” if the participant met three or four of the DSM-IV criteria and “high” for five to seven criteria (Hasin & Beseler, 2009). Due to difficulties in recruiting participants with five to seven criteria, Group 7 was mixed in regards to occupational status. Group 2 had two participants due to a number of noshows. In total, seven focus group discussions were conducted, according to the following Table 1. Open-ended, semi-structured questions were used in the group discussions, consisting of 11 themes. The themes covered different aspects of the participants’ views on alcohol consumption, alcohol problems and dependence, treatment options and settings. The focus group discussions lasted 50–80 minutes and were led by a moderator and assisted by a secretary. At the end of each focus group discussion, participants were offered the chance to be interviewed individually; 31 of 32 participants showed interest. Two participants from each group were randomly chosen and asked to participate, of whom two declined. In total 14 individual interviews, that lasted 30–60 minutes, were carried out. The same questions as in the focus groups were used, with additional focus on the
TABLE 1. Details of focus group participants Group
Number of participants (female; male)
Grade of alcohol dependence
1 2 3 4 5 6 7 Total
4 (1; 3) 2 (0; 2) 4 (2; 2) 5 (3; 2) 7 (5; 2) 5 (1; 4) 5 (2; 3) 32 (14; 18)
Low High Low Low Low Low High
AUDIT-C score
Age
Occupational status
5–8 10 4–8 4–9 5–8 5–7 4–7 4–10
22–27 36–39 40–62 18–27 23–34 22–34 41–56 18–62
Student Employed Employed Student Unemployed Employed Employed and unemployed
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individual’s experiences of alcohol problems, personal views on treatment and treatment-seeking. All focus groups and interviews were audio taped and transcribed verbatim. Participants in both focus group discussions and individual interviews were given verbal and written information about the study, and gave written consent. All sessions were conducted at a specialist alcohol clinic in Stockholm.
focus groups there were examples of how treatment seeking is seen as surrendering to the stereotypical identity of “the alcoholic”, typically characterized as a drunkard on a park bench:
Analysis This study is grounded in social constructionist epistemology, the presupposition of the social construction of reality (Burr, 2003). Reality is seen as continuously reconstructed through language, rather than independently existing and represented by language. Language is considered a social phenomenon, which both structures our experiences of the world and also gives it meaning. Meaning is thus relational, contextually dependent, and constantly changing. The analysis was made using thematic analysis as described by Braun & Clarke (2006). Data were read repeatedly to identify categories of relevance to the research aim. These categories were then grouped accordingly to coherence in topic, as well as in relation to the research aim, and themes were thereby constructed. The themes were defined as a result of interplay between the data, research aim, and theory. Themes were topics that reoccur in the whole dataset, as well as being of high relevance to the discussions. Two researchers conducted the sampling as well as the analysis, and in order to eliminate ambiguities and to reach consensus, the authors constantly discussed the construction of themes and their interpretation. The study has been approved by the Regional Ethics Board of Stockholm.
Interviewer: No.
RESULTS
Two main themes; “Barriers to treatment” and “Assessing treatment alternatives”, each with four subthemes, were identified through analysis of the transcripts from the focus groups and the interviews. The results from the individual interviews mainly corroborate the findings from the focus groups, but contain more personal narratives compared with the focus group discussions. There were few differences found in the data in regards to participants’ grade of alcohol dependence, age, and occupational status. The differences that were found are commented upon in each theme. Barriers to Treatment
Stigma A dominant theme throughout all focus groups as well as in the individual interviews was how problematic drinking, alcohol dependence, and seeking treatment are closely related to shame and stigma, a recurring theme in the literature (Grant, 1997; Corrigan, Watson, Warpinski, & Gracia, 2004; Room, 2005; Schomerus et al., 2011). In several focus groups, participants discuss the importance of keeping up appearances and the need to hide problematic drinking behavior from others. Realizing the need for and seeking treatment is viewed negatively by the participants and is seen as shameful, a sign of failure. In the
Mikael: But it’s this business of seeking help you know, it is an enormous step, even more so going to residential treatment and so on, then you are, oh then you are really way down, a summer alcoholic doesn’t need help.
Peter: He isn’t feeling well Interviewer: But who is being shameful, what is shameful about this, because you. . . Mikael: I think this is old and bound by tradition and has always been seen to be, this is a person who has completely failed at life and can’t manage to support himself or his family and loses his job and sits boozing all day on a park bench. It can’t be more shameful. Peter: Yes, but you have the stigma there you know. Focus group 7
Treatment seeking is linked to failure and also social deprivation, whereon the stigma is based. By admitting to having problems with alcohol and seeking treatment a change of identity takes place, gravitating toward the stereotype of “the alcoholic.” The participants tended to moderate this clich´e by adding that anyone could be alcohol dependent and that dependence does not necessarily lead to social deprivation. Still, this stereotype persists throughout the sessions, thus maintaining the stigmatization of the dependent person. Alcohol as a Bad Habit When different barriers to treatment were discussed, some participants mentioned a preference for a change of lifestyle without treatment. Problematic alcohol consumption was thus constructed as a bad habit which is triggered by certain contexts, like restaurants and nightclubs, and can be altered by changes made in everyday life. The wish to handle alcohol use on one’s own as a reason for not seeking treatment is also reported by Cunningham et al. (1993). Total Abstinence A common view, especially in the age group 18–34, was that seeking treatment required total abstinence from alcohol—often for the rest of one’s life. This perceived requirement was seen as a barrier to seeking treatment, as participants were more open to cutting down or drinking in moderation rather than total abstinence. Health Concerns about health impacts of alcohol use were mainly absent in the discussions, especially regarding physical health effects. In the high-dependent groups, negative effects on mental health were mentioned as an indicator of problematic drinking behavior and were seen as a reason to seek treatment: Fredrik: I d say, as I said before, the psychological health in that case. Physically I can t see, well, I haven t had a sick day in years.
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I go to work, work quite a lot. I exercise; I always bike, I run tens of kilometres a week in a pretty good time.
Focus group 2 However, in general, the connection between health and alcohol use seem to be a nonissue for the participants, a phenomenon also mentioned by Cunningham et al. (1993) and Grønkjaer et al. (2011). Assessing Treatment Alternatives
Sparse Knowledge About Treatment As a part of the focus group discussions, the moderator presented the most common treatment alternatives for alcohol use disorders. A majority of the participants were surprised about the variety of treatment options and expressed scant knowledge about the content of treatments. Different Types of Treatment The participants were generally negative toward internetbased treatment or telephone help lines, as they did not think these types of treatment had any effect on drinking. They preferred a personal meeting; however, the aforementioned interventions were identified as suitable first steps before entering treatment, both to assess one’s alcohol use and to receive guidance to suitable treatment. Pharmacological treatment was viewed negatively by the participants. A common reason expressed was that medication merely targets the symptoms without addressing the underlying problems. In order to make a full recovery one must understand the cause, preferably through psychotherapy. This implies that the habit of drinking in itself is not perceived as the core problem, rather that there are underlying reasons that have to be dealt with. Psychotherapy was the treatment that most participants were positive towards and would prefer. Disulfiram was the most well-known pharmacological treatment. Participants viewed this as a treatment for people with severe dependence and that they would have little choice in the treatment. Almost all the participants were negative to using Disulfiram themselves. Acamprosate and Naltrexone were mainly unheard of, but commented upon as attractive alternatives: Oskar: [. . .] I have my mate, what’s it called, yes his godfather for instance is a superalcoholic, and this was really the last resort, to have Antabuse implants. After that he continued drinking anyway. So, for me, I kind of associate it with severe alcoholism, it would have been tough to realise that this is where you are. Interviewer: But the other medications? Oskar: They sound a lot better actually. Just going by the little I’ve heard sort of, these I could consider. Simon: It’s a bit like Nicorette [Nicotine replacement chewing gum] Oskar: Yes, exactly, so you can have a drink at a social event without having to go to the loo to puke kind of. Focus group 5
As Acamprosate and Naltrexone impose considerably fewer restrictions than Disulfiram, they are much preferred by the participants, and seen as less stigmatiz-
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ing. Disulfirams pharmacological properties and the perceived lack of choice in its use mean high restrictions on personal agency and body, which was viewed very negatively by the participants. Residential treatment was a well-known treatment option, but seen as a final way out when other treatments have failed. Alcoholics anonymous (AA) was the best known self-help group, and opinions about this option were divided; some participants argued help from peers with their own experience of alcohol problems is valuable and effective, while others preferred to see a professional expert. For some participants, these two alternatives were seen as equally desirable: Erik: But if you go to the doctor you want a specialist or someone who knows a lot. I most trust the person who either has personal experience of what you re seeking help for, or someone who s a specialist in the area, who should know everything.
Focus group 1 Components of Attractive Treatment The variety of treatments was viewed positively by the participants, as individual factors such as degree of alcohol dependence, personality traits and personal preference were considered as important factors for the suitability of treatment type. An important component of attractive and effective treatment was confidence in the care provider. Factors that generated confidence vary from participant to participant, examples given were; experience of treating alcohol problems, expert knowledge, and supportiveness. Components of attractive treatments were: easy access without bureaucracy, methods with a high degree of autonomy, as well as treatments that make it possible maintaining everyday life during treatment. Treatment Settings Specialist clinics were favored by participants, primarily due to the perception that expert knowledge is required to deal with alcohol dependence. Treatment in primary care evoked different responses; some were negative as they thought primary care lacked expertise. Others, especially participants in the age group 40–65 years, viewed primary care as an attractive option, saying that it would be a smaller step to take and less stigmatizing compared with specialist clinics, where one would be an identified alcohol patient. Tucker, Foushee, & Simpson (2008) recommend primary care as an appropriate setting, especially for people with mild to moderate alcohol problems, and emphasise that the lack of public knowledge about this alternative is a barrier to treatment. Participants that were students viewed student health services as an attractive option with easy access. Treatment in occupational health care was often absent in the discussions, or seen as less appealing than the other alternatives. Several participants mention fear of negative career impact, if their employer found out about an alcohol problem. Brewer (2006) reported similar findings about alcohol-dependent women’s recovery process, where
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participants expressed a need to hide their condition due to shame and fear of negative consequences for their careers. During the individual interviews, the participants shared personal experiences of problematic alcohol use, and several expressed that this was easier to talk about individually. The analysis of these interviews confirmed the main findings from the focus groups and moreover, some of the participants shared their own experiences of treatment. However, views on treatment were sparse and when asked why, some participants stated that discussing treatment was easier in a group setting rather than individually as their personal knowledge of the alternatives often was limited. DISCUSSION
This study investigated how people with alcohol dependence discuss treatment, and their reasons for seeking and not seeking treatment for alcohol dependence. All participants were recruited from the general population and screened for alcohol dependence with DSM-IV. The majority of the participants fulfilled the criteria for mild to moderate dependence and a few for severe dependence. Few differences were found in the data in regard to the participants’ grade of alcohol dependence, age, and occupational status. This indicates that the perceptions are part of sociocultural structures rather than being group specific. Dependence and Stigma
In this study, the image of the dependent person stereotyped as “the alcoholic,” someone who has lost everything because of alcohol, was highly persistent. This stigma has little connection with reality, as only a small part of the alcohol-dependent population is socially deprived. Nevertheless, this distorted view of dependence is a concrete barrier in the treatment seeking process. This stereotype may well be due to a lack of knowledge about alcohol dependence. The participants expressed ambivalence toward the stereotype’s validity, recognizing that dependence does not necessarily mean social deprivation. According to the participants, the realization that one is dependent and needs to seek treatment is accompanied by an adoption of the identity of “the alcoholic.” Similar results from drug treatment research have been made by Radcliffe & Stevens (2008); where the informants’ ambivalence to enter treatment is often in part due to a belief that “the junkie identity” will be triggered by seeking treatment. This process is comparable with what the participants in this study described, and defined as a detrimental process of marginalization by Cunningham et al. (1993), Room (2005) and Schomerus & Angermeyer (2008). However, knowledge about the effect of stigma on actual treatment seeking is limited. In an epidemiologic study, Keyes et al., (2010) found that people who perceived a high grade of stigma associated with alcohol were less likely to utilize treatment services compared with those who perceived a lower grade of stigma. A further explanation of the difference between the participants’ and the clinical assessment of dependence is that
alcohol dependence, up until now, has been defined and treated as a chronic relapsing disorder. This definition is, however, mainly based on studies of clinical populations, of severely dependent individuals. The greater population outside treatment, with mild to moderate dependence, has not been studied as extensively. Cunningham & McCambridge (2012) and Andr´easson (2012) have suggested that this clinical perspective may limit the understanding of dependence and hamper the development of differentiated treatment. Consequently, mildly to moderately dependent people are left without adequate treatment alternatives. The Impact of Knowledge on Treatment Seeking
The relationship between alcohol use and health was regarded a nonissue by the participants, which may, at least partly, be explained by the participants’ limited knowledge about the consequences of heavy drinking on health, both their own and in general. This constitutes a barrier to treatment, especially among the participants with low to moderate dependence. However, there are exceptions, as the high dependence groups mentioned that negative effects on their psychological health would be a reason to seek treatment. This finding is in accordance with other descriptions of the differences between the clinical and nonclinical population, where treatment seekers have a higher prevalence of psychiatric comorbidity (Storbj¨ork & Room, 2008; Berglund et al., 2006). Participants’ knowledge of interventions for alcohol dependence was limited to more or less involuntary treatment with Disulfiram, residential treatment and lifelong abstinence. These options were considered unappealing, making this understanding of treatment services a barrier to treatment seeking. For the participants, the main characteristics of appealing treatment were a high degree of autonomy and participation. Psychological treatment was the preferred form of treatment, which confirms the findings from an interview survey in the general Swedish population (Andr´easson, Danielsson, & Wallhed Finn, 2013b). Improved public health literacy on alcohol use, dependence and treatment options, could well lower the barriers to treatment. There are two important issues regarding treatment that need to be clarified to the public. The first is that seeking treatment does not necessarily mean lifelong abstinence from alcohol. The younger participants were especially negative toward completely giving up drinking but would consider cutting down. Controlled drinking has been found to be feasible for people with mild to moderate dependence (Witkiewitz, 2013), indicating that information about treatment options, as well as treatments themselves, need to focus more on this alternative. The second issue is to increase knowledge about pharmacotherapy, as Acamprosate and Naltrexone were unknown to most participants but were seen as attractive treatments when presented. Knowledge about alcohol dependence and treatment may, according to Schomerus & Angermeyer (2008), be equally as important as reducing stigma in increasing help seeking. Possible ways to reach this group could be via the internet and telephone help
ALCOHOL USE, DEPENDENCE, AND TREATMENT BARRIERS
lines, as they are seen as attractive first steps for assessment of alcohol use and guidance to treatment. Finally, focusing on the service providers, the findings from this study emphasize the importance of taking into account the highly negative impact of stigma on the treatment seeking process. The study highlights the importance of offering services better matched to the needs of the potential service users. One way to lower the threshold to treatment seeking may be to increase treatment for alcohol dependence in generalist health care, as this was seen as a less stigmatizing treatment option. However, primary care practices and general practitioners need to better communicate their ability to treat people with drinking problems, as their expertise in this field was often questioned. Another way to lower the threshold would be to offer a wide range of treatment options, which also take into account the desire for autonomy and participation in all treatment. Strengths and Limitations of the Study
The selection process had a considerable number of nonresponders, which is a significant limitation of the study. The setting for data collection at a specialist alcohol clinic may have had a negative effect on participation in the study. The market research company, which carried out the recruitment, did not provide further data of this process. It is therefore impossible to draw any conclusions about possible differences between responders and nonresponders. The participants stated that the focus group setting had a constraining influence and the focus groups elicited few personal accounts on drinking habits and treatment seeking. However, the participants extensively shared their own experiences, of which many can be considered as sensitive and personal, during the individual interviews. Even though the individual interviews were undertaken after the focus group discussions, the risk that the group discussions contaminated the individual interviews is considered as very low. Both the experienced interviewers, who conducted the data collection, judged that the participants’ shared personal experiences and views during the interviews that were independent of the group discussions. A majority of the participants referred to the group discussions in the individual interviews and clarified their own points of view. The aim of this study was to describe and explain how people with alcohol dependence, recruited from the general population, perceive and discuss treatment for alcohol use disorders and their reasons for seeking and not seeking treatment. One of the strengths of this study was that the participants were recruited in a nonclinical setting, and therefore included both participants who had gone through the treatment-seeking process and participants who had not. This mix of participants resulted in richer and more varied data. An additional strength of this study is the combination of different data sources. Focus groups were used to capture socially constructed representations and group dynamics to elicit discussion. This proved to be fruitful
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when the participants talked about issues largely unknown to them and generated extensive discussions about issues that elicited limited response in the individual interviews. The individual interviews generated personal narratives and thereby served as comparison to the focus group sessions. CONCLUSION
To help people reflect on and adequately assess if their drinking habits require treatment, the clinical world needs a better understanding of the population of people with mild to moderate alcohol dependence. A consumeroriented approach is key to addressing these peoples’ values and thereby facilitate access to treatment, by reducing stigmatization and increasing public health literacy. Moreover, this approach may enable the development of treatments that better meet the needs of this population. Future research should aim to investigate how different aspects of stigma and public health literacy regarding alcohol dependence, influence actual treatment seeking. Declaration of Interest
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article. THE AUTHORS Sara Wallhed Finn is a clinical psychologist at a specialized alcohol clinic, Riddargatan 1, within the Stockholm Centre for Dependency Disorders. She is also a doctoral student of Social Medicine at Karolinska Institutet, Stockholm. Her doctoral education is focused on treatment preferences and treatment methods for people with moderate alcohol dependence. She is a co-author on publications about preferences for treatment and also SUD and ADHD.
Ann-Sofie Bakshi has a PhD in Communication Studies. Her main research area is implementation processes in health care systems. Another research interest is the societal impact of policy and political regulation in relation to equity in health, where she has done research and evaluations on the behalf of the Swedish government and the European Union.
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Sven Andr´easson, MD, PhD, Professor of Social Medicine at Karolinska Institutet Head of Riddargatan 1, alcohol clinic within the Stockholm Centre for Dependency Disorders. Senior consultant at the Swedish Public Health Agency and at the National Board of Health and Welfare. Member of the board of Systembolaget, the Swedish alcohol retail monopoly. Chairman of the Swedish Alcohol Policy Forum. His research focuses on the epidemiology, prevention, and treatment of alcohol and drug related disorders.
GLOSSARY
Acamprosate and Naltrexone: Pharmacological treatments for alcohol dependence, which reduce alcohol consumption and the risk for heavy drinking. These do not cause unpleasant somatic reactions in conjunction with alcohol use. Disulfiram: The oldest of pharmacological treatments for alcohol dependence, and also known under its generic name “antabuse.” Disulfiram inhibits the liver enzyme aldehyde dehydrogenase, which causes unpleasant somatic reactions in conjunction with alcohol use. Focus group: A method for data collection, where a moderator leads a group discussion about a specific topic. The participants are encouraged to interact and discuss the topic with each other. Social constructionist: An approach within the social sciences that views reality as a social construction through language. REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders, (4th Ed., Text Revision). Washington, DC: American Psychiatric Association. Andr´easson, S. (2012). Misleading conclusions from clinical research. Addiction, 107(1), 13–14. Andr´easson, S., Danielsson, A. K., & Hallgren, M. (2013a). Severity of alcohol dependence in the Swedish adult population: Association with consumption and social factors. Alcohol, 47(1), 21–25. Andr´easson, S., Danielsson, A. K., & Wallhed Finn, S. (2013b). Preferences regarding treatment for alcohol dependence. Alcohol and Alcoholism, 48(6), 694–699. Babor, T. F., Higgins-Biddle, J. C., Saunders, J. B., & Monteiro, M. G. (2001). AUDIT, The alcohol use disorders identification test. Guidelines for use in primary care (2nd ed.). Geneva: World Health Organization. Barbour, R. S., & Kitzinger, J. (1999). Developing focus group research. Politics, Theory and practice. London: SAGE Publications. Berglund, K., Fahlke, C., Berggren, U., Eriksson, M., & Balldin, J. (2006). Individuals with excessive alcohol intake recruited by advertisement: demographic and clinical characteristics. Alcohol and Alcoholism, 41(2), 200–204.
Blomqvist J., Cunningham, J., Wallander, L., & Collin, L. (2007). Att f¨orb¨attra sina dryckesvanor − om olika m¨onster f¨or f¨or¨andring och om vad v˚arden betyder. En rapport fr˚an projektet “L¨osningar p˚a alkoholproblem”. [Improving drinking habits – different patterns of change and the importance of treatment]. Stockholm University, Centre for Social Research on Alcohol and Drugs (SoRAD), 7, 1–147. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. Brewer, M. K. (2006). The contextual factors that foster and hinder the process of recovery for alcohol dependent women. Journal of Addictions Nursing, 17(3), 175–180. Burr, V., (2003). Social constructionism. (2nd ed.) East Sussex: Routledge. Cohen, E., Feinn, R., Arias, A., & Kranzler, H. R. (2007). Alcohol treatment utilization: Findings from the National Epidemiologic Survey on Alcohol and Related Conditions. Drug and Alcohol Dependence, 86(2–3), 214–221. Copeland, J. A. (1997). A qualitative study of barriers to formal treatment among women who self-managed change in addictive behaviours. Journal of Substance Abuse Treatment, 14(2), 183–190. Corrigan, P. W., Watson, A. C., Warpinski, A. C., & Gracia, G. (2004). Stigmatizing attitudes about mental illness and allocation of resources to mental health services. Community Mental Health Journal, 40(4), 297–307. Cunningham, J. A., & McCambridge, J. (2012). Is alcohol dependence best viewed as a chronic relapsing disorder? Addiction, 107(1), 6–12. Cunningham, J. A., Sobell, L. C., Sobell, M. B., Agrawal, S., & Toneatto, T. (1993). Barriers to treatment: Why alcohol and drug abusers delay or never seek treatment. Addictive Behaviors, 18(3), 347–353. Dawson, D. A., Grant, B. F., Stinson, F. S., & Chou, P. S. (2006). Estimating the effect of help-seeking on achieving recovery from alcohol dependence. Addiction, 101(6), 824–834. Grant, B. (1997). Barriers to alcoholism treatment: Reasons for not seeking treatment in a general population sample. Journal of Studies on Alcohol, 58(4), 365–371. Grønkjær, M., Curtis, T., De Crespigny, C., & Delmar, C. (2011). Acceptance and expectance: Cultural norms for alcohol use in Denmark. International Journal of Qualitative Studies on Health and Well-being, 6(4), 8461–8472. Hasin, D. S., & Beseler, C. L. (2009). Dimensionality of lifetime alcohol abuse, dependence and binge drinking. Drug and Alcohol Dependence, 101(Suppl 1), 53–61. Keyes, K. M., Hatzenbuehler, M. L., McLaughlin, K. A., Link, B., Olfson, M., Grant, B. F. & Hasin, D. (2010). Stigma and treatment for alcohol disorders in the United States. American Journal of Epidemiology, 172(12), 1364–1372. Radcliffe, P., & Stevens, A. (2008). Are drug treatment services only for “thieving junkie scumbags”? Drug users and the management of stigmatised identities. Social Science & Medicine, 67(7), 1065–1073. Rehm, J., Mathers, C., Popova, S., Thavorncharoensap, M., Teerawattananon, Y., & Patra, J. (2009). Global burden of disease and injury and economic cost attributable to alcohol use and alcoholuse disorders. Lancet, 373(9682), 2223–2233. Roerecke, M., & Rehm, J. (2013). Alcohol use disorders and mortality: A systematic review and meta-analysis. Addiction, 108(9):1562–1578. Room, R. (2005). Stigma, social inequality and alcohol and drug use. Drug and Alcohol Review, 24(2), 143–155.
ALCOHOL USE, DEPENDENCE, AND TREATMENT BARRIERS
Schomerus, G., & Angermeyer, M. C., (2008). Stigma and its impact on help-seeking for mental disorders: What do we know?. Epidemiologia e psichiatria sociale, 17(1), 31–37. Schomerus, G., Lucht, M., Holzinger, A., Matschinger, H., Carta, M., & Angermeyer, M. C., (2011). The stigma of alcohol dependence compared with other mental disorders: A review of population studies. Alcohol and Alcoholism, 46(2), 105– 112. Storbj¨ork, J., & Room, R. (2008). The two worlds of alcohol problems: Who is in treatment and who is not? Addiction Research and Theory, 16(1), 67–84.
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Tucker, J. A., Foushee, H. R., & Simpson, C. A. (2008). Public perceptions of substance abuse and how problems are resolved: Implications for medical and public health services. Southern Medical Association, 101(8), 786–790. Tucker, J. A., Foushee, H. R., & Simpson, C. A. (2009). Increasing the appeal and utilization of services for alcohol and drug problems: What consumers and their social network prefer. International Journal of Drug Policy, 20(1), 76–84. Witkiewitz, K. (2013). “Success” following alcohol treatment: Moving beyond abstinence. Alcoholism: Clinical and Experimental Research, 37(Suppl 1), 9–13.
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