surveying the drug service users' perspective through self-help groups

Journal of Community & Applied Social Psychology, Vol. 4,131-140 (1994)

Surveying the Drug Service Users’ Perspective Through Self-Help Groups

JOHN TOUMBOUROU, MARGARET HAMILTON Drug and Alcohol Research Team, Department of Public Health and Community Medicine, The University of Melbourne, 243 Grattan St., Carlton, Victoria, 3053, Australia.

and

RICHARD SMITH Dandenong Needle Exchange Program.

ABSTRACT

Survey data is presented from a questionnaire designed and distributed through Victorian drug self-help groups. This survey yielded 203 returns representative of Melbourne metropolitan admissions to drug treatment services on the variables of sex and region. The survey is examined both from the perspective of its methodological potential for providing entry to this hard-to-access population and also on the basis of its findings. Questioning of this sample concerning the difficulties they had encountered when seeking help revealed that the most frequently listed difficulties were waiting periods for access to services. Respondents that had previously used particular services were asked how beneficial they had found these services: Respondents most frequently listed self-help groups, residential and methadone services as beneficial and least frequently listed medical (hospital casualty) and doctor services as beneficial. Stepwise logistical regression revealed six variables significantly predicting self- help treatment. Those reporting having sought self-help groups were predicted by more frequently listed problems with alcohol and ‘over the counter’ drugs, reports of having sought counselling services and more frequently reported difficulties due to a lack of information and admission restrictions when seeking services. Despite a number of methodological weaknesses identifiable in the survey, experience with this project suggested collaboration between researchers and those active in self-help networks as a useful model for future research into the drug service users perspective. Such collaboration should, however, begin at an earlier phase than occurred in the present study.

This paper examines a research project conducted in collaboration between researchers and self-help group members. A survey designed and conducted by self-

The authors wish to acknowledge the support of the SHASU Committee for permitting access to the data reported in this paper.

CCC 1052-9284/94/02013 1-10 0 1994 by John Wiley & Sons, Ltd.

132 J. Toumbourou et al.

help groups and then analysed by professional researchers is described and critically examined. Experience conducting this survey suggested that collaboration between self-help groups and researchers may prove useful as a method of reaching otherwise hard to access drug user populations.

In a number of service areas client perceptions of service adequacy have been, for some time, an integral component of service evaluation (Kiresuk and Lund, 1978). It is only relatively recently, however, that the service users’ perspective has been sought in the planning and evaluation of drug treatment services (Lowinson, Ruiz, Langrod and Martinez, 1981; Ottomanelli and Halloran, 1982; Agar, 1985; Hunt, Lipton, Goldsmith, Strug and Spunt, 1985-6; Jordan, Roszell, Calsyn and Chaney, 1985; Nurco, Shaffer, Hanlon, Kinlock, Duszynski and Stephenson, 1987; Oppenheimer, Sheehan and Taylor, 1988).

Lack of attention to the client perspective is an important omission: There is evidence that negative client perceptions can dramatically reduce treatment recruitment (Hunt et al., 1985-6; Fram, Marmo and Holden, 1989). Further evidence suggests that developing services in consultation with clients can increase recruitment (Jordan et al., 1985).

In attempting to survey the service users perspective, both the population currently accessing services and those that may, for various reasons, be experiencing barriers to treatment are relevant. A number of studies have now been conducted examining in-treatment populations (Lowinson et al., 198 1). Examining clients currently using services provides, however, only one perspective on service delivery. An alternative method of obtaining information on the treatment-relevant experiences of these populations has been to attempt to survey them directly by gaining access to established networks outside of the formal treatment systems. Identifying and gaining entry to these networks is not straightforward, however.

Attempts to access user groups have included Waldorf and Biernacki’s (198 1 ) snowball sample of untreated New York addicts, Hunt et ul.’s (1985-6) survey of narcotic users not in treatment and Agar’s (1 973) ethnographic fieldwork with urban heroin addicts. While snowball sampling techniques have now been utilized in a number of studies, it should be recognized that these techniques often rely themselves on current service users as their starting point.

An increasingly important network in the drug treatment field is that provided by the self-help movement (Ashery, 1979; Peyrot, 1985). Individuals in these groups are often in close communication with current drug users and can provide a relatively efficient point of access to these populations. Their experience as ex-users alleviates the suspicion that they may be police informants or have in some other sense, an ulterior motive for asking questions. In addition the ‘ex-drug user’ status of many of the individuals involved with these groups means that they themselves have a potentially important perspective to offer concerning the future development of drug treatment services.

Following Katz and Bender’s (1976) definition, the term self-help refers both to groups primarily engaged in support and also those devoted mainly to advocacy work. As advocates for service users, members of self-help groups would appear to have a somewhat unique perspective regarding service provision.

There is no published research detailing the range of self-help drug treatment groups in Victoria. Based on published and unpublished information provided by self-help groups it can be estimated that currently active drug self-help groups in

The drug users’ service through self-help groups 133

Victoria consist of around 40 Narcotics Anonymous meetings and a smaller number of other groups consisting of programmes such as Women for Sobriety, Understand- ing Support Society and political advocacy lobbies such as Users Union (advocating the decriminalization of heroin use). In addition to these groups there are around 280 Alcoholics Anonymous (AA) meetings active in Victoria (although AA groups cater mainly for those with alcohol problems, other drug users are not excluded from participating).

In Victoria, following funding from the National Campaign Against Drug Abuse, the Self-Help and Substance Use Committee (SHASU) was formed. SHASU func- tions somewhat along the lines of a collective, offering a resource service including a forum for the co-ordination and advocacy of drug treatment self-help groups. In 1988 SHASU received funding through the Victorian Drug Rehabilitation and Research Fund to survey drug-service users regarding their views on current and future drug services.

METHOD

The survey reported below was designed and implemented collectively by members associated with self-help groups in the Victorian drug treatment community, rather than by professional researchers. The survey was initiated following concerns, from SHASU group members, that emergency drug treatment services were inadequate in Victoria. Mr Richard Smith, a worker with well established links with self-help groups in Victoria, was employed to conduct both the study, presented below and another study examining the views of service providers (SHASU, 1989).

Procedure Wadsworth’s (1984) description of action research was selected as a basic framework guiding the conduct of the research. A committee was formed bringing together a group of professionals and self-help group members. The questions and the questionnaire were developed by the research worker in collaboration with this committee. The format and wording of the questionnaires used in the survey were designed with the language of service users in mind. A preamble at the head of each questionnaire referred to the project investigating the feasibility of establishing a ‘24 Hour Drug Crisis Centre’. Questions covered details of drug use, experience seeking treatment assistance, demographic information and a number of items examining views relevant to the need for the Drug Crisis Centre. The data reported below can thus be described as incidental information collected in the process of investigating drug service user views regarding the need for service development (SHASU, 1989).

All Victorian non-alcohol drug self-help groups (and some relevant AA groups) known to SHASU were contacted either by the project officer or another member of the committee. In most cases groups were visited and the importance of the study explained. Questionnaires were either completed at the time of the visit or left to be distributed by the groups to users and ex-users they knew of. Although an attempt was made to follow-up and collect distributed questionnaires detailed records were not kept regarding the location or number of questionnaires distributed.

In addition, users from three alcohol and drug service agencies within each of


eight health department regions were targeted for survey. Specifically, the sampling strategy aimed to include one residential, one counselling and referral agency and one detoxification programme in each region. Questionnaires were left at these agencies for service users to complete and return.

The two senior authors became involved with this project, as research consultants, at the point of data analysis and report writing. The SHASU management committee became concerned at this point that their committee might not have the expertise necessary to present a report of acceptable professional standards.

After checking the questionnaire coding an attempt was made to compare the distribution of returns with state health department data. Analysis of returns revealed that responses had been fairly poor from country regions. Consequently, for the purposes of this paper, only returns from Melbourne metropolitan regions are analysed.

Sample At the end of the survey in early 1988, 203 useable returns had been obtained from Melbourne metropolitan regions. Of this sample 61% were male. The average age of the sample was 30.4 (standard deviation 8.3) years. Of this sample, 51% described themselves as still actively using drugs.

Beginning in 1987 the state health department had requested drug and alcohol treatment agencies to complete standard admission records. From 1987 to 1988 these records were filled out by agencies and input onto computer centrally by the health department (Health Department Victoria, 1988).

The characteristics of the SHASU sample were compared with the Health Depart- ment population on the variables of sex, age and region of address. Chi-square testing revealed no significant differences between the two groups with respect to the sex and region variables. The age distributions of the two groups demonstrated differences, however, with the survey sample significantly older than the population admitted to services (p < 0.05).

RESULTS

Respondents to the survey were presented with a list of five categories of drugs. They were then asked ‘Which of these drugs would you say you have had a problem with?’. Table 1 provides details of the drug categories used in the survey together with responses.

As indicated in Table 1, the large majority of those surveyed (81%) reported problems with ‘illegal drugs’. A large proportion (59%) reported problems with more than one category of drugs.

Respondents were asked to indicate, using a fixed response format, ‘What assistance have you sought to date’. A further question then asked respondents to indicate ‘Which of the above did you find beneficial?’ The responses to these questions are presented in Figure 1.

The service categories that were selected by the committee, in the questionnaire development workshops, are presented in Figure 1. The services most frequently listed as sought were detoxification, doctors and counselling. Among those claiming to have sought such services, self-help groups were most frequently listed as beneficial.

The drug users’service through self-help groups 135

Table I.

Which . . . drugs would you say you have had a problem with?

Drugs reported as ‘problem’

Number (%)*

Prescribed drugs (e.g. Serapax, Valium, etc) 75 (37%) Alcohol 96 (47%) Illegal drugs (e.g. heroin, cannabis, Speed, etc.) 164 (81%) ‘Over the counter’ drugs (e.g. codeine, cough mixture, etc.) 35 (17%) Methadone 37 (18%) Respondents listing combinations of two or more drug categories

* Note response categories are not mutually exclusive. Percentages are calculated using the total sample as base.

1 18 (59yo)

Treat men t Type

Self Help

Counselling

Detoxification

Residential

Medical

Doctors (eg. Hospital, Casualty)

Methadone

Other

Assistance sought Perceived benef i t

70 60 50 40 30 20 10 0 10 20 30 40 50 60 70

Percent age Percentage

Figure 1. Treatment services sought and perceived benefits.

A relatively high percentage of those reporting having sought such services rated both residential and methadone services as beneficial. Medical and doctor services were rated as beneficial by a relatively small percentage of those claiming to have sought these service types.

Respondents were also asked to indicate the difficulties they had encountered previously when seeking help. Responses to these questions are presented in Table 2. The most frequently endorsed difficulties respondents reported having encountered when seeking help were waiting periods and service not open when needed.

Figure 1 demonstrates that the sample could be almost evenly divided between those that reported having sought self-help services previously and those that had not (of those surveyed 101 (49.8%) reported having sought self-help group treatment up to the time of the survey). Recognizing the lack of published information regarding

136 J. Tournbourou et al.

Table 2. Difficulties encountered when seeking help

Which difficulties have you encountered when seeking help?

Waiting period (i.e. appointment needed) No suitable programme or service

Number (%)

137 (68%) 62 (31%)

Not open when needed 101 (50%)

Lack of information 85 (42%) Family responsibilities 41 (20%) Admission restrictions 72 (36%) Other difficulties (please specify) 55 (27%))

Table 3. (odds ratios and 95% confidence intervals)

Summary of stepwise regression analysis predicting having sought self-help groups

Significant (p < 0.05) predictors of having sought self help groups

~ ~ ~

Had a problem with alcohol Had a problem with over the counter drugs (e.g. codeine, cough mixture etc.) Sought counselling services Encountered lack of information Encountered admission restrictions

Odds ratio 95% Confidence interval

3.3 1.7-6.3

1.1-6.8 2.7 2.4 1.3-4.6 2.1 1.1-4.0 2.2 1.1-4.3

drug self-help groups, the authors determined to examine more closely the characteristics of the self-help respondents.

Post-hoc testing for differences between the self-help and non-self-help respondents revealed a number of significant differences between these groups. As many of the variables associated with seeking self-help were themselves interrelated, stepwise logistic regression was employed to analyse the data.

The predictor variables included demographic, drug use and service history variables. The two demographic variables were sex and age. The drug use variables were those described in Table I and the service usage variables were those described in Figure 1 and Table 2. Each of the variables employed in this analysis were bivariate except for age which incorporated five categories.

At the completion of the stepwise procedure the combined effect of six variables in the prediction of seeking self-help was found to be highly significant X&) = 44.1, p < 0.001). Table 3 presents details of odds ratios for the regression analysis conducted. The regression equation resulting from the variables listed in Table 3 was found to accurately classify the reported self-help status of respondents in 64.3% of cases. Those reporting having sought self-help groups were predicted by more frequent reports of problems with alcohol and ‘over the counter’ drugs. They also more frequently reported having sought counselling services and more frequently reported difficulties due to a lack of information and admission restrictions when seeking services. Examination of odds ratios revealed that those reporting problems with alcohol were 3.3 (95% confidence interval between 1.7 and 6.3) times more likely

The drug users’ service through self-help groups 131

to indicate having sought self-help services compared to those not reporting alcohol problems.

DISCUSSION

It is difficult to determine how adequately the survey reported in this paper represented the characteristics of Melbourne’s service user population. The evidence suggested that on at least two important variables (sex and region) the sample characteristics closely parallel current treatment populations.

Two lines of evidence from the present study suggested that the population surveyed by SHASU could, perhaps, be most appropriately categorized as an ex-treatment population. First, the surveyed group demonstrated an older average age than those admitted to treatment and, second, 81% of the sample reported having sought more than one service previously.

The process used to conduct this research is worthy of analysis. Because the research questions and questionnaire were formulated in consultation with service users, the language and categories used to describe types of drugs and to distinguish service types are of particular interest. The categories used to describe drug use are presented in Table 1. It is interesting that the categories selected for use in the survey tended to refer to the method used to obtain the drugs described (i.e. illegally or from pharmacies with and without prescriptions). This method of classification is different to the pharmacological categories preferred in research and treatment studies (Darke, Ward, Hall, Heather and Wodak, 1991).

Fixed response categories were also used to assess ‘assistance sought to date’. The categories used to describe previous services are presented in Figure 1. Once again, there are differences between these categories and those recommended by professional researchers. The fact that the services of doctors were among the more frequently sought sources of assistance questions the practice of ignoring this service category in research protocols (Darke et al., 1991). These discrepancies suggest some perceptual distance may separate the views of researchers and service users.

The results of the survey provide some indication as to how current services are evaluated by service users. Respondents reported having sought help from a variety of services (Fig. 1). When asked to list which of these services they found beneficial respondents most frequently reported having found self-help, residential and methadone services beneficial. Both medical (hospital casualty) and doctor’s services were reported relatively infrequently as beneficial. This finding is important, given the large proportion of respondents who reported having sought doctor services.

The high proportion of respondents indicating their experience with self-help groups to have been beneficial is perhaps not surprising: The sampling strategy relied heavily on participants involved with the organization of self-help groups for the distribution and collection of questionnaires. Given this bias the present survey cannot be said to provide a representative indication of client perceptions of self-help groups. It is important to note, however, that we currently have very little information on self-help groups (Heather and Tebbutt, 1989).

The high proportion of respondents indicating their experience with residential and methadone services as beneficial and the low proportion indicating medical and doctor services as beneficial cannot be so easily dismissed on the basis of sampling


bias. The strong service user endorsement for both residential and methadone services as beneficial parallels the findings of recent research examining ex-users ratings of service ‘helpfulness’ (Simpson and Sells, 1990).

The finding, in the present survey, that despite a large proportion reporting using doctor services, few list them as beneficial, deserves careful consideration. In Victoria general practice forms an important network for both primary service referral and methadone distribution. Lack of detail on the questionnaire used to conduct the SHASU survey makes it difficult to determine what was actually meant by doctor services. The survey listed separate categories for ‘methadone’ services and ‘doctor’ services. Yet given the expansion in the private practitioner methadone programme that occurred around the time the survey was run it is likely that many of the doctors sought for treatment would have been also dispensing methadone.

For example, from 1986 to 1988 the number of permits for methadone distribution issued by the Victorian health department increased fourfold from 207 to 821. This programme expansion occurred primarily in private practitioner programmes, including general practitioners and psychiatrists (Burgess, Gill, Pead and Holman, 1990).

One obvious way of interpreting the categories used in the survey is to distinguish between doctors distributing methadone and specialist methadone programmes. Such an interpretation would support the concerns of Burgess et al. (1990), who have argued that private practitioner methadone programmes in Victoria, provide an infer- ior treatment compared to specialist methadone programmes. The finding that, although service is commonly sought from general medical services (including doctors), these services are not frequently perceived to be beneficial supports the call of Burgess et al. (1990) for further research into the operation of these generalist services.

In addition to investigating client perceptions of how beneficial they found particular services the present survey also examined client experiences accessing services. The most frequent difficulty reported as encountered by respondents in their attempts to seek help were waiting periods (Table 2). While the survey methodology makes it difficult to assess the number affected, the results certainly suggest that, for a section of service users, obtaining immediate access to services in times of need is an important priority.

Comparative analyses of the characteristics of those reporting seeking help through self-help groups demonstrated a number of differences. The self-help group were characterized by a wider range of drug problems and were more likely to have sought counselling services. Difficulties with a lack of information and with admission restrictions to services were more frequently reported by this group.

Emrick (1987) has found previously that those using AA groups were more likely to be using drugs in addition to alcohol. The present study suggests the intriguing possibility that those using drug self-help groups may themselves be more likely to have experienced alcohol problems.

The advantages of conducting drug research in partnership with indigenous populations is receiving increasing recognition (Power, Harkinson, Turnbull and Crosier, 1991). The present study was conducted by a users group and their self-help advocates, initially with no professional researchers involved. The resulting study was returned by a reasonably large number of service users (and ex-users) from a representative range of geographic service regions. The large number of returns is encouraging given that this population are generally regarded as difficult to access.

The drug users’service through self-help groups 139

The methodology used to develop the survey provided insight into the language and categories preferred by this section of service users. Perhaps most importantly the survey raised awareness of service users’ experience with treatment services; par- ticularly the existence of frustration with waiting lists and their desire for more immediate access to services.

Balanced against these important strengths it must also be noted that the methodology used in carrying out this research exhibited a number of avoidable weaknesses: For example, records were not kept of the location of circulated questionnaires, details and procedures of group meetings were not recorded systematically, the questionnaires used in the study asked leading questions and items were not assessed regarding their reliability and validity. These weaknesses make it difficult to generalize confidently from this survey to the wider population of potential service users.

Many of the weaknesses listed above could have been avoided had the committee consulted with experienced researchers at the initiation of their project. Whether consulting with such researchers would have detracted from the strengths represented by user involvement would depend, in our view, on the willingness of the chosen researcher to work in partnership with self-help members without taking control. This view of research professionals as consultants and partners to self-help groups is supported by Stewart (1990) in her review of this subject.

CONCLUSIONS

The method used to derive the information reported in this research is of interest, as are the results. To date, drug self-help group networks have not been extensively used as a means of accessing service users perceptions, despite the fact that they constitute an elaborate social network linking active drug users and others in society.

The findings from the above research provide further support for the view that both residential and methadone services are regarded by service users as amongst the most beneficial of available service options. While in the present survey questions remain as to how far these results can be generalized, the fact that previous research has reached similar results increases confidence in these findings.

The results of this survey suggest that an important difficulty experienced by service users attempting to access services are waiting periods and opening hours. Methodo- logical considerations make it difficult to be confident that these results can be generalized broadly to potential service users. The findings certainly suggest the need for further investigation in these areas.

Those involved with self-help groups have a legitimacy with those actively using illicit drugs that is qualitatively different to that of professional researchers. The collaborative model of research practice outlined in this paper offers a useful framework for future research with drug treatment populations. A collaboration that began at an earlier point in the research design would avoid many of the weaknesses in evidence in the present study.

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