Pathways for culturally diverse clients with cannabis use and mental health issues

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1 FINDING THE RIGHT HELP: Pathways for culturally diverse clients with cannabis use and mental health issues Ian Flaherty and Connie Donato-Hunt: The Drug and Alcohol Multicultural Education Centre Anthony Arcuri and John Howard: The National Cannabis Prevention and Information Centre

2 Suggested citation: Flaherty I, Donato-Hunt C, Arcuri A & Howard J Finding the right help: Pathways for culturally diverse clients with cannabis use and mental health issues. DAMEC & NCPIC, Sydney. ISBN: For a copy of the full report or for any enquiries regarding this research contact: The Drug and Alcohol Multicultural Education Centre PO Box 2315 STRAWBERRY HILLS NSW 2012 This project was funded by the NSW Health Department and supported by NADA. DAMEC is funded by the NSW Health Department. NCPIC is supported by the Department of Health and Ageing. Project period October 2008 to June Acknowledgements This project was funded by NSW Health, through the NGO Mental Health and Drug and Alcohol Research Grant Program, with this grant being administered by the Network of Alcohol and Drug Agencies (NADA). The authors would especially like to thank the respondents and collaborating organisations for their participation. The authors would also like to thank the following: Feona Cowlin for her valuable assistance in recruitment and interviewing; the members of the project advisory group; NADA and the Mental Health Coordinating Council (MHCC); the New South Wales Population and Health Services Research Ethics Committee; Area Health Services Research Governance Officers; and other management and staff who assisted in the project administration and recruitment processes. Contents 2

3 Contents Introduction... 7 Research question, aims and anticipated outcomes... 8 Literature Review... 9 Co-existence of cannabis use and mental health issues... 9 Access to services for CALD clients with co-existing cannabis use and mental health issues Pathways for CALD communities to specialist services Methodology Ethics approval Literature review The advisory group Interviewing Interview schedule and pilot Recruitment Consent process and recording the interview The interviewers Interpreters, bilingual interviewers and translated materials Transcribing and storing the recorded interview Analysis Sample characteristics Part I - Background to service access Cannabis and co-existing mental health issues Method Results Primary concern Co-existing cannabis dependence and mental health issues Psychosis Paranoia Pathways through drug and alcohol services to mental health help Discussion Aetiological issues Method Results Discussion Cultural and family contexts and attitudes Method Results Discussion Part II - Service access and referral Catalysts for service access Method Results Seizure and Self-harm Negative thought, suicidality and homelessness Police and custody DoCS involvement Breakdown Cognitive side effects Contents 3

4 Discussion Referral pathways and service access Method Results Types of services accessed First service accessed Self-managed change Fragmented versus continuous service experiences Repeat visits to the same service Referral pathways Self referral Family referral Criminal justice system referral Service referral The role of the General Practitioner (GP) Discussion Effective approaches Method Results - Therapeutic methods Medication as largely helpful Healthy alternatives to medication Challenges while taking medication Combined pharmacological and non-pharmacological approaches: Pharmacotherapy s role in coming off a substance Dependence on the prescribed medication The significance of continuing care The role of non-pharmacological approaches The role of mental health diagnoses Skills building and planning Flexibility and sensitivity Results - Interpersonal aspects Empathy Shared knowledge Non-judgmental approaches Group cohesion Discussion Significance of therapeutic language Method Results General familiarity with the language and devices of therapy CBT/AA/NA and self-identity CBT/AA/NA and self-esteem Challenges for therapeutic language and CALD Discussion Part III - Structural issues Organisational and structural issues Method Results Separation of drug and alcohol and mental health services The role of individual workers System interface/access Contents 4

5 Resourcing issues Discussion Implications of accommodating CALD Method Results Language and literacy Working with interpreters Stigma, shame, visibility and confidentiality Food and special treatment Discussion Recommendations and conclusion Recommendations Method Working with clients who have co-existing issues Working with clients from a CALD background Discussion Limitations Conclusion References Introduction Literature review Cannabis use and mental health issues Aetiogolical issues Cultural and family attitudes Catalysts for service access Referral pathways and services access Clients' perspectives of effective approaches Significance of therapeutic language Organisational and structural issues Implications of accommodating CALD Bibliography Appendices Appendix 1a - Site Specific Assessment: A real world example Appendix 1b - Timeline for ethics approvals Appendix 2 - Participant information and consent form Appendix 3a - Advisory group terms of reference Appendix 3b - Advisory group members Appendix 4a - Questions for clients Appendix 4b - Questions for health professionals Appendix 5a - Advertisement for worker participation Appendix 5b - Advertisement for client participation Appendix 6 - Vietnamese translation of the participant information and consent form Appendix 7 - Client service use history Contents 5

6 Introduction Contents 6

7 Introduction Increasingly, the co-existence of mental health and drug use issues has been widely recognised and documented (Hall, 1998; Campbell, 2005). This is particularly true in relation to cannabis use, with chronic cannabis use being significantly associated with mental health issues and disorders and social morbidity for some (Agosti, Nunes & Levin, 2002; Rey et al., 2002; Moore et al., 2007). Professionals across both the drug and alcohol and mental health sectors continue to explore and develop approaches for addressing co-existing issues in order to improve client outcomes and client centred approaches. As the evidence base and guidelines in addressing co-existing issues continues to develop, it is important to also investigate the experiences of special population groups within our communities. Greater understanding in this regard assists in increasing the capacity of services to be inclusive of needs that are specific to these distinctive groups. In Australia s increasingly culturally diverse society this is true for those who come from culturally and linguistically diverse backgrounds. In relation to co-existing mental health and drug use issues, the experiences and pathways of culturally and linguistically diverse (CALD) clients accessing help for these co-existing issues in Australia is unknown. Given the emergent recognition of the prevalence of co-existing issues further understanding is therefore needed in order to more adequately provide effective and appropriate services for this client group. This is particularly pertinent given that the limited research currently available indicates that those from CALD backgrounds are less likely to experience the same level of access to specialist drug and alcohol or mental health services than their Anglo-Australian counterparts. For example, a recent Sydney based study of patients making their first lifetime contact with community or hospital based mental health services suggested that immigrant patients consulted a more restricted range of health professionals than Australian-born patients (Steel et al., 2006). Further, in the drug and alcohol sector clients from CALD backgrounds represent a miniscule proportion of drug and alcohol treatment episodes. Research has shown that problematic drug and alcohol use is lower among CALD communities surveyed compared to the general population (Donato-Hunt et al., 2008). The representativeness of this Sydney-based research is limited however, and, as with general population studies, some harder to reach sub-populations may have greater and more problematic levels of substance use. While problematic drug use may be lower amongst CALD communities, the extremely low proportion of CALD clients captured in the Alcohol and Other Drug Treatment Services National Minimum Data Set (NMDS) suggests that people from CALD background are underrepresented in service access. Specifically, of the closed treatment episodes in in NSW, 87% were for clients born in Australia and 98% were for clients whose preferred language was English (AIWH, 2009). This is particularly concerning given the high cultural diversity of New South Wales population, where, in % were born overseas and 21% spoke a language other than English at home (ABS, 2006). Increasing understanding and the capacity of services to be responsive to the needs and circumstances of individuals, and implementing measures to improve access for those requiring assistance, is therefore pivotal. This research project, therefore, aims to contribute evidence to this end. Introduction 7

8 Research question, aims and anticipated outcomes The focus of this project will be to investigate the experience of clients from CALD backgrounds accessing assistance for co-existing drug use issues (including cannabis) and mental health issues. Specifically, the project will endeavour to answer the following research question: What are the experiences and pathways to specialist mental health and drug and alcohol services for CALD clients with co-existing cannabis use disorders and mental illness? The research explores the avenues people from a CALD background use to access mental health or drug and alcohol services. The degree to which being from a CALD background influences access to specialist care, appropriate assistance, and experiences in receiving assistance will be examined. The research methodology will be primarily qualitative. The aims of the project are to: Examine the dominant constructions of mental illness in NSW in the context of the effects these constructions may have on CALD populations accessing help. Qualitatively investigate the experiences of clients from a CALD background with co-existing drug use issues (including cannabis) and mental health issues in accessing appropriate and specialist care. Examine the pathways to specialist mental health or drug and alcohol services for CALD clients with co-existing drug use issues (including cannabis) and mental health issues. Investigate the degree to which being from a CALD background influences the time and pathways taken to specialist care. Examine levels of engagement by those from a CALD background with mental health and drug and alcohol services, compare these with clients of Anglo-Australian background, and explore any impact this has on individuals and families dealing with co-existing issues. Consequently, the anticipated outcomes of this project are to: Use interviews with clients to map the pathways to alcohol and other drugs (AOD) and mental health treatment for CALD clients with co-existing mental illness and cannabis use issues. Explore the range of experiences of CALD clients in accessing appropriate and timely treatment for co-existing mental illness and cannabis use issues. Identify particular access and equity issues for CALD clients in accessing appropriate and timely treatment for co-existing mental illness and cannabis use issues. Develop recommendations focused on improving access and quality of care for people from a CALD background who have co-existing mental illness and cannabis use issues. Introduction 8

9 Literature Review Co-existence of cannabis use and mental health issues The connections between cannabis use and mental health issues have been well documented. As early as 1857, physicians began to express concern about the possible effects of using cannabis. John Bell, M.D. described the novelty of its effects and its apparent harmlessness, but noted the defective pharmaceutic processes which render its preparations of very different strength, and admixtures of various foreign substances make its effects uncertain (Bell, 1857: 23). Bell also noted the psychoactive effects of cannabis, although not unpleasant, but having its first effects on the intellectual faculties.a gradual loss of power to direct the thoughts (Bell, 1857: 26). While Bell s (1857) examination of the effects of cannabis may have been restricted to the personal, more rigorous later investigation also demonstrated connections between cannabis use and psychosis. Tennant and Groesbeck (1972), for example, ascribed a five-fold increase in psychotic episodes among American soldiers in Europe between 1968 and 1971 to the soldiers cannabis smoking. By the late 1980s, possibly the most convincing study in this domain concluded that, over a fifteen year period, individuals who self-reported consuming cannabis on more than fifty occasions were six times more likely to develop schizophrenia than the general population (Andreasson, Allebeck, Engstrom, Rydberg, 1987). Eleven years later, the connections between schizophrenia and cannabis smoking were further elucidated. In 1998, Hall (1998) concluded that cannabis can cause psychotic-like symptoms while an individual is intoxicated, may lead to cannabis-induced psychosis in people predisposed to the disorder, and affect the clinical course of established schizophrenia. More recently, a study by Campbell (2005) at the University of Sydney revealed that eighty per cent of people who had medication-resistant schizophrenia had used cannabis regularly between the ages of twelve and twenty-one. He warned of a large increase in the reported number of people with schizophrenia due to the delayed effects of cannabis use (Campbell, 2005). The literature does not assert unequivocally however that cannabis smoking causes mental health issues such as schizophrenia. The connections between cannabis use and mental health issues appear to be more complex. Hall reports on the study by Andreasson et al. (1987), that while there does appear to be a dose-response relation between the frequency of cannabis use by the age 18 and a risk of the diagnosis of schizophrenia over the subsequent fifteen years (1998: 1614), it is unlikely that cannabis use caused cases of schizophrenia that would not otherwise have occurred. Are people with schizophrenia therefore ameliorating their symptoms by using cannabis instead of the cannabis use giving rise to the schizophrenic symptoms? Due to the manifold accompanying behavioural and environmental factors, it would be extremely difficult to determine if there is a causative relationship between cannabis use and schizophrenia in the general population (Andreasson et al., 1987; Der, Gupta and Murray, 1990; Linszen, Dingemans and Lenior, 1990; Turner and Tsuang, 1990; Hall, Solowij and Lemon, 1994). However, cannabis use is connected with more adverse affects other than psychotic symptoms. Recent research demonstrates that cannabis use may also have connections with depression and other mood disorders (Rey, Sawer, Raphael, Patton and Lynskey, 2002; Moore et al., 2007). Again, a causative relationship has not been clearly established. It is possible that there are common aetiological factors that produce depression and predict cannabis use (Rey et al. 2002). As with psychotic symptoms, it seems likely that cannabis use may not be the cause for mood disorders, but could be the catalyst for their development (Compton, Grant, Colliver, Glantz and Stinson, 2004; Raphael and Wooding, 2004). Regardless of the lack of convincing evidence for a causative Literature Review 9

10 relationship, the use of cannabis has an association with mental health issues that may be debilitating for the individual as well as the people around them, so painful that they have been known to produce suicidal ideation (Rey and Tennant, 2002; Kalant, 2004), and indeed suicide itself. The prevalence of the use of cannabis and cannabis related treatment entries in Australia is examined every year by the Australian Institute for Health and Welfare (AIHW). According to the National Drug Strategy Household Survey, cannabis was the most widely used illicit substance, by people over the age of fourteen in (AIHW 2008b unpublished: 25). Treatments in publicly funded government and non-government health facilities where cannabis was nominated as the principal drug of concern accounted for 31,980 closed treatment episodes. The AIHW defines a closed treatment episode as: a period of contact between a client and a treatment agency, and: It must have a defined date of commencement and cessation During the period of contact, there must have been no change in: The principal drug of concern The treatment delivery setting The main treatment type. (AIHW, 2008b: 4) The use of cannabis is second only to alcohol as the principal drug of concern, and is the principal illicit drug of concern, when treatment is sought. In New South Wales, for the same period, cannabis was the principal drug of concern in approximately the same proportion of closed treatment episodes as in the national data, 19% and 23% respectively (AIHW: 1). These numbers may not account however for all people who experience difficulties as a result of their cannabis use because of the barriers specific to treatment for cannabis issues. Access to services for CALD clients with co-existing cannabis use and mental health issues The literature on barriers specific to treatment for cannabis issues is scarce (Gates et al.,2008). The available evidence suggests however, that one of the key barriers is that cannabis use is not seen as sufficiently problematic to require treatment (Ellingstad et al., 2006). Ellingstad et al. also identified other barriers to entry to cannabis treatment such as the stigma of being labelled a drug user and the desire to quit without treatment. In their study, other considerations included financial costs, negative feelings about treatment and being unaware of treatment options. Other research has suggested that barriers to cannabis treatment may result from a lack of treatment specific to cannabis (Vendetti et al., 2002) and that some services are often ill-prepared to provide appropriate treatment for cannabis dependence (Gates et al., 2008: 13, from Strike, Urbanoski and Rush, 2003). Strike, Urbanoski and Rush (2003) suggest that treatment providers and researchers need to better understand the relationships between cannabis treatment seeking, motivation to change and potential treatment outcomes (Gates et al., 2008) in order to understand barriers specific to cannabis treatment entry. In addition to the access issues to appropriate health care faced by any individual with co-existing cannabis use and mental health issues, individuals from culturally and linguistically diverse backgrounds must overcome other obstacles. These obstacles may include, but would not be limited to the following: Literature Review 10

11 1. Language difficulties: for individuals whose first language is not English, or if an individual possesses no English language skills, health systems in Australia could potentially be very difficult to negotiate. Access into programs usually requires a level of competence in English. There are relatively few bilingual workers in the drug and alcohol field, and even fewer designated bilingual positions. While some work can be undertaken through the use of interpreters, some treatment programs (such as residential programs) are not well suited to this. CALD clients, especially those from small communities, may doubt interpreters commitment to maintaining confidentiality, or not understand that it is their professional obligation to do so. 2. Social stigma: many authors have identified an increased level of social stigma attached to illicit drug use and mental health issues among CALD communities relative to non-cald communities. Reid, Crofts and Beyer observed that illicit drug use in ethnic communities is often associated with denial, shame, stigma, loss of face within the community, and as a consequence a high level of unwillingness to tell others of personal problems (2001: 14-15). The open admission of illicit drug use and personal problems does not countenance well with many of the traditions of CALD communities (Zane and Kim, 1994; Amodeo, Robb, Peou and Tran, 1996; Fish and Harris, 1997; D Avanzo, 1997; Reid, Crofts and Beyer, 2001). For this reason, illicit drug use and mental health are issues generally dealt with within the extended family unit (Reid, Crofts & Beyer, 2001). 3. The influence of family: as mentioned above, the role of the family in dealing with the issues of illicit drug use and mental health is generally important among CALD communities. The fear of ostracism from the family unit may be very high for younger members of the community, so disclosure of drug problems is greatly reduced (Reid, Crofts, Beyer, 2001). Additionally, among many CALD communities, the needs of the individual are viewed as less significant than the needs of the collective family unit (Reid, Crofts, Beyer, 2001). The importance of maintaining face for the family unit is at the forefront, pressuring the individual into non-disclosure of illicit drug use (Viviani, 1984; Burley, 1990; Ngyuen, 1995; Duong, 1995; Leung and Boehnien, 1996). There is however emerging evidence that some CALD communities are acculturating to the mainstream acceptance of intervention from outside the community (EYIN, 1998; Reid, Crofts and Beyer, 2001). 4. Socio-cultural and economic factors: the approaches to treatment in Australia are largely based upon the Western Ideas of self-disclosure as a pathway to wellness (Reid, Crofts and Beyer, 2001). As a result, among many CALD communities who do not share this view, there is considerable skepticism about the efficacy of such an approach (Major, 1993; Sue, Zane and Young, 1994; McGoldrick, Giordano and Pearse, 1996; Reid, Crofts and Beyer, 2001). Additionally, there may be concurrent stressors that would not apply necessarily to the non- CALD community in the form of pre- and post-migration experiences (Tucker, 1985; Maddahian, Newcomb and Bentler, 1988; Zane, Aoki, Ho, Huang and Jang, 1998; Reid, Crofts and Beyer, 2001). One of the principle purposes of this study is to investigate the possibility that people from CALD backgrounds are less likely to finish treatment and engage in follow-up (Maddox and Desmond, 1996; Van de Wijngart, 1997) due to the cultural irrelevance of many mainstream programmes. 5. Unfamiliarity with processes and pathways: in Australia, approaches to co-existing drug/alcohol and mental health service provision have assumed that mainstream services are Literature Review 11

12 sufficiently inclusive of social and cultural differences (Alcorso, 1990; Romios and Ross, 1993; Dent, Sussman, Ellickson, Brown and Richardson, 1996; Reid, Crofts and Beyer, 2001). However, drug services are often viewed by people from CALD backgrounds as inaccessible (Amodeo, Robb, Peou and Tran, 1997; Samaha, 1997; Pearson and Patel, 1998; Success Works Pty. Ltd., 1998b). The suspicion and apprehension regarding mainstream services is a key obstacle for people from CALD backgrounds, especially in regard to confidentiality (Success Works Pty. Ltd., 1998). For many people from CALD backgrounds, anonymity is foremost when accessing drug and alcohol services (Zaparas, 1988; Everingham and Flaherty, 1995 Johnson and Carroll, 1995). CALD communities therefore, may experience reduced contact with treatment services due to the perception that such services are inaccessible and that cultural imperatives such as confidentiality may not be recognised. 6. Staffing issues: in order for drug/alcohol and mental health services to be effective, service staff must have both an affinity with, and a knowledge of ethno-specific and cultural values and mores of CALD communities (Longshore, Hsieh & Anglin, 1993; Van de Wijngart, 1997; Reid, Crofts and Beyer, 2001). The attitude of service staff must be open and inclusive for services to be successful (Smith and Citta, 1994). Often, the most successful pathways to services will include family and recognise the valued role family plays in producing a positive and lasting outcome (Hatty, 1991; Martin and Zweben, 1993; De Jong, Valentine and Kennedy, 1998; Jacka, Clode, Patterson & Wyman, 1999). A key component of this study is the investigation of staff attitudes towards, and awareness of, the barriers faced by CALD communities when accessing services for co-existing cannabis use and mental health issues. Pathways for CALD communities to specialist services for co- existing cannabis use and metal health issues At present little is known about illicit drug use and CALD communities access to specialist services pathways for mental health disorders. There is a paucity of written material (Reid, Crofts and Beyer, 2001: 16) and readily-available translated materials at key sites where treatment is sought from CALD communities (Success Works Pty. Ltd., 1998). Additionally, among many, the following structural factors affect the pathways to services for people from CALD communities experiencing co-existing cannabis use and mental health issues: 1. Social and cultural factors have a negative impact upon the number and variety of specialist services with which CALD communities engage (Steel, McDonald, Silove, Baumann, Sandford, Herron & Minas, 2006). This in turn may affect the efficacy of the service received (Pirkis, Burgess, Meadows and Dunt, 2001; Steel, Silove, Chey, Baumann, Phan and Phan, 2005). 2. Drug treatments are centred on an Anglo-Saxon model which may not necessarily accord with the beliefs and needs of people form CALD communities (De Leon, Melnick, Schokert and Jainchill, 1993). The format of these treatments has a negative effect on both the attractiveness of, and retention within, the treatment. Ultimately, little is known about the pathways to specialist services for individuals from CALD backgrounds presenting with co-existing cannabis use and mental health issues as there are scant Literature Review 12

13 instances when such a presentation occurs. Furthermore, these presentations have not been routinely and meaningfully documented. In the AIHW report on the minimum data set of closed episodes of drug and alcohol treatments, only 6 percent of the treatments were for people born in a non-english speaking country (AIHW, 2006). The NSW state average for people born in a non- English speaking country is approximately 14 percent (ABS, 2006). The literature suggests that this disparity does not point to a reduced need for mental health services among CALD communities, but rather an under-utilisation of mental health services by CALD communities (Reid, Crofts and Beyer, 2001). Such an under-utilisation is a result of a combination of all of the difficulties of access and cultural and linguistic differences previously discussed (Spathopoulas and Bertram, 1991). The area that has not been sufficiently studied and documented, and the largest gap in the literature, is the experience of people from CALD backgrounds in accessing mental health services for coexisting cannabis use and mental health issues. While causation cannot be reliably determined, connections have been made between cannabis and poor mental health. It also appears that there are inequities of access to mental health services for people from CALD backgrounds relative to people from non-cald backgrounds. This study provides insight into the experiences of CALD populations, and the pathways used to access, and the quality of services for co-existing cannabis use and mental health issues. Literature Review 13

14 Literature Review 14

15 Methodology The aim of the Drug and Alcohol Multicultural Education Centre s (DAMEC) project was to investigate pathways and barriers to specialist service for people from culturally and linguistically diverse (CALD) backgrounds who experience cannabis use and mental health issues. In order to do this, a qualitative methodology was employed in which clients of services as well as workers in these services were interviewed. The interviews were semi-structured and narrative analysis was employed to examine the experiences of these client and workers. Both government and non-government drug and alcohol (AOD) and mental health services in Sydney and the Illawarra were asked to participate. Ethics approval In order to speak to the clients and workers in both government and non-government AOD and mental health services, ethics approval was required. This approval was also required by DAMEC s research policy and as part of the funding agreement in the Non-government Organisation Mental Health and Drug and Alcohol Research Grants Programme. The New South Wales Population and Health Services Research Ethics Committee (NSW P&HSRC) was approached to fulfil this function. This committee is registered with the National Health and Medical Research Council (NHMRC) to ensure that research involving humans is conducted in an ethically acceptable way and in compliance with relevant standards and guidelines. A National Ethics Application Form (NEAF) was completed and forwarded to the NSW P&HSRC. Ethical approval was granted by the New South Wales Population and Health Services Research Ethics Committee (NSW P&HSREC) on 1 st October As amendments to the project plan arose, the NSW P&HSREC was notified, and if necessary formal amendments were requested. The NSW P&HSREC approved the participant information and consent form, worker and client interview schedules, written information promoting the research and posters advertising the research for display in some of the collaborating agencies. There was a variety of experiences in gaining access to area health services (AHSs) sites, and in particular related to timeframes. A significant amount of time in this 18-month project was spent in gaining, or attempting to gain, access to sites with area health services. Specific details for each AHS are as follows: - Sydney South West Area Health Service (SSWAHS): Applications were lodged to three RGOs from the three divisions to conduct research at the main hospitals, mental health units and on-site drug and alcohol facilities for which the RGOs had oversight. In this AHS final approval for Bankstown, Bowral, Camden, Campbelltown, Concord, Fairfield, Liverpool and Royal Prince Alfred hospitals was granted by 23rd February Further requirements required for research within Royal Prince Alfred hospital were unable to be fulfilled given project time constraints, therefore final approval was not granted, and this site was withdrawn from the research. - South Eastern Sydney Illawarra Area Health Service (SESIAHS): Applications were made to RGOs responsible for mental health, drug and alcohol, and community health services in SESIHAS, with one nominated RGO able to process the application on behalf of the other two. Approval to conduct research at nominated sites in this AHS was obtained on 21st October Western Sydney Area Health Service (WSAHS): SSA was submitted to WSAHS. Given project time and resource constraints it was decided not to pursue the further information requested before approval could be granted to conduct research in the AHS as such sites within this AHS were not included in the research. As the real-world example (Appendix 1a) and timeline (Appendix 1b) illustrate, gaining access to these sites comprised a significant amount of time in an 18-month project. Non-government agencies Methodology 15

16 were also asked to participate. Each non-government agency either saw the NSW P&HSREC approval as sufficient, or used their own ethics panel to determine the suitability of this research. Typically, the manager of the non-government organisations approved the research project at their service, with one exception, where the in-house ethics committee was engaged to decide, and approve, the research. Appendix 2 is the Participant Information and Consent Form (PICF) used with non-government services. Area Health Services (AHSs) also required a paragraph detailing who could be contacted within the site regarding the research project. In addition, AHSs PICFs detailed the sites: for example, within SSWAHS, the PICF also had the hospital name such as Concord or Royal Prince Alfred. Literature review A comprehensive literature review was undertaken in order to map the field under investigation in this study. The literature review was conducted searching the electronic databases available at the Universities of Sydney and New South Wales, as well as Macquarie University and the University of Technology, Sydney. The literature derived from these searches was analysed for content relevant to co-existing cannabis use and mental health uses, as well as service access by people from CALD backgrounds with drug use or mental health issues. This content was then synthesised in order to identify possible gaps in the extant literature. These gaps would inform the interview schedules and the analysis of the participants narratives. As the project progressed, and themes common among participants narratives became apparent, further literature searches were undertaken in order to find supporting evidence for additional themes that arose in this study. The advisory group An advisory group was convened for this research project, the aim being to gather expert advice in the fields of drug and alcohol and mental health service provision. The members were people with significant attachment with, and experience in, the drug and alcohol and mental health fields. Among these members, government, non-government and academia were represented. Multicultural health services were also represented. A terms of reference was agreed to at the first meeting (Appendix 3). The group first met in December 2008, and during the course of the project, met five times, with each meeting chaired and minuted by DAMEC research staff. The discussions mainly centred upon the piloting of the interview schedules, service engagement and recruitment, the use and register of language in the report, the themes emerging from the narratives of the participants, and the dissemination of results. Interviewing Interview schedule and pilot The project included two interview schedules, one for clients of services and the other for health professionals working in the drug and alcohol and/or mental health sectors. The rationale for the interview schedules in the current study was based upon the following: Methodology 16

17 Questions utilised in a study undertaken in 1997 by the Drug and Alcohol Multicultural Education Centre (DAMEC) entitled South Eastern Sydney Area Health Alcohol, Tobacco and Other Drug Access and Equity Project Report; Questions utilised in a study undertaken in by DAMEC entitled Working with culturally diverse clients in drug and alcohol services: Worker perspectives, which acknowledged that currently in Australia there is limited substantive evidence on the extent to which cultural and linguistic diversity (CALD) impacts on the receipt of quality care in drug and alcohol (D&A) treatment settings, and; The literature review discussed above. The interview schedules for the current study were then revised according to the recommendations of the advisory group after being tabled at the initial advisory group meeting. The interview schedules were then piloted with five workers and five clients. As a result of the pilot, questions were further amended. These amendments were then forwarded to the NSW P&HSREC for approval as required by the original ethics approval. The piloted interview schedules were approved by the NSW P&HSREC on 4 th August Appendices 4a and 4b are the post-pilot interview schedules for clients and workers. Recruitment There were two parts to the recruitment process in this research, accordant with the recruitment methods for which ethical approval had been granted. The first part was recruitment of health professionals in both government and non-government drug and alcohol (AOD) and mental health services in Sydney and the Illawarra. In most instances, the researchers attended a team meeting of these services and introduced the research project. In order to maintain an ethical stance in relation to the services and the health professionals representing them, the identity of the services and participants has been kept confidential. The workers interviewed, as well as their colleagues, were then asked if they could pass on information regarding the research to their clients for possible participation interviews. Two posters detailing the project were left with the workers, one promoting the research among workers (Appendix 5a) and one promoting the research to clients (Appendix 5b). This promotional material had the consent of NSW P&HSREC. Later in the project, other parts of NSW were included in the research. This amendment was approved by NSW P&HSREC. The second part of the recruitment process involved the recruitment of the clients of drug and alcohol and mental health services. Ethical approval had been granted for arm s-length type recruitment. This process meant that the clients be referred to our research project by the health professionals from whom they were seeking help for their cannabis use and/or mental health issues. When the project was introduced during group settings at residential units, the worker invited all clients attending to participate. The inclusion criteria for the clients were: Diagnosed with co-existing cannabis use and mental health issues; Currently a client of a drug and alcohol or mental health specialist located in regions of NSW. As the project was looking particularly at the experiences of clients from CALD backgrounds, the inclusion of clients who were either born overseas in a non-english speaking country or speak a language other than English (LOTE) at home was emphasised. Clients who were born in Australia and Methodology 17

18 did not speak a LOTE at home were also included for comparative purposes and to further understand the experiences of clients with co-existing issues more generally. These two parts of the recruitment process operated contiguously. In the original ethics application, people who self-identified as having an Aboriginal and/or Torres Strait Islander (ATSI) background were to be excluded. Unintended, four client participants self-identified as having an ATSI background during the course of the interview. An application was made to amend the original project plan in order to include the narratives of these four participants. On 1 st December 2009, the NSW P&HREC declined this amendment and referred the researchers to the Aboriginal Health and Medical Research Council (AHMRC). After much deliberation and given time constraints with five months remaining for the completion of the project, it was decided upon grounds of ethics, that these four narratives were to be excluded from analysis and reporting. Consent process and recording the interview The interviews were typically conducted in quiet, private rooms at the service at which either the client attended or the health professional worked. There were three atypical client interviews, two of which took place in cafés and another in a library. In both these cases, the participants were referred by drug and alcohol workers, and the researchers contacted the participants directly to arrange a time and place to meet. When clients were referred to the DAMEC researchers they had only indicated interest to participate, not formal consent. Upon meeting, the researchers and participants discussed the participant information and consent forms before the commencement of the interview. The participants were then asked whether they consent to participate in the interview, and have their interview transcribed if they agree to it being recorded. The consent form was then signed by both the client and the researcher. The participants were also asked whether they consented to a recording of the interview to be taken, with verbal consent to record the interview given by all participants. Some form of contact details, whether the service, an or postal address was requested in order for the final report to reach the participants. The interview was recorded on a digital voice recorder. At the conclusion of the interview, the participant was thanked for their time, and, if they were a client, were given a thirty dollar voucher from a major supermarket chain. The interviewers Three researchers employed by DAMEC conducted all the interviews. Interviews were conducted May to June 2009 (pilot), and August to December The skill set of the interviewers had a variety of bases, featuring training and experience in drug and alcohol and mental health services provision. Common among the interviewers was training and experience in qualitative investigation in the social sciences. Interpreters, bilingual interviewers and translated materials Funds were allocated in the original project plan for interpreters and bilingual interviewers. Funds were also allocated for translations of the participant information and consent forms. The information and participant consent form for clients was translated into Vietnamese with the prospect of recruiting several participants from a particular service for whom Vietnamese was their preferred language of communication. The translation was undertaken by the Multicultural Health Communication Service who used two translators accredited at professional level by the National Accreditation Authority for Translators and Interpreters (NAATI) (see Appendix 6 for an example of this translation. This Methodology 18

19 appendix is the PICF for clients in South Eastern Sydney Illawarra Area Health Service, Northern Hospital Network. This is the location of the particular service mentioned in this section above). Transcribing and storing the recorded interview Once the researchers were back at their office, the recorded interview was given a unique identifier comprising: participants initials, date and place of recording and interviewer. The recordings were then uploaded onto an external hard drive. These recordings were then de-identified and uploaded to the transcription service via a file transfer protocol. Once transcribed, the interviews were then ed back to the researchers as MS Word documents. These documents were then saved, with the participants unique identifiers, on the external hard drive. Analysis Purposive maximum variation sampling was used to reveal common themes of interest in the experiences of CALD clients of drug and alcohol and mental health services across the variation of services accessed. The project budget allowed for up to 120 interviews to be conducted, with up to 40 interviews in a LOTE, ensuring that data saturation would be achieved, given the range across the multiple themes in both drug and alcohol and mental health under investigation. Given the qualitative nature of the research, data saturation actually occurred after 56 client interviews (four excluded because of self-identification with ATSI, leaving a total of 52), and interviews with 22 workers. Thematic based analysis was conducted, in order to analyse naturally occurring text to discover semantic information and patterns. In addition, the interviewees responses were analysed using Muller s (1999) five over- lapping stages of narrative analysis entering the text (reading and preliminary coding to gain familiarity), interpreting (finding connections in the data through successive readings and reflection), verifying, searching the text and other sources for alternative explanations and confirmatory and disconfirming data), representing (writing up an account of what has been learned) and illustrating (selecting representative quotes) (Greenhalgh et al., 2006: 1175). By using this approach, we were able to gain access not only to the individual narratives but also the wider context framing the participants experiences. From this analysis, we uncovered patterns and inconsistencies that emerged from multiple stories about comparable events (Greenhalgh et al., 2006: 1175). The analysis took place in the following way: 20 of the eligible 52 client transcripts, and 10 of the 22 worker transcripts were analysed by the lead author and a list of emerging themes was defined; The research assistant was given a copy of the emerging themes and then analysed a further three client and worker transcripts (total = 6) according to this list, simultaneously with, but independent of, the lead author analysing the same three transcripts; The lead author and research assistant then compared their independent analyses and found that the material drawn by both researchers from the transcripts aligned very closely; Half of the remaining transcripts were then apportioned to the two researchers for analysis; Methodology 19

20 When analysis was complete, a themes matrix was established using MS Excel. Each theme was given a row and each client a column; The excerpts from the transcripts that were copied out during analysis stage were then hyperlinked to the themes matrix according to theme and client; The significance of the themes and their priorities within the report were then decided in a meeting between three authors of the report; Writing of the report then began using the themes matrix to point to fitting client and worker narratives; Additional analysis took place throughout the writing, especially in relation to points in narratives that were included after the themes matrix analysis. A systematic process of going through each interview to check for additional narratives was engaged, particularly in relation to services access and referral and experiences that related to family and cultural contexts, in order to convey as much of the narrative as possible. As the results and discussion were written up, they were individually reviewed by all authors to ensure consistency of analysis; Clients and workers were de-identified throughout the report by assigning the participants a first and last initial which was not their own. Sample characteristics There were 21 interviews with 22 drug and alcohol and mental health workers, with two drug and alcohol workers interviewed simultaneously. Of these 22, 2 workers came from community centres, 8 came from outpatient drug and alcohol services, and 5 came from inpatient drug and alcohol services. Another 4 workers came from outpatient mental health services and 4 came from inpatient mental health services. Approximately half of the workers came from culturally and linguistically diverse backgrounds. In total workers were recruited from a total of fifteen services, ten non-government and five government services. Of the 56 client participants, 4 self-identified as ATSI and 26 self-identified as CALD, 6 of whom were born in countries defined by the Australian Bureau of Statistics as non- English speaking. The remaining 26 clients did not self-identify as CALD. Clients were recruited from a total of thirteen services, eight non-government and five government services. See Appendix 7 Client Characteristics for further information. Methodology 20

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