Involvement of people who use alcohol and other drug services in the development of patient-reported measures of experience: A scoping review.

INTRODUCTION: Patient-reported measures that assess satisfaction and experience are increasingly utilised in healthcare sectors, including the alcohol and other drug (AOD) sector. This scoping review identifies how and to what extent people accessing AOD services have been involved in the development of satisfaction and experience measures to date. METHODS: PubMed, EMBASE, CINAHL, Scopus, ProQuest, Google and Google Scholar were searched. Included papers described the development and/or implementation of a multiple-item measure of patient-reported experience or satisfaction specifically for people accessing AOD treatment and/or harm reduction programmes. If there was more than one paper, key papers were chosen that described each measure. The method of development, including service user involvement, was assessed against a framework generated for this review. Two reviewers were involved at each stage. RESULTS: Thirty measures-23 satisfaction and 7 experience-were identified. Sixteen measures reported some level of involvement by people accessing AOD services in their development, although, for most measures, at a relatively low level. This involvement increased over the time span of the review becoming more frequent in later years. Only four measures were developed for use in harm reduction-specific settings, and fewer than half reported undertaking analysis of underlying scale structure and constructs. CONCLUSION: Several gaps could be addressed to enhance the measurement of patient-centred care in the AOD sector, including: developing experience measures for use in harm reduction settings and across various AOD settings in a service system; improved reporting of psychometric properties of these measures and increasing commitment to the meaningful involvement of AOD service users in measure development. PATIENT OR PUBLIC CONTRIBUTION: This scoping review is part of a broader codesign project that involves a partnership between the peak organisation for AOD services and the peer-based AOD consumer organisation in the Australian Capital Territory, Australia. These organisations are working closely together to engage with AOD service users, service providers and policy makers in this codesign project. As such, the Executive Director of the peer-based AOD consumer organisation is involved as a co-author of this scoping review.

Do stress, life satisfaction, depression and alcohol use predict quitting among Aboriginal and Torres Strait Islander smokers?

OBJECTIVE: To examine whether baseline measures of stress, life satisfaction, depression and alcohol use predict making or sustaining quit attempts in a national cohort of Aboriginal and Torres Strait Islander smokers. METHODS: We analysed data from the nationally representative quota sample of 1,549 Aboriginal and Torres Strait Islander adults who reported smoking at least weekly in the Talking About The Smokes baseline survey (April 2012-October 2013) and the 759 who completed a follow-up survey a year later (August 2013-August 2014). RESULTS: More smokers who reported negative life satisfaction, feeling depressed, higher stress or drinking heavily less often than once a week at baseline made a quit attempt between the baseline and follow-up surveys. In contrast, of these smokers who had made quit attempts between surveys, more who reported higher stress were able to sustain abstinence for at least one month; other associations were inconclusive. Conclusions and implications for public health: Health staff and Aboriginal and Torres Strait Islander smokers need not see being more stressed as an obstacle to quitting among Aboriginal and Torres Strait Islander people. Health staff should emphasise the benefits to mental health that come with successfully quitting smoking.

Social networks and quitting in a national cohort of Australian Aboriginal and Torres Strait Islander smokers.

INTRODUCTION AND AIMS: Health behaviours, such as smoking and quitting, spread person-to-person through social networks. We explore how social networks are associated with making and sustaining quit attempts for at least 1 month among Aboriginal and Torres Strait Islander smokers. DESIGN AND METHODS: We analysed data from the nationally representative quota sample of 759 Aboriginal and Torres Strait Islander adults who reported smoking at least weekly in Talking About The Smokes baseline survey (April 2012-October 2013) who completed a follow-up survey a year later (August 2013-August 2014). RESULTS: At baseline, 41% of smokers reported that all of their five closest family or friends smoked, but 62% reported that family or friends had provided encouragement to quit. Fewer smokers with other adult smokers in their household at baseline made a quit attempt between surveys (OR 0.63, 95% CI 0.45-0.87). Fewer smokers who had made an attempt between surveys sustained abstinence for at least 1 month if all of their five closest friends smoked (OR 0.60, 95% CI 0.37-0.97). Perceived support to quit in your social network was associated with making and sustaining a quit attempt. DISCUSSION AND CONCLUSIONS: Exposure to smoking in the social networks of Aboriginal and Torres Strait Islander smokers is an obstacle to quitting, but there is also considerable support for quitting from within these same social networks. Health staff could consider encouraging smokers to draw on the few non-smokers within their social networks as role models to increase their confidence in quitting.

Electronic Cigarette Use and Understanding Among a National Sample of Australian Aboriginal and Torres Strait Islander Smokers.

INTRODUCTION: Adult daily smoking prevalence in the Aboriginal and Torres Strait Islander population is 2.8 times that of other Australians. There is little data on prevalence of electronic cigarette (e-cigarette) use among Aboriginal and Torres Strait Islander peoples. We measured e-cigarette use and beliefs about their harmfulness in national samples of Aboriginal and Torres Strait Islander smokers and of all Australian smokers. METHODS: The Talking About the Smokes project interviewed a nationally representative quota sample of 1301 Aboriginal and Torres Strait Islander smokers between August 2013 and August 2014. The Australian Wave 9 survey of the long-running International Tobacco Control Project interviewed 1093 smokers between February and May 2013. Estimates for all Australian smokers were standardized to the age and sex distribution of Aboriginal and Torres Strait Islander smokers. RESULTS: Fewer Aboriginal and Torres Strait Islander than all Australian smokers had tried an e-cigarette (21% vs. 30%). This was in part because of more Aboriginal and Torres Strait Islander smokers having not heard of e-cigarettes. Fewer Aboriginal and Torres Strait Islander smokers than all Australian smokers agreed that e-cigarettes are less harmful than conventional cigarettes (22% vs. 50%). CONCLUSIONS: Many Aboriginal and Torres Strait Islander smokers have used e-cigarettes. However, there is considerable misunderstanding about the relative harm of e-cigarettes compared with conventional cigarettes, in part because of the tight regulatory environment in Australia. IMPLICATIONS: The study describes e-cigarette use and understanding in national samples of Aboriginal and Torres Strait Islander smokers and of all Australian smokers. Only small studies have reported on e-cigarette use in this high smoking prevalence population. Fewer Aboriginal and Torres Strait Islander smokers than all Australian smokers had tried an e-cigarette and fewer agreed that e-cigarettes are less harmful than conventional cigarettes. Australian governments, health authorities, health professionals, and e-cigarette regulations should provide clearer messages that e-cigarettes are less harmful.

Cannabis use among two national samples of Aboriginal and Torres Strait Islander tobacco smokers.

INTRODUCTION AND AIMS: There is a concern that cannabis use is an important barrier to reducing Aboriginal and Torres Strait Islander smoking. We investigate the associations of cannabis use and tobacco smoking and quitting in two large national samples. DESIGN AND METHODS: The 2012-2013 National Aboriginal and Torres Strait Islander Health Survey was a national stratified random household survey conducted between April 2012 and February 2013, and included 2580 adult Aboriginal and Torres Strait Islander smokers. The Talking About The Smokes Project interviewed a national quota sample of 1301 Aboriginal and Torres Strait Islander adult smokers between August 2013 and August 2014. Both surveys asked about tobacco smoking and quitting, cannabis use and socio-demographic factors. RESULTS: Both surveys estimated that cannabis use is common among Aboriginal and Torres Strait Islander smokers (National Aboriginal and Torres Strait Islander Health Survey: 32%, Talking About The Smokes: 24%). Both surveys found a higher prevalence of cannabis use among smokers who were male, younger, unemployed or who more frequently consumed five or more alcoholic drinks in a day. However, the two surveys provided inconsistent evidence about whether cannabis use is associated with not quitting smoking tobacco. DISCUSSION AND CONCLUSIONS: We did not find consistent evidence in this setting that cannabis use is an obstacle to quitting tobacco smoking. Nevertheless, we would still recommend that clinicians counselling Aboriginal and Torres Strait Islander tobacco smokers about quitting talk about cannabis use because its use is common and almost all mix it with tobacco.

Research methods of Talking About The Smokes: an International Tobacco Control Policy Evaluation Project study with Aboriginal and Torres Strait Islander Australians.

OBJECTIVE: To describe the research methods and baseline sample of the Talking About The Smokes (TATS) project. DESIGN: The TATS project is a collaboration between research institutions and Aboriginal community-controlled health services (ACCHSs) and their state and national representative bodies. It is one of the studies within the International Tobacco Control Policy Evaluation Project, enabling national and international comparisons. It includes a prospective longitudinal study of Aboriginal and Torres Strait Islander smokers and recent ex-smokers; a survey of non-smokers; repeated cross-sectional surveys of ACCHS staff; and descriptions of the tobacco policies and practices at the ACCHSs. Community members completed face-to-face surveys; staff completed surveys on paper or online. We compared potential biases and the distribution of variables common to the main community baseline sample and unweighted and weighted results of the 2008 National Aboriginal and Torres Strait Islander Social Survey (NATSISS). The baseline survey (Wave 1) was conducted between April 2012 and October 2013. SETTING AND PARTICIPANTS: 2522 Aboriginal and Torres Strait Islander people in 35 locations (the communities served by 34 ACCHSs and one community in the Torres Strait), and 645 staff in the ACCHSs. MAIN OUTCOME MEASURES: Sociodemographic and general health indicators, smoking status, number of cigarettes smoked per day and quit attempts. RESULTS: The main community baseline sample closely matched the distribution of the Aboriginal and Torres Strait Islander population in the weighted NATSISS by age, sex, jurisdiction and remoteness. There were inconsistent differences in some sociodemographic factors between our sample and the NATSISS: our sample had higher proportions of unemployed people, but also higher proportions who had completed Year 12 and who lived in more advantaged areas. In both surveys, similar percentages of smokers reported having attempted to quit in the past year, and daily smokers reported similar numbers of cigarettes smoked per day. CONCLUSION: The TATS project provides a detailed and nationally representative description of Aboriginal and Torres Strait Islander smoking behaviour, attitudes, knowledge and exposure to tobacco control activities and policies, and their association with quitting.

Personal attitudes towards smoking in a national sample of Aboriginal and Torres Strait Islander smokers and recent quitters.

OBJECTIVES: To describe attitudes towards smoking in a national sample of Aboriginal and Torres Strait Islander smokers and recent quitters and assess how they are associated with quitting, and to compare these attitudes with those of smokers in the general Australian population. DESIGN, SETTING AND PARTICIPANTS: The Talking About The Smokes project used a quota sampling design to recruit participants from communities served by 34 Aboriginal community-controlled health services and one community in the Torres Strait. We surveyed 1392 daily smokers, 251 non-daily smokers and 78 recent quitters from April 2012 to October 2013. MAIN OUTCOME MEASURES: Personal attitudes towards smoking and quitting, wanting to quit, and attempting to quit in the past year. RESULTS: Aboriginal and Torres Strait Islander daily smokers were less likely than daily smokers in the general Australian population to report enjoying smoking (65% v 81%) and more likely to disagree that smoking is an important part of their life (49% v 38%); other attitudes were similar between the two groups. In the Aboriginal and Torres Strait Islander sample, non-daily smokers generally held less positive attitudes towards smoking compared with daily smokers, and ex-smokers who had quit within the past year reported positive views about quitting. Among the daily smokers, 78% reported regretting starting to smoke and 81% reported spending too much money on cigarettes, both of which were positively associated with wanting and attempting to quit; 32% perceived smoking to be an important part of their life, which was negatively associated with both quit outcomes; and 83% agreed that smoking calms them down when stressed, which was not associated with the quitting outcomes. CONCLUSIONS: Aboriginal and Torres Strait Islander smokers were less likely than those in the general population to report positive reasons to smoke and held similar views about the negative aspects, suggesting that factors other than personal attitudes may be responsible for the high continuing smoking rate in this population.

Social acceptability and desirability of smoking in a national sample of Aboriginal and Torres Strait Islander people.

OBJECTIVES: To describe social normative beliefs about smoking in a national sample of Aboriginal and Torres Strait Islander people, and to assess the relationship of these beliefs with quitting. DESIGN, SETTING AND PARTICIPANTS: The Talking About The Smokes project used a quota sampling design to recruit participants from communities served by 34 Aboriginal community-controlled health services and one community in the Torres Strait. We surveyed 1392 daily smokers, 251 non-daily smokers, 311 ex-smokers and 568 never-smokers from April 2012 to October 2013. MAIN OUTCOME MEASURES: Eight normative beliefs about smoking; wanting and attempting to quit. RESULTS: Compared with daily smokers in the general Australian population, Aboriginal and Torres Strait Islander daily smokers were less likely to report that mainstream society disapproves of smoking (78.5% v 62%). Among Aboriginal and Torres Strait Islander daily smokers, 40% agreed that Aboriginal and Torres Strait Islander community leaders where they live disapprove of smoking, 70% said there are increasingly fewer places they feel comfortable smoking, and most (90%) believed non-smokers set a good example to children. Support for the government to do more to tackle the harm caused by smoking was much higher than in the general Australian population (80% v 47.2%). These five normative beliefs were all associated with wanting to quit. Non-smokers reported low levels of pressure to take up smoking. CONCLUSION: Tobacco control strategies that involve the leadership and participation of local Aboriginal and Torres Strait Islander community leaders, particularly strategies that emphasise protection of others, may be an important means of reinforcing beliefs that smoking is socially unacceptable, thus boosting motivation to quit.

Tobacco control policies and activities in Aboriginal community-controlled health services.

OBJECTIVES: To describe tobacco control policies and activities at a nationally representative sample of Aboriginal community-controlled health services (ACCHSs). DESIGN, SETTING AND PARTICIPANTS: The Talking About The Smokes (TATS) project used a quota sampling design to recruit 34 ACCHSs around Australia. Between April 2012 and October 2013, a representative at each ACCHS completed a survey about the service's tobacco control policies and activities. Questions about support for smoke-free policies were also included in the TATS project survey of 2435 Aboriginal and Torres Strait Islander members of the communities served by the ACCHSs. MAIN OUTCOME MEASURES: ACCHS tobacco control policies and activities. RESULTS: Thirty-two surveys were completed, covering 34 sites. Most ACCHSs (24/32) prioritised tobacco control "a great deal" or "a fair amount", and all services had smoke-free workplace policies. Most had staff working on tobacco control and had provided tobacco control training within the past year. A range of quit-smoking information and activities had been provided for clients and the community, as well as extra smoking cessation support for staff. There was strong support for smoke-free ACCHSs from within the Aboriginal communities, with 87% of non-smokers, 85% of ex-smokers and 77% of daily smokers supporting a complete ban on smoking inside and around ACCHS buildings. CONCLUSIONS: The high level of commitment and experience within ACCHSs provides a strong base to sustain further tobacco control measures to reduce the very high smoking prevalence in Aboriginal and Torres Strait Islander populations.

Recall of anti-tobacco advertising and information, warning labels and news stories in a national sample of Aboriginal and Torres Strait Islander smokers.

OBJECTIVES: To describe recall of anti-tobacco advertising (mainstream and targeted), pack warning labels, and news stories among a national sample of Aboriginal and Torres Strait Islander smokers, and to assess the association of these messages with attitudes that support quitting, including wanting to quit. DESIGN, SETTING AND PARTICIPANTS: A quota sampling design was used to recruit participants from communities served by 34 Aboriginal community-controlled health services and one community in the Torres Strait. We surveyed 1643 Aboriginal and Torres Strait Islander smokers from April 2012 to October 2013. MAIN OUTCOME MEASURES: Frequency of recall of advertising and information, warning labels and news stories; recall of targeted and local advertising; attitudes about smoking and wanting to quit. RESULTS: More smokers recalled often noticing warning labels in the past month (65%) than recalled advertising and information (45%) or news stories (24%) in the past 6 months. When prompted, most (82%) recalled seeing a television advertisement. Just under half (48%) recalled advertising that featured an Aboriginal or Torres Strait Islander person or artwork (targeted advertising), and 16% recalled targeted advertising from their community (local advertising). Frequent recall of warning labels, news stories and advertising was associated with worry about health and wanting to quit, but only frequent advertising recall was associated with believing that society disapproves of smoking. The magnitude of association with relevant attitudes and wanting to quit increased for targeted and local advertising. CONCLUSIONS: Strategies to tackle Aboriginal and Torres Strait Islander smoking should sustain high levels of exposure to anti-tobacco advertising, news stories and warning labels. More targeted and local information may be particularly effective to influence relevant beliefs and subsequently increase quitting.

Use of nicotine replacement therapy and stop-smoking medicines in a national sample of Aboriginal and Torres Strait Islander smokers and ex-smokers.

OBJECTIVE: To examine the use of nicotine replacement therapy (NRT) and the stop-smoking medicines (SSMs) varenicline and bupropion in a national sample of Aboriginal and Torres Strait Islander smokers and recent ex-smokers. DESIGN, SETTINGS AND PARTICIPANTS: The Talking About The Smokes (TATS) project used a quota sampling design to recruit a nationally representative sample of 1721 smokers and ex-smokers who had quit ≤ 12 months before from communities served by 34 Aboriginal community-controlled health services and one community in the Torres Strait. Baseline surveys were conducted from April 2012 to October 2013. These were compared with 1017 daily smokers from the general Australian population surveyed by the International Tobacco Control Policy Evaluation Project (ITC Project) from July 2010 to May 2011. MAIN OUTCOME MEASURES: Past and intended use of NRT and SSMs, duration of use, and whether participants thought NRT and SSMs help smokers to quit. RESULTS: Compared with other daily Australian smokers, lower proportions of Aboriginal and Torres Strait Islander daily smokers had ever used any NRT or SSMs (TATS, 37% v ITC, 58.5%) or used them in the past year (TATS, 23% v ITC, 42.1%). Nicotine patches were most commonly used by Aboriginal and Torres Strait Islander smokers and recent ex-smokers (24%), followed by varenicline (11%) and nicotine gum (10%); most (74%) had got their last NRT at no cost. Among dependent Aboriginal and Torres Strait Islander daily smokers, those who were more socioeconomically advantaged were more likely than the disadvantaged to have used NRT or SSMs. Similar proportions of Aboriginal and Torres Strait Islander daily smokers and other Australian daily smokers said that NRT or SSMs help smokers to quit (TATS, 70% v ITC, 74.2%). Dependent Aboriginal and Torres Strait Islander smokers who had previously used NRT or SSMs were more likely to believe they help in quitting and to intend to use them in the future. CONCLUSION: Aboriginal and Torres Strait Islander daily smokers, particularly those who are most disadvantaged, are less likely to have used NRT or SSMs than other Australian daily smokers. Some of the barriers to use, including cost, are being overcome, but further improvements are possible.

Smoking among a national sample of Aboriginal and Torres Strait Islander health service staff.

OBJECTIVE: To examine smoking among Aboriginal and Torres Strait Islander staff of Aboriginal community-controlled health services (ACCHSs). DESIGN, SETTING AND PARTICIPANTS: The Talking About The Smokes (TATS) project surveyed 374 Aboriginal and Torres Strait Islander staff at a national sample of 31 ACCHSs, from April 2012 to October 2013. We made comparisons with adult participants in the 2008 National Aboriginal and Torres Strait Islander Social Survey (NATSISS) and with 1643 smokers in a community sample of 2522 Aboriginal and Torres Strait Islander people also surveyed in the TATS project. MAIN OUTCOME MEASURES: Smoking status, smoking behaviour at work, quitting behaviour, attitudes and beliefs about smoking and quitting. RESULTS: Aboriginal and Torres Strait Islander ACCHS staff had a lower smoking prevalence than among all Aboriginal and Torres Strait Islander adults surveyed in the NATSISS (38% v 49.8%), but this difference was smaller when compared with only employed adults (38% v 44.8%). Staff smokers had higher odds than smokers in their communities of ever trying to quit (odds ratio [OR], 2.1; 95% CI, 1.1-3.7), of having often noticed anti-smoking advertising (OR, 2.8; 95% CI, 1.4-5.6), and of having used stop-smoking medications (OR, 3.0; 95% CI, 1.6-5.7), often with the support of their ACCHS. There was a significant association (P < 0.001) between the smoking status of Aboriginal and Torres Strait Islander staff and their confidence in talking to others about smoking and quitting; ex-smokers were most likely to report being confident. Most Aboriginal and Torres Strait Islander staff who smoked (74%) agreed that being a non-smoker sets a good example to patients at their health service, and most did not smoke with patients or at work where patients could see them. CONCLUSION: Smoking prevalence among Aboriginal and Torres Strait Islander ACCHS staff is only modestly lower than among other employed Aboriginal and Torres Strait Islander people. Given that ex-smokers feel more confident to help others quit than any other group, smoking cessation in ACCHS staff is a useful contributor to reducing community smoking rates.

'Individual' harms, Community 'harms': reconciling Indigenous values with drug harm minimisation policy.

This paper uses data on the social context of drug-related harms in the Melbourne Aboriginal Community to inform an alternative model of harm minimisation, and discusses its potential application in programme development. The paper involves a secondary analysis of interviews and focus group discussions with 62 Community members who participated in a qualitative injecting drug use study conducted at the Victorian Aboriginal Health Service in Melbourne. Individuals and families within the Melbourne Aboriginal Community experience significant levels of harm associated with injecting drug use, and face restricted access to appropriate service options. This experience of drug use contributes to a broad range of values within the Community around harm minimisation approaches to programme delivery. We propose a fundamentally distinct harm minimisation model which explicitly acknowledges this range of conflicting values, and reflects the need for a breadth of services and programmes that address these tensions. Policies and funding must support Aboriginal Communities to negotiate through these conflicting Community values to actively create spaces in the service system for both using and non-using Community members. This includes the development of regional approaches which articulate an appropriate mix of services and the roles of Aboriginal and mainstream services in their delivery.