Presenting on behalf of Ms Jacqueline Bailey The provision of smoking cessation care for people with a mental illness: Carers’ expectations of health and community services Jacqueline Bailey, Paula Wye, Emily Stockings, Kate Bartlem, Alexandra Metse, John Wiggers, Jenny Bowman Dr Kate Bartlem Presenting on behalf of Ms Jacqueline Bailey

‘Physical Health in Mental Illness Research Group’ Understanding and addressing physical health disparities by undertaking research on: Need, use, acceptability and effectiveness of existing supports Integrating care for physical health across mental health services and the community Systems and clinical practice change within mental health services to increase care for physical health First I want to give just a little context to the work that I’ll be presenting, by giving just a little background into the group that I work with. I work within a group that we refer to as the Physical Health in Mental Illness Research Group. The work that this group has been doing started with a focus on smoking among people with a mental illness, and in the last few years we’ve been expanding into other chronic disease risk behaviours, like diet, physical activity and alcohol. The main aim of our work broadly is to understand and address the physical health disparities experienced by people with a mental illness, particularly in relation to these modifiable health risk behaviours. Broadly, we have been looking at: Use, acceptability and effectiveness of existing supports for addressing these behaviours – for example looking at existing mental health services, or other services like the Quitline Integrating care for physical health across mental health services and the community – for instance – what happens if we can extend smoking cessation care post discharge from an inpatient facility, or looking at whether carers could be used to help address these behaviours Lastly, looking at systems and clinical practice change interventions in mental health services to try to increase care that is provided for these risks. The work that I will be presenting today is focusing on smoking specific data, that looks more at client behaviour and attitudes, and fits more within the acceptability of existing supports area.

Mental Illness and Smoking People with a mental illness: More likely than the general population to smoke Smoke more heavily More nicotine dependent Experience higher levels of smoking-related morbidity and mortality Priority group for smoking cessation Health care services provide an important opportunity for smoking cessation care: Smoke free policies Smoking cessation guidelines People who have a mental illness are far more likely than the general population to smoke tobacco. Aust gen stats and ppl with a mi. We also know that people with a mental illness smoke more heavily, and are more nicotine dependent than the general population, As a result, people with a mental illness experience much higher levels of smoking related morbidity and mortality. Their life expectancy is anywhere between 12 and 30 years less than the general population, and most of this increased burden is due to chronic physical illnesses that are strongly associated with smoking - cardiovascular disease, respiratory conditions and cancers. As such, they have been identified as a priority group for smoking cessation efforts in many countries, including here in England, in Australia, and in the US.   Health care services, including mental health care services, are an appropriate setting and opportunity to support people with a mental illness to stop smoking. Smoke-free policies and smoking cessation care guidelines that have been introduced in health and community services apply equally to people with a mental illness. Yet, despite these policies and guidelines, smoking cessation support is not routinely provided to smokers with a mental illness in a range of service settings – both general, and mental health specific.

Carer Expectations To address suboptimal smoking cessation care, a holistic approach is required ‘Carers’ play a critical role in the care and support of people with mental illness Interaction with a variety of health and other services: Attendance at appointments Extending interventions at home Carers identified as key stakeholders in mental health service provision An understanding of their views/expectations regarding smoking cessation care is needed To address the suboptimal smoking cessation care, we need to take a more holistic approach that engages a variety of important stakeholders. One important stakeholder which have been overlooked, at least in the research literature, are family carers of people with a mental illness. Carers are individuals who provide care and assistance without payment, and play a critical role in the care and support of people with a mental illness. Being a carer involves interaction with a variety of health and other services, including attendance at appointments and supporting or extending service interventions in the home environment. Carers have been identified as key stakeholders in mental health service provision and an understanding of their views and expectations with regard to smoking cessation care is needed and to date, has not been thoroughly explored.

Aims Examine carer expectations of smoking cessation care provision Four settings: Mental health hospitals Community mental health services General Practitioners (GP; primary care providers) Community based Non-Government Organisations (NGO) Explore variables associated with an expectation of smoking cessation care The current study aimed to examine carer expectations of smoking cessation care provision to people with a mental illness by four health and community care settings: mental health hospitals, community mental health services, general practitioners and community based non-government organisations. The study also aimed to explore socio-demographic and attitudinal factors associated with an expectation of smoking cessation care from these services.

Methods 144 carers of a person with a mental illness in NSW Australia Self-administered questionnaire Socio-demographic items Caring relationship Smoking status Perceived effects of smoking on mental health Expectations of care Attitudes to smoke free policies Logistic regression was used to explore factors associated with an expectation of smoking cessation care We undertook a survey with 144 carers of a person with a mental illness in one local health district in the state of NSW, Australia The self-administered questionnaire contained items on: the socio-demographic characteristics of the carers and the person they cared for; items on the nature of the caring relationship (for instance how long the carer had been in a caring role, if they lived with the person they cared for); the smoking status of the carer and person with a mental illness; carer perceived effects of smoking on mental health carer expectations of smoking cessation care provision in each of the four settings – so for each service type, whether they thought that servie should provide smoking cessation care to people with a mental illness; And lastly we looked to determine their attitudes to smoke free policies in mental health services – by asking them whether they thought smoke free policies were a good thing – in inpatient and in community mental health settings The data I will present today, will just be some basic descriptives, and also some logistic regression analyses used to explore factors associated with an expectation of smoking cessation care

Sample demographics (N=144) % of carers Female 81% Over 54 years of age 76% Parent of the person they care for 62% Living in the same residence 52% Caring for more than 20 years 30% Caring for a smoker 69% Carers who smoked 12% Of the 144 participating carers, 81% were female, 76% were over 54 years of age, 62% were the parent of the person they cared for, 52% were living in the same residence with the person they cared for, 30% had been caring for that person for more than 20 years. 69% reported that they cared for a smoker. And 12% of the sample identified themselves as a smoker.

Smoking: impact on mental health? This pie chart shows responses to an item querying if carers thought smoking tobacco would have a negative impact on mental health. Overall, 59% of carers thought smoking had a very negative impact on mental health, with only 6% reporting no effect and 10% being unsure. On the other side of the coin, this green chart shows responses to an item querying if carers thought that quitting smoking might have a positive impact on mental health. A similar proportion (62%) of carers thought that quitting smoking would have a very positive impact on mental health.

Expectations of smoking cessation care This graph shows the proportion of carers who perceived that each of the service settings should provide smoking cessation care to people with a mental illness. You can see that the majority of all carers considered that smoking cessation care should be provided in all four health and community care services. Carers had the highest expectations of GPs providing smoking cessation care with 83% of carers thinking they should provide it, with mental health hospitals and community mental health services slightly lower at 71% and 78%. Expectations were lowest for NGOs, with 57% of carers thinking they should provide smoking cessation care.

Smoke Free Policies – A good thing ? This graph shows the various responses provided by carers is regards to whether smoke free policies in mental health services are a good thing. In the green, we have responses for mental health hospitals or inpatient settings, and in the yellow we have responses for community mental health services. Here on the left, you can see that half of the carers either agreed or strongly agreed that total smoking bans in mental health hospitals are a good thing, and 2 thirds agreed or strongly agreed that they are a good thing in community mental health services. Even so, on the very right, you can see that around a quarter of carers disagreed or strongly disagreed – so they did not think that smoke free policies are a good thing in mental health services

Associations with expectations of smoking cessation care Odds Ratio p Quitting smoking- Very positive impact on mental health Mental health hospitals 3.4 .006 Community mental health service 3.5 .018 NGO 2.3 .039 All services 2.1 .044 Residing in the same residence .391 .033 .288 .022 .408 .031 This table shows results from the analysis of factors that might be associated with carers expecting smoking cessation care in each setting. Carers holding the view that ‘quitting smoking would have a very positive impact on mental health’ was the factor most consistently and strongly associated with expecting smoking cessation care. Carers holding this view were more than 3 times as likely to expect smoking cessation care to be provided by mental health hospitals and community mental health services and more than twice as likely to expect smoking cessation care by NGOs and in all settings. Carers who lived with the person they cared for were less likely to have an expectation that health and community services should be provided by mental health inpatient serives, community mental health services, and NGOs.

Some interesting findings… Smoke free policies in mental health settings – a good thing? % who disagreed, strongly disagreed or were unsure: 49% inpatient setting 35% community setting Expectations of smoking cessation care were lower for carers residing with the person they care for Role of carers? Its likely that these opinions are influenced by previous experiences with smoke free poliies, One thing that we didn’t explore is the previous experiences carers have had with smoke free policies. We know from the literature, that attitudes towards smoke free policies, how well they work, and the number of incidents that occur are influenced by how well the smoke free policy is implemented, whether it’s a total or partial smoke free ban, and whether adequate nicotine dependence treatment is provided. In the health service that this was undertaken in, our MH services have been smoke free for a number of years, but implementation and compliance has been very poor. Purely speculative, but its possible that these findings might be influenced by previous experiences of inconsistent implementation of smoke free policies, and this is something we would need to explore further Our regression analyses revealed that a carer residing with the person they cared for was associated with a lower expectation of smoking cessation care in 3 of the services studied. It may be that cohabiting carers perceive less of a need for health and community services to provide such care, as they see themselves as having more of a role in supporting smoking cessation. This is something that we can’t know from this data, but we are currently looking at some other survey data and qualitative focus group data, to try to understand the role that carers see themselves as having in supporting smoking cessation for the people they care for.

Implications Carers perceive negative impact of smoking on mental health Carers may be important advocates to encourage smoking cessation Carers expect smoking cessation care from services Need for effective and systematic smoking cessation care provision in health and community care services for people with a mental illness Summing up, the majority of participating carers are aware of the negative impacts smoking has on mental health, and are also aware of the positive impacts that quitting smoking can have on mental health. Such perceptions might suggest that carers may be receptive to being involved and to encourage smoking cessation for the person they care for. Carers also expect smoking cessation care from all four health and community care services, and as such they could be utilised as important advocates for really pushing for increases in smoking cessation care to people with a mental illness And such expectations really reinforce the need for health and community service settings to provide smoking cessation care for clients with a mental illness in an effective and systematic manner.

Acknowledgements and Contacts Participating carers Carer Assist NSW Kate.Bartlem@Newcastle.edu.au Jacqueline.M.Bailey@uon.edu.au