Smoking and People with an Intellectual Disability
This article explores what is currently known about people with an intellectual disability who smoke and how best to support smoking cessation in those who wish to quit.
Keri-Michèle Lodge, Consultant in Psychiatry of Intellectual Disability, Leeds and York Partnership NHS Foundation Trust
Individuals with an intellectual disability experience poorer health than those in the general population with delays in access to diagnosis, investigations and treatment. Consequently, people with an intellectual disability who smoke are particularly vulnerable to the detrimental impact of smoking on their health, and on their financial and social wellbeing. Despite this, smoking among people with an intellectual disability has received little research attention, and empirical evidence to guide those working with smokers with an intellectual disability is scant. This article explores what is currently known about people with an intellectual disability who smoke and how best to support smoking cessation in those who wish to quit.
There are around 1.5 million people with an intellectual disability in the United Kingdom (UK). People with an intellectual disability experience significant health inequalities compared to the general population with higher levels of unmet need1 and delays in access to diagnosis, investigations or specialist referrals2. Indeed, the 2013 report of the Confidential Inquiry into premature deaths of people with a learning disability (CIPOLD) found men with intellectual disabilities died, on average, 13 years sooner than men in the general population, while women died 20 years earlier3. Improving the health of people with an intellectual disability is a key aim of current UK public health policy4. Alongside this, there is increasing concern around how health behaviours contributing to excess morbidity and mortality, such as smoking, may change as people with an intellectual disability move from long-stay institutions to less restricted lives in the community where they may be subject to social and environmental pressures to smoke5.
Smoking – some definitions
‘Smoking’ refers to the use of cigarettes, pipes, cigars, or hookahs, in which tobacco is burned, producing smoke which is inhaled into the lungs, absorbed into the bloodstream, then rapidly transported around the body. Tobacco smoke contains various chemicals, including nicotine which is highly addictive, and toxins and carcinogens such as carbon monoxide and formaldehyde. The health impacts of smoking are well established, and include chronic obstructive pulmonary disease, cerebrovascular disease, cardiovascular disease, stomach and duodenal ulcers, erectile dysfunction, osteoporosis, age-related macular degeneration, cataracts and peridontitis6.
‘Passive smoking’ occurs when people who are not actively smoking themselves are in the vicinity of smokers and thereby exposed to tobacco smoke (known as ‘second-hand smoke’), leading to an increased risk of smoking-related diseases. Children exposed to second-hand smoke are at increased risk of conditions including asthma and otitis media, whilst exposed babies have an increased risk of miscarriage, premature birth, low birth weight and sudden unexpected death in infancy6.
‘Vaping’ describes the use of electronic cigarettes (‘e-cigarettes’) - cigarette-shaped vaporizers which use batteries to heat a solution containing nicotine mixed with water, flavouring and glycerine, allowing users to inhale the nicotine-containing vapour (‘vaping’) without producing smoke. There are many different types of e-cigarettes available, each containing varying amounts of nicotine. E-cigarettes do not contain tobacco, and the health effects of vaping on smokers and bystanders are thought to be lower than that of smoking cigarettes, although the impact on longer-term health is unknown7. One key risk of vaping is that of accidental fire arising from the use of battery chargers7.
How many people with an intellectual disability smoke?
Although rates of smoking have decreased in the general population since the 1960s, around 19% of UK adults report that they smoke and smoking remains the single greatest cause of preventable morbidity and mortality, causing around 78,200 (17% of all) deaths each year in England8.
Epidemiological studies in the general population suggest rates of smoking are higher in particular groups, including: people with routine or manual backgrounds compared to those in managerial or professional roles, unemployed people, homeless people, people with no qualifications, prisoners, and those who are lesbian, gay or bisexual9. Smoking is especially common in people with mental health difficulties. Around 33% of people with mental health difficulties, such as schizophrenia,10 and approximately 70% of patients in psychiatric inpatient units, smoke.11 People with a mental health difficulty die 10-20 years earlier, on average, than people in the general population, and smoking is the single biggest factor contributing to this difference12. Furthermore, smoking exacerbates poverty and social stigma of people with a mental health difficulty.12
Similarly, people with an intellectual disability are already a marginalised group more likely than those in the general population to be exposed to social determinants of poor health such as socioeconomic deprivation13, compounding the negative impacts of smoking on the health, social and financial wellbeing of this group. Despite this, little research attention has been focussed on determining smoking prevalence among people with an intellectual disability. Smoking rates reported in the small number of published studies vary because of heterogeneity in participants’ severity of intellectual disability and living circumstances. Some studies report a lower smoking prevalence compared to the general population. For example, one questionnaire-based survey of 435 people attending four social services day centres for people with an intellectual disability in one large urban area in the UK found 6.2% reported that they smoked14. Conversely, one Australian study reported a higher smoking prevalence of 36% in the group of people with mild intellectual disability in the independent community settings surveyed compared to 26% in the general population15. Other research suggests a smoking prevalence similar to that in the general population16.
Overall, although the evidence base is limited, it suggests that smoking is “…a reasonably common activity for individuals with intellectual disabilities”17. Indeed, among those with mild or moderate intellectual disabilities, levels of smoking are similar to the general population5. Furthermore, compared to the general population, smoking rates are higher among people with an intellectual disability who do not access specialist intellectual disability services13, are adolescent,18 live in less restrictive residential settings,19 live with someone who smokes20, or who are themselves parents21.
Passive smoking among people with an intellectual disability has received even less research interest. Indeed, no published studies have specifically examined mortality and morbidity attributable to second-hand smoke in people with an intellectual disability, nor the prevalence of exposure to smoking from others, such as carers, in this group.
Similarly, little is known about vaping among people with an intellectual disability. The prevalence of vaping is around 5% of adults in the general population in the UK7. Evidence suggests that the majority of people who vape are current or ex-cigarette smokers; the prevalence of vaping among people who have never smoked cigarettes is around 0.2%7. To date, there are no published studies reporting on rates of vaping among people with an intellectual disability.
It is important that those working with people with an intellectual disability do not make assumptions - people with an intellectual disability may themselves smoke or vape, and may be exposed to second-hand smoke.
Public health policy – smoking reduction
As smoking is the primary preventable cause of disability and disease in the UK, the UK government’s current public health strategy makes clear that reducing rates of smoking is central to improving public health and reducing health inequalities22. Decreasing the number of people who smoke would also reduce exposure to second-hand smoke. The UK government aims to halve the prevalence of smoking to 10% by 2020 by making smoking less accessible, less desirable and less acceptable23. Various priority groups are identified in smoking reduction policies: adolescents, pregnant women, black and ethnic minority groups and those with mental health conditions24. Although an individual with an intellectual disability could also fall into one of these groups, people with an intellectual disability are not deemed to be a priority group and are not specifically mentioned. Similarly, although people with an intellectual disability are not excluded from smoking reduction policies, as the next section explores, these are informed by studies whose participants are from the general population, and are generic strategies which may not meet the specific needs and abilities of people with an intellectual disability.
How can smoking be prevented in people with an intellectual disability?
Decreasing the number of new smokers is key to reducing smoking prevalence. Research among the general population suggests that people who smoke usually start in childhood or adolescence, quickly becoming addicted after trying cigarettes25. In addition, compared to non-smoking households, children in households where a parent or sibling smokes are around three times more likely to become smokers themselves25. Other factors influencing smoking uptake include: the ease of obtaining cigarettes, smoking by friends and peer group members, socioeconomic status, exposure to tobacco marketing, and depictions of smoking in films and television23, 24, 25. Pressure from peers and a desire to fit in with the wider local community are key factors in maintaining smoking throughout adulthood25.
It is not clear whether similar factors affect people with an intellectual disability, and the research base to inform our understanding of the factors influencing the uptake of smoking among people with an intellectual disability is poor. Hymowitz et al (1997) suggest that, among people with an intellectual disability, smoking may be used as a symbol of maturity, enhancing self-esteem and confidence16. Another more recent study utilized a focus group of 15 health and social care professionals who work with people with an intellectual disability to explore this issue, with participants highlighting the influence of residing in long-stay institutions, where smoking rates have traditionally been high26. Participants commented that, in such settings, people with an intellectual disability may: use smoking to manage their emotions; obtain comfort from the ritual of smoking a cigarette; use smoking to relate to others; and may use cigarettes as a form of currency27. In the same study, a focus group of 16 people with an intellectual disability suggested people with an intellectual disability use smoking to cope with boredom or because they lack alternative strategies to manage their emotions26. Interestingly, these participants also suggested that, when making a decision about whether to smoke or not, people with an intellectual disability may find it particularly difficult to understand the longer-term health risks of smoking26. Similar findings were reported in a previous study which found knowledge about the health risks of smoking was poor among people with an intellectual disability, and only one third of those who smoked were concerned about such risks14.
Improving knowledge of the risks of smoking is a key component of current UK policy to prevent the uptake of smoking among children and young people. Guidance from the UK’s National Institute for Health and Care Excellence (NICE) states that information to deter tobacco use should be part of the curriculum in science and personal, social, health and economic education, and that young people should be equipped to discuss the risks of smoking and to challenge family and peer norms27. However, whether such educational interventions are accessible to children and young people with an intellectual disability is not clear. Indeed, there has been little research around the most effective ways to deliver health education about smoking to children and young people with an intellectual disability. One study investigated the efficacy of a generic smoking and alcohol prevention e–learning programme among 210 12-15 year old pupils with mild and borderline intellectual disability in five secondary special-needs schools28. The authors report that, to obtain effective results on knowledge and attitudes towards smoking and alcohol use, it was necessary to adjust the delivery of the program, using additional repetition and role-playing28.
In conjunction with educating children and young people about the risks of smoking, current UK public health policy aims to reduce the accessibility and attractiveness of smoking via, for example, bans on smoking in public places and vehicles, ‘smoke-free’ mental health settings, restrictions on advertising, banning eye-catching displays in supermarkets, high taxes on tobacco products, and banning the sale of tobacco to those aged under 18 years. Additionally, the European Tobacco Products Directive due to be transposed into UK law in 2016, requires large picture warnings about the damaging effects of smoking on health to cover 65% of all tobacco products, including a warning stating “smoking kills” or “smoking kills – quit now”29. However, little is known about whether health messages on cigarette packaging are accessible to and understood by people with an intellectual disability.
There is, then, a clear need for further research to investigate the factors influencing people with an intellectual disability to smoke, including individuals’ knowledge and attitudes, and importantly to determine the most effective ways to deliver health education about smoking to this group.
How should we support people with an intellectual disability who want to stop smoking?
Informing people about the health benefits of smoking cessation can help motivate smokers to attempt to quit. However, assimilating health promotion information and understanding that future health problems can be avoided by stopping smoking now may be difficult for people with an intellectual disability.26 In addition, quitting requires people to resist social, environmental and personal factors influencing their smoking, and this may be especially challenging for people with an intellectual disability. Despite this, there has been little research focusing on people with an intellectual disability who want to quit smoking, and it is not clear what types of support best helps them quit.
In the UK, NICE provides generic guidance for helping people reduce and quit smoking30. Whilst people with an intellectual disability are not excluded from these guidelines, studies used to inform them have generally not included people with an intellectual disability, thus their applicability and effectiveness for people with an intellectual disability is not established.
To identify people who require support with smoking cessation, the NICE guidelines recommend that all primary care professionals should ask people using their services whether they smoke. However, people with an intellectual disability are less likely to be asked if they smoke, as clinicians may make assumptions that these individuals do not smoke31. In the UK, annual health checks for adults and young people aged 14 years or above with moderate, severe or profound intellectual disability, or mild intellectual disability and complex needs who are known to their local authority social services, provide an important opportunity for practice nurses or general practitioners routinely to ask about smoking32. See http://www.intellectualdisability.info/how-to-guides/articles/annual-health-checks-for-people-with-intellectual-disabilities-in-general-practice However, providing annual health checks for people with an intellectual disability is discretionary, and there is geographical variability in the provision of this service33. Those practices which do attempt to provide annual health checks may struggle to establish which patients should be invited and some eligible patients may be missed34. Indeed, in 2013-14, only 44.2% of eligible people with an intellectual disability received an annual health check33.
Other research suggests people with an intellectual disability and their carers may not disclose smoking to healthcare professionals for fear of negative judgement31. How best to identify smokers with an intellectual disability so that they can be offered advice and support to quit has yet to be established.
The NICE guidelines recommend that primary care professionals should advise all those identified as smokers and should offer information on the harms of smoking and the health benefits of quitting30. There is little to guide primary care professionals on the most effective way to tailor such information to meet the needs of people with an intellectual disability, who may require information to be provided in alternative formats, for example, using simple English or pictures. This may require further adjustments, such as longer appointment times. Whether primary care professionals have the experience and training required to make the adjustments necessary to ensure smoking cessation information is accessible to people with an intellectual disability is unknown.
NICE recommends that smokers who wish to quit should be referred to NHS Stop Smoking Services for further advice and support, which may include medication and/or behavioural therapy, from healthcare professionals trained in smoking cessation30. Those who do not wish to quit should also be offered further support to encourage them to reduce their use of cigarettes30. However, people with an intellectual disability may face particular challenges when trying to access NHS Stop Smoking Services, especially as professionals providing these services do not usually have specific training around the abilities and needs of this group. In addition, Lawrence et al (2009) suggest that accessing stop smoking services and attempting to quit smoking requires particular skills which people with an intellectual disability may require additional support with, including:
-self-control to resist urges to smoke
-applying abstract knowledge about the harms of smoking to acute social contexts26
The focus group of individuals with intellectual disabilities in Lawrence et al’s (2009) study highlighted the importance of regular support from family or support workers to encourage their attempts to quit26. In addition, the health and social care professionals in the study suggested other factors which help smokers with an intellectual disability to quit, including modelling of desired behaviour (for example, peer modelling - learning from other people with an intellectual disability who have successfully quit smoking), along with supporting the use of self-monitoring/diaries to enhance impulse-control, goal-setting and incentives to enhance motivation, and problem-solving to improve self-efficacy26.
In addition, given that previous research has suggested that people with an intellectual disability may use smoking to manage emotions20, 26, helping people to develop alternative coping strategies is vital.
Lawrence et al (2009) argue that increasing opportunities to exercise self-advocacy is key, hoping for a situation where an individual “…finds themselves moving through a world where, whoever they encounter, they are encouraged not to smoke and any self-efficacy is continuously encouraged and celebrated.”26 However, health and social care professionals may have differing views on whether encouraging individuals to change their lifestyle choices, such as smoking, should be part of their role26. This raises the important issue of mental capacity, which, as the next section explores, is an additional complexity in considering smoking cessation in people with an intellectual disability.
Mental capacity and smoking
In the general population, people who smoke have the right to make this lifestyle choice despite the negative impacts on their health, social and financial wellbeing. However, health and social care professionals supporting a person with an intellectual disability who smokes may question whether the person is making an informed choice to smoke, and if not, whether they have a role in stopping the person from smoking (see vignette below).
Clinical vignette – smoking, intellectual disability and mental capacity
Darren is a 50 year-old, single, unemployed man with a moderate intellectual disability who lives in a small residential home, having spent much of his earlier live in long-stay institutions. He has smoked since the age of 16, when he took up smoking one cigarette on the hour every hour during the day whilst in long-stay institutions. His cigarettes and lighter are kept in a locked drawer in the manager’s office as part of the home’s standard procedure for reducing the risk of fire, and he knocks on the office door on the hour, every hour during the day, to ask for a cigarette.
Darren has a chronic cough, and at his annual health check three years ago, the nurse told him smoking might be making him cough. Unfortunately, Darren felt that the nurse was telling him off, became upset, and has been too frightened to see the nurse or GP since.
Although he tells his support workers he is bored, Darren frequently misses out on trips to the cinema or cafes because he has spent all his money on cigarettes. He tells his support workers he wants to carry on smoking as it is his only hobby.
His mother and brother feel that Darren does not understand how his smoking is impacting on his health and want his support workers to stop giving him a cigarette every hour.
In this scenario, an assessment of Darren’s mental capacity to make a decision about smoking is warranted.
The Mental Capacity Act (2005)35 sets out a two stage test to determine if a person has the ability to make a specific decision about their day-to-day care or treatment (see below). See also http://www.intellectualdisability.info/changing-values/articles/legislation-and-clinical-practice-in-intellectual-disability The Act’s five underlying principles recognise that:
-Health and care professionals should always assume an individual has the capacity to make a decision themselves, unless it is proved otherwise through a capacity assessment.
-Individuals must be given help to make a decision themselves. For a person with an intellectual disability, this may include being given information in a format that meets their communication needs, for example, using simple language and/or pictures.
-Just because someone makes what those caring for them consider to be an "unwise" decision, they should not be treated as lacking the capacity to make that decision.
-If a person is found to lack the mental capacity to make the decision following a mental capacity assessment, the decision can be taken for them but must be taken in their best interests.
-Treatment and care provided to someone who lacks the mental capacity to make the decision in question should be the least restrictive of their rights and freedoms.
Assessing mental capacity
(See http://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf )
The Mental Capacity Act (2005) two-stage test for assessing whether an individual has the mental capacity to make a specific decision at a particular point in time:
1.Does the individual concerned have an impairment of, or a disturbance in the functioning of, their mind or brain, whether as a result of a condition (for example, an intellectual disability or dementia), illness (for example, a mental health difficulty such as schizophrenia or depression, or a physical illness - a wide range of physical health conditions can affect the functioning of the mind or brain, including delirium and conditions which cause extreme pain), or external factors such as alcohol or drug use? If so,
2. Does the impairment or disturbance identified in Stage 1 above mean the individual is unable to make the specific decision of interest when they need to? The Mental Capacity Act holds that an individual is unable to make a decision if they cannot do one or more of the following:
- Understand the information relevant to the decision
- Retain that information
- Use or weight up that information as part of the process of making a decision
- Communicate their decision by any means
- To complete Stage 2 of the assessment above for a person with an intellectual disability, it is important that:
- the assessment is carried out in a location that the person feels at ease in
- the assessment is carried out at a time of day when their understanding might be better
- information relevant to the decision is presented in an accessible format
- the most effective way to communicate with the individual has been explored – this may include non-verbal communication, and carers/families and/or speech and language therapists should be involved in determining how best to facilitate communication.
Exploring whether a person with an intellectual disability who smokes has the mental capacity to make a decision about smoking is an important consideration for health and social care professionals. Assessing an individual’s mental capacity to make a decision about smoking is a difficult task. As stipulated by the Mental Capacity Act, for those individuals deemed to lack the mental capacity to make a decision about smoking, a best interests decision would need to be made. One possible outcome of such a decision may be that it is deemed to be in the individual’s best interests to stop smoking. As a consequence, it may be decided that the professionals who work with the individual should play a role in restricting the individual’s consumption of cigarettes and supporting other interventions to help them quit.
Which smoking cessation therapies are effective for people with an intellectual disability?
As with people in the general population, individuals with an intellectual disability who wish to reduce or quit smoking should be offered smoking cessation therapies including medication and/or behavioural therapies. However, few studies have examined the effectiveness of these interventions among people with an intellectual disability. One recent single-case study reported on the use of a mindfulness-based smoking cessation intervention including basic concentration meditation and mindful observation of thoughts for a man with mild intellectual disability17. In a further, larger study comprising 51 participants, the authors conducted a randomized controlled trial comparing the mindfulness-based intervention to a control group of treatment as usual. Those receiving the intervention showed a statistically significant reduction in smoking compared to the control group, and the authors suggest that mindfulness-based interventions may be effective in people with an intellectual disability36.
The need for further, well-designed trials to identify the most effective interventions for smoking cessation in people with intellectual disability was confirmed by a recent systematic review of interventions for both tobacco and alcohol use among people with mild or moderate intellectual disability37. The authors searched key electronic databases from 1996-2011 and found just four studies examining interventions for tobacco use, all of which were small and had methodological limitations, and no meaningful conclusions could be drawn as to which interventions should be recommended. However, a number of important issues related to the need for tailoring interventions were identified, including the use of pictures, quizzes, role-play and incentives37.
Currently, then, there is little evidence to guide the provision of support for people with an intellectual disability who wish to cut down or quit smoking. Until further studies are conducted, people with an intellectual disability should continue to be offered generic smoking cessation service support. However, this should be tailored to meet the needs of individuals with an intellectual disability, and innovative approaches to collaborative working between smoking cessation services and health and social care professionals, families and carers, as well as individuals with an intellectual disability, should be explored.
Smoking is an important public health matter, yet little is known about the prevalence of smoking, passive smoking and vaping among people with an intellectual disability, nor the factors which influence the uptake, continuation or cessation of smoking. Further research is urgently required to inform evidence-based approaches to reducing smoking among people with intellectual disabilities, and particularly to develop smoking cessation interventions tailored to meet the needs of this group. People with intellectual disabilities should be regarded as a priority group in the context of public health policies around smoking cessation to help reduce the significant health inequalities experienced by this group.
See also https://www.rdash.nhs.uk/wp-content/uploads/2014/02/DP6851-Stopping-smoking-photo-journey-04.18.pdf which provides very helpful advice and information about how to stop smoking, through a series of pictures.
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This article was published on the website in September 2016.