In the fall of 2016, NAMI-NYC Metro sent an e-mail to approximately 13,000 subscribers announcing an online survey to assess family members’ thoughts and beliefs about smoking among people with mental illness. E-mail subscribers included individuals who were not members of the target population (i.e., family members of individuals with mental illness who smoke), although the proportion was unknown. The announcement included a link to an anonymous online survey on the Survey-Monkey platform. The e-survey was distributed once per week over a three-week period from October 10 to October 28, 2016. In the first section of the e-survey, participants were asked to report their age, gender, race and ethnicity, smoking status (e.g., current, former, or never smoker), and whether they were related to a person with mental illness and, if so, the type of relationship (e.g., parent, child, sibling, other). We did not collect information on the family member’s discrete psychiatric diagnosis. The second section included 10 items assessing beliefs and attitudes about smoking and mental illness developed by tobacco cessation in mental illness experts and pilot-tested to asses face validity among 40 members from a NAMI state affiliate.

Among the 10 e-survey items (see Table 1), 7 items focused on common concerns people have about smoking and mental illness, 2 items assessed opinions about the health consequences of smoking for people with mental illness, and 1 item assessed beliefs about whether family members had the necessary skills to help an individual with mental illness quit. All procedures performed in this study were in accordance with the ethical standards of Dartmouth College and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The e-survey did not collect any personally identifiable information and thus was exempt from review by the Dartmouth College Committee for the Protection of Human Subjects Institutional Review Board.

During the 21 day e-survey period, 497 (3.8%) of the 13,000 subscribers to the NAMI-NYC Metro e-mail list responded to the e-survey. Fifty-two percent (n = 256) of respondents indicated that they were family members of an individual with mental illness who smokes and therefore eligible for the survey. Family member respondents were 83% female and 69% White, 11% Black, and 8% Hispanic or Latino. The median age of family member respondents was 54.7 years (SD = 14.2). Among family member respondents, 11% currently smoked, 48% formerly smoked, and 41% had never smoked. The types of relationships family members had with a loved one with mental illness who smoked included (“He or she is my …”) child (29%), parent (21%), spouse (6%), sibling (19%), extended family member (13%), and other (e.g., roommates; 12%).

The e-survey results for family member respondents are reported in Table 1. One-quarter of respondents agreed that people with mental illness must smoke to manage mental health symptoms. Nearly half (48.4%) of family member respondents expressed uncertainty about whether nicotine replacement therapy is harmful for people with mental illness. Forty-eight percent of family member respondents indicated that they were more concerned about the effects of mental illness than the effects of smoking on their loved one. Family members who never smoked were significantly more likely than those who currently or formerly smoked to agree with the statement that most family members do not have the necessary skills to help an individual with mental illness quit smoking, t(248.9) = −2.37, p = .017. There were no other significant differences in e-survey responses based on family members’ smoking status.

Results from this cross-sectional e-survey of individuals who subscribed to a NAMI e-mail list highlight uncertainty among family members about the about the effect of smoking on mental health symptoms and the safety of cessation treatment for individuals with mental illness who smoke. The results also revealed that the majority of family members do not believe they have the necessary skills to help an individual with mental illness quit smoking. These beliefs may be critical targets for family education about smoking and mental illness and suggest the need for family member skills training to help a loved one with mental illness quit smoking.

The belief that smoking helps people with mental illness manage mental health symptoms and that quitting smoking would make these symptoms worse is shared by many individuals with mental illness who smoke as well as by mental health professionals (Sheals, Tombor, McNeill, & Shahab, 2016; Trainor & Leavey, 2017; Twyman, Bonevski, Paul, & Bryant, 2014). The nicotine from smoking can provide a mild relaxing effect and temporarily relieves uncomfortable feelings of tension and anxiety associated with nicotine withdrawal. Thus, individuals with mental illness who smoke and their families develop the notion, unsupported by research, that smoking helps with mental health symptoms and they often fear adverse psychological effects of quitting. However, the majority of studies show that mental health symptoms do not worsen when individuals with mental illness smoke less or quit smoking with cessation treatment and that smoking cessation is associated with reduced depression, anxiety, and stress and improved positive mood and quality of life compared with continuing to smoke (Taylor et al., 2014; Tsoi, Porwal, & Webster, 2013).

Uncertainty about the safety of smoking cessation medication among smokers with mental illness stands as a powerful barrier to promoting its use. Numerous studies have established the safety of cessation medications, specifically varenicline, bupropion, and nicotine replacement therapies, for people with mental illness (Anthenelli et al., 2016; Tsoi et al., 2013). However, many family members do not have access to the latest scientific research on smoking cessation treatment and misinformed health professionals may reinforce family members’ concerns about the safety of cessation medication for people with mental illness (Beard, McDermott, McEwen, & West, 2012). Educating family members about pharmacotherapy and behavioral treatments for quitting has the potential to promote family member approval and support for individuals with mental illness who smoke to use effective smoking cessation medications.

Sixty-nine percent of family members who responded to this e-survey felt that most family members do not have the necessary skills to help an individual with mental illness quit smoking. Many health professionals feel unequipped to help people with mental illness quit smoking (Robson, Haddad, Gray, & Gournay, 2013) and, therefore, may not be reliable sources of guidance and support for family members who want to help a loved one quit.

National mental health advocacy and support organizations such as NAMI are promising platforms for engaging family members in interventions that give them the education, tools, skills training, and support they need to help a loved one with mental illness quit smoking. Family members and significant others of people with mental illness turn to NAMI seeking education and advice for coping with a loved one’s mental illness. Through NAMI they learn new techniques for problem solving and strategies for handling relapses and crisis and receive guidance on locating needed supports and services. Helping a loved one with mental illness to quit smoking would likely require similar access to education, peer-to-peer support, and community-based supports. Family members who never smoked were significantly more likely than those who currently or formerly smoked to believe that most family members do not have the necessary skills to help an individual with mental illness quit smoking. Almost half (48%) of family member respondents formerly smoked. Family members affiliated with NAMI who themselves have successfully quit smoking may be ideally poised to serve as peer leaders who could provide encouragement and emotional and practical support to other family members in their efforts to support a loved one’s effort to quit smoking.