The characteristics of the 55 individuals that agreed to be interviewed versus those that were invited but did not participate in the interviews are displayed in Table 1. Our iterative sampling required us to contact 170 individuals to achieve the sample of 55 (31% participation rate). Participants were an average age of 50.6 years; 76% were female, 58% were African American, and 57% received Medicaid. Overall, those that participated were similar across characteristics to those that did not participate.
Table 1. Characteristics of interview participants and non-participants
Characteristic
|
Total
N=170
|
Participants
n=55
|
Non-participants
n=115
|
Age, mean (std dev)
|
51.3 (13.2)
|
50.6 (12.0)
|
51.6 (13.8)
|
Female
|
108 (64%)
|
42 (76%)
|
66 (57%)
|
African American
|
95 (56%)
|
32 (58%)
|
63 (55%)
|
Insurance type
|
|
|
|
Commercial
|
4 (2%)
|
1 (2%)
|
3 (3%)
|
Medicaid
|
106 (62%)
|
31 (57%)
|
75 (65%)
|
Medicare
|
58 (34%)
|
21 (39%)
|
37 (32%)
|
Self-pay
|
1 (1%)
|
1 (2%)
|
0 (0%)
|
Our analysis generated six themes, or clusters of meaning, that shed light on the common experiences, motivations and understandings of those who did not complete the available five counseling sessions offered by the QL. We found that these themes crosscut the QL categories of ‘declined’ and ‘unable to be reached’. These themes are not mutually exclusive, and many patients reported more than one theme. We discuss each of the themes below. Additional example quotations for each theme are provided in Table 2.
[Please see the supplementary files section to view Table 2.]
Reasons for QL disengagement
- Differing expectations regarding the QL referral
The degree to which participants understood what the QL counseling process involved varied a great deal. In some cases, participants expected the cessation counseling to be in-person, at a local hospital or clinic. When these participants became aware that the counseling was via telephone, some were uncomfortable with the prospect of speaking with a “stranger” or “random people”. In other cases, individuals did not understand they were accepting a referral. At the time, they were experiencing symptoms related to the reason for their visit to the doctor, such as trouble breathing, or intense pain: “I’m in too much pain sometimes when I go to the doctor. So I’m just like ‘Okay. Yeah, I know. I know.’” [ID# 14] Another area of misunderstanding was the role of the QL in supporting smoking cessation. Some participants believed the QL simply provides NRT free of cost, and had no interest in counseling: “Basically they was telling me that you gotta do counseling and stuff, and that’s not what I was looking to do. I was basically looking just to get the patches and try to do it on my own.” [ID# 39]
- Changing life circumstances and stressors
Another pervasive theme was that stress from traumatic events or changing life circumstances made it difficult for many participants to begin or stick with the program, and in some cases resulted in the participant no longer feeling ready to quit. The circumstances mentioned by these participants included stressors such as housing instability, serious illness or hospitalization, recent death of a loved one, and being the victim of a crime: “They call me every two weeks to coach me to stop smoking. But like I told them this past week - I was being honest with them ‘cause I was avoiding their calls when they came through - I never did stop smoking, or slow down, due to the fact that I am stressed big time, living in a box… And it’s a whole lot of other stressful stuff going on in my family, of me burying people. And I’m just out of it. So I’m not really on the right track of stop smoking.” [ID #24]
- Unable to find a time for counseling
Several participants expressed that, although they were interested in quitting smoking, they found it difficult to find time to engage in a QL counseling call. Participants spoke of having a job or multiple jobs that kept them too busy to contact the QL, or unpredictable work schedules that made it difficult to keep appointments with the QL. In addition, many participants had responsibilities such as taking care of children, parents and other family members. These priorities often meant that QL counseling was either intentionally or unintentionally put on the backburner. Engaging in counseling sessions with the QL “takes too much time out of my days, and I don’t have the time.“ [ID #39]
- Cell phone barriers
Access to a properly functioning phone with a consistent number and uninterrupted service was a common barrier for the QL reaching participants. For some, a disruption in cell service precluded the QL from making contact with a participant: “I know that [the MA] recommended me, and the people were supposed to call me from the 1-800-quitline. But the time they was calling, my phone was cut off.” [ID #19] Further, if participants reported that their cell phone was lost, stolen, or no longer functioning, replacing it was not always viable immediately. In some cases, they had to wait until funds were available. Additionally, the QL phone number is a 1-800 number that does not appear with a description in caller ID. Some individuals were suspicious of unidentified numbers and/or had a policy of not answering 1-800 numbers. Although the QL does leave messages, many participants reported not listening to their messages, especially if it was from an unknown number.
- Discomfort with/disbelief in the efficacy of QL counseling
Another reason for declining the QL program or being unreachable was discomfort with the phone counseling experience, or the belief that it would not help them quit. Some participants did not feel a personal connection to the counselor, and therefore felt hesitant about discussing their situations. Others, even while acknowledging that the QL information was helpful, did not feel the counseling process would actually help them quit smoking: “I never knew about the phone therapy. That was my first time experiencing it, knowing about it. So I tried it out and I didn’t like it.” [ID #24].
- Quitting on their own
A few unreachable or disenrolled participants, as identified by the QL, had already quit smoking or cut back significantly prior to the completion of the QL protocol. These individuals felt confident in their ability to stay tobacco-free or continue the quitting process, and felt they no longer needed assistance from the QL.
Quitline benefits and ongoing support
Another common theme that emerged among those who had received any QL counseling, including those who at some point disengaged and did not complete the protocol (‘declined’ or ‘unable to be reached’), was that they benefitted from the experience. While some participants reported quitting or cutting down on their smoking, others reported an increased desire to quit, more awareness of their smoking behavior, or some other form of incremental progress in smoking cessation:
“It was helpful. It definitely was. When I do wanna smoke a cigarette, that (counseling advice) always plays in my ear. So I’ll never forget that every time I pick up a cigarette. So that’s making it better for me.” [ID #49]
Another finding was that several participants who completed the QL program, or were no longer receiving calls because they had been categorized as declined or unreachable, desired continued cessation support. One patient had agreed to the eReferral, but was in the hospital for an emergency surgery when the QL called, so she declined to speak with them at that time:
“Yes, I would (like to talk to the QL), because it was just a misunderstanding and the wrong moment. That’s all it was.”[ID #19]
Another patient had completed her 5 counseling sessions with the QL, but had not completely quit smoking yet:
“Yeah. I’d still like to talk to them. That way we can still set goals and have the motivation to keep going.” [ID #54]
With regard to the larger, primary care context of smoking cessation, the overwhelming majority of patients reported wanting providers’ continued offers of assistance and support with smoking cessation. When asked what role they wanted their primary care providers to play in their smoking cessation, participants expressed the desire for ongoing assistance and encouragement:
“’If this don’t work, let’s go to the next level,’ you know. In other words, let’s not give up on me. You know, “Come on - you keep trying until we find the right thing for you.’ That’s what I want.” [ID #14]
“Just check up to see how I’m doing. Am I still smoking? Am I not smoking?” ‘How are you doing with your smoking?’ or ‘If you are still smoking, is there something else that we can do to help you stop smoking?’ Those type of questions.” [ID#42]