Data collection procedures for in-depth telephone interviews and in-person focus groups, including informed consent, were approved by the University of Florida Institutional Review Board.
Instrument development for the focus groups and interviews was guided by definitions of health as articulated by Wolinsky and Zusman and WHO, as well as constructs within theories of health behavior derived from the Health Belief Model and the Theory of Planned Behavior. The goal of this research was to capture beneficiary sentiments and opinions about what health means to them and their ability to “control” their health. Wording and content were refined after conducting an initial pilot focus group with Medicaid beneficiaries. During the pilot focus group, it was noted whether the participants misinterpreted questions, and they were asked to suggest alternative language and make recommendations for additional questions. An iterative process, typical of qualitative research, was used to continuously revise the instrument based on participant responses, interviewers’ observations, and team analyses of data.
Participant Recruitment and Data Collection
Focus groups and individual in-depth telephone interviews were conducted with adults and parents of children who were enrolled in the Medicaid program in the state of Florida. Community liaisons posted flyers and used personal contacts to recruit participants to focus groups. The focus groups lasted approximately 45 to 60 minutes and each participant received a $20 gift card.
Eligibility files from the Florida Medicaid program were used to identify individuals for telephone interviews. Recruitment letters were mailed to randomly selected beneficiaries. The letters were followed up with phone calls to schedule telephone interviews. After the completion of each interview, participants were mailed a $10 gift card. Respondents were recruited and interviewed until it was determined that a point was reached where no new information was being collected. Interviews and focus groups were audio recorded and transcribed verbatim. All participants provided verbal informed consent prior to participation in the study.
There were 32 participants for individual interviews, and 57 individuals participated in 7 focus groups.
Coding and Thematic Development
Using the instrument as a guide, an initial set of codes was developed. Based on an iterative process, these codes were refined and descriptive sub-codes were developed in order to best catalog the essence of the data. Then, for each general code and sub-code, each study team member (authors) utilized Atlas Ti 5.0 to aggregate quotes and statements. Team meetings were used to gain consensus on codes and themes and to generate study findings and conclusions.
Beneficiaries framed health and control of health in a number ways, and several content areas were identified, including a general understanding of health, health as a life experience, health as a function or action, health defined based on the healthcare system, dimensions of health, and the ability to control health.
General Understanding of Health
Beneficiaries’ general understanding of health was based on their descriptions of what they considered to be healthy and not healthy. Healthy was defined as “life” and productivity to some, while others defined it as not having to go to the doctor and having no need for medications. An example of how participants typically noted their concept of being healthy follows:
Health means, it’s your life, when you hear the word health you are talking about your life. If I am healthy enough to live, a healthy human being, am I healthy enough to be productive to the world.
Descriptions of what it is like not to be healthy include the following statement:
You have poor health you become confused, you’re crazy, you do crazy stuff, you know, you are not productive to the world if you don’t have health.
Health as a life experience
Health was often defined according to a condition experienced throughout life. One example of how someone described health as a part of their life experience is illustrated below:
Something I’ve never had in my life. Only for the first 6 months of my life, I was a healthy baby, and after 6 months, I’ve been sick all my life. The word health in my life is nothing that I’ve never had.
Health as a Function or Action
Health was also defined according to functions or actions that individuals could do or not do. For example, “health means being able to take care of yourself,” “for my child…health is doing exercise, walking, playing around,” and “it means that I can get around and do things for myself continuously and not have to depend on nobody to come and take care of me” were some of the functional descriptions individuals used to describe health. One individual described health in terms of a social life: it would be something like walking on the beach with a six pack … a nice chick [woman] walking with me you know.
Health Care System
When talking about health, some individuals framed their comments in terms of the healthcare system. They did this by discussing the role their clinician or the healthcare system played in their health. Clinicians were viewed as key sources of information and instrumental in keeping the beneficiaries healthy by making suggestions and checking their health status. For example, “good health means to me that I see a psychiatrist that keeps me balanced and centered and on track” was one statement used to relate health and health care.
Dimensions of Health
The interview protocol specifically included probes focused on the specific spiritual, physical, and mental aspects of health. Physical health was defined by beneficiaries primarily in terms of activity level. As an example, these individuals responded that physical “health is doing exercise, walking, playing around” or that “you can do just about anything you want to do.” Individuals defined being mentally healthy as being happy as in the following quote: “being mentally happy is not worrying and being able to figure things out for myself.”
Spiritual health was defined in somewhat abstract terms as “being in tune with the world,” “finding answers to life,” and “having faith in God.” Some discussed their current spiritual health in different ways which generally consisted of the following description:
My spiritual health, oh my goodness, is good… I have found all the answers to life as far as I’m concerned because of my faith….Well I know there is a God. He took it away.
Ability to Control Health
Respondents were asked about whether they thought they were able to “control” their health or if they knew what actions were necessary to control their health. Individuals identified five primary factors that facilitate control of health: their individual ability, the role of others, such as family and friends, the role of clinicians and the medical care system, money and resources, and God and prayer.
Individual Ability. Individuals regarded control of health as their personal responsibility. Some respondents were generally empowered to control their own health and spoke of examples where they changed their lifestyle or behavior, including, “I am the best one to judge of what I want and who I want . . . what I need,” and the following:
I am going to give you an example of controlling my health. I used to smoke. I smoked cigarettes for 8 years . . . woke up in December of last year and I told myself I am going to quit smoking cigarettes and I quit smoking cigarettes.
While control of health is regarded as personal and individualistic, many acknowledged that it is very difficult to do and that they lacked the ability. In some ways, their comments could be thought of as fatalistic, as illustrated by the following exchange:
Interviewer: Do you have control over your health personally?
Interviewer: Why is that?
Respondent: Not now I don’t.
Interviewer: Have you had in the past, do you think?
Respondent: Maybe when I was younger, if I had lost weight, knew more than I know now. Change my living and eating habits.
Interviewer: You don’t think you can do these things now?
Respondent: Well, the damage is already done, so you can’t undo what’s already done.
Role of Others Such as Family and Friends. While some individuals did not indicate the degree to which their own health is controlled by factors other than themselves, many did recognize that they may need help and so seek information to gain control of their health. It is at this point that individuals rely on others, including their physicians, nurses, family members, and friends, to provide information and encouragement. Individuals also expressed the need to control themselves: “I try to control it myself, but if I can’t control it, I see if I can get help.” Other comments regarding control of health included the following: “someone was helping me . . . encouraging me to eat the right food and stuff . . . like somebody to push me. If I try to do it on my own, it is not working.”
Money and Resources. Money, or lack of money, affects the ability to control health in several ways, including the purchasing of healthy foods, going to the doctor, and buying medications. The high cost of purchasing healthy foods was cited as the main effect of lack of money on the ability to control health.
To eat healthy it cost more than just going to buy a bag of potato chips or going to McDonalds. You know they got the dollar menu but when you got to eat healthy is like you have to spend more money to eat healthy.
Beyond having enough money to purchase healthy foods, going to the doctor, and purchasing medications, many individuals were simply overwhelmed with the cost of living in general. Worry about paying bills ultimately affected their mental health status.
If I got a bunch of money I wouldn’t have to worry about my losing my house and that I think would, instead of taking all this medication I take, it might calm me down you know, and make me feel better about myself . . .
God, Prayer, and State of Mind. Although control of health is regarded as very individualistic, faith in God had a profound impact on an individual’s perceived ability to control their own health. Some individuals considered themselves subject to God and His will for them, and had faith that God would take care of them. Other individuals who described themselves as being sick or ill noted that being unhealthy or unwell is a “state of mind.” These individuals indicated that they were not going to worry about their illness and that they were going to live their lives as best as possible. For example: but I am not going to let my weakness and my sickness bother me because I stay walking and I stay going, you know, stay going everywhere, but the pains just come and go. And I am not going to let my pains bother me.
This “state of mind” view of health has a spiritual dimension as many participants indicated that faith in God through prayer enabled them to maintain positive attitudes: “I’m fine, I’m fine, and it’s in the hands of God.”
Strategies for Remaining Healthy or Regaining Health.
Individuals also identified strategies for remaining healthy or regaining health. Overwhelmingly, when asked about strategies to remain healthy or to regain good health, beneficiaries focused on the role of various actions such as changing nutrition and diet, taking medications and going to the doctor, and, to some extent, physical activity and exercise. Many of the phrases used to define health reflect actions to maintain health including having breakfast, going to the doctor, exercising, and eating well.
Article by My Canadian pharmacy Team: http://www.mycanadianpharmacyrx.com