Abstract
Health self-advocacy is associated with positive health outcomes, though existing research indicates that older adults may be at a disadvantage when self-advocating within the health care and disability support systems. This study examined perceptions of older adults’ health self-advocacy behaviors and the context under which they self-advocate for their chronic conditions. The study involved in-depth interviews with 37 older adults with chronic illnesses and disabilities and 9 geriatric case managers in South and Central Florida. Data were systematically analyzed for themes. Thematic findings revealed that concerns over quality of life is the most common motivator for older adults to engage in health self-advocacy and that self-advocacy involves gathering information to prepare for decision-making and confronting providers about the information gathered. The findings suggest that providers may help facilitate self-determination by framing health communication within the context of quality of life.
A large proportion of older adults in the United States experience chronic illnesses and/or disabilities, with two thirds of Medicare recipients experiencing two or more chronic conditions (Centers for Medicaid and Medicare Services, 2012). As a result, older adults require a combination of health and supportive services to address both their medical needs and supportive needs stemming from limitations in their activities of daily living (ADLs) and instrumental activities in daily living (IADLs; Brault, 2008). Recent trends in research and service models suggest that older adults can and should play an active role in the planning and management of their health and supportive services when they have the cognitive capacity to do so (Ruggiano & Edvardsson, 2013). However, little is known about older adults’ perspectives of their involvement in the decision-making and planning of their health and disability support services. This study aimed at expanding our understanding of chronic care by examining perspectives and accounts of self-determination and self-advocacy among older adults with chronic conditions and geriatric case managers.
Involving Older Adults in Care and Service Planning
Over time, there has been a shift within the health and disability support systems from a paternalistic model where service recipients have little control over their services to a model that values and emphasizes patient-centeredness. Hughes, Bamford, and May (2008) assert that this shift was influenced by emerging findings that increasing communication between providers and care recipients leads to better outcomes; including care recipients in decision-making is mutually beneficial for them and their providers; and paternalism has a negative effect on service recipients by minimizing their experiences. As a result, there is considerable interest in engaging older adults to participate in the planning and management of health and disability services by promoting self-determination and self-advocacy.
Self-Determination
Self-determination and self-advocacy are related, but separate concepts. Pennell (2001) describes self-determination as a philosophy within larger service systems that promotes service recipients as being active in the planning and management of their services. Providers play a large role in facilitating self-determination by encouraging older adults to be active participants in the planning and decision-making for their chronic care needs (Heisler, Cole, Weir, Kerr, & Hayward, 2007). However, Sims-Gould, McKay, Feldman, Scott, and Robinovitch’s (2013) research highlights that although promoting self-determination is a key component of providing person-centered services for older adults with chronic conditions, providers may face ethical dilemmas when older adults’ decisions and interests pose risks to their health or safety.
Health Self-Advocacy
Health self-advocacy is defined as “representing one’s own interests within the health care decision-making process” (Wright, Frey, & Sopory, 2007, p. 36). Hagan and Donovan’s (2013) review indicates that self-advocacy has been conceptualized and promoted for a number of populations that have been disadvantaged in the health and social service systems. They also identified a variety of activities that are associated with health self-advocacy, including navigating the medical system, engaging in teamwork with providers, making informed decisions, utilizing available resources, and mindful non-adherence (the purposeful decision not to follow a provider’s recommendation based on personal knowledge or preferences).
There are a number of patient-related factors that influence health self-advocacy. In Brashers, Haas, and Neidig’s (1999) study, adults with HIV/AIDS were more likely to report engaging in self-advocacy within the health care system if they had a strong desire for control over their lives, a strong desire for autonomy in decision-making and information seeking, and preferred to be involved and informed in their health care. The same study found that those who perceived a weak internal locus of control were less likely to report self-advocacy behaviors. Martin et al. (2011) have also found that among pregnant women, reading, numeracy, and communication skills were associated with health advocacy.
Self-Advocacy Among Older Adults
Health self-advocacy is particularly needed among older adults, because they face a number of challenges to receiving responsive chronic health care (Kahana et al., 2011). Older adults tend to be passive during the medical encounter (Kahana et al., 2009) and are likely to report low levels of health literacy (Wolf, Gazmararian, & Baker, 2005). Expectations about involvement in health care may also vary based on educational attainment and socioeconomic status (Clark et al., 2008). Research exploring health self-advocacy among older adults has identified a number of factors that influence their likelihood to engage in health self-advocacy, including beliefs regarding their level of control over their health (Lachman, 2006), health literacy, cognitive functioning (Kahana et al., 2011), and a strong supportive network (Gerstorf, Röcke, & Lachman, 2010).
Lachman (2006) found that older adults who are more proactive about their health care tend to have better outcomes. Other research reports that older patients who engage in information seeking and assertive communication with their physicians were more likely to get screened for cancer (Kahana et al., 2010). Kahana and colleagues’ (2011) research indicates that when older adults have initiative, health literacy, and confidence in their health communication, they may experience a number of benefits, such as advice and information that is responsive to the patient’s needs, diagnosis and/or health services, and satisfaction with care.
Self-Determination Theory (SDT)
SDT provides an ideal framework for understanding older adults’ health self-advocacy behaviors. SDT is a theory of human motivation that differentiates between two types of motivation: intrinsic and extrinsic (Ryan & Deci, 2000). Intrinsic motivation involves internal forces that motivate individuals to think and behave in a particular way that satisfies their personal enjoyment or interests. Extrinsic motivation involves external forces that motivate individuals. Unlike intrinsic motivation, these external forces control regulate an individual’s motivation to think or behave in ways that may not always satisfy personal interests.
SDT has previously been used as a framework for understanding motivation in later life (Vallerand, O’Connor, & Hamel, 1995). Specifically, it has been used to understand older adults’ motives for engaging in physical activity (Ferrand, Nasarre, Hautier, & Bonnefoy, 2012), factors that encourage their involvement in leisure activities (Losier, Bourque, & Vallerand, 1993), and best practices and self-determination among homeless older adults (Dennis, McCalliona, & Ferrettia, 2012). Within the context of health self-advocacy, SDT would suggest that the type of motivation experienced by older adults can affect their ability and willingness to self-advocate and represent their personal interests as a care recipient.
Need for Current Study
Existing research indicates that there are benefits to health self-advocacy among older adults with chronic conditions. However, little is known about older adults’ perspectives of their health self-advocacy behaviors. To expand current understandings on older adults receiving health and supportive services for their chronic care, the following research questions were posed:
Method
To address the research questions, in-depth interviews were conducted with older adults with chronic health conditions and disabilities and geriatric case managers located in South and Central Florida. The methods, forms, and interview guides for this study were approved by the internal review board of Florida International University. The methods have been reported elsewhere (Ruggiano, Shtompel, & Edvardsson, 2014).
Study Sample
Thirty-seven community-dwelling adults ages 60 and older participated in interviews. Participants were eligible if they spoke English and had at least one chronic health condition or disability that required ongoing support or medical care. Exclusion criteria included moderate to severe cognitive impairment, as determined by the Mental Status Questionnaire (MSQ; Kahn, Goldfarb, Pollack, & Peck, 1960). The sample of older adults varied: 25 (67.6%) were women and participants’ ages ranged from 60 to 97 (M = 76.9 years), 27 (73.0%) had a high school education or less, and 14 (37.8%) were Medicaid eligible or self-identified as Medicaid non-eligible, but low income. In terms of race, 31 (83.8%) were White, 6 (16.2%) were African American or African Caribbean, and 3 (8.1%) identified as Hispanic. Participants’ health and disability status varied as well, with chronic conditions that included musculoskeletal conditions, cardiovascular conditions, cancer, and diabetes, sensory-related disabilities, and developmental disabilities. Most participants (30, 81.8%) had co-occurring conditions.
Nine geriatric case managers also participated in interviews. All but one were women, one was African American, and three identified as Hispanic. All of the case managers had completed graduate education, with eight holding MSW degrees. The average number of years working in community-based settings with older adults was 10.41 and ranged from 4 to 28 years.
Data Collection
Sampling for this study relied on a combination of purposeful and snowball sampling procedures. To recruit participants, the Area Agency on Aging of Miami-Dade and Monroe Counties and community-based agencies that provide health and social services to older adults distributed flyers about the study to their case managers and clients. Potential participants would call the telephone number on the flyer. Then, the responding member of the research team would explain the goals and details of the project to the individual and determine whether she was eligible to participate in an interview. If the individual was eligible, an interview would be scheduled. Participants were given additional study flyers at the end of each interview and asked to refer friends, family members, and clients (if interviewee was a case manager) who may be interested in participating in the study.
In-depth interviews with eligible participants lasted between 45 and 90 min and took place within the participant’s home or an agreed-upon location within the community. At the beginning of each interview, participants were required to sign a consent form. Interviews were conducted using a semi-structured interview guide that included questions covering a variety of topics related to health and disability self-management, including their health-related behaviors, experience with health providers, support service providers, and family members. Self-advocacy was explored through larger questions, including Can you give me examples of when you had to make a big decision about your health or health care? and Can you tell me about a time when you disagreed with your doctor about your health or health care? Case managers were asked about their clients’ experiences with these topics.
Although the study design involved a single interview, the interviewer attempted to establish rapport by making unrecorded small talk before and after the interview with participants as well as offering them small compensation for their time (US$20 supermarket gift card for older adults and US$40 for case managers; Padgett, 2008). The large number of participants who referred friends, family, and clients for the study suggests that rapport was successfully established with many interviewees.
Data analysis
Interviews were transcribed and checked for accuracy. Analysis involved a systematic process using Atlas.ti (version 7) that began with open coding by the first author, who unrestrictedly assigned codes to data segments that reflected the concepts those data segments represented (Strauss, 1987). Then, data were assessed using constant comparison where individual codes were compared with previous data to assess for conceptual similarities and difference (Corbin & Strauss, 2008). The third author assessed the interview transcripts separately using the coding list created by the first author, and subsequently added, altered, and deleted codes. Inter-rater coding resulted in minor discrepancies in data analysis, which were resolved by discussing the codes until agreement was reached. Thematic codes that were conceptually similar were organized into larger categories, which were later integrated together to create major themes (Corbin & Strauss, 2008). All three authors were involved in assessing the themes that emerged from the codes, resulting in minor discrepancies that were resolved through discussion. When data analysis was complete, the research team engaged in negative case analysis and member checking to assess the credibility of these findings (Padgett, 2008), which did not result in any discrepancies.
Results
All older adults in this study reported that they engage in health self-advocacy to some extent. Similarly, case managers reported that they have observed self-advocacy behaviors among their clients. First, the data revealed that health self-advocacy among older adults was often initiated after they determined that there was a threat to their quality of life, such as a decline in their mobility or a negative side effect from their medication. When such a threat was perceived, older adults reported that they engaged in information gathering for the purpose of making a decision about what to do or not to do about their condition. Sources of information included books, newspapers, television, friends, and family members. Once information was gathered and synthesized, the decision to self-advocate about health was made based on the older adult’s level of comfort in confronting their provider. As indicated in many of the quotes provided, participants were more likely to report cases where older adults advocated about issues related to medications compared with other aspects of their health (therapies, surgeries, medical tests, etc.). For those who engaged in advocacy behaviors, provider reception influenced older adults’ further need or interest in engaging in self-advocacy. More details on these thematic findings are provided in the following sections.
Assessing Quality of Life
Older adults and case managers all described self-assessment as an important activity for self-management of chronic conditions among older adults. Most often, this involved older adults assessing how health conditions, disabilities, symptoms, prescriptions, and services affected their daily experiences and quality of life. According to participants, health self-advocacy was most often initiated when the older adult’s self-assessment indicated that there were concerns with their current or prospective quality of life. Such concerns most often included older adults’ decreasing ability to complete ADLs/IADLs, prescription side effects and dependency, significant pain, or loss of independence. For instance, Estella (90, spinal injury) explained how negative side effects from her prescriptions prompted her to confront her physician about changing her medication:
Just recently I had a urinary problem. [My doctor] gave me a medication and I got very sick from it. And I said [to him], “I don’t want that medication. I will not take it. So, you better find another one.”
Similarly, when Shirley’s (77, arthritis) physician recommended that she have a hospital bed installed in her home to prevent future falls at night, her negative perception of hospital beds resulted in her ignoring her physician’s recommendation and making alternative arrangements on her own:
The doctor wanted to give me a hospital bed. I don’t want that, I’m not ready for that . . . To me, it’s like I’m in a hospital, a nursing home and so forth. I don’t want that type of bed in the house as yet. So, I put a chair on the one side of the bed with the big pillows.
Information Gathering
In every interview, older adults indicated that they had at least one experience where their concern about quality of life prompted them to engage in information gathering, which often helped them prepare to make a decision about their condition or engage in other advocacy behaviors. Such activities included talking to friends and family and researching information from books, magazines, television, and the Internet about health conditions and/or available services and treatments for health conditions. Some examples of information gathering included,
Sometimes friends will send me a newspaper. [One friend] . . . sent me this [shows newspaper article to interviewer]. You see the front end of this paper? It’s a complete section on diabetes from November 11th, Sunday. It came from the [Miami] Herald not the Sun Sentinel and there’s everything about diabetes you want to know. The latest research: the devastating link between diabetes and the heart, technology improves patient’s health with the pumps, about carbs, about risk of blindness and where they’re now they try to cure retinopathy and a few other things there. (John, 71, diabetes) One [of my personal aids] was the relative of a neighbor down the street. I went up and asked [my neighbor] . . . “Do you happen to know someone who needs a job? . . . You know, like being able to basically helping me out in the house. Doing housework . . . I don’t need any personal handling.” (Rosie, 61, Cerebral Palsy) I wouldn’t exactly say I’m an expert, but . . . for one thing, it’s me and my body. And the other thing is I read [about health]. When I was at [a medical research facility for care], I had to get this doctor’s orders. I went to the medical library. Everyone around me was a med student, a physician, and I’m sitting in there reading about what they’re doing to me and did to me. I didn’t understand a lot of words, but . . . that’s my personality, I want to know how things work. Not things like a car. But my body. (Ferdinand, 74, heart condition)
Peers (friends and siblings) were viewed as one of the best sources of information about health conditions, because as Nancy (77, osteoarthritis) summed: “Most of my friends seem to suffer basically with the same things.” Also, participants were more likely to discuss information they found about their medications than information about other health-related services and treatments.
Case managers also reported that older adults are active in gathering information about their health conditions. For instance, Rita explained,
Some older adults are good at reading about health. Some do research and even use the Internet . . . They go to seminars at the local hospitals. They get information from their pharmacists . . . They talk to their friends.
Similarly, Betty reported, “I have some [clients] that are not into medication. [They tell me] ‘I have read in the magazines and in the paper that this medication is not good. I don’t want to take this medication.’”
Self-Advocacy
Deciding not to self-advocate
Once older adults synthesized the information they gathered, their decision to engage in advocacy behaviors depended on whether or not the individual was willing to talk with their provider about their self-assessments and acquired information. In many cases, older adults reported that they were not confident with confronting their provider about their condition, because they viewed their level of knowledge as being inferior to the provider’s level of knowledge or that the provider would not value the information they provided. As Alfred (94, macular degeneration) summarized, “I don’t know anything about anything. I’m not a doctor.” In such instances, participants would not engage in self-advocacy, because they did not want to take a risk in being wrong or ignored when talking to their provider about their understandings and opinions about their condition or available services. As Tom (84, macular degeneration) explained,
When you’re sick and the doctor says, “Hey, listen! You gotta do this or else . . . ” That’s it. You do what the doctor says. Because he’s the one that’s trained to do that. You don’t want to argue and find out he was right and you were wrong.
Similarly, Jim (60) reported that he researched considerable information about his benign prostatic hyperplasia and felt that he should have had more tests done before having a biopsy, but he did not argue with his physician:
I’ve had a couple biopsies . . . I definitely would have gotten another lab test before I had the biopsy. Because it’s no fun, that’s for sure. And also it’s a trauma to the organ . . . I am not sure if I should have had those biopsies or not . . . this original doctor, he was kind of like, “This is the way it’s done, that’s what we’re going to do.” So he was less [about offering] options . . . I would have had another lab test before I got the biopsy.
Case managers reported similar observations that their clients varied in their knowledge about their condition and that many do not confront their providers about their condition or treatment. For example, Jennifer stated,
Some of them are very aware of their medical situation and they read up [about health]. They’re pretty savvy. Some of them are not. And so [for them] it’s like [the] doctor is God and whatever the doctor wants that’s what will happen.
Deciding to self-advocate
After gathering and synthesizing information, many older adults reported that they were confident with presenting their knowledge, assessments, and opinions to their provider. In these cases, they engaged in self-advocacy behaviors that included asking questions, making alternative requests to providers, acquiring second opinions, and disagreeing with providers. Participants provided a number of examples of older adults engaging in self-advocacy. For example,
Michael (76, diabetes): I was at the doctor about 2 weeks ago. I begged him to give me some shots of cortisone to tackle the pain in my knees. Then I begged him to give me some shots of gelatin to put some gel in the knees, it’s like a lubricant. He agreed he’ll do it. I also have to get the permission, it’s an expensive procedure. I have to get the permission from the insurance. The approval.
Where did you learn about the cortisone shots and the gels?
I educated myself . . . I heard somebody about this, some people had this procedure . . . They see me walking. They say, “Oh, I had this injection.”
I do make decisions. If I don’t like the way I feel with a certain drug, I’ll tell them. In the hospital they wanted to give me pain pills and I refused it. I said, “Just give me Tylenol.” (Armen, 84, blindness)
I was in their rehab in Broward and about a week or so later they wanted me to go somewhere else . . . And not even three days later the social worker . . . came in and she said, “You have to go into assisted living.” I said, “No way in hell. I need rehab” . . . So I asked for the administrator and they kept me there a while. (Betty, 73, stroke)
I’ve had to address my cholesterol medicine with my heart specialist. For financial reasons, I wanted the generic and he wanted something that was much more expensive. And I just told him I already ordered the generic, I’d gotten it from my family doctor and when I ran out of the one he prescribed, I was going to try the generic and see my reaction to it before saying I absolutely had to stay on the other one . . . He accepted it, what else could he do? [Laughs] (Elizabeth, 62, diabetes).
Although these cases involved older adults advocating with their physicians, case managers observed older adults self-advocating about their health and services. One example came from Greg, who described one of his clients:
[She is] a 90 year old female who manages by herself so well. She knows what kind of food is good for her and she knows what kind of medical care [she needs] . . . if she feels that she needs therapy for her feet she will take the initiative and call around, whatever she has to do, to get the physical therapy. And I’ve seen the progress. It’s amazing! . . . She is self-confident. She’s really proud on who she is and she consults, but in the end, she makes her own decisions.
Mindful non-adherence
There were also cases where older adults were not willing to talk with their provider, but they reported that they engage in mindful non-adherence. This was most often reported in cases when a physician’s advice created a perceived conflict with the older adult’s quality of life. For instance, Sophie (81, stroke) became concerned after reading about the potential negative side effects her medication may have on her liver. This prompted her to conduct what she referred to as an “experiment,” which involved altering her prescribed medication regimen without talking to her physician:
I decided to take the Plavix every other day. And so I put myself on a regimen: One day I take Lovastatin, one day I take Plavix, instead of every single day. And I cut down on the cost of the medication and everything else. But I wasn’t worried about the cost, I was worried about the effects. So one day I was due for a check-up. I went for a check-up. Everything came back, everything was good. The blood work-up, whatever it was- it was all good. And I finally decided to tell the doctor what I was doing . . . There’s so much testing going on in this world. I say, give myself a test! [Laughs]
Mindful non-adherence was also related to older adults’ social behaviors that went against physicians’ recommendations, such as drinking alcohol and smoking. Such was the case of Alfred (94, macular degeneration):
I do everything that I’m not to do. I eat the stuff I’m not supposed to eat. I drink the stuff I’m not supposed to drink. My doctor says “Two drinks, no more.” I say [to myself], “What happens if I drink three? I like the happy hour if I got company.”
Provider Reception
Receptive
For older adults who were willing to engage in health self-advocacy, their providers’ response influenced older adults’ further need or interest in engaging in health self-advocacy. Few participants in this study reported that their provider positively responded to their self-advocacy efforts. Examples included,
They were trying to get me well enough to get the adrenalectomy and I was constantly sick. I said to the surgeon, “You know, I’ve never been tested for allergies. What do you think? I’m constantly sick. I’m constantly living on antibiotics.” And he said, “That’s a good idea.” (Sarah, 61, spinal injury) The last time I went to [doctor’s name] I asked him about studies on the sarcoidosis. And he Googled it and there was a lot of organizations and different studies that’s being done. (Lois, 73, sarcoidosis)
Non-receptive
Most often, providers were not receptive to older adults’ advocacy efforts. In many cases, older adults indicated that they asked questions and requested services, but their providers would respond by stating that there were no alternatives to what was prescribed. When older adults were not confident in their own assessment or knowledge, they would not engage in further advocacy efforts:
I feel I’m on too many [prescriptions] but I take them to my primary doctor and he says, “Well you should have this and you should use this.” So, they know better than me. (Anna, 94, cancer) Restless legs drive me crazy, because it doesn’t let me sit still. Then, mostly at night when I sit down to watch television, I have to get up and walk back and forth and back and forth. I get depressed about that. But whatever it is, I deal with it. And I told the doctor again and he gave me a pill for it and it didn’t do much and he says, “I can’t give you a stronger one, it’s not good for you.” So, it’s fine. I manage. (Estella, 90, spinal injury) I wish my vision would come back, but the doctor said, “Tom just forget it.” I had cataracts and I wanted to have them taken care of and the doctor said, “Tom it’s a waste of money and time. You’re not going to see any better if I take the cataracts out. It’s not going to help so please just leave them the way they are OK?” He said, “It won’t help.” (Tom, 84, macular degeneration)
There were a few cases where providers were not receptive to advocacy efforts, but the older adult would continue to advocate by seeking alternative means to addressing their interests. In these few cases, older adults were confident with their information and communication skills, so when their provider was non-receptive, they were not deterred. For example, Sophie (81, stroke) explained her experience where she requested a shingles shot and was told by her physicians’ office that it was not covered by her insurance:
After I took the shot I decided to investigate [the insurance coverage]. So I got on the phone and made a phone call. Do I find out that they do pay for the shot! So, I called the nurse and I told her, “Yes, they do.” [She said] “Oh no, you’ll never get the money.” I said “Well, why don’t you fill out the forms and send it in to my plan please, and let’s see?” Well, I got the check.
Armen (84, blindness) had a similar experience with her transportation service:
I also applied to [Name of transportation company], which is the county bus that picks up people. And they approved me. And one day I called up and I said I was going to take the bus for something . . . And the lady said, “Just a minute.” And I said, “I’m approved, I have the letter right here.” And she came back and she said, “Yes, you’re approved, but because of the economy we can’t pick you up.” And I don’t think that’s right. They bought all new buses. They have money for that. They could certainly pick up. So, I’m going to call again and get somebody maybe higher up.
Discussion
The literature indicates that health self-advocacy is an important health self-management activity that may result in receipt of health-related information (Kahana et al., 2011), health services (Kahana et al., 2010), and improved health outcomes (Lachman, 2006) among older adults. However, little is known about older adults’ experiences with health self-advocacy. The findings from this study revealed a variety of activities among older adults with chronic conditions that are related to health self-advocacy: self-assessing current or future quality of life, gathering information about health and services when there is a perceived threat to quality of life, making the decision to disengage or engage in health self-advocacy, and provider reception of advocacy efforts. It was also found that health self-advocacy among older adults is constrained by their lack of confidence in health knowledge and unwillingness to talk with their providers about health. These facilitators and constraints on self-advocacy are consistent with previous findings about older adults’ self-advocacy (Gerstorf et al., 2010; Kahana et al., 2011; Lachman, 2006).
SDT and Health Self-Advocacy
Quality of life as an intrinsic motivator
SDT provides an ideal framework for understanding older adults’ health self-advocacy behaviors. According to SDT, intrinsic motivation involves internal forces that motivate individuals to think and behave in a particular way that satisfies their personal interests (Ryan & Deci, 2000). In the case of older adults with chronic illnesses and disabilities, the findings suggest that perceived quality of life may be a key intrinsic motivator for older adults to engage in health self-advocacy behaviors. Although older adults in this study encountered a number of issues related to health, their self-advocacy behaviors often focused on issues that affected their current or future perceived quality of life. Such issues included side effects from medications that would affect their daily living and changes in their condition that placed limits to their mobility, ADLs, and/or independent living. This aligns with Brashers and colleagues’ (1999) findings that self-advocacy behaviors are often associated with an individual’s desire to have control over their life.
This finding has implications for health practitioners. To promote older adults’ self-advocacy and overall involvement in health care planning, providers may emphasize self-determination (Pennell, 2001) by framing health-related questions to older adults within the context of their quality of life, rather than standard medical terminology. For instance, older adults may be more confident in engaging in self-advocacy if providers asked them how their health changes and medications may be affecting their ability to complete their daily activities, as this terminology is more aligned with how older adults assess their condition.
Health literacy, confidence, and health advocacy
All of the older adults in this study reported that they gather information about their health, and many believed that they had some level of expertise over their body and health. However, many reported that were not comfortable presenting their providers with the information they gathered or their synthesis of the information, because they did not view themselves as being experts in their own health. In comparison with providers, they felt that their own health knowledge was extremely limited and that asserting their own position could have negative consequences. Such consequences included the risk or embarrassment of being wrong or ignored by their provider. Hence, according to SDT, low perceived health literacy and self-confidence could be considered an extrinsic motivator (Ryan & Deci, 2000) not to self-advocate.
Although a variety of health services generated a concern about quality of life, it should be noted that the majority of instances of health self-advocacy reported by participants were related to older adults’ prescriptions. Fewer cases focused on other health topics, such as surgeries, medical tests, and therapies. This could be related to the fact that participants reported that older adults had a greater access to information about medications compared with other topics. It is possible that by having access to a significant amount of information about prescriptions from a variety of sources (books, magazines, newspapers, peers, etc.), older adults have a greater opportunity to assess how prescriptions may pose potential threats to their quality of life. It also explains why older adults in this study were more confident when confronting their provider or engaging in mindful non-adherence about issues related to their prescriptions, because they had a greater access to information about the medicines they were prescribed.
This finding has significant implications for older adults’ health literacy. Participants reported that they receive information about medications from a plethora of sources, including peers and family members who have similar prescriptions, direct-to-consumer pharmaceutical advertisements, and health-related programming. They reported receiving less information about other aspects of their care. Therefore, finding ways to educate older adults about surgical procedures and medical tests in settings outside of the doctor’s office may increase their health literacy on these topics, which may lead to self-advocacy.
Study Limitations and Future Inquiry
Several strategies were used to strengthen the design of this interview-based study; however, the sample is not representative of the larger older adult population and the researchers did not directly observe health self-advocacy behaviors. Therefore, further studies should be conducted that draw upon quantitative methods and further explore the findings from this study.
This study addressed the current dearth of knowledge on health self-advocacy among older adults by providing insight on the nature, context, facilitators, and constraints of self-advocacy. One implication of the current findings for future research is that health self-advocacy involves activities that occur both within and outside of the provider’s office. Therefore, research that only examines health literacy or only the medical encounter may result in an incomplete picture of health self-advocacy. Second, peers were found to be a common source of health information, though the quality of information gained through the peers of this study’s participants is not known. Therefore, more information is needed on the role that social networks play in the process of self-advocacy. More research is also needed on older adults’ use of mindful non-adherence as a self-advocacy strategy, with a specific focus on the quality of information that older adults use to base their decisions to purposefully not adhere to providers’ suggestions and their perceived consequences of non-adherent behaviors. Finally, research should examine health self-advocacy among older adults within different cultural contexts. This research studied a small sample of older adults in Florida. However, prior research reports that self-determination is a valued and varied concept among older adults from different racial and ethnic groups (Volker, 2005) and countries (Hahn & Oishi, 2006; Woolhead, Calnan, Dieppe, & Tadd, 2004). Therefore, researchers should not view self-advocacy as a universal concept and further examine how it applies to older adults from different racial/ethnic groups and countries.
Conclusion
The health care and disability support service systems continue to grow in size and complexity. Older adults can and should be involved in navigating these systems by actively participating in the decision-making and planning of their chronic care. This includes self-advocating about their services. Researchers, practitioners, and policy makers play a central role in removing barriers to older adults’ participation in their health care and promoting self-determination by facilitating older adults’ ability to self-advocate. This study provides a starting part to moving forward with these goals.
Footnotes
Authors’ Note
The authors would like to acknowledge and thank Dr. Victoria Raveis for her ongoing support and consultation throughout the duration of this project. They would also like to thank the many community-based organizations that collaborated for this project.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research project was funded by the John A. Hartford Scholars Program in Geriatric Social Work, administered by the Gerontological Society of America. Nicole Ruggiano received support for this research.