Voices of African American Older Adults on the Implications of Social and Healthcare-Related Policies for Osteoarthritis Pain Care

Abstract

Background:

Chronic pain is a distressing symptom that older adults with osteoarthritis (OA) seek to minimize through management. Research consistently points out the disparities that older African Americans face when managing chronic pain conditions, but a major gap in the literature is how pain care policy at the federal, state, and local level protects or exposes older African Americans to disadvantaged care.

Aims:

The purpose of this original research is to examine policy issues and care enhancement opportunities that emerge from the narratives and personal stories of older African Americans living with chronic OA pain.

Design:

A secondary qualitative data analysis.

Methods:

African Americans (≥50 years) with OA pain living in Louisiana were interviewed to gather global perspectives and specific information about how they manage OA pain. Narrative analytic techniques were applied to 18 individual, semistructured interviews.

Results:

Three policy-related pain management issues and implications surfaced from the older African Americans’ rich narratives: (1) “Access to and navigation of the healthcare system,” (2) “Affordability of natural supplements, medications, and treatments,” and (3) “Expansion of pain palliative care and community programs.”

Conclusions:

African American older adults face numerous challenges in managing pain well. Navigating the healthcare system is an abiding issue, and perceived injustice in care was a common thread throughout the narratives. On the positive side, older African Americans also proposed practice- and policy-related solutions to counter the pain treatment challenges. Nurses are natural advocates for patients, and should work to change healthcare policies that unfairly marginalize ethnic/racial older adults’ long-term ability to manage chronic pain.

Background

Pain is the most common symptom that individuals with osteoarthritis (OA) strive to manage well. Chronic pain is a well-documented issue in older African Americans and is recognized as one the most bothersome joint symptoms of arthritis (Baker, 2003). In national studies, chronic pain is shown to be more disabling and severe in African Americans (Janevic et al., 2017; Nahin, 2015), affecting between 53% and 78% of African Americans across the adult lifespan (Nahin, 2015; Bazargan et al., 2016). Consequently, the likelihood that older African Americans will experience limited mobility, major functional impairments, or diminished quality of life and satisfaction with health is high (Booker, Herr, & Fillingim, 2020). Reliable evidence shows that compared to White Americans, racial/ethnic minorities disproportionately experience unfavorable social and behavioral health determinants, such as financial difficulties and living alone, that are associated with higher pain intensity and unrelieved pain in African American older adults (Evans et al., 2019; Bierman & Lee, 2018). To positively affect the health of a population, it is important that social and healthcare policies are responsive to the needs of older African Americans, especially in assisting them to manage complex chronic diseases and chronic pain.

Literature Review

Musculoskeletal conditions are the leading causes of population disability worldwide and a source of significant personal disability and distress in all areas of an older adult’s life (Blyth & Noguchi, 2017). Arthritis and back pain are chronic conditions accounting for a large proportion of years lived with disability among aging African American, Hispanic, and White Americans (McGrath et al., 2019). What separates African Americans from the latter two groups is the burden of pain and healthcare disparities. Over two decades of research have uncovered a huge collection of ethnic/racial inequities and disparities in pain treatment that make it difficult to achieve clinically significant pain control (Green et al., 2003; Meghani et al., 2012; Aronowitz et al., 2020; Lee et al., 2019).

Multiple contextual and process factors contribute to older African Americans’ disparate use of medical treatment and self-management. A systematic review concluded that ethnic/racial minority older adults are less likely to receive prescription medication or surgery, and instead rely more on complementary and alternative therapies (Lavin & Park, 2014). Early studies demonstrated the challenges of limited pharmacy access to opioids in select African American communities, which undoubtedly influences pain sufferers’ ability to manage pain (Meghani et al., 2012; Green et al., 2005). Community-based studies have reported opioid use in older African Americans to be as low as 12% (Yazdanshenas et al., 2016), and as high as 30% (Robinson-Lane & Vallerand, 2018; (Booker, Herr, & Tripp-Reimer, 2019). Many older adults have fallen victim to the unintended consequences of new Medicare opioid policies, such as forced tapering (Arnstein & Herr, 2019), that further restrict access to opioids to those who may truly need these medications, such as older African Americans.

New joint practice recommendations from the American College of Rheumatology and the Arthritis Foundation strongly advocate for OA self-management and self-efficacy programs (Kolasinski et al., 2020). However, a recent study demonstrated that older African Americans lack sufficient knowledge about recommended treatments for the management of OA, including self-management programs (Booker, Herr, & Tripp-Reimer, 2019). Although costs and financial difficulty are major sources of arthritis-related stress (McIlvane, 2007) and barriers to participation in community-based self-management programs, 90% of African Americans 50 years of age and older believed there was a need for an arthritis self-help program (Mingo et al., 2013). In the current healthcare climate, many with chronic pain, especially African Americans, are facing significant challenges in receiving equitable and quality pain care. A major gap in the literature is how pain care policy at the federal, state, and local level protects older ethnic minorities, including older African Americans, from disadvantaged care, or exposes them to such care. The purpose of this original research is to share insight on the policy issues and opportunities that emerge from older African Americans living with chronic OA pain. Reporting is adherent to the consolidated criteria for reporting qualitative studies (COREQ) guidelines (Tong et al., 2007).

Methods

Design

This secondary qualitative data analysis uses interview-based data from a mixed-methods observational study approved by the institutional review board at the University of (Iowa; protocol #201601784) in 2016. The parent study used a qualitative descriptive design (Sandelowski, 2010; Willis et al., 2016; Booker, Tripp-Reimer, & Herr, 2020). Participants were compensated with a gift card and educational resources on managing OA. Because full methods are described elsewhere (Booker, Herr, & Tripp-Reimer, 2019), we give a brief methodological overview.

Sample

Multiple recruitment methods were used to secure a diverse convenience sample from urban and rural North Louisiana based on the following criteria: (1) self-identify as African American/Black adults, (2) age 50 or older, (3) chronic joint pain 3 months or longer, (4) screened positive for clinical symptoms of OA, and (5) demonstrated no significant cognitive impairment on the Animal Naming Test (Booker, Herr, & Tripp-Reimer, 2019). A final sample of 110 participants completed the cross-sectional survey phase, and from this participant pool, 21 individuals were contacted to participate in a single qualitative interview. Two individuals were lost to follow-up and one had a recent illness, resulting in a final qualitative sample of 18 participants.

Setting: Context of Healthcare in Louisiana

At the time of data collection in 2016–2017, Louisiana ranked 49th, making it one of the worst states in population health, and the 2019 ranking remains unchanged (America’s Health Rankings, 2019). Further, Louisiana has a high rate of arthritis, obesity, and other health indicators that contribute to pain (Barbour et al., 2018). An urgent need thus exists to understand pain and the impact of policies on healthcare of Louisiana residents. For Louisianians, the most recent relevant policies to consider are the expansion of: (1) Medicaid to nearly 500,000 in 2016 (Executive Order JBE 16–01), and (2) therapeutic marijuana use to conditions such as intractable pain and the protection of patients and their caregivers for possession and consumption of medical marijuana (HB 579, SB 271, SB 180).

Data Collection

Before data collection, participants were informed of their rights as research participants, after which they provided consent to complete surveys by paper and pen. Social, economic, and demographic characteristics were collected using a survey. Example variables included age, sex and gender identity, employment status, education, and level and adequacy of income.

Using a semistructured interview guide, participants were audio-recorded and asked to reflect on relatively open-ended questions that covered several domains of self-management perceptions, patterns, and processes. Based on participant level of engagement and amount of information-sharing, interviews were variable in time, lasting up to 106 minutes in duration. Participants were informed that they could stop or pause the interview at any time if they felt fatigued or became emotional. The Principal Investigator (PI) used nursing judgement to determine when the interview should pause or be discontinued. Audio recording of interviews were paused for two participants due to sharing confidential information or crying. Most interviews were completed in participants’ place of residence (n = 15); three elected to meet in a public fast food restaurant or self-owned business. The PI conducted all interviews and kept field notes during interviews.

Analysis

Audio recordings were transcribed as they were completed by a professional transcriptionist (Landmark Associates, Inc., Phoenix, AZ, USA), and the transcripts were checked for linguistic and affective accuracy by the PI. To begin this secondary analysis, we identified codes from our original analysis related to providers, treatment, and support needs. These codes were traced to the original portion of the transcripts in HyperRESEARCH and were reread so that the researchers could become immersed in the context, content, and characters related to policy and healthcare challenges and needs. The narratives were coded in blocks of text (e.g., paragraphs), and to understand the context of these pieces of data, we conducted a descriptive narrative analysis (Sandelowski, 1991). According to Ahmed (2012), “what is thought to be, or constructed as ‘true,’ is shaped by the cultural and historical context in which it occurs” (p. 234). This was evident in our interviewees’ narratives, wherein specific personal and historical events over various time periods constructed a person’s present life story. Stories allow individuals the time and space for “telling it like it is” (Bell, 2017, p. 1141), opening a window into their realities. Aligning with a constructivist epistemology and a Black narrative methodology, these analytic techniques illuminated the “voice of the participants through a broader analysis of not only what participants revealed in the responses but also how they said it” (Renz et al., 2018, p. 829). Our analysis thus provides greater context to participants’ micro circumstances of pain management within the broader macro circumstances of healthcare policy.

Rigor

Criteria to establish the trustworthiness of data were followed to ensure rigor and relevancy during all stages of the data collection, management, and analysis. Particularly, in narrative inquiry, ensuring truth-telling and distinguishing fact from fiction is a critical research component (Sandelowski, 1991). Transparency involved informing participants of the purpose of the study and how their data would be used and disseminated. Methods such as debriefing with participants at the end of interviews, having multiple data coders, and data triangulation (converging/cross-referencing quantitative and qualitative data) were used to ensure credibility and dependability.

Although reflexive strategies were used to reduce investigator bias upon each interview, navigate the social hierarchy, and enhance confirmability (Booker, Tripp-Reimer, & Herr, 2020), the PI centers herself as a near-distant character in the study participants’ narratives, making “their” stories “our” stories. The PI is an African American nurse (late 20’s at the time; highly educated) with personal and professional ties to the communities in which the research was conducted. The PI’s first experience with narrative inquiry was in high school, where she conducted a short life interview with her southern African American grandmother, who lived through multiple eras (circa 1908–2016): World War I and II, the Great Depression, women’s rights, civil rights, the economic collapse of 2008, and even the election of Barack Obama as 44th President of the United States. Suffering with hand OA, the PI’s grandmother never complained of pain and rarely took analgesics. These experiences shape the PI’s approach to research and cultural interpretation of data, favoring research methods that allow for a more intimate understanding of the phenomenon through reminiscence on the past and reflections on the present state of being.

Results

Social Demographics

By design, the 18 participants were each in one of three age cohorts: 50–64, 65–74, and ≥75; their average age was 67.9 (SD = 10.9; Table 1). Although sampling attempted to garner diversity in pain intensity, most participants reported moderate or severe pain on an intermittent or constant basis. Participants were equally living in rural or urban settings, but differences in access to care did not emerge. Given trends in lower insurance rates among racial/ethnic minorities, unexpectedly, all but one individual (N = 17) reported having health insurance, and even in the parent sample, 96% (n = 106) were insured. Among interviewees, most participants over 65 years of age anecdotally reported having Medicare, and those under age 65 had Medicare or Medicaid, private insurance, or no insurance.

Table 1.

Sample Demographics

N = 18	N (%)
Sex/Gender
Male/Man	9 (50.0)
Female/Woman	9 (50.0)
Residence
Rural	9 (50.0)
Urban	9 (50.0)
Age, M(SD)	67.9 (10.9)
50–64	8 (44.4)
65–74	5 (27.8)
75+	5 (27.8)
Education
<High School	5 (27.8)
=High School	8 (44.4)
=College or Graduate Degree	5 (27.8)
Income
Less than enough to pay bills and buy necessities	3 (16.7)
Just enough to pay bills and buy necessities	12 (66.7)
More than enough to pay bills and buy necessities	3 (16.7)
Have Health Insurance	17 (94)
Copayment Difficulty
Yes	6 (33.3)
No	8 (44.4)
Not applicable (no copayment or no insurance)	4 (22.2)
Chronic Pain Severity
Intermittent, Mild	2 (11.1)
Intermittent, Moderate	6 (33.3)
Intermittent, Severe	2 (11.1)
Constant, Mild	0 (0)
Constant, Moderate	2 (11.1)
Constant, Severe	6 (33.3)

Stories of Social and Healthcare Pain Policies

Data are provided from a range of the qualitative participants, but we focus on the narratives of four participants (pseudonyms: Ron, Michelle, Martiela, and Laurence) who shared deep information and strong views about the lived disparities that affect their ability to fully manage chronic OA pain. During our analysis, three etic-derived policy-related pain management issues and implications surfaced from the emic narratives of multiple older African Americans. These issues reflect local and state-enforced federal policies and are (1) “Access to and navigation of the healthcare system,” (2) “Affordability of natural supplements, medications, and treatments,” and (3) “Expansion of pain palliative care and community programs.” Collectively, these issues emphasize the intersectionality of social determinants of health and social determinants of equity and justice. As a function of narrative inquiry, some participant quotes are longer than typical illustrative exemplars.

Policy Exemplar 1: Access to and Navigation of the Healthcare System

I think the access to care need to be for everybody, cause I know in better communities, often times they’ll put clinics and things that’s right around the corner in White communities and things. Whereas we may not get that as much in our communities. They don’t mind stickin’ as many liquor stores and things like that in our community. I think better access, of course, will help. (Retha, age 54)

As expressed in the quote above, access to healthcare should be a basic human right, indifferent to race or community type. In response to the Patient Protection and Affordable Care Act of 2010, Louisiana was one of the first deep South states to expand Medicaid coverage. Several of our participants were not only aware of this expansion, but excited about the improved access for Louisiana residents.

Ron’s Story

Ron is a 61-year-old man suffering with “severest of the severe” multijoint OA for over 40 years. He was an avid athlete in his teen and young adult years. Ron was formerly incarcerated, and he developed a deep knowledge of health, medications, and herbal supplements from his mother and during his incarceration. Along with OA, he has chronic obstructive pulmonary disease, peripheral vascular disease, gout, and neuropathic pain. He has received physical therapy and medication for chronic pain in the past, but shares extensive concerns about his lack of healthcare access.

See, when Edwards got in the seat, the new governor, he made sure that everybody qualifies for Medicaid. The only thing that stop you is your income, that’s the only thing. You got a job and you meet the standard up on the yearly income, you still qualify for Medicaid. If you go over that, you don’t qualify for it, that’s everybody. Now see that’s White, Black, young and old. See, if I was locked up around them law books I’d know what to do. The everyday words that we use, in the legal term they mean something else. Um hum. They mean something else. See, I could write law. I know how to file writs and all that, just from the scratch of my head. I know exactly what to put down there and how to put it and everything. See, it’s a problem in the free world and the prison world for some peoples to get the proper medical care. They’re not getting it. They case get worse and they die from it. Cause I know some can’t stand the pain—they’re rather die than to keep going through that pain. I ain’t got to that stage yet. I got to the stage that I can wish it go away sometime.…Cause we feel like they limited care of Medicaid recipients that can’t get these proper medications because of race and because they’re poor, put it like that. You’ve got to have money to go see a pain specialist. The initial visit is $100.00, $150.00. Every time you go that’s $100.00, $150.00 you’ve got to pay. I just seen it, primary care physician. They stopped most of them from prescribing narcotics. They turned all that over to a pain management, and pain management here don’t accept Medicaid no more. …That’s why I say they already know what’s going on, but it’s up to them whether they want to treat you or not, give you proper medication. The federal laws have made it so hard for the Blacks, for the Negro population, that they’ve got to suffer where the other don’t. They can afford it. …We justcan’t get no help.

Despite Medicaid expansion, older African Americans and their community still experienced issues with access to care. In fact, some healthcare coverage denied many services that are needed by those suffering with OA. This disparity of “healthcare invisibility” was evident in Michelle’s (age 50) passage.

Michelle is a 50-year-old woman with severe OA, to the point of needing to use a cane and opioids consistently. Michelle has had OA for about 2 years, and is no longer employed and legally disabled. She is interested in bilateral knee replacements but was denied by a physician due to her “young age.” The interaction of racism, sexism, and ageism resulted in missed opportunities to provide quality pain care. Lost to the system, she was very candid about her experience navigating the healthcare system, which left her with more questions than answers. She discusses her cycle of inaccessibility:

Now he [her doctor] tried to get me gel. He tried to get me MRIs. He tried to get me knee braces. Medicaid wouldn’t pay for nothin’. If you can’t afford it, you just outta luck. They sent me information about the knee braces. I told ‘em. I said, “I got Medicare. Don’t start til September.” “Oh, well. Call us back,” and hang up the phone. Medicaid sure isn’t gonna help you. [Laughter] I’m just being honest. That’s why we as Black people, that’s why you have a lot of people [who] do not go to the doctor, because of the way they get treated when they go. Even if it’s in the emergency rooms, they look at you the same way… They actually think only Black [people] come in here for pain medicine. They need to get out of that mentality.

Said, “Well, tell her to come into the walk-in clinic.” I was like, “Well, I just be dang.” [Laughter] Reason why I say that, there was this White lady come in. This White family. Woman was—I don’t even know if she had insurance or not. Oh, they got her off. Rushed her off quick! Shoot. I just nodded my head. I said, “Okay.” And the other thing about it, is it depends on what kind of insurance you got. A lot of times if we do have insurance, it’s not necessarily the right insurance, or we don’t have insurance, whereas White people, they have Medicare plus something else. But they had better resources as far as doctor-wise than we did. Just that, even to this day. Some of ‘em still got better resources to doctors than we do. Prejudice is still prejudice. Prejudice to me is not a color….If it was a choice [between] this Black man and this White man, White man more likely gonna go first before the Black man does, if your bank account don’t look right or your insurance. That’s why you see a lot of us goin’ through it worser than you do the Whites. It’s the insurance thing. I’m just gonna be honest. A lot of the things that I actually need, they wanna give me MRI for my whole body to see where the arthritis is. They won’t pay for it. [tone becomes more animated] The doctors can explain why they won’t pay for it. But a lot of it is the doctors, too. They wanna charge an arm and a leg for just one little simple process.

See, now what they might do for me, since they just passed this new law in this month, that changed the Medicare program for Louisiana. They’re sayin’ I might be eligible for Medicaid. The way that’s gonna work is if I am eligible for Medicaid, what Medicare don’t pay for, Medicaid’ll take up the slack. …Oh yes, Lordy, it would. It’ll help out a whole lot. [Laughter].

On the flip side, others noted that expanded insurance coverage options and healthcare through the Veterans Administration and Medicare had indeed provided more opportunities for individuals to receive the care they need. In essence, they believed that a personal lack of engagement fostered a state of helplessness and avoidance of healthcare seeking. One woman expressed this idea by saying “My insurance pays for most things.… A lot of the insurances are makin’ it easy, because they’re tellin’ you where you can go to work out and stuff” (Jo-Etta, age 69). Another explained,

I really think that—I think what you do, that’s the key. I don’t think it has anything to do with the insurance. I just think, once you get—like, me, for an example, I quit doin’ things that maybe I shouldn’t. Maybe I should have been more active than I am now. Of course, now, I’m not gonna become that active; but when I first started havin’ it maybe I should have gotten into a regimen [of] exercising and stuff like that. It ain’t gonna do me no good now. Uh uh. I don’t even feel like goin’ to exercise! (Ella, age 85)

Despite greater access to healthcare for some individuals, some did note that having healthcare coverage does not always ensure affordable access.

If I wasn’t a veteran, I’d probably be in trouble. I would’ve had a lot of problems with healthcare, especially when I first stopped working. I think that MRI costs—they do little copays. I think the MRI—what would an MRI cost? Just give me a ballpark. It cost me $45.00. [Laughter] Mm-hmm. All of ‘em, my medication, it’s a $9.00 copay, and they give me enough for like 90 days. [Laughter]. (Ralph, age 63)

Martiela’s Story

Martiela is an upbeat 81-year-old woman, highly engaged in her health and healthcare. She is an example of a self-advocate and advocate for others. Martiela has moderate OA in all major lower extremity joints, and she also suffers from diabetes. She doesn’t believe in idly waiting for a health issue to worsen, but is proactive. Martiela revealed paradoxical effects of having insurance: that is, its role in expanding access to various treatments but also in limiting options depending on the type of insurance and amount required for copays.

Then, there was a time when doctors here in [city name redacted for anonymity] were not taking a lot of Medicare patients… in 2010, when I had my surgery. I thank God that the doctor who referred me, [physician name redacted], said to him, “you have to do her surgery.” That, to me, was an act of God, because my doctor had said, “Ms. [name redacted], I don’t know if he’s gonna take you, because he…might not be taking any Medicare patients,” just like that. I was like oh, my goodness, what in the world am I gonna do, cause then I had started falling. When we took the X-rays over there, he saw me, did the surgery. I can tell you one thing. That was an expensive—Medicare paid 80%, but that 20% was expensive. That’s why I couldn’t have it done in 2012, cause I was still working, trying to pay for that 2010 surgery.… Now, thanks to our governor, [we have] Medicaid for people that qualify, so that helps a lot. A lot of things fell through the cracks. I won’t pull the race card because I know a lot of other people who needed things, who didn’t have the insurance, as well. With this, all people got some help. Certainly, to me, that was very good. I just do believe that—exercise, and of course, with all of the insurances now, they do offer occupational therapist, physical therapist, people to come out, drop you off, and just so much, [so] it’s really almost no excuse for people to allow themselves to become a cripple. Most times, I don’t know if they just go into being cripple willingly, or what it is. Maybe they just want one of those mobile Cadillacs [wheelchair]. I don’t know. I don’t want one. I said, so you just—there just a lot of fear.

Policy Exemplar 2: Affordability of Natural Supplements, Medications, and Treatments

It is no surprise that limited access to healthcare is strongly linked to difficulty affording pain treatments. Although pain medications are one strategy to manage pain, several participants were currently using or had used fish oil (e.g., Omega XL) or other natural remedies (e.g., curcumin, apple cider vinegar, and medical marijuana) they found to be beneficial. Fish oil, glucosamine and chondroitin, and vitamin D are all supplements commonly used by individuals with OA. But even these were difficult to afford when on a limited income, particularly as most are not covered by insurance/third-party payers. In addition, many older African Americans are unaware of these supplements and their small benefits, or have no sufficient access to them. One gentleman (Laurence) even proposed a mechanism by which to increase access to fish oil and supplements for low-income individuals, which is to expand approved products in the federal food assistance programs (e.g., Supplemental Nutrition Assistance Program [SNAP]).

Laurence’s Story

Laurence is a 61-year-old man with mild OA. He has been living with OA for 6 years. Upon observation, Laurence uses a motorized scooter because of his comorbid chronic bronchitis. Although Laurence is highly educated and has had gainful employment for most of his adult life, he is no longer able to work and often is unable to afford medications. He lives in a faith-affiliated, high-rise senior housing apartment complex in the inner city. Consider his thoughts about fish oil:

It’s very important for you to use things like fish oil and vitamin D to kinda keep your body, because as you get older… See, our bodies, I can’t say they weren’t designed to live as long as that we live now, but those systems have a tendency of shutting down. You need some additional vitamin D, and you need some additional fish oil in your system. I wish I could really afford to use the premium stuff, like that, what’s the name of that? Omega? Yeah, that stuff is the bomb. Used it for one week. ‘Cause that week, I was able to do things that I just dream of doing normally. I play golf. I may swim. That should be something you should be able to get with your food stamps. I don’t think it—I don’t think that’s a stretch. Is it? ‘Cause that’s the only reason why I’d been given this, ‘cause I can’t get it with food stamps. I became involved with this one food program, and they gave it to me. I kissed the woman.… This is not rocket science here. I mean come on. We know that works.… Plenty of rest, hydrate, and get you some fish oil. There you go. Keep you some Aleve on hand for them days that you need it.

Participants also expressed difficulty in affording medications and other treatments. Of importance was the noted severity in which participants could not afford medications or medical expenses. “If you’re on a fixed income, and you promise to pay them, what, $10.00 a month, you pay them $10.00 a month. If you can’t pay ten, send five. They can’t take you to court, can’t take nothing from you, because you are trying to pay. Of course, people do send you threatening letters. I know that. I say that’s the billing department’s job” (Martiela). Some of the difficulty was a result of insurance copays. Laurence reflected on his experience on not being able to afford medications:

I went there to pick it up last month. She said, “That’ll be $2.00” I said, “Ma’am, I don’t pay for these meds. Medicare pays for ‘em.” She says, “Darlin’, all I can tell you is what the computer said.” I said, “I tell you what you do. You give me a phone number for my plan. If you don’t have any answers, darlin’, I’m not gonna stress you. I’ll just call them and ask them.” “Excuse me, what the **** is goin’ on? Because free is one thing, and $2.00 is somethin’ else.” Okay? I called to renew this month. I says, “Is there gonna be a copay?” She says, “Yeah. It’s 50 cents per pharmaceutical.” I only get three, but two of ‘em, one of ‘em is free. The other two is 50 cents each. I said, “Last month it was $2.00. Now it’s 50 cents. What’s up with that?” “Okay” she said, “Call them and ask them, and they’ll give you an explanation. You may not want to hear it, but they’ll give the explanation.” Things like diet, nutrition, and different types of drugs that you could use over the counter that will preclude getting pharmaceuticals. Because pharmaceuticals, by definition now, are ridiculously high, okay. Unless you’re smart enough, like I am, to put these people in a position where it’s, “We’ll be happy to pay for your pharmaceuticals.” See, if I was to pay for my pharmaceuticals, it would cost me probably about a grand a month.

Access to treatment and medications was even more restricted for populations living in the margin, such as those with low income or individuals currently or previously incarcerated. Several talked about the unavailability of health services and health education in senior living housing. This was important because most seniors had multiple chronic health problems, but within their facility were no health-related resources even for emergencies. For example:

Hey, look, I’m being very serious. Because there is nothing like having that kind of pain in the middle of the night you can’t go back to sleep. I mean, you just gotta lay there. These people here, they got good intentions and everything, but in my opinion… I don’t quite understand how you can have an elderly apartment complex, and you don’t even have a first aid kit. That is not making any sense to me. There’s no way that there should be a situation where you got this many elderly people, and no Aspirin in the building. (Laurence)

Let’s revisit Ron’s story and his experience with pain management while incarcerated.

See, in a lot of cases, all they do is, just for example, like if you in prison, and you complain about pain all the time, they think you trying to get out of work. Out in a free world, you complain about pain, they think you’re trying to get some drugs cause they can’t see pain. They can’t feel your pain. All they can do is just take what you say and analyze it to their own ability. That’s why so many people is worse off because they’ve been denied the right treatment when they was complaining about it because the doctor, in either situation, figure that you’re trying to get over on something. I’m gonna talk to a couple senators that I know… cause I’m doing lot of suffering.

The doctor prescribed one thing, and they give you something else. Say the doctor prescribe Dolobid. They’ll want to give you naproxen or Naprosyn. They tried that with me on some medicine that I know wasn’t the medicine that’s being prescribed. That’s another problem that causes people, especially incarcerated people, not getting no better. It be a whole different medicine. It don’t do nothing. They tried to give me some type of Aspirin one time for some type of medicine the doctor prescribed me. I know he told me the medicine I need, “they’re not gonna let me give it to you.” Later on down the line where I could get that medicine, they had took me out of population. They put me in the medical ward and I would take it. It’s a whole lot of mess because they don’t want that medicine in the population because it’s a narcotic.

Policy Exemplar 3: Expansion of Pain Palliative Care and Community Programs

Traditional palliative care programs rarely focus on non-life limiting conditions such as OA. Yet chronic pain can be disabling, especially when poorly managed, resulting in needless suffering. Likewise, some participants discussed the need to expand palliative programs, “like a hospice care for arthritis,” to provide more specialized pain care and education. To the interviewer, the need was also apparent for greater dissemination of national arthritis self-management programs; 70% of older African Americans acknowledged their interest in future participation if a program was available (Booker, Herr, & Tripp-Reimer, 2019).

Get them some type of classes. Just like they come with AA [Alcoholics Anonymous] and NNR [Narcotics], they need to come up with something about arthritis, and asthma, and all of that too. Cause these are conditions that will make you become an abuser of narcotics. Well, abuser of medicine, put it like that.…Well, it’s hard to say because you need comfort with this anyway. Just like if you sick––just like a sick person need comfort. It all come out to be the same old point, to be able to comfort somebody. That’s what hospice do. In my case, if somebody came here and sit with me and talk, then we’d be talking stuff. You’re taking the pain away from them. (Ron)

Okay, so that’s where it’s gotta be. I see a lot more proactive counselling with diabete, than I do with arthritis. It’s got a lot to do with the fact that… rheumatoid arthritis can hit you anytime. You can be 21 and have it. As I said, some counselling [is needed], especially for people that are in their 50’s and 60’s, so they know what’s available to them. (Laurence)

The extension of palliative care and pain education could also include informal support groups, as noted by one participant. A small segment of the following exemplar has been previously published and is bolded for transparency (Booker, Cousin, & Buck, 2019):

“Go on and get that negroism out of you!” [Laughter] Yeah, it’s knowledge. It goes a long way. …I talk to peoples who have been having pain for so long. The veteran painers. So they’ll tell you all about the medication and what it didn’t do for them, might do for you.…What do we do? What we do, we can sit down to talk. “How’s your arthritis bothering you?” Yeah, they’ll tell you what they’re doing.… When I get to running my mouth, pain’s got to move over. (Eddie, age 65).

Discussion

Approximately 6.1 million African Americans have some form of diagnosed arthritis (Barbour et al., 2017), representing 6 million unknown stories. The power of stories is immeasurable and can expose the need for more equitable healthcare. Like Baker et al., our analysis demonstrates the significance of understanding the many factors that contribute to and explain the unique pain experience of African American older adults (Baker et al., 2008). Specifically, their narratives humanize an issue, chronic pain, that is unseen by the physical eyes. In several ways, results from this study parallel existing literature on the noted disparities across the continuum of pain management for African Americans. For example, differential pain medication access and prescribing has been well-documented in African Americans (Meghani et al., 2020; Green et al., 2005), and this was apparent in our findings. Health disparities research often focuses on examining differential health outcomes and access to pain management in underserved populations, and rarely on the quality of services offered. Still, what is novel about our study is the specificity and awareness of the challenges of healthcare in their lives expressed by participants, and also raised questions about the current and future state of healthcare equity. The seriousness of such issues were illuminated by an interesting, yet discordant, finding. Despite the majority of research participants having insurance and implied access to care, their reality revealed that access was limited in other ways (e.g., ageism, racism, and classism with Michelle), such that quality and even basic pain care was missing or fragmented. Also original are the specific ways and opportunities to improve pain management that were suggested by older African Americans.

Pain-related provisions within the Patient Protection and Affordable Care Act of 2010 focused on improving delivery of pain management and pain education literacy of patients, the public, and providers (Relieving pain in America: A blueprint for transforming prevention, care, education, and research, 2011). These strategies can increase access to care and also to scientific knowledge of OA treatments, both important as many of our participants were using non–evidence-based interventions. Cost and lack of insurance coverage for nonopioid medications, supplements, and nonpharmacologic therapies emerged as a barrier to pain care, particularly for those with Medicaid. Although traditional Medicare and some supplemental Medicare plans cover prescription supplements or offer them at reduced prices, many OA-related supplements, such as omega-3 fish oil, glucosamine, and chondroitin, have limited research evidence to support their use in reducing pain (Kolasinski et al., 2020). African Americans bear a disproportionate burden of worse pain and functional outcomes owing to disparities in conventional treatment; therefore, some suggest they may benefit more than White Americans from self-management support interventions (Sperber et al., 2013) and require more targeted care that emphasizes psychosocial interventions and culturally tailored coping skills (Allen et al., 2019). But access to and awareness of such interventions remain quite limited in many African American communities, and additional policy advocacy is needed in low resource areas. As discussed earlier, the growing economic development of liquor stores rather than health clinics and health education centers in Black communities has further enforced healthcare and social inequality. Although many federal and state policies have been adopted over the past 25 years to improve pain care for Americans, we still do not know why deep disparities persist. Democratic chaos in healthcare permits a number of structural and system barriers, and unfavorable social determinants of health and equity create an uneven playing field.

The common thread in chronic pain treatment disparities is the burden of bad and unfairly applied social, economic, and health policies. This type of actual and perceived injustice (i.e., unfair or substandard treatment experienced from healthcare providers or others; Trost et al., 2019; Ezenwa et al., 2015) is a common adverse stressor for low socioeconomic level African American communities. Given this, it seems reasonable that future research-based pain interventions address this issue by attending to the biopsychosocial aspects of chronic pain. While mechanism-based pain research focuses on discovering new therapeutic and curative targets, reforming current polices must take precedence in addressing pain in older adults; otherwise, when new therapies or treatments are discovered and marketed, many older African Americans will once again be excluded from the care they need and deserve as Americans. Nonetheless, we are encouraged by the efforts to transform pain treatment in the U.S (e.g., Affordable Care Act and the National Pain Strategy; Relieving pain in America: A blueprint for transforming prevention, care, education, and research, 2011).

Implications

Vast opportunities exist to address policy and practice changes, but the gap in time from research discovery to policy implementation is excessively long. Meghani et al. (2012) published a comprehensive agenda to address pain disparities through policy, research, education, and advocacy. It is crucial that nurses take on the moral imperative to address pain-related disparities (Vallerand, 2018) and take an active seat at the policy table and in the boardroom to advocate for equal care at the local, state, and federal levels.

Recently, Beasley and colleagues (2019) defined and described the concept of non-hospice palliative care and its role in improving access to holistic care for individuals at any age and stage of illness. We believe that participants from the current study would benefit from such services, which could be integrated into current community-based education programs (e.g., Arthritis Foundation), home health agencies and hospices, care coordination programs, and support groups. Indeed, applying public health approaches to community-based pain management, and expanding and scaling national palliative care programs to the community, are essential strategies for improving chronic conditions in older adults (Reid et al., 2017; Gardner et al., 2018). The updated OA national agenda aims to expand nationwide access to self-management education programs (Osteoarthritis Action Alliance, Arthritis Foundation, and Centers for Disease Control and Prevention [CDC], 2020). Given the concurrent chronic pain and opioid crises in the United States, expanding the role of certified pain management nurses to community-based and primary care settings is a practical strategy on the pathway to prevention and palliative care. In addition, national policies on opioid prescribing and use must include the perspectives and experiences of older adults, especially racial minorities, to ensure that policies are free of socioeconomic bias and stereotypes and do not further restrict availability of these medications. The CDC is currently revising the 2016 opioid guidelines (CDC, 2020).

Limitations

One limitation is that some participants had previous personal connections with the PI, potentially introducing enrollment bias. Still, many of our findings are transferable to other African American populations with chronic diseases who have similar demographics and healthcare situations. Our purposeful sampling criteria and questions were gender-neutral, allowing both genders the opportunity to convey their stories of living with OA. However, we did not explore gender differences in policy issues or priorities, although there were no apparent differences. Another strength of narrative inquiry was its ability to allow participants to recount their pain care experiences that occurred over time. In terms of limitations, some of the interview questions were directed at elucidating problems that interfere with chronic pain self-management, but the purpose of the primary study was not focused on policy issues. We were thus unable to draw conclusions on the relationship between access to care and pain management outcomes. Our findings provide a launching point for future exploration on the role of large-scale and small-scale policies that directly impact pain care in older African Americans.

Conclusion

Quality and equality in pain care involves ensuring that all who need treatment receive the best, most equitable, timely, and evidence-based care. The only way to effectively shape healthcare policy is to invite key stakeholders (i.e., older African Americans) to be a part of the process. It is our hope that the narratives shared will spark larger conversations and an imperative to develop improved pain policy initiatives and disseminate pain interventions more equitably to the nation.