Self-care management is an important part of living with a chronic illness. Sickle cell disease (SCD) is a chronic disease with acute, painful exacerbations that often results in a shortened life expectancy. Some middle-aged and older adults with SCD lived with the disease prior to having a diagnosis and without modern advances. The purpose of this study is to share the self-care recommendations of middle-aged and older adults with SCD. Using descriptive qualitative methods, data were gathered through semistructured interviews from 11 individuals living with SCD, including 6 women and 5 men. Self-care recommendations themes included physiological, psychological, and provider-related. The self-care recommendations may be seen as an additional resource or “words of wisdom” for younger adults with SCD who can use the recommendations to better manage their own disease. Additionally, providers may be able to use these recommendations to inform their practice.
Older African Americans have traditionally been highly respected within their families primarily due to experiences, knowledge, and recall related to historical events that have influenced their lives [
In as much as African American elders may possess a wealth of knowledge and information related to historical experiences, it may be useful for health care professionals to engage in reminiscence when interacting with older African Americans [
SCD is a chronic condition found primarily in populations of African American and sub-Saharan African descents [
The life expectancy for persons with SCD has increased from 14 years in 1973 to the mid-to-late 40s in 2004, transforming SCD from mainly a childhood disease to a long-term chronic illness [
In the health care practices of individuals living with chronic diseases, self-care activities are very important. For vulnerable, predominantly minority populations, such as individuals with SCD, self-care activities are even more important. In the case of SCD, medical interventions result in substantial costs financially and psychologically. Health-related stigmatization may hinder care-seeking for the acute pain exacerbations of pain—the hallmark of the disease [
For these reasons, self-care activities are critical to decrease health care costs as well as improve the health status and quality of life for persons living with SCD. By learning how middle-age and older adults with SCD cope with the many challenges of SCD, providers may be better able to address these challenges while also incorporating appropriate self-care strategies into the plan of care of others with SCD. Once SCD has been diagnosed, individuals need to learn to manage symptoms and maintain control over the course of the disease to maintain an acceptable quality of life [
The data presented were collected as part of a study wherein we used what Plummer referred to as the “researched life story” (page 396) in order to deliberately elicit information as to how middle-aged and older persons with SCD explained their longevity and viewed the place of the disease in their lives [
Participants were recruited from a list of patients being treated in an adult sickle cell program in the southeastern United States. For the original study, they were purposefully selected to represent middle-age and older adults who had lived beyond the median lifespan expected for their type of SCD. They were also selected to include both females and males as their life trajectories and SCD complications were expected to be different. We anticipated that the sample would be predominantly African American to reflect the disease profile in the US [
The life stories of persons with SCD were elicited in moderately structured and open-ended interviews conducted in a private area of the clinic. All interviews were conducted by the first author, a nurse scientist, who is not a provider for the participants. Interviews lasted from 1 to 2 hours.
Each participant also completed a demographic questionnaire which included general questions about age, education, income, employment, and relationship status. Participants were asked to provide specific sickle cell and other health-related information, including age of first sickle cell crisis, average number of times hospitalized with SCD crises per year, SCD complications, type of SCD, and any other medical conditions.
All of the interviews were audio-taped and professionally transcribed verbatim. The data were subjected to thematic analysis [
Participants included in this secondary analysis were 11 middle-aged and older adults with SCD, including 6 women and 5 men ranging in age from 48 to 72 years. Demographics of the sample are summarized in Table
Demographic description of respondents.
Variable | Female response ( | Male response ( |
---|---|---|
Age (years) | 57 (range 50–72) | 54 (range 48–61) |
Education | 12.3 (range 5–16) | 13 (range 12–15) |
1st SCD crisis (age in years) | 10.2* (1.5–21) | 6 (range 3–9) |
Average SCD crises per year (number) | 2.3 (range 1–4.5) | 1.2 (0–3) |
Variable | ||
Employment | ||
Disabled | 4 (66.7%) | 3 (60%) |
Full-time | 1 (16.7%) | 1 (20%) |
Retired | — | 1 (20%) |
Never employed | 1 (16.7%) | — |
Marital Status | ||
Married | 2 (33.3%) | 1 (20%) |
Living with domestic partner | 2 (33.3%) | 1 (20%) |
Separated | 1 (16.7%) | — |
Divorced | 1 (16.7%) | 1 (20%) |
Single | — | 1 (20%) |
Widow | — | 1 (20%) |
SCD Type | ||
SCD-SS | 4 (66.7%) | 4 (80%) |
SCD-SC | 1 (16.7%) | — |
Unsure | (14%) | 1 (20%) |
*Note that the average number of SCD crises was skewed by 2 respondents who reported first SCD crises at age 21.
Self-care recommendation themes.
Theme | Female response | Male response | Total frequency |
---|---|---|---|
Physiological Self-care | 6 | 4 | 10 |
Psychological Self-care | 3 | 5 | 8 |
Provider-related Self-care | 3 | 2 | 5 |
Physiological self-care recommendations were the most prevalent self-care recommendations provided with 10 of 11 respondents providing suggestions in this area. Physiological self-care recommendations were suggestions related to taking care of the physical body and included staying warm, staying hydrated, getting enough rest, and eating “good” food. Respondents suggested that individuals with SCD should avoid smoking, drinking, and using drugs.
Both women and men spoke about the importance of staying hydrated. A 59-year-old female with SS disease stated “Drink plenty of water. They tell me they see me, a bottle of water with me all the time. Drink, drink, drink the liquids.” Similarly, a 48-year-old male with SS disease stated that it is important “knowing what to do and what not to do.” He went on to say that one should not “overt exert yourself” and “keeping hydrated” is important.
Putting “good food” into the body was also discussed by women and men. A 58-year-old woman with SC disease stated “Well, for one thing I’d tell them you better eat right. You gotta, you gotta eat to live.” Another woman, a 53-year-old with SS disease stated “You need to do a lot of preventative measures. You need to eat right, not fast foods. You need to eat veggies and take vitamins.” A 48-year-old man with SS disease related his ability to maintain employment better than others that he knew with sickle cell to diet. He stated “Well, my work history was a little, somewhat better. I could handle myself better. I knew what to eat. I knew how far to push myself.”
Eight of 10 respondents made recommendations in the area of psychological self-care. These recommendations focused on obtaining knowledge and understanding of the disease, listening to and learning about the body, saying prayers, and having social support in the form of someone to talk to.
The most prominent psychological self-care recommendation was to learn how to listen to one’s body and learn your limits in order to learn how to adjust. A 59-year-old with SS disease stated “Your body will tell you it’s tired. You listen to your body. Your body is going to tell you before you get sick. Your body is going to tell you that it’s tired. And you should
Respondents also spoke about the importance of knowledge and how they often made the effort to learn more about SCD in order to take care of themselves better. During what she now describes as an avoidable hospitalization, a 53-year-old with SS disease stated that she went “on line getting research about the do’s and don’ts and the ins and outs of sickle cell” because she wanted to know more. Likewise a 51-year-old male with SS disease stated “Reading. Reading up on everything about sickle cell. The more you read about it, the more you can understand your own body. The more you can do for your body. So I guess that’s what it is, reading a lot of things about sickle cell.”
The final psychological self-care recommendations, praying, and talking to someone were only discussed by female respondents. A 50-year-old with SS stated “Ask God to help you. I promise you if you let him help you, you could- you don’t know how long you gonna live.” Similarly, a 59-year-old with SS disease stated “Keep focused, and keep it in God’s hands. Believe and trust in him. Talk to somebody.”
This study took place within a comprehensive sickle cell program. Respondents, both women and men, thought that an important aspect of self-care is having knowledgeable health-care providers and following their orders. A 53-year-old with SS learned over time that it is important to follow doctors’ orders. She stated “I listened to the doctor, it was hard for me to adjust. I listened to the doctor, even though I didn’t want to and I would still try to do some of stuff that I wanted to do, go out and party and such and I realized that I was over exerting myself. He told me that was going to happen and it happened and I was in the hospital and I had nobody to blame but myself so I really started listening to the doctor.” A 50-year-old female with SS disease stated that one should “do what the doctor say, even if you think you don’t want to. Do what the doctor say.” A 48-year-old man with SS disease stated “Seeing educated people. People that are educated about sickle cell, know about sickle cell patients, and I don’t have to tell them about sickle cell. And so far, I’ve run into doctors and nurses and I guess they’ve been trained. They know and I don’t have to explain any of it, what sickle cell is.”
The data are from life review interviews and therefore are influenced by participants’ recall of events and feelings at the time of those events and their circumstances at the time of interview. Thus, the participants’ reflection on self-care recommendations may also be influenced by his or her circumstance at the time of the interview. Additionally, these self-report interviews were conducted in one session and this is not ideal. It is also important to acknowledge that participants may have had unknown or undiagnosed cognitive impairment.
Although the sample size was small, it is a sufficient sample size, considering the qualitative design of the study. The researchers did not intend to make any generalizations from the findings, but to add an unexamined dimension to the explorations of the lifecourse of individuals with SCD by sharing directly the self-care recommendations of middle-aged and older adults with SCD.
Despite the noted limitations, the self-care recommendations of middle-aged and older adults living with SCD may provide guidance hope to others living with the chronic illness. A 50-year-old woman with SS disease stated it best when she said, “If you can’t get no bone marrow [transplant], you got to learn to live with it.” Many middle-aged and older adults have learned to cope with the challenges of SCD over time and their life course experiences may be beneficial to others.
Although many middle-aged and older adults with SCD have lived beyond expectations, very little research has been conducted with these individuals. Thus, very little is known about their lives. However, findings are consistent with previous research that found that older African Americans are generally knowledgeable about illness and self-care and tend to have beliefs about their responsibility regarding adherence to provider recommendations [
The authors thank the respondents who shared their stories. This research was funded by grants from the American Nurses Foundation and the University of North Carolina at Chapel Hill University Research Council.