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A Qualitative Analysis of Best Self-management Practices: Sickle Cell Disease Paula Tanabe, PhD, MPH; Jerlym Porter, PhD; Melissa Creary, MPH; Eric Kirkwood, BS; Shirley Miller, BBA; Efa Ahmed-Williams, MA; Kathryn Hassell, MD

Funding/Support: This research was supported by the Sickle Cell Adult Provider Network. Dr Tanabe was supported by grants from the National Institutes of Health (K23NR010940) and the Mayday Fund. Dr Porter was supported by a grant from the Agency for Healthcare Quality and Research (T32 HS00078). Background: Sickle cell disease (SCD) is associated with serious comorbidities resulting in a shortened lifespan, and many clients suffer from frequent pain episodes. However, others successfully manage their disease in the outpatient setting without the need for frequent health care utilization. The purpose of this project was to describe specific strategies used by adult clients with sickle cell disease to achieve optimal physical health. Method: A Best Self-management Practices workshop was held in conjunction with the Sickle Cell Disease Association of America meeting. A panel discussion was organized; adult clients were recruited for participation. The workshop was divided into 3 topics: complementary and alternative medicine, psychosocial issues, and work/education/training. Panel discussions were audiotaped, transcribed, and analyzed using the constant comparative method. Results: Seven adult patients with sickle cell disease and 1 social worker participated. The following themes emerged: self-awareness, emotional support, career selection and success factors, nutrition, advocacy, knowledge, physical, and complementary and alternative medicine. Self-awareness was the most reported strategy with emphasis on journaling and body awareness. Emotional support included spiritual support, friends, family, professional counseling, and spiritual support. A variety of suggestions were discussed related to the other themes. All participants used many strategies daily to maintain optimal health. Keyword: sickle cell anemia J Natl Med Assoc. 2010;102:1033-1041 Author Affiliations: Department of Emergency Medicine (Dr Tanabe) and the Institute for Healthcare Studies (Drs Tanabe and Porter), Feinberg School of Medicine, Northwestern University, Chicago, Illinois; Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia (Ms Creary); Uriel Owens Chapter, Sickle Cell Disease Association of America, Kansas City, Kansas JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION

(Mr Kirkwood); Southwestern Comprehensive Sickle Cell Center, Children’s Medical Center, Dallas, Texas (Ms Miller); The Sickle Cell Organization, Baltimore, Maryland (Ms Ahmed-Williams); Division of Hematology and Colorado Sickle Cell Treatment and Research Center, University of Colorado Denver School of Medicine, Aurora, Colorado (Dr Hassell). Correspondence: Paula Tanabe, PhD, MPH, Institute for Healthcare Studies, 750 N. Lake Shore Drive, 10th Floor, Chicago, IL 60611 ([email protected]).

Introduction

S

ickle cell disease (SCD) is associated with serious comorbidities resulting in a shortened lifespan and a lower quality of life when compared to most patients with renal failure.1-3 Many clients with SCD also suffer from frequent pain episodes, often on a daily basis.4 Many health care providers perceive patients with SCD to be addicted to opioids, and negative attitudes toward patients are common.5,6 However, many patients with SCD successfully manage their disease in the outpatient setting without the need for frequent health care utilization and do not require frequent hospitalizations and/or emergency department visits. This group of patients is very productive; however, little is known about specific strategies used to maintain good health. Much could be learned from these individuals with SCD who manage this complex disease within the context of school, employment, and family life, and maintain good health. The purpose of this project was to describe specific strategies used by adult clients with SCD to achieve optimal physical health and quality of life.

Method Design Grounded theory using a constant comparative method was used to conduct the study. In grounded theory, theories are generated based on the data collected. This research method is very useful when little is known about a topic.7 Institutional review board approval was obtained, and subjects (panel members) signed a written consent prior to study participation.

Participants/Setting Participants were identified using purposeful sampling. The Sickle Cell Adult Provider Network (SCAPN) VOL. 102, NO. 11, NOVEMBER 2010 1033

Sickle Cell Disease Self-management

group hosted a preconference workshop in conjunction with the annual meeting of the Sickle Cell Disease Association of America, held in New Orleans, Louisiana, in September 2008. The SCAPN network is a group of adult providers (physicians, nurses, and other disciplines) that provide care to adults with SCD. Adult clients with SCD or parents with children with SCD are also group members. A list serve is used throughout the year to post questions regarding disease management and facilitate discussion of challenging issues. SCAPN also hosts approximately 2 face-to-face meetings yearly held in conjunction with national SCD meetings. Each participant was provided with a stipend by SCAPN to attend the annual meeting, and all subjects received additional monies through their work or through additional fundraising.

Workshop Description A small committee of SCAPN members (providers and clients) was formed to plan the workshop. The topic for the workshop was best self-management practices. In an attempt to minimize researcher bias, the client committee members, not the investigators, chose the

speakers and topics for the conference. The committee identified adult clients who would be able to attend the meeting in New Orleans and were known to use multiple strategies to maintain good health. A total of 7 different individuals were invited to present, including 1 social worker identified by the committee as having valuable information to contribute. The committee members also identified the specific topics that they felt would be meaningful for discussion during the workshop. Three topics for discussion were selected to organize the workshop: complementary and alternative medicine, psychosocial issues, and work/education/training topics. The committee matched topics with speaker expertise. Notably, pain was not identified as a discussion topic by the members; however, the discussion of the selected topics touched on ways to improve pain management. The workshop was divided into 3 segments according to the topics listed above. Prior to the beginning of the workshop, the 7 client participants completed a brief survey, which included demographic characteristics (age, gender), sickle cell genotype, frequency of pain episodes, emergency department utilization, complications of SCD, relationship with a physician, and

Table 1. Sample Characteristics Characteristics Genotype SS SC Within the last year, approximately how often did you have pain episodes that you were able to manage at home? Within the last year, approximately how often did you have pain episodes that required you to come to the emergency department? Within the last year, approximately how many times did you have to be admitted to the hospital to manage your pain? Compared to the last year, rate the frequency of pain episodes compared to the last 5 years. More episodes About the same Fewer episodes Within the last year, approximately how many times did you have to be admitted to the hospital for complications from sickle cell OTHER than pain? List all complications you have ever had related to sickle cell disease. Stroke Acute chest syndrome Iron overload Aseptic necrosis of the joints Priapism (4 males) Leg ulcers Liver disease Gall bladder disease Kidney disease How many times per year do you see your physician in an outpatient setting?

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Results (n = 7) Number 5 2 Median: 3 Range: 0-20 Data: no pain, 0, 3, 3, 6, 9, ≥20 Mean: 0.8 Range: 0-3 Data: 0, 0, 0, 0, 1, 2, 3 Mean: 0.4 Range: 0-1 Data: 0, 0, 0, 1, 1, 1, 1 2 4 N=1 Frequency 0 1 1 4 2 3 0 4 1 Median: 4 Range: 1-24

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frequency of visits with physician. While genotypes were not verified via medical record review, all subjects were very educated about their disease and were very knowledgeable of their genotype as well as all other complications associated with the disease throughout their life. Many of the participants frequently speak on patient panels in a public forum. Two to 3 speakers were invited to present an overview of their comments on the topic for each segment. Each speaker presented for 30 to 45 minutes, followed by discussion among the panel members. This portion of the workshop was audiotaped using digital recorders. During the actual workshop, the speakers were not interrupted by the investigator at any time. Upon completion of the panel member discussion, the tape recorders were turned off and a discussion with the audience was held. Audience discussion was not audio-taped because it would not be possible to obtain informed consent from audience members who came in and out of the room during the 4-hour workshop.

Data Analysis Digital files were transcribed into 3 different Word documents (Microsoft, Redmond, Washington) and analyzed using constant comparative methods, which is a process used to evaluate interrater reliability. More specifically, the principal investigator and a health services research fellow not involved with the project first independently reviewed the majority of the 3 transcripts and identified common themes. Analysis of latent (meaning of the words) vs manifest (actual words) content analysis was used. After the initial independent review, the principal investigator and fellow met and discussed the themes. A new coding structure was identified. The reviewers then independently reviewed all the transcripts again using the new coding structure. Following the second independent review using the revised coding structure, the reviewers met again to review the themes. The original agreement was 59%, and after meeting the second time and discussing the themes, agreement was 100%. In order to assess validity of the themes identified, member checking was conducted. One panel member from each of the 3 topics for discussion was asked to review their corresponding transcript, the final coding scheme, and results to evaluate the validity of the final coding scheme. No changes in the coding structure were required after panel member review.

Results

Eight adults participated in the workshop (50% male; median age, 48 years; range, 36-55 years; 3 participants did not report an age). Participants resided in the following states: Florida, Kansas, Maryland, Tennessee, and Texas (n = 2) (missing data [n = 2]). All participants reported having a physician, and no participant primarily used the emergency department to manage their disease. Results from the survey are presented in Table 1.

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Table 2 summarizes the emergent themes and subthemes as well as selected quotes associated with each theme. Themes are listed in order of frequency within the table, and subthemes are also listed in order of frequency within each major theme. The following 8 themes emerged as the final parsimonious coding structure and are listed in order of frequency of occurrence, followed by the number of mentions within the transcripts: self-awareness (52), emotional support (30), career selection and success factors (29), nutrition (25), advocacy (23), knowledge (15), physical (15), and complementary and alternative medicine (11).

Self-awareness A general sense of self-awareness emerged as the most important strategy used by clients to manage their symptoms. Self-awareness was conveyed as being aware of certain behaviors that promote or diminish health. Clients discussed the importance of an overall positive outlook as being critically important. The topic of journaling was also discussed at length, both by the panel members and later during the audience discussion section. Many clients used journaling to begin to understand what type of diet or activities triggered episodes of illness or pain. Journaling was often a key turning point in several participants’ life. Through journaling they began to take control of their disease. Journaling and a general sense of “body awareness” were often linked. Clients described the importance of staying in tune with their body and recognizing when they needed more rest, were doing too much, or beginning to feel ill. Finally, the importance of a physician relationship was also identified as an important subtheme. Clients were very aware of how important this relationship was to maintaining good health.

Emotional support Emotional support emerged as the second most common theme. Emotional support can help mitigate the impact of mental health conditions, and emotional stress and improve psychosocial functioning. The panel participants highlighted specific means of emotional support, including spiritual support, friends and family, and professional counseling. All participants identified spiritual support as the most important source of emotional support.

Career Selection and Success Factors One of the 3 panel topics specifically discussed strategies for successful career selection. A major focus of this panel discussion surrounded mechanisms to be able to afford and obtain training or college education. Tuition reimbursement and grants were discussed as examples. Once employed, the health benefits, as well as other 401(k) and retirement benefits were also discussed. Assuring that the health benefits allowed seeing one’s own physician was also an important point of discussion. VOL. 102, NO. 11, NOVEMBER 2010 1035


Participants discussed a wide variety of factors when selecting a career and included selecting a job that was not physically demanding, considering the weather conditions (inside vs outside in extreme temperatures), and the general weather of the state (eg, Alaska or very cold climates may not be an ideal choice). Selecting a career that allowed some flexibility was also discussed. Examples included a real estate agent and positions associated with teaching or an academic calendar.

Nutrition Participants also identified nutrition as a major theme to achieve optimal health. A major subtheme was following a generally healthy diet consisting of fruits, vegetables, and whole grain fiber; and limiting meat with high iron content, fast foods, and refined foods. Many participants endorsed the use of a variety of vitamins (multivitamin, B vitamins, C, and folic acid), and herbal supplements (dandelion, burdock, ginger, garlic, milk thistle). All participants also acknowledged the need to

Table 2. Best Self-management Practices: Themes and Selected Quotes Emergent Themes and Subthemes Self-awareness Positive attitude

Selected Quotes Illustrating Emergent Themes “You need to be proactive and have a positive mental attitude.” “Don’t be afraid to live, don’t be afraid because you have sickle cell, you can manage it if you want to, you can do anything you want to do.” “So I don’t believe in excuses, I don’t believe in being an enabler.”

Body awareness

“I started to understand what things, what I was doing to contribute to my being sick. And I felt like there was some way to control it and it was my need to control this disease and not let it control me.”

Journaling

“I started journaling because I started trying to research why I would get sick, and what happened to make me get sick because I got tired of getting sick. I got tired of not being able to do things. So I said, ‘well maybe I should kind of figure out what I did the day before.’”

Setting realistic goals

“It is about planning. And somebody said it earlier about planning your work and working your plan.” “I had to learn how to say ‘no’ and listen to my body and just take off and to say well today I am staying at the house.”

Importance of physician relationship

“It is crucial for us to be compliant in maintaining a relationship with our health care provider and one way to do that is to go to your appointments and the second thing is to make sure you take your medications.”

Lifestyle changes

“..these kids were born eating wrong. It is hard now to change. You cannot change your taste buds overnight.”

Emotional support Spiritual

“There is a text in the Bible that deals with being joyful, and they call it the fruit of the spirit, joy and peace, and goodness and etc, and that is what I read, that is where I get my energy so that I can go on.” “Every night it does not fail, to get down on my knees when I can and simply thank God for another day and I trust you. Thank you and I trust you. That is my simple prayer I say every night.”

Counseling

“So don’t be afraid to seek professional help. I have talked to a psychologist before, and you know it helped me. It is good to have someone who is trained that can give you strategies for managing your mental health…There’s kind of a stigma…you must be crazy going to see a shrink…but depression is a real disease and it is treatable…”

Social support

“Seek the support of your family and friends, talk to people in your family, have people pray for you.” “I am extremely blessed to have some men friends, and we know how we are as men and there is a rumor that men can’t talk to each other and share their feelings.”




evaluate the use of vitamins and minerals on an individual basis.

of being able to articulate an accurate medical history, including all complications.

Advocacy

Physical

All of the panel members were formally engaged in many activities to help inform and educate others about sickle cell anemia. Panel members were very engaged in teaching clients and health care practitioners. They also viewed these activities as helping achieve an optimal state of health and quality of life. Self-advocacy was important to ensure positive interactions with members of the health care team.

All panel members identified the importance of participating in some form of exercise as well as the importance of obtaining adequate sleep and rest. Clients identified days when they needed to stay in bed an entire day. Everyone also identified times when they did not obtain adequate rest which resulted in pain crises or other illnesses. Finally, constipation prevention was also an important theme. Some clients take opioids on a daily basis, and even when not the case, this was identified as an important strategy to avoid illness.

Knowledge Knowledge of federal employment rights and regulations was identified as being important to protect against potential illegal job loss. Panel members also acknowledged the importance of understanding SCD and being aware of individual baseline lab values (hemoglobin, hematocrit). Participants also discussed the importance

Complementary and Alternative Medicine A wide variety of complementary and alternative medicine strategies, such as acupuncture and massage, were used by panel members.

Table 2. Best Self-management Practices: Themes and Selected Quotes (cont) Emergent Themes and Subthemes

Selected Quotes Illustrating Emergent Themes

Career selection and success factors “Resources for paying and staying in college, you want to consider federal and Finances state grants, those are things you don’t have to pay back…school-related funds that you receive such as scholarships, grants, assistantships, work study…..” Weather

“A thing that you should consider when you are looking for programs is the school conducive to your health. So if you have sickle cell disease, do you really want to go to the University of Alaska?” “…online courses cut down on travel to campus, walking, being out in bad weather conditions.”

Training

“So the main goal about education is that it comes in many different forms, not just going to college. So it could also be apprenticeships or community college or technical or vocational school as well.” “You may want to consider online courses.”

Flexibility

“You need things that give you flexibility in the workplace, with your schedule…I myself chose real estate. I work my own hours, I work at my own pace. I make good money when I close…and I add it to that these are certificates that you can go get and you can get them quickly to get started.”

Proximity to physician

“How far is it from home because you can have a particular doctor that you are attached to.”

Interest

“You want to consider the areas of interests that you want to study….You want to evaluate what your purpose is for returning to college. Is it something you want to enhance the career that you already have? Do you want to gain new skills or get a better job?”

Staying healthy

“When you seek employment the number 1 thing you have to do is get your health in shape. You have to figure out how to manage your health so that you can be a productive employee because there are no laws, you are subject to the same rules everybody else is subject to when it comes to a job.”


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Discussion

Initial reaction to these findings may lead the reader to believe the panel participants were an aberrant cohort of adults with SCD who were functioning at a higher level than normal and must therefore not have a severe form of SCD. As reported in Table 1, with the exception of 1 participant, individuals had very few hospitalizations or ED visits. The question was asked with respect only to the last year. Participants also reported a median number of pain episodes of 3, which has been found to be associated with more serious health outcomes. Subjects also reported having multiple complications throughout their lifetime. Most persons with SCD have many years where their illness is more under control and other years where their complications and pain episodes are much more severe. This cohort was functioning at a

high level, however: (1) there are no comparison data available to understand how the majority of persons with SCD function or reason to suspect their disease was any better or worse than most persons with SCD; and (2) subjects only reported their pain episodes and emergency department and hospital use within the past year. Discussion with the subjects revealed that each person had been very ill in the past, experienced many years of very severe illness, and finally was able to learn how to manage the disease—which are the reasons they were selected to participate in the workshop. The panel discussion revealed that effective selfmanagement of SCD involves several aspects, including self-awareness, knowledge, advocacy, and a positive attitude. The results indicate the importance of utilizing a more holistic (mind, body, and spirit) approach to care

Table 2. Best Self-management Practices: Themes and Selected Quotes (cont) Emergent Themes and Subthemes Nutrition Diet

Selected Quotes Illustrating Emergent Themes “Food is one of the best medicines, eating wholesome balanced meals that include fresh fruits, vegetables, whole grain nuts and beans is the first line of defense…It is amazing now the additives and things that are in foods. So, if you can eat a wholesome balanced meal on a regular basis….”

Herbal supplements “I have used dandelion and burdock as tonic over the years and it seems to be a blood purifier and helps your liver….Goldenseal is good for colds and your immune system, and ginger, and garlic is good for everything.” Vitamins

“I take vitamins C and B on a regular basis. B vitamins help with your energy levels, and also folic acid…but I supplement a daily multiple vitamin, zinc, and a B complex….Zinc really helps if you have a leg ulcer.”

Asian practices

“…read about balancing your body, the yin and yang and being mindful of your environment and how to balance yourself with the whole ecosystem…kind of gave me insight into how to live in harmony with your environment and learn about how the body works with the different cycles of life.”

Advocacy Informing and educating others Self

“We have to get this information out to the medical staff because sometimes the medical staff, are, you know, in nursing school—they don’t teach you anything about sickle cell, like 2 paragraphs in a book.” “We have to do whatever it takes. Sometimes we have to be our own advocates. If someone is not doing it we have to do it ourselves. Not everybody is going to be caring about you or for you...you have to find your little niche in life and make it work for you and live, live. You are living with sickle cell, you are not dying of sickle cell.”

Documenting illness “If you become sick within that period of time, then always be sure to have your doctors notes, turn those in on time, and because of the ADA companies are not supposed to discriminate against you.” Filing employment complaints

“We have situations where there are people that have been fired because they found out later on that they had sickle cell and they said well you didn’t originally disclose that, so we are going to have to let you go. You do not have to disclose in an interview and once you do, if you are fired for that, that is a legitimate cause of action for you to go to the EEOC…”




for patients with SCD. Other important areas highlighted: the impact of SCD in career selection and successful job performance and the importance of emotional support through family, friends, and spiritual outlets, following a healthy diet and obtaining adequate rest and exercise. Many of the self-awareness and emotional support strategies identified by the panelist could be useful in helping to support both the physical and emotional health of patients with SCD. In particular, depression is common among patients with SCD,8,9 and depression

and anxiety have been associated with lower physical and mental health quality of life and a worse patient pain experience.10 Results from the current study suggest that it may be beneficial for providers to encourage patients to use journaling and other self-awareness activities to improve their quality of life and gain a sense of perceived ability to control their disease. An evaluation of emotional and psychosocial functioning and availability of information about resources for professional therapy or counseling and support groups/mentorship programs may also be helpful for some patients.

Table 2. Best Self-management Practices: Themes and Selected Quotes (cont) Emergent Themes and Subthemes

Selected Quotes Illustrating Emergent Themes

Knowledge Federal employment rights “Know your rights…..The Americans with Disabilities Act protects discrimination and regulations in all employment practices…The Equal Employment Opportunity Commission enforces the piece where all employers including state and local government with 15 or more employees that EEOH enforces with them. And the Department of Justice enforces when it comes to discrimination in state and local governments.” Sickle cell disease

“You need to know as much as you can about sickle cell…..know your levels, your hemoglobin and all those different things, know about how the body works, anatomy…know how the different organ systems are impacted so that you know to have your gallbladder checked out or to have your eyes checked, or you know, see a cardiologist….”

Employer-specific policies

“You want to do just basic things that all employees would do, go to work on time, be proficient, don’t take long lunches, don’t show acts of insubordination, just basic things.”

Physical Heat

“…she still wants to put me into the hot tub.” “..when we go to camp the kids come out of the pool we make them take a hot shower to keep the temperature up.”

Exercise

“…try to do some type of exercise every day. Just get up and move around, um walk if you can. Do yoga, stretching, some type of stretching, weighting training if you can do it, join a gym. Use the sauna and the steam room to seat out toxins and a Jacuzzi and whirlpool really help to relieve stress and ease muscle tension.”

Constipation prevention

“You take those pain medicines they will give you stomach problems. An accumulation of waste in your colon has a bad effect on your overall health. It is essential you have regular bowel movements…. To combat constipation take plenty of water, eat high fiber foods, take like psyllium husk or flax for bulk or use herbal laxatives.”

Sleep

“When you are tired you need to rest and don’t go beyond your endurance. Sometimes I don’t feel well; I stay in bed all day. If I am tired I take a day off, I have to recoup. If not, I am going to be in the hospital.” “If you snore go have a sleep test done and check for sleep apnea, because that is something that I found was really important for me that has made one of the biggest impacts on how I feel…I would wake up in the middle of the night with sickle cell crisis because I wasn’t getting enough oxygen. So now, I use a CPAP machine to sleep with.”


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Academic and vocational issues are important for patients with SCD because physical complications may lead to academic failure, limited career options, and disability status.11 Further, there is a lack of appropriate resources for patients with SCD, and academic and career personnel may not be aware of the particular academic issues faced by these patients.11 The panel discussion on career-related concerns points to a need for providers to inquire about any issues related to career choice and employment to help maximize patients’ ability to seek meaningful work or pursue academics. Nutrition and dietary intake were also identified as an important issue. While the use of the vitamin/complementary medicine modalities was discussed at length, it is important to understand that these therapies have not been well studied in persons with SCD. Some patients with SCD may reduce their caloric and macronutrient intake during pain episodes, resulting in acute malnutrition, decreased metabolism, and inability to maintain a healthy weight.12 Chronic anemia leading to underweight and adequate nutrition are often challenges for many patients. The importance of nutrition among the panel members was evident. Referral to a nutritionist may also be helpful for individual patients who have difficulty maintaining weight or who have poor dietary habits. Physical activity was also identified as being an important strategy for maintaining good health. However, similar to patients with chronic pain, some patients with SCD have a fear of movement because they fear physical activity may lead to pain episodes.13 Exploration of this

topic may be beneficial for some patients and referral to physical therapy may also be helpful in certain cases, especially to help treat chronic pain. Finally, the role of advocacy and education was identified as being very important. Recently, the Sickle Cell Summit group published a position paper emphasizing the need for increased advocacy and education about SCD and the unique role of the patient as an agent for change.14 The results from this study are consistent with studies involving another chronic disease, diabetes. While there is no stigma associated with diabetes, SCD and diabetes are both chronic diseases associated with many serious comorbidities that benefit from patient self-management. Data have been demonstrated that effective control of diabetes requires that patients be actively engaged in the self-management of their health, and patients’ feelings of self-efficacy and perceived control over their illness both impact their ability to effectively manage their chronic illness.15-17 Sarkar et al found that diabetic patients with higher levels of self-efficacy (the level of confidence in one’s ability to perform health behaviors) reported better diet, exercise, self-monitoring of blood glucose, and foot care practices.17 Jerant et al explored the barriers to self-management of chronic diseases and found that factors such as depression, poor physician communication, low family support, and lack of awareness were barriers to accessing and engaging in self-management support resources.15 Some of these concepts were evident in the current study, including the importance of compliance, a good working relationship

Table 2. Best Self-management Practices: Themes and Selected Quotes (cont) Emergent Themes and Selected Quotes Illustrating Emergent Themes Subthemes Complementary and alternative medicine “I know a person that the way she controls the sickle cell she has acupuncture like Acupuncture I guess every 2 weeks, and that is her therapy.” Massage

“Massage is a good therapy for sickle cell. It also gets rid of the toxins from the body.”

Reiki

“Reiki is another healing system deals with… healing touch….it is just like laying hands on people and I have seen it help to relax and actually remove pain.”

Jinshinjitsu

“..is sort of like reflexology….it is like a relaxation technique that deals with the different pulse points of the body…the patients that tried this out found that they were able to calm themselves down and feel more relaxed.”

Chiropractic

“I have used chiropractors before for back strains or whatever…sometimes they are covered by insurance.”

Visualization

“I got a picture of red blood cells and put them up in my room. I put them in different places where I could see them every day so that I would see a red blood cell, what a healthy red blood cell looked like, and I visualized that is what was going through my body.”




with health care providers, and professional and social support. In addition, the panelists discussed at length about using knowledge and awareness to gain control over their illness in both their personal and professional lives. Panelists specifically discussed the important role of physician providers in the self-management of SCD. Diabetes research has also demonstrated this importance. In a systematic review of interventions to support diabetes self-management, the authors conclude that physician self-management support can have a positive impact on medication adherence, monitoring levels, management of comorbid psychological conditions, and a patient’s self-efficacy.16 Specifically, the quality of patient-provider communication has been found to be related to adherence and outcomes.18 Further, patientcentered care, in which the provider supports patient autonomy, has been found to be related to improved glycemic control,19 and provider participatory decision making has been associated with higher self-management assessments overall with chronic diseases.20 These findings, in addition to the current results, emphasize the importance of the provider in creating an environment in which patients feel understood, validated, and actively engaged in their health self-management. A strength of the study was that, to the best of our knowledge, this was the first attempt to identify specific strategies used by adult clients with sickle cell anemia who successfully self-manage their disease. This was a carefully selected panel of very high-functioning adults with SCD. However, all clients reported being very ill and having frequent pain episodes earlier in their life. None of the participants reported ever being entirely healthy and described a journey of self-awareness and the development of a positive attitude that resulted in taking control of the disease. A limitation of the study was that it was not possible to audiotape audience participation discussion, which contributed to the overall richness of the workshop. In general, the themes discussed in this manuscript were acknowledged by audience members and the discussion was similar. No additional major themes were remembered by the investigator. Future research is needed to assess motivation, selfefficacy, and perceived control over illness in addition to exploring the barriers to self-care management for those patients who are not as successful. Also, designing interventions to teach effective self-management strategies and improve utilization of these strategies may increase self-management skills and improve overall quality of life for patients with SCD.

Acknowledgments

We would like to thank Christian Billington and Sickle Cell Disease Association of America for workshop coordination. We would also like to thank all providers and clients who participated in the workshop.


Finally, we would like to thank the following members of the planning committee: Nicole Artz, David Bessman, Letisha Collins, Pat Corley, Delbert DeFlora, Ronlanda Foley, Melanie Gilmore, Elizabeth Gunier, Carlton Haywood, J. Hoxi Jones, Terri Knowles, Liza LeGrier, Alison Maynard-Thompson, Sola Odesina, Carolyn Rowley, Craigie Sanders, and Campsey Thomas.

References

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