Social Work

Part 1:

Chronic Disease Self-Management Curriculum for Sickle Cell Anemia

Target Population: Sickle Cell Anemia

To determine a curriculum for chronic disease self-management, the target population for this case is sickle cell anemia. The disease is a blood disorder attributed to genetic complications. In this case, children are born with the sickness when their parents pass on sickle cell traits to them. Sickle cell anemia is one of the leading causes of death through genetic complications, in which most cases of the disease lack a cure. However, measures and treatments exist to lower the chances of further complications and decrease pain, such as blood transfusion, bone marrow transplant procedures, and medications. In this case, sickle cell anemia affects the blood of its patient by disfiguring their red-blood cells, which causes a shorter life span for their red blood cells from over 120 days to over just ten days. This shortage of red blood cells' life span further causes a decrease in the amount of oxygen delivered through the body due to the shortage in red blood cells. Another major cause of oxygen shortage is caused by a blockage of small blood vessels due to sickle cell misshape, especially for blood vessels in the neck and joints. Therefore, some of the symptoms experienced by patients facing the disease include pains in the joints, sudden pains in the chest, regular fatigue, restlessness, and dizziness which are all mainly attributed to the lack of sufficient oxygen. Also, sickle cell patients are often vulnerable to other diseases and infections due to damage sustained to the spleen or other major organs, especially those which play critical roles in the body's immunity system. Sickle cell anemia is linked to a wide range of complications and easy infections, which enforces the patients and their loved ones to live carefully considering the environment around the patient, with factors such as temperature, hygiene, and others being of great concern. Common diseases such as cold and flu can be deadly to patients. Thus, those living with sickle cell anemia must live under strict health guidelines and habits. 

Sickle cell anemia is highly prevalent in some ethnicities compared to others, despite a total population. For example, sickle cell anemia in the United States is more prevalent for African Americans, especially those from low economic backgrounds and Hispanic ethnicities ("Sickle cell disease," 2022). Some of the statistics show the presence of sickle cell disease for one birth in 365 African Americans and one birth in over 16,300 Hispanics in the United States. More so, one birth in 13 African American births is linked to sickle cell disease through the presence of sickle cell trait in their genes. Despite the lack of a clear and defined sickle cell population, an estimated 100,000 Americans are affected by the disease ("Sickle cell disease," 2022). Despite the low incidences of the disease, sickle cell anemia is highly attributed to more disadvantaged ethnicities that social workers must confront. 

Literature Review

Various literature reviews have been done to describe the different experiences that sickle cell patients face and the impact of the disease on their quality of life. In addition, some of the literature describes the effect of the disease on the social and psychological well-being of adolescents and adults. Clayton-Jones et al. (2021) describe sickle cell disease's social and psychological effects and its necessary health care management for young adults. In this case, the study aimed to understand the rise in mortality rates for young adults living with sickle cell, despite the development of health management for the disease and the steady decrease of other populations' mortality rates over the last two decades. More so, young adults' mortality rate is also dependent on their social and psychological well-being. Thus, the qualitative study looks to answer this question through 13 different and descriptive interviews with young adults of an average age of 21. The study results show that the health care management transition for young adults is heavily affected by the social support they receive or face challenges in and their psychological well-being (Clayton-Jones et al., 2021). Challenges that highly influence this occurrence include stigmatization, isolation, and spiritual distress. Thus, the study encourages a need for unique and specific intervention strategies for different cultural-based cases of the disease for young adults. 

Additionally, another study determines the effect of the disease on school children's quality of life. In this case, the study describes social, psychological, and academic welfare changes through a cross-sectional and observational research (Salih, 2019). The study is carried out for two weeks, including over 107 participants between the ages of 7 and 15. The results show some of the challenges that the students faced, such as high school absenteeism due to sickle cell challenges such as pain episodes or chronic pain. Other challenges include shame and embarrassment due to bed-wetting, jaundice, and lack of contribution to sports activities (Salih, 2019). These challenges lead to stigmatization, both internally and externally. Other results show high levels of depression in the patients. Therefore, studies have shown the adverse effects of sickle cell diseases, which nurses and social workers must combat. 

More studies describe chronic disease self-management interventions such as psychoeducational curriculums. For example, Crosby et al. (2013) give details on the effect and impact of chronic disease self-management programs such as the Stanford program for those with sickle cell disease. More so, the study gives the evaluation through data recorded for six months based on two interventions for two different groups, both for teenagers from the age of 16 and young adults to the age of 24. The study completed at least four of the six-week program for 18 participants, who were also able to complete the follow-up after the program for six months. The major elements being reviewed in the study include the quality of life and self-efficacy. The results showed more impact from curriculum sessions that included physical activity, exercise, emotion management, and cooperation with nurses and health care workers (Crosby et al., 2013). More so, the patients' quality of life and self-efficacy improved and showed patients gained more interest in learning and developing self-efficacy habits, thus increasing overall satisfaction. Therefore, the study shows the feasibility and potential of the Stanford University self-management program's use for patients with sickle cell anemia. 

Additionally, another study focuses on the challenges faced by adolescents and young adults more prone to functional body impairment and low quality of life, examining the changes and effects of using the Stanford University self-management program. Crosby et al. (2017) illustrate the effects of the self-management curriculum program by measuring it using improvement in self-efficacy as the study's primary outcome. The study analyses showed high satisfaction levels for the 22 participants of the program, despite only having 64% of the participants complete it. More so, all the participants, in this case, were of African American ethnicity. However, a study gap exists in determining the health effects of the Stanford University self-management program. Therefore, the research shows the need for more Stanford-based self-management programs for sickle cell disease, showing promising results on its effect on the patients. 

Desired Outcomes and Outcome Measurements

Following the literature review and disease prevalence statistics, the curriculum based on the Stanford University Chronic Disease Self-Management (CDSM) framework requires goals and measurable outcomes that will determine the success and feasibility of the intervention program (Stanford University, 2020). In this case, the level of self-efficacy must take more priority to ensure self-management for the patients' health. Patient self-efficacy will be determined through different scales such as medication self-management, physical activity, exercise self-management, and cooperation with health care personnel. Also, another desirable outcome includes the increase in quality of life for three major dimensions, including social, psychological, and spiritual well-being. The change measurements for this set of outcomes will be determined through follow-up descriptive interviews with the patients to determine the level of their welfare in the three dimensions. Finally, the last desirable outcome includes increased health stability and improvement. The measurement scale used in this case is considered by regular clinic visits following the program. Thus, this measurement scale will determine the variance of health issues, the number of emergency visits, and health worker comments. 

Psychoeducational Curriculum

Based on the Stanford University Chronic Disease Self-Management framework, a community-based sickle cell anemia and sickle cell disease psychoeducational curriculum is created as an intervention for patients with the disease. Similar to the CDSM, the program will run for six weeks, each week having a single two and a half hours session (Stanford University, 2020). First, the sessions must be done in a community setting to have those suffering from the disease share and find exposure from others who live in the same community setting and come from the same culture. The use of community settings heavily influences the social well-being of each patient. More so, adolescents and young adults will be of more priority for the sessions, considering that they are more at risk of complications and functional impairment. Also, African American-based communities should be more prioritized based on the high prevalence rate of the ethnic community and the high disparity in health status that calls for more accountability and cultural humility compared to cultural competence (Fisher-Borne, Cain & Martin, 2014). In addition, the program will seek to have as many participants as possible in a given community, only with the limitation of learning materials such as exercise instruments. Finally, similar to the CDSM, at least two group leaders and program facilitators will be needed for the success of the curriculum, one being a social worker or health care professional and the other being a trained non-professional with the same disease. Setting a leader facing sickle-cell disease helps in easily reaching out to the patients. Therefore, the curriculum will mainly occur in African American community settings, with six sessions for six weeks. 

Further structure to the curriculum is needed, especially in determining the main topics and subjects that should be taught. In this case, since self-efficacy is the top priority, the major topics will be geared to fulfill this priority. The first week should be geared toward introducing self-management and the importance of self-efficacy. This week is necessary to create a readiness for change and increase knowledge of all sickle cell patients' challenges and the strategies that should be implemented to resolve these problems (Crosby et al., 2020). Therefore, the first week should cover plan development and mind management. The second week should build on the first, in managing emotions and wrong attitudes toward self-efficacy or sickle cell disease. Also, the need for spiritual, psychological, and social well-being should be addressed during this session. The third week should be geared toward developing and practically learning strategies to combat the disease, starting with exercises, fatigue, and pain management. The use of distraction methods, progressive muscle relaxation, and other such strategies are handled this week (Crosby et al., 2020). Thus, the third week should mark the start of self-efficacy skills development.  

The fourth week should be geared to increase self-management strategy profiles. Strategies such as healthy eating, hydration, resting, and hygiene maintenance are handled. Also, the session should tackle communication strategies, including keeping track of health symptoms by using objects such as pain diaries to record the pain episodes (Crosby et al., 2020). The fifth week should focus on medication and treatment methodologies. In this case, medication is taught according to its use in different symptoms and symptom management strategies (Crosby et al., 2017). Finally, the sixth day should focus on creating better relationships with health care workers and ensuring cooperation with them. Also, the final week should be used to draw strategies and plans for the future and decision-making on living a healthy lifestyle (Crosby et al., 2017). Additionally, the curriculum should ensure maximum flexibility and adaptation to patients and individuals of different backgrounds and those facing different challenges, such as stigmatization in the family setting, bullying in schools, and any other specific challenges. Therefore, following the curriculum, the targeted goals of increased self-efficacy, quality of life, and health should be met. 

References

Clayton-Jones, D., Matthie, N., Treadwell, M., Field, J. J., Mager, A., Sawdy, R., ... & Haglund, K. (2021). Social and psychological factors associated with health care transition for young adults living with sickle cell disease. Journal of Transcultural Nursing, 32(1), 21-29. https://doi.org/10.1177/1043659619896837

Crosby, L. E., Joffe, N., Kalinyak, K., Bruck, A., & Joiner, C. H. (2013). Six-month data from a pilot self-management intervention for adolescents with sickle cell disease. Blood, 122(21), 1675. http://doi.org/10.1182/blood.V122.21.1675.1675

Crosby, L. E., Hood, A., Kidwell, K., Nwankwo, C., Peugh, J., Strong, H., ... & Britto, M. T. (2020). Improving self‐management in adolescents with sickle cell disease. Pediatric blood & cancer, 67(10), e28492. doi: 10.1002/pbc.28492

Crosby, L. E., Joffe, N. E., Peugh, J., Ware, R. E., & Britto, M. T. (2017). Pilot of the chronic disease self-management program for adolescents and young adults with sickle cell disease. Journal of Adolescent Health, 60(1), 120-123. doi:10.1016/j.jadohealth.2016.08.022

Fisher-Borne, M., Cain, J., M., & Martin, S. L. (2014). From mastery to accountability: cultural humility as an alternative to cultural competence. The International Journal of Social Work Education, 34(2), 165-181.

Salih, K. M. (2019). The impact of sickle cell anemia on the quality of life of sicklers at school age. Journal of Family Medicine and Primary Care, 8(2), 468. https://doi.org/10.4103%2Fjfmpc.jfmpc_444_18

Stanford University. (2020). Self-Management Education: The Chronic Disease Self-Management Program | Healthy People 2020. Healthypeople.gov. https://www.healthypeople.gov/2020/tools-resources/evidence-based-resource/self-management-education-chronic-disease-self.

Sickle cell disease: Data and statistics. cdc.gov. (2022). https://www.cdc.gov/ncbddd/sicklecell/data.html