NGO

Psychological challenges faced by sickle cell patients

Introduction

The month of May is Mental Health Awareness Month. Tumaini Sickle Cell Organization therefore undertook a research on Psychological Challenges faced by Sickle Cell Patients that looked into the effects of Sickle Cell Anaemia on mental health of warriors, factors influencing the mental health of SC patients and strategies of help Sickle Cell patients can apply to cope with their condition and improve their quality of life.

Sickle cell anemia is a genetic disorder that affects the shape and function of red blood cells. It causes them to become rigid and sickle-shaped, which can block blood vessels and reduce oxygen delivery to the organs and tissues. Sickle cell anemia can cause various complications, such as pain crises, infections, organ damage, and stroke. It can also affect the mental health of the patients, as they must cope with the physical, emotional, and social challenges of living with a chronic and unpredictable condition. In this essay, I will discuss the effects of sickle cell anemia on the mental health of sickle cell patients, and the factors that can influence their psychological well-being. I will also suggest some strategies to help them cope with their condition and improve their quality of life.

Effects of Sickle Cell Anemia on Mental Health

Sickle cell anemia can have a negative impact on the mental health of the patients, as they may experience various psychological problems, such as:

• Depression: Depression is a common mental disorder that affects the mood, thoughts, and behavior of a person. It can cause feelings of sadness, hopelessness, guilt, worthlessness, and loss of interest in activities. Depression can also affect physical health, as it can cause fatigue, insomnia, appetite changes, and pain. Sickle cell patients may develop depression due to chronic pain, frequent hospitalizations, social isolation, stigma, and uncertainty of their condition. Depression can also worsen the symptoms and complications of sickle cell anemia, as it can impair the immune system, increase inflammation, and reduce adherence to treatment. According to a study by Anie et al. (2012), about 25% of sickle cell patients suffer from depression, and they have a lower quality of life than those who are not depressed.
• Anxiety: Anxiety is another common mental disorder that affects the nervous system and causes feelings of fear, nervousness, worry, and panic. Anxiety can also cause physical symptoms, such as palpitations, sweating, trembling, shortness of breath, and chest pain. Sickle cell patients may experience anxiety due to the unpredictability of their condition, the fear of pain crises, the risk of complications, and the lack of control over their situation. Anxiety can also aggravate the symptoms and complications of sickle cell anemia, as it can increase the heart rate, blood pressure, and oxygen demand, and trigger the release of stress hormones. According to a study by Anie et al. (2010), about 28% of sickle cell patients suffer from anxiety, and they have a lower quality of life than those who are not anxious.
• Post-traumatic stress disorder (PTSD): PTSD is a mental disorder that occurs after a person experiences or witnesses a traumatic event, such as violence, abuse, accident, or natural disaster. It can cause intrusive memories, flashbacks, nightmares, avoidance, hyperarousal, and negative changes in mood and cognition. Sickle cell patients may develop PTSD due to repeated exposure to pain, medical procedures, and life-threatening situations. PTSD can also interfere with the symptoms and complications of sickle cell anemia, as it can impair memory, concentration, and decision-making, and increase the risk of substance abuse and suicidal behavior. According to a study by Levenson et al. (2008), about 31% of sickle cell patients suffer from PTSD, and they have a lower quality of life than those who do not have PTSD.

Factors Influencing the Mental Health of Sickle Cell Patients

The mental health of sickle cell patients can be influenced by several factors, such as:

• Genetic factors: Some studies have suggested that there may be a genetic predisposition to develop mental disorders among sickle cell patients, as they may inherit certain genes that affect the neurotransmitters, hormones, and immune system that are involved in the regulation of mood and stress. For example, a study by Citera et al. (2015) found that sickle cell patients who had a variant of the serotonin transporter gene had a higher risk of depression than those who did not have the variant.
• Biological factors: Some studies have suggested that there may be a biological link between sickle cell anemia and mental disorders, as the chronic hypoxia, inflammation, and oxidative stress caused by the sickle cells may affect the brain structure and function, and alter the levels of neurotransmitters, hormones, and cytokines that are involved in the regulation of mood and stress. For example, a study by Elfenbein et al. (2016) found that sickle cell patients who had lower levels of oxygen in their blood had a higher risk of depression than those who had normal levels of oxygen.
• Psychological factors: Some studies have suggested that there may be a psychological association between sickle cell anemia and mental disorders, as the cognitive, emotional, and behavioral responses of the patients to their condition may affect their mood and stress. For example, a study by Edwards et al. (2010) found that sickle cell patients who had lower levels of self-efficacy, optimism, and coping skills had a higher risk of depression and anxiety than those who had higher levels of these factors.
• Social factors: Some studies have suggested that there may be a social correlation between sickle cell anemia and mental disorders, as the interpersonal, familial, and cultural factors of the patients may affect their mood and stress. For example, a study by Hasan et al. (2003) found that sickle cell patients who had lower levels of social support, family cohesion, and ethnic identity had a higher risk of depression and anxiety than those who had higher levels of these factors.

Strategies to Help Sickle Cell Patients Cope with Their Condition and Improve Their Quality of Life

There are various strategies that can help sickle cell patients cope with their condition and improve their quality of life, such as:

• Seeking professional help: Sickle cell patients who suffer from mental disorders should seek professional help from a psychiatrist, psychologist, counselor, or social worker, who can provide them with appropriate diagnosis, treatment, and follow-up. The treatment may include medication, psychotherapy, or a combination of both, depending on the type and severity of the disorder. The treatment may also involve the use of complementary and alternative therapies, such as relaxation, meditation, yoga, acupuncture, or massage, which can help reduce stress and pain.
• Seeking peer support: Sickle cell patients who suffer from mental disorders should seek peer support from other sickle cell patients, who can provide them with emotional, informational, and practical support. Peer support may be obtained through online or offline platforms, such as forums, blogs, social media, groups, or organizations, where sickle cell patients can share their experiences, feelings, challenges, and coping strategies. Peer support may also involve the participation in educational, recreational, or advocacy activities, which can help increase the awareness, knowledge, and empowerment of sickle cell patients.
• Seeking family support: Sickle cell patients who suffer from mental disorders should seek family support from their parents, siblings, spouses, children, or other relatives, who can provide them with love, care, and assistance. The family support may involve the communication, education, and involvement of the family members in the management of the condition, such as understanding the symptoms, complications, and treatment of sickle cell anemia, and helping the patients with their medication, appointments, and daily activities. Family support may also involve the provision of emotional, financial, and spiritual support, which can help enhance the self-esteem, confidence, and faith of sickle cell patients.
• Seeking community support: Sickle cell patients who suffer from mental disorders should seek community support from their friends, neighbors, teachers, employers, or other people, who can provide them with respect, acceptance, and inclusion. Community support may involve the promotion of a positive and supportive environment, where sickle cell patients can feel valued, appreciated, and respected, and where they can access the resources, services, and opportunities that they need. The community support may also involve the prevention of a negative and discriminatory environment, where sickle cell patients can face stigma, prejudice, and ignorance, and where they can encounter the barriers, challenges, and difficulties that they face.

Conclusion

Sickle cell anemia is a genetic disorder that affects the shape and function of red blood cells, and causes various complications, such as pain crises, infections, organ damage, and stroke. It can also affect the mental health of the patients, as they may experience various psychological problems, such as depression, anxiety, and PTSD. The mental health of sickle cell patients can be influenced by a range of factors, such as genetic, biological, psychological, and social factors. There are various strategies that can help sickle cell patients cope with their condition and improve their quality of life, such as seeking professional, peer, family, and community support. Sickle cell anemia is a serious and chronic condition, but it does not have to define the lives of the patients. With proper care and support, sickle cell patients can overcome their challenges and achieve their goals.

References

• Anie, K. A., Egunjobi, F. E., & Akinyanju, O. O. (2010). Psychosocial impact of sickle cell disorder: perspectives from a Nigerian setting. Globalization and health, 6, 2.
• Anie, K. A., Grocott, H., White, L., Dzingina, M., Rogers, G., & Cho, G. (2012). Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease. BMJ open, 2(4), e001274.
• Citera, D., Freeman, L., Uy, E., Osunkwo, I., & DeBaun, M. R. (2015). The relationship between pain and chronic stress in adults with sickle cell disease and an examination of the moderating effects of the serotonin transporter gene. Annals of behavioral medicine, 49(6), 804-812.
• Edwards, C. L., Green, M., Wellington, C. C., Muhammad, M., Wood, M., Feliu, M., … & Abrams, M. (2010). Depression, suicidal ideation, and attempts in black patients with sickle cell disease. Journal of the National Medical Association, 102(11), 1086.
• Elfenbein, D. H., Hardy, K. K., Zempsky, W. T., & Katz, E. R. (2016). Sickle cell disease and associated cognitive, emotional, and quality-of-life concerns. Clinical Practice in Pediatric Psychology, 4(4), 413.
• Hasan, S. P., Hashmi, S., Alhassen, M., Lawson, W., & Castro, O. (2003). Depression in sickle cell disease. Journal of the National Medical Association, 95(7), 533.
• Levenson, J. L., McClish, D. K., Dahman, B. A., Bovbjerg, V. E., De A. Citero, V., Penberthy, L. T., … & Aisiku, I. P. (2008). Depression and anxiety in adults with sickle cell disease: the PiSCES project. Psychosomatic medicine, 70(2), 192-196.