Sickle Cell Disease - References

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Psychosocial Support

Sickle cell disease presents great emotional challenges for patients and their families. For the family, nothing is more heartbreaking than watching their child endure extreme pain and life-threatening medical conditions. The patient endures not only the pain itself but also the stress of not knowing when a sickle cell crisis will occur. They also have to struggle with lost time and social isolation at school and work, as well as fear of death.

Any chronic illness places stress on the patient and family, but sickle cell patients and caregivers often face particular obstacles in finding psychological support for the disease. Communities in which many sickle cell patients live may lack services that can meet their needs, and professionals who work in their medical facilities are often overworked. In a study comparing patients with different kinds of long-term illnesses, those with sickle cell disease gave the lowest scores to their doctors and other professional caregivers for compassion, and were least satisfied with their medical care.

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It is very important for patients and their caregivers to find emotional and psychological support. The following are some measures that may help in dealing with this disease:

• Stress Reduction. Stress reduction techniques and relaxation methods appear to be helpful. Breathing and mediation techniques may be very helpful.
• Cognitive-Behavioral Therapy. Studies suggest that cognitive behavioral therapies that teach coping skills can result in less negative thinking and possibly less pain. Coping skills can help the patient's ability to manage symptoms such as pain.
• Support Associations. Support groups and on-line support communities can offer valuable advice and advocacy for patients and their families.

Review Date: 01/13/2011
Reviewed By: Harvey Simon, MD, Editor-in-Chief, Associate Professor of Medicine, Harvard Medical School; Physician, Massachusetts General Hospital. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.

A.D.A.M., Inc. is accredited by URAC, also known as the American Accreditation HealthCare Commission (www.urac.org).