By Natalie S. Robinson, MSW, LSW
 

	Introduction
	A Disabling Pain
	Sickle Cell Pain Management
	An Increased Tolerance for Narcotics and Necessary Coping Skills
	How Social Workers Can Help
	Conclusion

Introduction

Sickle-Shaped Red Blood Vessels

Image from the National Institutes of Health

Sickle Cell disease is a disease that primarily affects people of African-American decent. It is not limited to the African-American population. Sickle Cell disease is painful. The red blood cell that is normally shaped like a doughnut becomes hard, and shaped like a sickle (or a crescent) after it releases oxygen that it received from the lungs. Because of its shape, the blood cell can get stuck in the blood vessels and cause a tremendous amount of pain for the affected individual.

This is a disease that a person is born with, which means it is genetically handed down from the parents who either have the disease or carry the trait for the disease.

A Disabling Pain

The pain associated with sickle cell disease can be disabling. If sickle cell crisis happens in the bones and joints frequently, it can cause a tremendous amount of pain in that joint. Sometimes, the joint pain makes normal activities such as climbing stairs or walking practically impossible. Individuals can get frustrated with their lack of abilities and can become depressed and angry — or resilient.

Sickle Cell Pain Management

Sickle Cell disease is treated by narcotics, such as:

• Morphine
• Dilaudid
• Fentanyl
• Oxycodone
• Oxycontin

These drugs are used to help control the pain that the individual experiences.

As social workers, we encourage our clients and families to be aware of which drugs work best with their children, and, if their children experience any side effects to any of the medication that they are given. Sometimes when the individual comes into the emergency room with a sickle cell crisis (an episode of acute pain), and tells the staff which drugs work best and the dosage that is the most effective, she or he can be labeled as drug-seeking. Consequently, the medical staff may lose trust in the individual and family, and begins to become suspicious of the families’ motives for coming into the emergency room.

As a social worker in this health setting, it is prudent to still encourage and empower the individual and family to advocate for good pain medication by informing medical providers of the illness and the most effective treatment for such painful episodes. This self-advocacy includes speaking for a loved one who in unable to speak for themselves, such as when they are in too much pain, too young, or mentally compromised.

It is also just as important to educate the staff on just how important it is for the family and the individual with sickle cell to know what medications they are on, which medications work best for them, and that this is not drug-seeking behavior. A strategy for knowing effective medications and dosages is to keep the information on a list in a wallet and give a copy to a loved one.

An Increased Tolerance for Narcotics and Necessary Coping Skills

After an individual with sickle cell has been on narcotics for an extended period of time, their tolerance level or inability to receive effective pain release increases. Therefore, this increases the amount of medication that is needed to be successful in treating the pain.

How Social Workers Can Help

• Help the Individual Develop Coping Skills:  Social workers need to be aware that the individuals with sickle cell cannot fully rely on narcotics to relieve pain. Social workers can teach coping skills to affected individuals and families. Coping skills can include distraction with reading, music, drawing, hand-held games, or portable DVD players – anything that can hold the individual’s interest.
• Make Referrals:  Social workers can also make referrals for massages, biofeedback sessions, and whirlpool sessions to help alleviate the pain. Social workers can be a good support and resource for individuals and families, in finding the referrals that can help the family with coping techniques and encouragement to use them. Social workers can encourage individuals and their loved ones to discover activities of their own that can help with deal with with a sickle cell crisis or episode.
• Assess the Impact on the Family: Social workers assess individuals with sickle cell disease and families to see how they are coping with sickle cell disease. The disease may only physically affect one member of the family, but the entire family unit is affected coping with the illness. Social workers assess the families, and make appropriate referrals for support, information, and medical care when necessary. In a chronic illness such as sickle cell, it is common to see depression and anxiety affecting individuals and their families.
• Address a Variety of  Needs:  Social workers can also address other needs that arise in families affected by sickle cell. Sickle cell disease can impact individuals and families in the following ways:

1. Financial costs of medical care and medications
2. Missed time from work or school
3. Caregiver stress
4. Depression/anxiety
5. Substance use or abuse
6. Medication non-compliance (not taking medicine as instructed)
7. Missed income from not being able to work

Social workers are instrumental in assisting families with these basic survival needs, along with teaching and empowering the family to address these needs themselves. Because these issues are so prevalent when dealing with chronic illness.

Conclusion

Social workers who work with the sickle cell population have a challenging yet rewarding job. The pain of the disease is not just physical, but can be emotional and psychological too. Due to the complexities of the disease that can affect these individuals, social workers need to work efficiently and effectively with each facet of the individual’s life and empower the families to do the same.