Having a rheumatologic illness such as lupus, osteoarthritis, or rheumatoid arthritis can cause fatigue, pain, and loss of function. It can also be hard to predict how you will feel on any given day. This can cause major changes in your emotional, social, and physical well-being.
Social workers in healthcare are experts on the impact of illness on an individual and family. Their skills include the ability to assess how the patient,family,and support persons, are coping, help with problem solving,and help return patients to an adaptive level of functioning.1
Caring for the whole person is integral to the concept of patient centered care; this concept is the cornerstone of the social work role in the interdisciplinary team. The interdisciplinary team at HSS includes physicians,nurses,social workers,physical and occupational therapists and many more to help care for the patient’s needs.
A social worker focuses on understanding the personal impact of your illness, its treatment, and ways of most effectively coping, and can get to know you outside of the time constraints of the medical appointment.
This richer understanding takes into account the personal and social factors that can influence your health, such as health beliefs, financial resources, insurance status, and understanding the impact of your condition and its treatment. These factors can contribute to being able to follow a treatment plan, manage medication, and effectively cope.
Social workers help to cultivate trusted relationships with patients that can open the lines of communication. In this way,the social worker helps in developing a more comprehensive care plan which includes the patient’s needs and voice.
The medical part of the care of our rheumatic disease patients is often the easy part. What is difficult, and the reason we doctors stand in awe of our social work department, is the finding of access to medications, solving of social problems, the support systems, the immense paperwork, the outreach programs, and sometimes just being a friend to our patients, says Dr. Michael Lockshin, director of the HSS Barbara Volcker Center for Women and Rheumatic Disease and co-director of the Mary Kirkland Center for Lupus Research.
Communication is a vital component of patient-centered care. Social workers help enhance communication with your physician and the entire medical team.
- Social workers can help patients be true partners in their care by empowering them to have a dialogue with their physicians and other care providers. Patients can then work together with the team in the healing process.
- By providing education and support to you as a patient, as well as your loved ones, social workers encourage informed decision making in the face of multiple difficult choices and tasks.
I’ve found our social work staff to be incredibly experienced and resourceful, finding clever solutions to problems that I would never have thought of myself. Between time constraints placed on doctors and gaps in medical school teaching when it comes to some practical issues of taking care of the whole patient, our social workers have really provided an extra level of care and support that I am sometimes not capable of, notes Dr. Alana Levine, Rheumatologist and clinical associate at the Barbara Volcker Center for Women and Rheumatic Diseases at Hospital for Special Surgery.
Addressing the Emotional Components of Care
The emotional dimensions of a chronic illness can often get lost in the context of a medical treatment for an illness.2 For example, pain and fatigue, which is part of many rheumatologic conditions, can lead to frustration and a sense of helplessness, anger, fear and hopelessness. 3 The ups and downs of flares can make you feel like you’re on an emotional and physical roller-coaster. It can be a challenge to feel confident in managing your illness. Feelings of depression and anxiety are not uncommon.
It is important to have a partner on the team to assess mood changes on an ongoing basis. Even mild depression may reduce a person’s motivation to access medical care or to follow treatment plans.2 Social workers identify and address these issues and can also connect patients with community agencies or other members of the team to get appropriate help.
- Social workers use strategies to help you and your loved ones gain a sense of control over their changing life situation, using the relationships that they establish to help patients to regain a sense of hope.
- Social workers also work with you to make changes that will enhance coping throughout the lifetime of your illness.
- As you move through stages of living with and understanding your illness,a social worker can help to address emotional needs,providing support,assessing safety,and determining if the treatment plan is being affected by the emotional well-being of the patient.
“At critical times in a rheumatology patient’s life, the social worker becomes the most important part of the healthcare team because they are uniquely able to integrate medical, financial, emotional, and practical issues in a manner that can quickly and effectively facilitate a patient and [his or her] family’s ability to navigate through a crisis and an increasingly insensitive and complex healthcare system. At other times, they are as important a part of the care of patients as the physicians,” says Dr. Stephen Paget, physician-in-chief emeritus and rheumatology leadership chair at Hospital for Special Surgery.
The Anchor of Culture
A number of rheumatologic illnesses, such as lupus,more often affect women of color. Culture plays a major role in how we define, relate to,and treat illness. Culture can color a patient’s values about medicines and certain treatments. Yet,many patients find it difficult to share this essential information with the health care team.
- The social worker on the team can often help create a safe environment to discuss this important information and explore its impact on patient care and medical treatment.
- Understanding patients cultural values helps the team create a care plan,which includes western scientific treatment,while respecting the patient’s cultural norms.
Social workers are an integral part of the rheumatology interdisciplinary care team. Their focus on treating the person as a whole and their skill set helps to create a sacred space of trust which is at the heart of patient-centered care.
Jillian Rose is a social work manager at Hospital for Special Surgery. She is a member of the ARHP Practice Committee, the Hispanic/Latino Work Group for the National Institute of Arthritis and Musculoskeletal and Skin Diseases Multicultural Initiative Strategic Planning Committee, and Department of Health and Human Services Office of Minority Health’s Initiative for Eliminating Health Disparities in Lupus.
For more information, visit https://hss.edu/social-work-programs.asp.