When Liz Morasso, LCSW, facilitates a Families Living with Rheumatic Diseases support group at Children’s Hospital Los Angeles, she empathizes with the struggles and challenges of her young patients. Ms. Morasso was only 16 years old when she was diagnosed with both systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA). She knows all too well what it’s like to live with a chronic health condition.
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Explore This IssueJuly 2019
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Social workers, such as Ms. Morasso, are an integral part of rheumatology care teams. While physicians treat a patient’s medical needs, social workers look beyond the diagnosis to help patients master coping skills, identify financial resources, address transportation or family issues, and identify support systems.
A 2018 study confirms patients with inflammatory arthritis and osteoarthritis want health professionals to take a holistic approach to managing their disease. Patients reported wanting care teams who understand more than just the physical effects of chronic disease, but also have an understanding of how that disease affects their lives, their families, their social circle and their ability to participate in activities.1
Ms. Morasso says social workers can help optimize the patient–physician relationship by addressing specific issues, such as fatigue, uncertainty and disability, as well as by offering emotional support and referrals to community resources.
The Rheumatologist recently spoke with rheumatology social workers from across the country to learn how rheumatologists can better partner with social workers as part of an interdisciplinary team to ensure better patient outcomes.
Address a Patient’s Underlying Concerns
After being diagnosed with a chronic condition, such as SLE or juvenile RA, Ms. Morasso says many of her pediatric patients have questions about how a chronic health condition will affect their ability to lead healthy, happy, active lives.
“We have a lot of conversations in our support group about how to navigate school and be your own advocate,” Ms. Morasso says. “Sometimes, young patients want to know the best way to explain their condition to friends or what sports they can participate in that will be safe for their joints.”
Often, Ms. Morasso refers kids and teens from the support group to activities, such as camps offered through the Arthritis Foundation.
“I remember my own rheumatologist telling me that, although doctors have the facts, the people I would meet through support groups and camp would provide me with the next steps in my journey,” Ms. Morasso says. “And she was right. Having a rheumatic disease as a child or teen can be incredibly isolating, so the experience of being around others who understand what you’re going through is priceless.”
Provide Ongoing Support to Patients
Adena Batterman, MSW, LCSW, senior manager of inflammatory arthritis support and education programs at the Hospital for Special Surgery, New York, says social workers are trained to provide psychosocial assessments, which look at the patient as a whole and in the context of the person’s life experience.
“This approach helps us to understand the patient’s needs and strengths, to support them in managing and coping with their illness,” Ms. Batterman says. “Many patients may benefit from a support group or short-term counseling with a social worker or other mental health provider.”
At the hospital, Ms. Batterman and a rheumatology nurse manager lead a free monthly support group for RA patients. Ms. Batterman says professionally led support groups provide a safe forum in which people with RA can share their experiences, challenges and concerns, and receive support from their peers.
“Many of these discussions involve real concerns and anxiety about initiating treatment,” Ms. Batterman says. “Participants get accurate, current information that helps to demystify their often complex illness and gives them the opportunity to process these concerns, supported by members of the group and with the guidance of the clinical social worker and the nurse.”
Ms. Batterman says this type of support serves an important role in patient care. Often rheumatologists have a limited amount of time to spend with patients to explore these issues at length, and patients may be reticent to bring them up.
“Our meetings feature a lecture by a healthcare professional on topics of interest to RA patients, followed by a support group aimed at enhancing emotional coping with the emotional effects of the illness and disease management strategies,” Ms. Batterman says. “The feedback we’ve received from patients in formal group evaluations is that, as a result of the group, they feel they can make informed decisions about their RA and are more prepared to discuss their RA treatment with their doctors.”
Ms. Batterman says support group topics include managing fatigue and pain, fears about medications and their potential side effects, coping with flares and sharing experiences with others who know what it’s like to live with a chronic illness.
According to Ms. Batterman, group participants also report in written evaluations that talking with other RA patients about their condition, and sharing information and feelings in the group, helped them feel more hopeful about their condition and cope better.
Why Patients Are Non-Compliant
Laura Friedhoff, MSW, LISW, a social worker at Cincinnati Children’s Hospital, says social workers can assist doctors in determining why patients may not be taking their medications as prescribed. Non-adherence has been shown to lead to poor outcomes.
“We’re able to dig a little deeper into adherence issues,” Ms. Friedhoff says. “We may learn that a child’s father lost his job and they don’t have insurance to pay for the meds, or that a young patient may be terrified of needles or doesn’t like swallowing pills.”
After issues have been identified, Ms. Friedhoff says social workers can connect families to the appropriate resources, whether that’s securing Medicaid to cover costs or referring them to a clinical psychologist if a patient has fears about their condition.
How to Cope with Psychosocial Factors
Social workers also play a valuable role in helping patients come to terms with the anxiety and depression that often accompanies a chronic rheumatic condition.
Gregory Taylor, MSW, RCSW, of the Young Adults with Rheumatic Disease Clinic for the Mary Pack Arthritis Program, Vancouver Coastal Health, British Columbia, Canada, works with patients who are transitioning to adult care.
“We often see patients who are emotionally adjusting to having a chronic illness,” Mr. Taylor says. “Their perceptions may generate low self-esteem or depression that, in turn, affect their ability to keep medical appointments or adhere to medication.”
Mr. Taylor says these are two examples of basic arthritis self-management behaviors that require skill development. Nearly all outcomes are mediated through the patient’s behavior—that is, what the patient does to cope better.
Because patients with rheumatic disease aren’t routinely screened for depression, Mr. Taylor says it’s important for rheumatology patients to have their motivation, skills and confidence in managing their health condition regularly assessed for progress by social workers.
“We must realize that a rheumatology visit involves a minuscule amount of time in a patient’s life,” Mr. Taylor says. “At our clinic, young adult patients are assessed every three to four months, because it takes time to teach a patient the skills to self-identify problems of living with a chronic illness and how to use a process to solve these problems.”
Mr. Taylor says patients are also referred to a social worker if a doctor or clinic nurse senses the patient has anxiety, psychosocial issues or even a loss of purpose.
“By having the time to meet with the patient regularly and develop trusted relationships, we are in a good position to assist a patient in taking greater responsibility for their health by learning self-management support strategies to improve quality of life,” he says.
Partner with a Social Worker in the Community
If rheumatologists don’t have access to a social worker within their practice, Ms. Batterman says there are community resources for doctors.
“Community agencies, including the Visiting Nurses, have social workers on staff who see patients in their homes and provide support and resources,” says Ms. Batterman.
Additionally, the Arthritis Foundation recently launched a 24-hour helpline. Staffed by social workers, the hotline provides a forum for rheumatology patients who have questions and are seeking resources on such topics as depression, financial assistance, insurance questions, disability, legal questions and more. The Arthritis Foundation also offers Live Yes! connect groups for rheumatology patients at locations throughout the country.
Meet Families Where They Are
Having a chronic illness can be tough on both patients and their families, Ms. Friedhoff says.
“Social workers can tailor a treatment plan to each individual patient and family based on their own unique needs,” she says. “I’m careful not to overstep the limits of my knowledge and to call upon other members of our multidisciplinary team if a patient needs care that is beyond my scope of practice.”
By working closely with dietitians, psychiatrists, nurses, doctors and other healthcare professionals, Ms. Friedhoff says social workers can serve as a bridge between patients and their rheumatologists.
“Having a rheumatic disease can [affect] so many areas of a patient’s life,” Ms. Friedhoff says. “Often, we’re called upon by families to help schools understand what it means to have students with a rheumatic disease.”
This may mean ensuring a student has the accommodations they need or explaining that a student who is taking a biologic may rack up more sick days than the average student.
In pediatric rheumatology, Ms. Friedhoff says she often has conversations about a child’s capabilities and growing independence. Many families question whether their child can participate in gym class and other activities or if they will be able to someday go to college and manage their disease while living away from home.
“We’re able to sit down with a family for an hour and have a discussion about any concerns or questions they may have or help them to navigate the healthcare system,” Ms. Friedhoff says.
Linda Childers is a health writer located in the San Francisco Bay Area.
- Erwin J, Edwards K, Woolf A, et al. Better arthritis care: Patients’ expectations and priorities, the competencies that community-based health professionals need to improve their care of people with arthritis? Musculoskeletal Care. 2018 Mar;16(1):60–66.