Chronic rheumatologic diseases such as lupus and rheumatoid arthritis are characterized by extreme fatigue, pain, and unpredictability, often causing major disruptions in emotional, social, and physical well-being. Social workers in healthcare are experts on the impact of a health crisis on individual and family functioning. Their skills include the ability to assess disruption, mobilize problem solving, and help return the patient to an adaptive level of functioning.1 Caring for the whole person is integral to the concept of patient centered care; these concepts are the cornerstone of the social work role on the interdisciplinary team.
Patients are often challenged by the complexity of chronic illnesses. They can find themselves paralyzed by unpredictability, frustrated by symptoms, and overwhelmed by the many dimensions of management. The disruption and fragmentation that a chronic illness brings can touch every aspect of their life. Patients may be unprepared to cope with the intrusion and feelings of loss that a chronic illness can engender. Social workers work in the emotionally turbulent space in the lives of patients and their families to help make sense of this, using relationship building as the fundamental medium for intervention.2 They expand upon the symptoms of a disease model to identify and address emotional, social, economic, cultural, and spiritual issues, as well as sources of patient and family resilience.1
Relationships are the invaluable currency of optimizing patient care and helping patients, faced with a shattered reality, to visualize what is possible. The social worker, based on a skill set of “being where the patient is,” is often the team member the patient feels can be trusted with sensitive personal information. Patients turn to the social worker to seek out guidance and share vulnerable moments without the fear of being judged. This helps to engage patients in their own care, motivating them to become active partners in the process as they seek to enhance their quality of life. Monica Richey, MSN, ANP-BC/GNP, Lupus Center nurse coordinator at the Hospital for Special Surgery in New York City, summarizes the benefits to both nurses and patients. “The rewarding part of working with social workers is not just how they uncomplicate my life as a nurse,” she says, “but how they make a friend out of every patient.”
In the current healthcare environment, medical providers have limited time with patients, making it difficult to build and nurture such relationships. Time constraints are a major barrier to patient care, resulting in an increasing need for care coordination for patients with chronic illnesses. Coordination of care for patients takes time, time that is typically not reimbursed.3 Social workers spend that time assessing the patient’s biopsychosocial condition, getting to know him or her outside of the constraints of the medical appointment. These interactions build trusted relationships between the patient and the social worker, allowing for enhanced care coordination with the team and targeted interventions to address the patient’s needs.
“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 Michael D. Lockshin, MD, director of the Barbara Volcker Center for Women and Rheumatic Disease and co-director of the Mary Kirkland Center for Lupus Research, both at the Hospital for Special Surgery.
Communication is a vital component of patient-centered care. Social workers help optimize physician–patient communication, and communication with the entire medical team; in turn, this can minimize patient and family concerns. They are the lynchpin between family, healthcare systems, and community resources, helping families navigate an increasingly overwhelming and depersonalized system.1 Social workers can help patients be true partners in their care by empowering them to engage in active dialogue with their physicians and other care providers. Patients can then collaborate with the team in the healing process. By providing education and support to patients, social workers encourage informed decision making in the face of unavoidable choices and tasks.
It is well documented that patients with chronic disorders are more likely to be nonadherent to treatment than those with other diseases. Evidence suggests that nonadherence contributes to poor long-term outcomes, as well as increased utilization cost.4,5 Social workers assess the social determinants of health, such as financial resources, insurance status, health beliefs, and health literacy issues that can contribute to nonadherence, medication mismanagement, and coping with illness. These challenges can lead to expensive emergency room visits, increase disease damage, and illness complications.3
The literature also suggests that better communication between the healthcare provider and the patient is key to improve adherence.6 Cultivating trusted relationships with patients can open the lines of communication, allowing the social worker to expand the care plan by activating relevant community resources that are readily accessible to the patient. This contributes to a more comprehensive and continuous team to engage and address patient and family needs.7 If basic needs are not met, this can undermine the care plan and leave patients feeling helpless. To uncover these barriers to care, communication with patients needs to be optimal.
“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 Alana B. Levine, MD, assistant attending physician and clinical associate at the Barbara Volcker Center for Women and Rheumatic Diseases at the Hospital for Special Surgery.
Addressing the Emotional Components of Care
The emotional dimensions of a chronic illness are often overlooked in the context of a medically centered care plan.8 For example, fatigue, a feature of many rheumatologic illnesses, can lead to frustration and a sense of helplessness, anger, fear, hopelessness, and defeat.9 This can often lead to low self-efficacy, compromising a patient’s competence to manage their illness. Medications that treat the illness can affect mood, as well as overall disease burden.8 It’s important that a patient’s risk factors for mental illness, such as depression, be assessed on a continuous basis. Even mild depression may reduce a person’s motivation to access medical care or to follow treatment plans.8 Through comprehensive assessments, a social worker identifies and addresses these issues to make appropriate referrals to community agencies or other members of the team, ensuring that these confounding concerns don’t jeopardize the success of the treatment plan or affect the patient’s medical outcome.
Frequently, patients feel like they’re on a perpetual illness roller coaster. They can feel emotionally vulnerable, especially when their chronic illness is characterized by periods of flares and remission, resulting in heightened stress. Coping with the uncertainty of the future, disability, financial, and relationship challenges can compromise a patients’ physical, emotional, and spiritual well-being.8 Social workers use strategies to help patients and their families 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 help patients make behavioral changes that will sustain them throughout the lifetime of their illness.
Patients with chronic illnesses often report a sense of grief and loss, thus having to define a new identity for themselves after being diagnosed or experiencing profound life changes due to their illness. As patients move through stages of grief and loss, a social worker can help to facilitate their emotional needs, providing support, assessing safety, and determining if the treatment plan is being affected by the emotional well-being of the patient. In addition, the social worker can also act as a support to colleagues on the interdisciplinary team, providing a place to hold feelings, express some of the challenges that are inherent in working with a chronically ill population, and problem solve.
“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 Stephen A. Paget, MD, physician-in-chief emeritus and rheumatology leadership chair at the Hospital for Special Surgery.
The Anchor of Culture
Several rheumatic illnesses, such as lupus, disproportionately 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 treatment modalities. The social worker on the team can often unearth this important information and explore its impacts on patient care and disease management. Often, the social work serves as the cross-cultural facilitator between team members and the patient, providing a cultural context that is extremely valuable and can affect care tremendously or derail the care plan altogether. Knowing patients’ cultural values helps the team work with them from a place of dignity and respect, acknowledging their cultural norms while integrating western scientific treatment modalities, co-creating a more realistic care plan.
Social workers are an integral part of the rheumatology interdisciplinary care team. Their skill set lends itself to fostering invaluable trusted relationships with both patients and the care team, which truly fuels patient-centered care. These enduring relationships create a sacred space of trust that serves as a portal for activating patient empowerment, building resilience, optimizing communication, and cultivating self-determination, which powers patient engagement and ultimately optimizes the best patient outcome.
Jillian Rose is a social work manager at the 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.
- Matorin S. Recharging our clinical batteries: Social work practice in health care. In: Donnelly J, ed. Society Page: The Newsletter of the Society for Social Work Leadership in Health Care, Metropolitan New York Chapter, Inc. 2010.
- Donnelly JP. A frame for defining social work in a hospital setting. Soc Work Health Care. 1992;18:107-119.
- Christ G, Diwan S. The role of social work in managing chronic illness care. September 11, 2009. www.cswe.org/CentersInitiatives/Curriculum Resources/MAC/Reviews/Health/22419/22454.aspx. Accessed November 15, 2013.
- de Achaval S, Suarez-Almazor M. Improving treatment adherence in patients with rheumatologic disease. J Musculoskelet Med. 2010;27:388-394.
- Rapoff MA, Bartlett SJ. Adherence in children and adults. In: Maricic MJ, Iverson MD, Ruffing V, eds. Clinical Care in the Rheumatic Diseases. 3rd ed. Atlanta, GA: American College of Rheumatology; 2006:279-284.
- Koneru S, Kocharla L, Higgins GC, et al. Adherence to medications in systemic lupus erythematosus. J Clin Rheumatol. 2008;14:195-201.
- OBrian-Suric N. Social workers and their integral role in interdisciplinary team care. March 28, 2013. www.jhartfound.org/blog/social-work ers-and-their-integral-role-in-interdisciplinary-team-care. Accessed November 15, 2013.
- Turner J, Kelly B. Emotional dimensions of chronic disease. West J Med. 2000;172:124-128.
- Jump LR, Robinson EM, Armstorn EA, Barnes VE, Kilbourn MK, Richards BH. Fatigue in systemic lupus erythematosus: Contributions of disease activity, pain, depression, and perceived social support. J Rheumatol. 2005:32;1699-1705.