The Shifting Dynamics of Social Support After a Cancer Diagnosis

By A.J. Cincotta-Eichenfield, LMSW, Oncology Social Worker, CancerCare

Social support systems can significantly mediate against distress for people with cancer and enhance quality of life.¹

Oncology nurses, along with social workers and other health care professionals, can work with patients and caregivers to highlight the strengths of their existing social connections, empower individuals to develop adaptive coping mechanisms, and search for additional support and resources outside of their networks or areas of expertise.

A “New Normal”

A cancer diagnosis can signal a shift from what a patient knows as “normal,” to a new reality—an unfamiliar network of doctors and health care professionals and an unforgiving schedule of appointments, scans, and treatments. Cancer can feel irreducible and all-encompassing—requiring the full attention, support, and mobilization of social networks surrounding the person who is diagnosed. A patient’s social support network provides a means of coping with the everyday challenges of illness and mediating against the logistical, emotional, and physical burdens associated with cancer.

An individual’s connections with friends and family members transform after diagnosis, and can often strengthen, emerging anew. Sometimes, connections prove less helpful than anticipated, and at times, dissipate entirely. People who have cancer may feel alienated from previous support systems whose members do not understand the cancer experience. They may feel isolated from individuals who flee from conversations and interactions due to the stigma of cancer and fear of adverse outcomes.²

With each new diagnosis, treatment protocol, and hospital visit come new issues and needs for support. Patients’ existing networks are not always prepared to offer emotional or logistical assistance at each stage. One’s needs for support may vary with the physical impact of illness (symptoms, treatment, and side-effects). Well-meaning friends and family should take into account the individual’s illness context, communicate openly, and work to provide instrumental or emotional support that appropriately matches the patient’s needs.³

As individuals navigate through the cancer journey, the restructuring of relationships can have implications for coping and self-management during diagnosis and treatment which may consequently change the ways that individuals access and participate in health-promoting activities. It may also have an effect on how patients will contextualize and integrate cancer into their lives and identities.⁴

The rearranging of support is a common outcome of diagnosis, whether due to misunderstandings about or fear of cancer, discomfort in starting conversations and maintaining communication, or the intense emotional nature of lending certain kinds of support. It can be difficult for people with cancer to find others who “get it” and can fit in to the supportive roles they are seeking.

Friends and family, though often well-intentioned, may say things that don’t reflect an understanding of the reality of an illness situation. They may be too apprehensive to cognitively or emotionally approach illness, or may perceive that they are “protecting” the person with cancer by not engaging in difficult conversations, all of which can magnify the physical and emotional losses for those experiencing illness directly.

What Kind of Help Do Patients Need?

As the need for social support after diagnosis is wholly individual and can manifest differently depending on a variety of illness factors, socioeconomic dimensions, cultural contexts, and an individual’s social and emotional strengths, it is useful for helping professionals to trace the different ways that people seek support and assess what resources may be most useful to them.

Social support can take many forms for people with cancer—a check-in call, an online fundraiser, a trip to treatment, delivery of groceries or meals, or a hospital visit. Though varied in nature, acts of social support can offset some of the secondary stress of planning and logistics, allowing individuals the energy to focus on treatment and coping. Online tools like My Cancer Circle (mycancercircle.net) can help caregivers more efficiently organize their communities of support, formally outlining roles and responsibilities for friends, and creating a space for open communication within a network.

Oncology nurses are well-positioned to provide support-strengthening strategies in ways that are realistic and informed by individual medical needs and the social context of the person with cancer.³ They can assist patients and caregivers in defining and refining what their needs are, which can create clarity for those around them who may be interested in helping. They can also connect patients with peer and professional support groups.

Peer support organizations like Imerman Angels, and organizations that provide a combination of professional and peer-based programs such as CancerCare and Cancer Support Community/Gilda’s Club, may prove useful in creating meaningful connections in the lives of patients and caregivers after diagnosis.

Professionally-led support groups, whether in-person, online, or via telephone, can help people with cancer find a space where their thoughts and feelings surrounding diagnosis are heard and validated.¹ Communities of support have become ever-more specific in the digital age—whether online or over the phone—and people with cancer don’t have to go far to find others with their diagnosis or people who “get it.”

Social support can enhance the quality of life of people with cancer by influencing mood, sense of self, and identity, and by alleviating some of the logistical burdens of the activities of daily living due to diagnosis and treatment.¹ Having others with whom to share their burden can foster patients’ engagement, positivity, and hope.

Oncology nurses’ intimate knowledge of their patients’ situations can enable them to take the first crucial step to getting patients help—recognizing what they need and matching the need to the appropriate resource.

References

• Applebaum AJ, Stein EM, Lord-Bessen J, Pessin H, Rosenfeld B, Breitbart W. Optimism, social support, and mental health outcomes in patients with advanced cancer. Psycho-Oncology. 2013;23(3):299-306. doi:10.1002/pon.3418.
• Clarke PG, Bolte S. Sense Making in Living With Cancer as a Chronic Illness. In G. Christ, C. Messner, & L. Behar (Eds.). Handbook of Oncology Social Work. 2015. New York: Oxford University Press.
• Merluzzi TV, Philip EJ, Yang M, Heitzmann CA. Matching of received social support with need for support in adjusting to cancer and cancer survivorship. Psycho-Oncology. 2015;25(6): 684-690. doi:10.1002/pon.3896.
• Henshall CL, Greenfield SM, Gale NK. Typologies for restructuring relationships in cancer survivorship. Cancer Nursing. 2018;41(6). doi:10.1097/ncc.0000000000000538.