The State of the Science of Cancer Caregiving

Sharon Manne, PhD^✉; Cancer SIG

As the effectiveness of cancer treatments improves, the population of cancer survivors has grown exponentially. It is widely recognized that cancer diagnosis and treatment can have a detrimental psychosocial, medical, and financial impact on those diagnosed with this disease and that these adverse effects may persist and even worsen across the person’s lifespan. Over the past 30 years, our lens has broadened to consider the “hidden patients”– that is, the family and friends who provide the essential practical and emotional care to cancer survivors during their cancer journey.  Since studies have consistently shown a strong correspondence between psychological distress experienced by survivors and caregivers (e.g., Hodges et al., 2005; Li, Xu, & Zu, 2019), attention to enhancing caregivers’ well-being will likely impact cancer survivors’ well-being, as well.

Precise estimates of the number of caregivers are difficult to calculate because cancer registries and other national organizations do not collect such data. The National Alliance for Caregiving Report (2016) and the Behavioral Risk Factor Surveillance System Survey (2015) have estimated that there are between 1.1 and 2.8 million Americans providing care for an adult with cancer, with this number likely increasing in the future with the aging of the US population. Due to a lack of national data, characterizing the population is difficult.  The majority of caregivers in the US are female, report a high school level education or lower, and over half provide care to either a parent, parent in-law, or spouse (Kent & Odom, 2018).

The support caregivers provide is clearly essential, but the toll is significant and persistent. Family and friends providing more hours of care and care of a longer duration report more mental health issues, anxiety, and depression (Kent & Odom, 2018; Li et al., 2019).  While rates of clinically-significant depressive symptoms vary at the time of diagnosis and initial treatment, it is concerning that up to 40% report elevated depressive symptoms years later (Mitchell, et al., 2013; Shaffer et al. 2017). Adverse employment and financial impacts during the treatment (Longo et al., 2006) and end of life phases are prevalent, with caregivers missing work, taking unpaid leave, or changing careers to accommodate caregiving needs (Carey et al., 2012; Mosher et al., 2013).  Care provision to patients whose disease progresses or recurs results in persistent psychological and financial challenges for caregivers (Vivar et al., 2010). Caregivers are more vulnerable to chronic illness if the cancer patient dies than if the cancer patient is alive and in remission (Kim et al., 2017). However, even among those who provide care to a person living with cancer, these individuals are at risk for both chronic illnesses and depression if they are older, less educated, and provide care for a longer duration (Shaffer et al., 2017). In short, no matter what the patient’s disease trajectory, cancer caregiving has adverse effects on long-term and wide-ranging psychosocial, economic, and physical outcomes.

Given the immense scope of this problem, it is important that cancer care researchers, care providers, and our oncology care system actively seek to identify and address the needs of caregivers. What have we accomplished in meeting this challenge? Recent literature reviews of caregiver interventions illustrate we can be cautiously optimistic, at least in terms of the number of studies conducted: More than 50 randomized clinical trials were published between 2010 and 2016 (Ferrell et al., 2017), suggesting we are well on our way to developing evidence-based treatments. About half of the studies focus on couples, and most address the improvement of caregiving skills in managing patient symptoms such as pain and physical care and management of the caregiver’s own psychosocial needs (Ferrell et al., 2017). However, a recent Cochrane review (Treanor, Santin, Prue, Coleman, Cardwell, O’Halloran, & Donnelly, 2020) was much less positive in its conclusions about the state of the science. This review included 19 randomized and quasi-randomized controlled trials conducted in high income countries. Interventions included in the review focused on teaching caregivers or couples coping, problem-solving, and/or communication and did not include palliative care and pharmacological treatments. There was evidence of minimal benefit to caregiver quality of life immediately post-intervention, and these effects did not persist. There was little to no impact on caregiver psychosocial outcomes and evidence that there may be adverse effects. The review excluded a number of studies that were ongoing at the time of the review, thus limiting the conclusions. The authors concluded that the research was low quality and there was insufficient evidence to conclude what intervention focus (caregiver only versus dyad) and components (e.g., communication vs coping skills) were most effective. A broader range of outcomes such as relationship quality may provide more conclusive data on the impact of these interventions.

Given the diverse sources of psychosocial distress and what we know about caregiver populations who are particularly vulnerable – older caregivers, less educated caregivers, caregivers providing intensive care focusing on practical and emotional needs and providing care of a longer duration, caregivers who compromise their own employment and/or financial situations in order to provide care, and those with lower relationship quality before the caregiving begins  –  it will be key that interventions developed be tailored to the unique needs and concerns of the most vulnerable of cancer caregivers. A focus on our most vulnerable will prove to be particularly important given the aging of both our cancer population and the family and friends providing care for them. Studies have focused primarily on improving caregiver quality of life, psychological distress, relationship communication, and efficacy in providing care. Although these are important targets for intervention, addressing the financial hardship and physical tolls associated with cancer caregiving are also important goals. Critically, to ensure dissemination, any evidence-based interventions that are developed must be designed for delivery in community oncology care settings and available to informal caregivers who may not accompany their loved one to clinic and/or interact with oncology care providers. A “design for dissemination” approach that includes caregivers and patients in the treatment development phase may enhance impact. Scalable interventions may be offered online, particularly if in-person interventions may not be possible. Providing targeted interventions to caregivers may prevent declines in emotional  and physical functioning in this growing population.

 

References

Carey, M., Paul, C., Cameron, E., Lynagh, M., Hall, A., & Tzaelepis, F. (2012). Financial and social impact of supporting a haematological cancer survivor. European Journal of  Cancer Care, 21, 169-176.

Ferrell, B., & Wittenberg, E. (2017). A review of family caregiving intervention trials in oncology. CA: A cancer journal for clinicians, 67, 318-325.

Hodges, LJ., Humphris, GM, & Macfarlane G. (2005). A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Social Science and Medicine, 60:1–12.

Kent, E., & Odom, N (2019). Population based Profile of mental health and support service need among family caregivers of adults with cancer. Journal of Oncology Practice, 15, e122-e130.

Li, Q., Zu, Y., & Zhou, H. (2018). The impact of depression and quality of life in Chinese cancer patient family caregiver dyads, a cross-sectional study anxiety. Health and Quality of  Life Outcomes 16, 230. https://doi.org/10.1186/s12955-018-1051 .

Longo C., Fitch, M., Deber, R., & Williams, A. (2006). Financial and family burden associated with cancer treatment in Ontario. Canada Supportive Care in Cancer, 14, 1077–85. 

Mitchell, A., Ferguson, D. Gill, P., & Symonds, P. (2013).  Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls. A systematic review and meta-analysis. The Lancet Oncology, 14, 721-732.

Mosher, C. Champion, V., Azzoli, C., Hanna, N., Jalal, S., Fakiris, A., et al. (2013). Economic and social changes among distressed family caregivers of lung cancer patients. Supportive Care and Cancer, 21, 819-826.

National Alliance for Caregiving: Caregiving in the US. An intense, episodic. and challenging care experience. 2016. www.caregiving.org/wp-content/uploads/2016/06/cancercaregivingreport_final_june-17-2016.pdf.

Shafer, K.., Kim, Y., Carver, C., & Cannady, R. (2017). Effects of caregiving status and changes in depressive symptoms on the development of physical morbidity among long-term cancer caregivers. Health Psychology, 36, 770-779.

Treanor, C., Santin, O., Prue, G., Coleman, H. Cardwell, C, O’Halloran, P., & Donnelly, M. (2020). Psychosocial interventions for informal caregivers of people living with cancer. The Cochrane Collaboration.

Viviar, C., Whyte, D., & McQueen, A. Again: The impact of recurrence on survivors of cancer and family members. Journal of Clinical Nursing, 19, 2048-2056.