Caregiving responsibility and psychological distress among community-dwelling cancer survivors in the United States

Purpose: There are over 18 million cancer survivors in the U.S., with a projected increase of 24.4% over the next decade. Currently, little is known about the relationship between a cancer survivor's caregiving responsibility and their psychological distress. This study examines whether cancer survivors who assume the role of informal caregivers (surviving caregivers) experience greater psychological distress than cancer survivors without caregiving responsibilities.

Methods: Data were drawn from the National Cancer Institute's Health Information National Trends Survey (HINTS5, Cycles 1 through 4, 2017-2020). The analytical sample included 2,579 U.S. cancer survivors. Caregiving responsibility was self-reported, and psychological distress was assessed through the Patient Health Questionnaire-4 (PHQ-4). Accounting for the complex design features of HINTS and jackknife replicate weights, a multivariable multinomial logistic regression model was fit to compute adjusted odds ratios (aORs) and their associated 95% confidence intervals (CIs).

Results: Overall, 19.3% of cancer survivors had mild psychological distress, and 10.9% had moderate to severe psychological distress. Approximately 19.1% of the cancer survivors self-reported caregiving responsibilities. Compared to cancer survivors with no caregiving responsibilities, surviving caregivers had more than twofold greater odds of experiencing mild (aOR = 2.25; 95% CI: 1.17, 4.29) and moderate to severe (aOR = 2.18; 95% CI: 1.07, 4.46) psychological distress. Other factors associated with greater psychological distress among cancer survivors included female sex, lower perceived health status, and having one or more chronic diseases.

Conclusions: Our findings indicate that caregiving among cancer survivors has a substantial adverse impact on their mental and emotional well-being. Cancer surviving caregivers are a distinct subgroup that navigates both survivorship and caregiving burdens at the same time. There is a need to identify and develop tailored interventions, programs, and resources for this vulnerable group of cancer survivors.