Stress, Employment Changes, and Psychological Distress Among Caregivers of Patients With Head and Neck Cancer.

Abstract

Importance: Patients undergoing external beam radiation therapy (EBRT) for head and neck cancer (HNC) often experience adverse effects that require substantial caregiving. The burdens of caregiving can impact caregiver employment and mental health over time, yet this topic remains underexplored.

Objective: To examine the associations between caregiving for patients with HNC who undergo EBRT and caregiver stress, employment status, and psychological distress.

Design, setting, and participants: This was a secondary analysis of data from a longitudinal survey study that surveyed caregivers at baseline (ie, at initiation of EBRT) and at 4-month and 12-month follow-ups. The study was conducted at 2 comprehensive cancer centers in Houston, Texas, and New York, New York, and included patients with HNC who had undergone EBRT and their caregivers. Data were collected from September 1, 2009, to August 31, 2014, and were analyzed from June 1, 2024, to August 31, 2024.

Main outcomes and measures: The primary outcomes included caregiver employment status and psychological distress level, the latter of which was measured using the Brief Symptom Inventory-18 (BSI-18) for general distress and the Impact of Event Scale-Revised (IES-R) for cancer-specific distress.

Results: The study included 188 caregivers, 159 (84.6%) of whom were female; the mean (SD) age for all caregivers was 54.6 (10.4) years. At baseline, 53 caregivers (28.2%) met BSI-18 criteria for general distress, and 85 (45.2%) met IES-R criteria for cancer-specific distress. By the 12-month follow-up, these rates decreased to 16 of 112 (14.3%) and 30 of 112 (26.8%), respectively. Caregivers were 40% less likely to be employed full-time at the 4-month follow-up (odds ratio, 0.60 [95% CI, 0.48-0.75]), and this reduction persisted with a 41% lower likelihood of full-time employment at the 12-month follow-up (odds ratio, 0.59 [95% CI, 0.47-0.74]). Caregivers who reduced their work hours or exited the workforce during the entire study period (n = 48 [25.5%]) reported higher levels of general distress (β = 4.02 [95% CI, 0.65-7.39]). Furthermore, greater role captivity (β = 5.37 [95% CI, 2.12-8.63]) and lower caregiving competence (β = -3.84 [95% CI, -6.21 to -1.47]) were associated with elevated levels of both general distress and cancer-specific distress.

Conclusions and relevance: The findings of this survey study suggest that caregiving for patients with HNC undergoing EBRT may be associated with lower employment rates and poorer mental health among caregivers. Integrating caregivers into multidisciplinary HNC care to identify those at risk and connecting them to timely employment-based interventions such as flexible work arrangements and caregiver leave, as well as community-based support services such as counseling and social network-building, could help alleviate the dual burden of employment strain and psychological distress, benefiting both caregivers and patients.