What do partners of patients with ovarian cancer need from the healthcare system? An examination of caregiving experiences in the healthcare setting and reported distress

Purpose Ovarian cancer is typically characterized by late-stage diagnoses, frequent recurrences, and treatment changes. Ovarian cancer caregivers (OCC) are thus heavily involved with cancer care and often are highly distressed. Methods We explored the relationship with OCC distress and caregiving experiences within the healthcare system and with the healthcare providers (HCP), using a cross-sectional questionnaire study. OCC provided sociodemographic and patient medical information, and completed measures of consequences of caregiving and needs from HCP, and of depression and anxiety. We recruited participants through advertisements and two cancer centers. Results N = 82 OCC provided complete questionnaires. Participants on average were 57.2 years old, English-speaking white men, and were partnered for 28.5 years. On average, patients were diagnosed at stage III, and treated with surgery and chemotherapy. Eight percent met clinical cut-offs for depression (23.2% in sub-clinical range), and 23.2% met clinical cut-offs for anxiety (20.7% in sub-clinical range). Depression and anxiety were significantly correlated with lacking time for social relationships, higher workload, lacking information, and needing more help from HCP. Only depression was correlated with problematic quality of information from HCP. Conclusions OCC distress is related to their caregiving roles within the cancer care system, and how HCP support them in their responsibilities, which may contribute to a lack of time to access their supports. Perceived involvement by the HCP has an important influence on OCC distress. Higher demands of caregiving and insufficient support from the cancer care system may relate to increased distress. Our study supports the need for better integration of caregiver supports from within the healthcare system.

Automated summary

This study explored the relationship between distress and caregiving experiences of ovarian cancer caregivers (OCC) within the healthcare system, and found that depression and anxiety were correlated with lack of social relationships, higher workload, lack of information, and need for more help from HCP. Depression was also associated with problematic quality of information from HCP.