Burdens, Needs and Satisfaction of Terminal Cancer Patients and their Caregivers

Abstract

Objectives: Terminal cancer patients and their caregivers often experience traumatic stress and need many types of assistance. In the present study we interviewed terminally ill cancer patients and caregivers to determine how much burden they experienced and to find out what factors are most important for satisfaction. Design: We constructed a questionnaire including overall care burden and needs experienced, and administered it to 659 terminal cancer patients and 659 important caregivers at 11 university hospitals and 1 national cancer center in Korea. Results: Finally, 481 terminal cancer patients and 381 caregivers completed the questionnaire. Care burden was not insubstantial in both and the caregiver group felt more burden than the patient group (P<0.001). While the patient group needed financial support most (39.0%), the caregiver group placed greatest emphasis on discussion about further treatment plans (44.8%). Stepwise multiple logistic regression analyses showed that in the patient group, patient’s health status (OR, 2.03; 95%CI, 1.16-3.56) and burden (OR, 2.82; 95%CI, 1.76-4.50) influenced satisfaction about overall care, while in the caregiver group, high education level (OR, 1.84; 95%CI, 1.76-4.50), burden (OR, 2.94; 95%CI, 1.75-4.93) and good family function (OR, 1.94; 95%CI, 1.24-3.04) were important. Conclusions: Our study showed that burden was great in both terminal cancer patients and their caregivers and was perceived to be more severe by caregivers. Our study also showed that burden was the factor most predicting satisfaction about overall care in both groups. Key words: Burden of terminal illness - caregivers - cancer patients - financial support - treatment plans