Factors associated with the comprehensive needs of caregivers of childhood cancer survivors in Korea

Abstract

Purpose: Caregivers of childhood cancer survivors (CCS) have diverse needs, which should be addressed to provide comprehensive cancer care. We aimed to evaluate the unmet needs of caregivers of CCS.

Methods: The subjects were 700 caregivers recruited at three major hospitals in South Korea. We collected study data using self-administered questionnaires and a thorough review of medical records. We assessed the unmet needs of caregivers using the comprehensive needs assessment tool for cancer caregivers and evaluated factors associated with the highest tertile range of unmet needs by multiple logistic regression analysis.

Results: The greatest unmet needs of caregivers had to do with healthcare staff, followed by information. Compared with father-caregivers, mother-caregivers had greater unmet needs related to health and psychological problems, family/social support, and religious/spiritual support, with odds ratios (95% confidence interval) of 3.79 (2.52-5.69), 3.17 (2.09-4.81), and 1.69 (1.14-2.50), respectively. Compared with caregivers of the youngest CCS (< 6 years), caregivers of CCS aged 12-18 years and caregivers of the oldest CCS (≥ 19 years) respectively showed 2.62 (1.24-5.52) and 3.18 (1.34-7.55) times greater unmet needs for information. Caregivers of CCS who received haematopoietic stem-cell transplantation had a 2.01-fold (1.14-3.57) greater need for practical support.

Conclusion: Caregivers of CCS had substantial unmet needs required for comprehensive care for CCS. Several individual characteristics of caregivers and their children were significantly associated with greater unmet needs of the caregivers.

Implications for cancer survivors: Personalized support based on the characteristics of both CCS and their caregivers is required to provide comprehensive care for CCS.

Keywords: Caregiver; Childhood cancer survivors; Comprehensive needs assessment tool for cancer caregivers; Unmet needs.