Taiwanese families caring for adolescents with cancer: the impact on roles and relationships.

Abstract

This study explores the impact of care-giving for an adolescent with cancer on the roles and relationships within Taiwanese families. Such understanding serves as a platform for recommending services and supports for care-giving families in a health care system that traditionally has not provided such assistance. Research indicates that treatment outcomes and survival rates from cancer in the adolescent population are poor. Most research focuses on symptom management and the identification of effective medical treatments for this group. Such times are particularly stressful for most families in Taiwan because there is little support when caring at home for an adolescent with cancer. Grounded theory was used in this study. Seven families (27 participants) including parents, siblings and adolescents were recruited from a public medical centre in Taiwan. Following ethics approval in-depth interviews were conducted in Mandarin. The interviews were transcribed using a credited interpreter and analysed using the constant comparative method. The main category shaped by Chinese cultural values and beliefs was identified as: the broken chain of family life, within which three subcategories emerged: living with distress; experiencing the bitter-sweet burden of care-giving; and enduring strain on family roles and relationships. The findings reveal how the broken chain of life was experienced, repaired and restored by families. These findings provide a better understanding of, and insight into, how care-giving influences family roles and relationships when caring for an adolescent with cancer at home in Taiwan. This information is important to health professionals in informing service provision and family support.