Parents of terminally ill adolescents experienced changed parental roles and a distorted time world
Question What are the processes used by parents of adolescents who are terminally ill with cancer for understanding perceptions of time and parenting?
A qualitative study using methods from the phenomenological paradigm.
Parents in 11 families who had an adolescent who was terminally ill.
Data were collected over 2.5 years and included meetings with families 1–3 times each week from the time of consent until after the death of the adolescent. Meetings were held in clinics, hospitals, homes, and the community. Initially, general questions were used to focus on the process families experienced during long term care. Topics included family routine, sharing of household tasks and care of the sick adolescent, financial management, supports, and the adolescent's contact with friends and the educational system. Data were analysed on the parental role and departure from the normative lifecycle.
Parents felt their role changed from parenting …