Background: When a child is diagnosed with cancer, parents are confronted with the potential fatality of the disease. However, for many parents distress is not over with the end of treatment and cure of the child. Parents may suffer from a variety of psychological problems such as depression, anxiety or post-traumatic stress symptoms. Uncertainty about the child’s health and worries about relapse or late effects may negatively affect parents individually or as a couple. We aim to 1) describe psychological and socio-demographic outcomes, as well as needs in parents of long-term childhood cancer survivors and compare them with parents of the general population, 2) evaluate associations of these outcomes with the clinical characteristics of the child’s disease and the child’s own late outcomes and 3) provide Swiss norm-data for three established and frequently used instruments on quality of life, psychological distress and post-traumatic stress.
While most survivors get on with their life after cancer, many parents remain affected by their experience long after their child reached adulthood. The study will be the first population-based study among parents of long-term survivors of childhood cancer and will shed light on their psychological well-being, social outcomes and the needs they have for their children and themselves.