Parents from former childhood cancer patients

Background: When a child is diagnosed with cancer, parents are confronted with the potential fatality of the disease. They experience a highly stressful time, which may affect their psychological well-being, their relationship as a couple, and with their children. Additionally, because of prolonged absence from work, they may experience an economic burden. However, for many parents distress is not over with the end of treatment and the cure of their child. Parents may suffer from a variety of psychological problems such as depression, anxiety or post-traumatic stress symptoms. Uncertainty about their child’s health and worries about a possible relapse or late effects may negatively affect parents individually or as a couple. So far, late outcomes of childhood cancer in parents have mostly been studied in small samples and only within a short time frame after the end of treatment.

Objectives: 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 established and frequently used instruments on quality of life, psychological distress and post-traumatic stress.

Methods: We will include all parents whose children were diagnosed with cancer under age 16 years, who were Swiss residents at diagnosis, who survived for 5 years or more, and are currently alive and aged 20 years or older. Additionally, we will select a random sample of parents from the general population. Parents of survivors will first be contacted by paediatric oncologists from the original treating clinic. All parents will receive a questionnaire package from the study centre. Clinical information on the cancer and treatment are available from the SCCR, and information about survivors’ health from the Swiss Childhood Cancer Survivor Study.

Rationale and significance: Several large cohort studies among childhood cancer survivors have improved our knowledge on their late outcomes and well-being. However, while most survivors get on with their life after cancer, many parents remain affected by their experience long after their child reaches adulthood. The proposed 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.

Current status of the project: The new questionnaire including questions on quality of life, post-traumatic growth, family bonding and social consequences has been developed and we are currently preparing the documents for the submission to the ethics committee.

Study team: Michel G, Vetsch J, Rueegg CS, Department of Health Sciences and Health Policy, University of Lucerne

Funding: Swiss National Science Foundation (Grant-No: 100019_153268 / 1), Kinderkrebshilfe Schweiz.

Contact: Gisela Michel (gisela.michel@unilu.ch), Janine Vetsch (janine.vetsch@unilu.ch)

© ISPM - University of Bern 2016