"I wish someone had once asked me how I'm doing": Disadvantages and support needs faced by parents of long-term childhood cancer survivors.

Christen, Salome; Mader, Luzius; Baenziger, Julia; Roser, Katharina; Schindera, Christina; Tinner, Eva Maria; Michel, Gisela (2019). "I wish someone had once asked me how I'm doing": Disadvantages and support needs faced by parents of long-term childhood cancer survivors. Pediatric blood & cancer, 66(8), e27767. Wiley-Liss 10.1002/pbc.27767

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Childhood cancer affects the whole family and can have a lasting impact on parents of childhood cancer survivors (CCS). We aimed to (1) describe parents' perspective of currently experienced disadvantages and of their support needs during treatment, after treatment, and today; (2) identify characteristics associated with disadvantages and support needs; and (3) describe the use of existing support services.


In this population-based study, we identified parents of CCS (diagnosed ≤16 years of age, ≥5 years since diagnosis, aged ≥20 years at study) through the Swiss Childhood Cancer Registry (SCCR). Parents completed a questionnaire on perceived disadvantages (e.g., job-related, financial, etc.), support needs (e.g., job-related, financial, etc.), and socio-demographics. Cancer-related characteristics were available from the SCCR. We used multivariable multilevel logistic regression to identify characteristics associated with disadvantages and support needs.


An average of 24 years after diagnosis, one-fifth of parents (n = 59/308; 19.2%) reported disadvantages, and 7.1% reported support needs. Many parents had desired more support during (66.9%) or after (34.4%) their child's cancer treatment. Parents whose child experienced late effects (OR = 26.6; 95% CI, 2.9-241.0) or was dependent on parents (OR = 10.6; 95% CI, 2.1-53.7) reported greater current need for more support. Almost half of parents (43.5%) reported having used existing support services.


Many parents need more support during and after active treatment of their child's cancer, and some experience support needs and disadvantages long into survivorship. Better promotion of existing services for parental and familial support and setting up new services, where needed, may help parents in the long term.

Item Type:

Journal Article (Original Article)


04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine
04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine (ISPM)

Graduate School:

Graduate School for Cellular and Biomedical Sciences (GCB)

UniBE Contributor:

Schindera, Christina and Tinner Oehler, Eva Maria Eugenia


600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services








Beatrice Minder Wyssmann

Date Deposited:

21 May 2019 16:12

Last Modified:

23 Oct 2019 12:10

Publisher DOI:


PubMed ID:


Uncontrolled Keywords:

cancer registry childhood cancer disadvantage parents support survivor





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