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

Abstract

Background: 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.

Procedure: 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.

Results: 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.

Conclusions: 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.

Keywords: cancer registry; childhood cancer; disadvantage; parents; support; survivor.