“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.

The parental experiences of caring for children with childhood cancers in Singapore: a pilot focus group study

“…Furthermore, future studies could also explore the experiences of children with cancer, including their fathers and siblings to understand their psychosocial needs. Third, similar to other studies, 17,19 this study explored the retrospective parental experience of having a child with cancer, which may be different from prospective experiences, and thus may contain some level of recall bias. Nevertheless, the existing literature suggests that both prospective 11,21 and retrospective studies 17,19 on parental experiences revealed consistent findings that significant parental emotional distress was reported, especially in the early stages of receiving the child' s cancer diagnosis.…”

“…11 Such findings are also consistent with international studies. 6,19 Although further research is required, the current finding that Singaporean parents are receptive towards receiving emotional support from healthcare professionals is encouraging. The findings indicated a need for an early and holistic parental support programme to address intrapersonal, interpersonal and financial needs.…”

“…Although financial stress is commonly experienced by parents of children with cancer, 6,17–19,22 the limitation in accessing government savings funds is an experience specific to Singaporean parents. According to the current government policy in Singapore, 28 citizens and permanent residents contributed a portion of their monthly salaries to an individual savings fund managed by the government.…”

“…Following the cancer diagnosis, parents reported experiencing significant emotional distress. 6,11,[17][18][19][20] In the current study, parents reported disrupted sleep quality, especially in the initial period of diagnosis, trauma and ongoing distress from caring for their child with cancer. As the child progresses to survivorship, parents continue to report uncertainty around their child' s health status.…”

“…Nevertheless, some difficulties in communicating to others about the child' s cancer were commonly reported by parents regardless of cultural differences. 11,17,20,22 Limitation in accessing funds: concerns raised by Singaporean parents Although financial stress is commonly experienced by parents of children with cancer, 6,[17][18][19]22 the limitation in accessing government savings funds is an experience specific to Singaporean parents. According to the current government policy in Singapore, 28 citizens and permanent residents contributed a portion of their monthly salaries to an individual savings fund managed by the government.…”