Household income and risk‐of‐poverty of parents of long‐term childhood cancer survivors

Mader, Luzius; Roser, Katharina; Baenziger, Julia; Tinner, Eva Maria; Scheinemann, Katrin; Kuehni, Claudia E.; Michel, Gisela

doi:10.1002/pbc.26456

Cited by 31 publications

(40 citation statements)

References 33 publications

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“…Although need for financial support also decreased over time, some parents reported to still need financial support more than 20 years after diagnosis. This is in line with our previous research, showing a lasting impact of the childhood cancer diagnosis on the income and employment situation of parents in Switzerland . Together, these results may indicate a need for additional support structures for parents of childhood cancer patients and survivors in Switzerland.…”

Section: Discussionsupporting

confidence: 92%

“…In the long run, parents may need more specific emotional and informational support, e.g., support from other affected parents or health‐care professionals . A lack of support might contribute to parents experiencing disadvantages, e.g., in their professional lives or financial situation . Therefore, it is vital that parents’ support needs are met during and after their child's cancer treatment.…”

Section: Introductionmentioning

confidence: 99%

“…Parents of children with cancer experience a broad range of psychosocial and socioeconomic disadvantages during the child's acute treatment phase and early survivorship . However, little is known about the disadvantages experienced many years after the child's treatment is completed.…”

Section: Introductionmentioning

confidence: 99%

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“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

Mader

Baenziger

et al. 2019

Pediatric Blood & Cancer

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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.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

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“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

Mader

Baenziger

et al. 2019

Pediatric Blood & Cancer

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“…This being said, prior publications have demonstrated an increase in financial hardship over the course of cancer treatment secondary to income losses (due to work disruption) as well as out‐of‐pocket expenses (e.g., travel, accommodation, and communication costs) in populations without pre‐existing HMH or low income at the time of diagnosis . Other studies show that some patients and families may be affected by these financial burdens for several years following diagnosis and even into survivorship . We found a substantial proportion (36%) of families with incomes > 200% FPL who endorsed at least one domain of HMH.…”

Section: Discussionmentioning

confidence: 50%

Feasibility of systematic poverty screening in a pediatric oncology referral center

Zheng

Shyr

et al. 2018

Pediatric Blood & Cancer

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“…We identified 3359 articles through literature searches and included 35 articles, reporting on 29 individual studies (Figure ). Thirteen (37%) studies were conducted in Europe, 16 (46%) in North America/Australia, and six (17%) in Asia/Africa (Table ).…”

Section: Resultsmentioning

confidence: 99%

The impact of childhood cancer on parents' socio‐economic situation—A systematic review

et al. 2019

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Objective Taking care of children diagnosed with cancer may have considerable consequences on parents' socio‐economic situation. Our systematic review aimed to evaluate and synthesise the evidence on the impact of childhood cancer on parents' socio‐economic situation. Methods Systematic literature searches for articles published between January 2000 and January 2019 were performed in PubMed, Scopus, and PsycINFO. Findings of eligible articles were narratively synthesised and quality appraised. Results Our systematic review included 35 eligible articles. Childhood cancer had a substantial impact on parents' socio‐economic situation across all studies. This impact varied largely by geographical region. We observed a high prevalence of disruptions in parental employment such as job quitting or job loss, particularly among mothers. The associated income losses further contributed to families' perceived financial burden in addition to increased cancer‐related expenses. Adverse socio‐economic consequences were most pronounced shortly after diagnosis, however, persisted into early survivorship for certain groups of parents. We identified families of children diagnosed with haematological cancers, younger age at diagnosis, and lower parental socio‐economic position to be at particular risk for adverse socio‐economic consequences. Conclusions Following the child's cancer diagnosis, parents experience a broad range of adverse socio‐economic consequences. Further effort is needed to systematically implement an assessment of financial hardship in paediatric oncology together with appropriate support services along the cancer trajectory.

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Household income and risk‐of‐poverty of parents of long‐term childhood cancer survivors

Abstract: Parents of long-term CCS reported lower household income and higher risk-of-poverty than control parents. Support strategies may be developed to mitigate parents' risk-of-poverty in the long term, particularly among parents with lower education.

Cited by 31 publications

References 33 publications

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

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

Feasibility of systematic poverty screening in a pediatric oncology referral center

The impact of childhood cancer on parents' socio‐economic situation—A systematic review

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