The insurance, legal, and financial situation of parents of childhood and adolescent cancer survivors: a systematic review

The Insurance, Legal, and Financial Situation of Parents of Childhood and Adolescent Cancer Survivors: A Systematic Review Sonja Kälin1, Martina Ospelt1, Pauline Holmer1, Kathleen Ostheim1, Eva Maria Tinner2,3, Luzius Mader4, Manya Hendriks1, Gisela Michel1, & Katharina Roser1 1 University of Lucerne, Faculty of Health Sciences and Medicine, Lucerne, Switzerland 2 Division of Pediatric Hematooncology, Inselspital, University Hospital Bern, Bern, Switzerland 3 University Center of Internal Medicine, Kantonsspital Baselland, Liestal, Switzerland 4 Cancer Registry Bern Solothurn, University of Bern, Bern, Switzerland Corresponding author: Katharina Roser, Faculty of Health Sciences and Medicine, University of Lucerne, Alpenquai 4, 6005 Lucerne, Switzerland; [email protected], +41 41 229 59 56 Disclosure: The authors declare that there are no conflicts of interest regarding this study. 2 Abstract Background: Childhood and adolescent cancer affects not only patients but also their parents, who face challenges beyond the emotional burden, including financial hardship, insurance issues, and legal complications. Aims: This review synthesized existing literature on the long-term financial, insurance, and legal circumstances of parents of childhood and adolescent cancer survivors (CACS). Methods: A systematic search was conducted in PubMed, Scopus, CINAHL, and PsycINFO, complemented by forward and backward citation searches. Peer-reviewed, original studies were eligible if they examined financial, insurance, or legal hardships among parents of children diagnosed with cancer before age 18 and at least two years post-diagnosis. Following screening and data extraction, a narrative synthesis was conducted. Results: Twenty-four publications on parents of CACS were included. All addressed financial circumstances, four covered insurance-related issues, and two addressed legal aspects. Parents often face long-term financial burdens due to ongoing medical expenses, loss of income, inadequate insurance coverage, and late effects of cancer and its treatment. Risk factors for financial hardship included child-related characteristics such as younger age at diagnosis, and parental characteristics such as being a mother or having a low level of education. Conclusions: Even years after treatment, many parents continue to experience financial, insurance, and legal hardships. Mothers, parents with low education, and families of children diagnosed at a younger age, are particularly at risk. These findings emphasize the need for sustained support beyond treatment, systematic early identification of at-risk families, targeted education and policy-level interventions to alleviate long-term burdens faced by affected families. Keywords: childhood cancer, finances, insurance, legal, parents, survivors, systematic review 3 Background Parents of children diagnosed with cancer not only face family adjustments and psychological challenges [1,2] but may also encounter significant hardships in financial, insurance, and legal domains. Although these areas have received comparatively less attention in research, they can place considerable strain on families navigating the complexities of childhood cancer [3]. A cancer diagnosis profoundly disrupts family life. Beyond the initial shock and emotional strain, parents often face substantial financial and insurance-related challenges [4,5]. A considerable amount of research exists about the financial consequences for parents shortly after the cancer diagnosis and during treatment [6,7]. In the USA, families frequently encounter high deductibles and co-payments even when insured, as underinsurance remains a widespread issue, resulting in coverage limitations and significant out-of-pocket expenses [8]. In addition to medical costs, families also bear considerable non-medical expenses for food, travel, and accommodation during treatment [9,10]. As a result, many families are forced into debt or deplete their savings, placing them at risk of long-term financial hardship [11]. Beyond direct financial costs, indirect financial strains arise due to increased caregiving responsibilities. Parents often spend extensive time in the hospital with their ill child while simultaneously caring for siblings. These heightened caregiving demands frequently lead to changes in parental employment, such as reduced working hours or job loss, further compromising the family's financial stability [12]. While the acute financial impact of childhood cancer on families is well documented, less is known about the long-term financial circumstances after treatment. Existing reviews only provide partial insights: some refer to the long-term socioeconomic impact [13,14], whereas others do not explicitly address it [6,7]. However, there appears to be no review that has focused exclusively on parents of survivors and included only studies with a long-term perspective after treatment. In addition, previous reviews have concentrated on financial aspects, with limited attention to related domains such as insurance and legal challenges. Against this background, it is crucial to recognize that the financial burden experienced by parents of CACS is multifaceted. To better conceptualize this complexity, the theoretical model 4 proposed by Jones [15] offers a valuable framework. It distinguishes between material and psychological financial burden, considers both healthcare-specific and general costs, and incorporates causes (e.g., treatment costs, employment changes), moderators (e.g., socioeconomic status, insurance type), and downstream effects on quality of life, mental health, and even mortality. Applying this model underscores the importance of examining financial hardship in relation to structural and systemic factors – such as insurance and legal contexts - and supports the need for an integrated investigation. Empirical evidence supports this perspective, showing that parents are affected not only by financial difficulties but also by insurance and legal challenges [16–18]. Given the interrelation of financial, insurance, and legal aspects, and the challenges in disentangling them, a comprehensive investigation across these domains is both necessary and warranted. Taken together, the present systematic review addressed the outlined gaps by examining not only one isolated domain but the interrelated financial, insurance, and legal challenges faced by parents of CACS, focusing specifically on the long-term hardships. Accordingly, the present systematic review aimed to systematically synthesize existing research on the long-term financial, insurance-related, and legal situation of parents of CACS, including reported hardships, and their associated risk factors. It offers a comprehensive overview of the challenges reported in the literature and the associated risk factors, while highlighting key areas where further research is needed. Methods This review complies with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines [19] and was preregistered on PROSPERO (No. CRD42023423759). Literature search A systematic search was conducted in the electronic databases PubMed, CINAHL, Scopus, and PsycINFO using four search blocks: insurance, legal, or financial hardships; survivors or parents; childhood and adolescence; and cancer (Supplement A). The search strategy was adapted for each database to optimize the retrieval of relevant publications. Databases were selected based on their thematic focus to ensure a comprehensive identification of relevant literature across multiple 5 disciplines. This review included peer-reviewed studies investigating insurance, legal, or financial hardships experienced by parents of CACS. While the systematic search encompassed both survivors and parents, the present review focuses exclusively on parents. Findings related to survivors are addressed in a separate publication [20]. The initial search was conducted on March 16, 2023, and subsequently updated on June 24, 2024, and May 21, 2025. To find additional relevant publications, a forward and backward citation search was conducted on June 6, 2025, using Scopus. Selection criteria We included peer-reviewed, original research publications examining insurance, legal, and financial hardships faced by parents of children diagnosed with cancer. Eligible publications had to focus on parents of children who received a cancer diagnosis before the age of 18 years (≥75% of sample or separate analyses) and were at least two years post-diagnosis (≥75% of sample or separate analyses). The long-term insurance, legal, and financial hardships of parents of CACS were defined as the circumstances and demands that parents encountered in these domains at least two years postdiagnosis, that is, beyond the immediate treatment period. Publication selection criteria (Supplement B) were applied hierarchically to identify eligible publications. Publication screening Manual removal of duplicates and screening were done with the web-based screening tool Rayyan (https://rayyan.ai/). Titles and abstracts of all identified publications were independently screened by at least two reviewers (MO, PH, SK, KR). Full texts of potentially eligible publications were retrieved and assessed independently by at least two reviewers (MO, PH, SK, KR). Any discrepancies in selection decisions were resolved through discussion among the reviewers (MO, PH, SK, KR). Data extraction Data extraction was performed by the first author (SK) and independently verified by a second researcher (KR, MO). Detailed information on the insurance, legal, and financial situation, associated risk factors for related hardships, study characteristics (e.g., country, study design, sample size), parent (e.g., age at study, gender), and survivor characteristics (e.g., cancer diagnosis, age at diagnosis, time 6 since diagnosis), were systematically extracted using a predefined data extraction sheet. Information on comparison groups was recorded where applicable. Quality assessment The methodological quality of the included publications was assessed using the Quality Assessment with Diverse Studies (QuADS) tool, which is applicable to qualitative, quantitative, and mixedmethods study designs and has demonstrated substantial reliability and validity [21]. The QuADS tool comprises thirteen evaluation criteria, rated on a scale from 0 (not mentioned) to 3 (detailed information). Each publication was independently evaluated by two reviewers (SK, KO, MO). For each study and reviewer, a percentage of the maximum score was calculated, and the mean of the two reviewer assessments was used for analysis. Data synthesis To account for the inclusion of both quantitative and qualitative study results, we chose to use narrative synthesis for the analysis and reporting of findings [22]. Eligible studies were grouped by outcome domain (financial, insurance, legal) and risk factors to support the narrative synthesis. Results Publication selection Database searches yielded 3,414 records: PubMed (n = 2,068), CINAHL (n = 686), Scopus (n = 423), and PsycINFO (n = 237). After removing duplicates (n = 962), 2,452 records remained for title and abstract screening. Of these, 354 full-text articles were retrieved and assessed for eligibility. Finally, 19 publications met the inclusion criteria. An additional 1,391 records were identified through backward and forward citation searching. After removing duplicates, 1,104 records remained for screening, leading to the retrieval of 110 full-text articles for eligibility assessment. Of these, five additional publications met the inclusion criteria, resulting in a final total of 24 publications included in the review (Figure 1). 7 Publication characteristics Of the 24 publications included, the majority reported on quantitative studies (n = 14), while fewer publications reported on studies employing qualitative (n = 7) or mixed methods approaches (n = 3) (Table 1). The studies originated from 11 different countries, with most conducted in high sociodemographic index countries and one in a low-middle-sociodemographic index country [23]. Geographically, the highest number of publications came from Europe (n = 12) and North America (n = 7), followed by Asia (n = 2), Oceania (n = 2), and Africa (n = 1). The publication years ranged from 2004 to 2025, with 75% (n = 18) published within the last decade and 50% (n = 12) since 2020. The mean overall quality of the included publications was 82%, ranging from 73% to 87% (Supplement C). The inter-rater reliability was very high with an ICC ranging from .98 to 1.00 for the different studies, with a mean of .99 (SD = .007). Reported financial, insurance, and legal hardships Financial burden Financial aspects of childhood and adolescent cancer were documented in all included publications and therefore reported across a range of countries. Studies highlight substantial medical costs from diagnosis through survivorship, which often result in long-term financial strain or instability for parents of CACS [18,24–28]. Families across different settings reported similar coping strategies and consequences: in high-income countries such as Australia and the USA, parents described depleted savings, difficulties covering rent, utilities, or unforeseen expenses, selling possessions, and in some cases relocating to more affordable areas or facing housing insecurity and homelessness [26,28–31]. In lower-income contexts, such as Kenya, families were likewise compelled to sell valuables, including livestock and land, and frequently accumulated debt [32]. In Sweden, nearly one in five parents still reported significant financial hardship an average of 15 years post-diagnosis [25]. Possible reasons for this persistent strain have been identified in other studies. For instance, evidence from Australia indicates that many parents struggled to regain financial stability after treatment because of their child’s ongoing care needs [28]. A Canadian study showed 8 that parents often had to provide continued financial support well into their child’s adulthood, as disability allowances were frequently insufficient to cover living expenses. In this study, 82% of parents reported providing additional financial assistance to prevent their child from falling into poverty, and 31% experienced hardship from out-of-pocket costs related to late effects not fully covered by insurance, including medication, eyeglasses, hearing aids, dental care, and vitamins [17]. Across contexts, parental finances were further strained when one parent had to reduce working hours or leave employment altogether [27,30]. Financial support for parents Access to and the type of financial support varied across countries, significantly influencing parents’ financial stability. In Switzerland, 4% of parents still reported a need for financial support an average of 24 years after diagnosis, compared to 8% shortly after treatment [33]. In the USA, the healthcare system provided financial relief when medical bills became unmanageable, with nearly 12% of families receiving such aid [27]. In addition to institutional support, close or extended family members were an important source of financial assistance [29]. At the same time, several shortcomings were reported. Lack of awareness about available programs contributed to long-term hardship [29]. Furthermore, many parents described the process of seeking support as burdensome or stigmatizing. For instance, 57% found disability allowance applications burdensome and felt poorly supported, and some reported being treated in a demeaning way when applying for public funding [17,27]. Families also faced uncertainty about the continuity of financial aid after treatment [29]. In some contexts, national policies created additional barriers: in Singapore, parents relied heavily on government-managed medical savings funds to cover the costs of late effects, yet restrictive regulations made it difficult to access these funds [18]. Reflecting these challenges, more than half of parents in Switzerland expressed a need for a dedicated contact point to assist not only with financial matters but also with insurance and legal issues [33]. 9 Income loss Ten of the included publications investigated income loss, with some reporting a long-term decline in parental income following a child’s cancer diagnosis [28,32,34–39]. Publications from Scandinavian countries highlight gender differences in income reductions among parents of children with cancer. These studies report substantial and long-lasting declines in mothers’ income, ranging from 6% to 14% lower than that of reference mothers five to six years post-diagnosis, while fathers experienced only short-term reductions, typically recovering within one year, and their total income largely remained stable [34,36,37,39]. In contrast, one Swedish study found that fathers showed persistently lower earnings, while mothers' earnings became significantly higher than those of reference mothers from two years post-diagnosis onward and remained elevated thereafter [38]. In Switzerland, parents reported lower household incomes and a higher risk of poverty compared to comparison parents, even eight or more years after diagnosis. Notably, this effect was observed only among couples, not among single parents [35]. In the USA, income loss frequently resulted in debt, long recovery times, and difficulties covering basic needs [30,40]. Beyond economic losses, parents reported a shift in personal priorities following their child’s cancer experience. This led to a willingness to accept lower salaries in exchange for reduced stress and more time with their families [28]. Income protection mechanisms In some countries, income protection mechanisms such as sickness benefits and parental leave exist to support parents who are unable to work due to their own illness or the need to care for a seriously ill child. A study from the USA indicates that the absence of insurance coverage for income loss contributes to long-term financial debt [30]. A Canadian study found that although the proportion of families relying on sources other than regular salaries—such as employment insurance and social assistance—decreased over time after diagnosis, 20% were still dependent on them at least three years after their child’s diagnosis [41]. Legislative reforms in Denmark granting full salary compensation for parents of seriously ill children underscore the importance of such policies, as they reduced the risk 16 Implications The reported long-term financial hardships faced by parents of CACS underscore the need for sustained comprehensive support beyond the treatment phase. This includes financial aid, employment protection, and accessible caregiving leave to reduce income loss and prevent long-term risk of poverty. While assistance programs exist, many parents face administrative barriers [17,27]. Simplifying application processes, providing proactive counseling, and tailoring support to the needs of CACS families are essential to improve access and reduce stress. Given that mothers are disproportionately affected by income loss [34,36], interventions must consider gendered patterns of work status and caregiving. Paid leave, flexible work arrangements, and return-to-work programs must be designed with this in mind. Clinical and psychosocial care settings should adopt systematic approaches to identify families at elevated risk of long-term financial hardship early on - particularly those with pre-existing socioeconomic disadvantages. Early identification is important for timely, targeted referrals to appropriate counseling and support services. Social and healthcare professionals should be aware of the legal and insurance-related burden that often persists after treatment. Parents may require legal support to navigate insurance claims, obtain disability allowances, or address workplace discrimination. The integration of insurance and legal navigation services into survivorship care could play a key role in alleviating the persistent burden experienced by families. Study strengths and limitations A key strength of this review is its holistic perspective, combining financial, insurance-related, and legal aspects to capture the real-life complexity of hardships faced by parents of CACS. This comprehensive approach adds practical value for healthcare, social service, and policy stakeholders. Conducted according to PRISMA guidelines, the review included studies from multiple major databases and search strategies, identifying gaps such as the underreporting of legal and insurancerelated challenges and providing a roadmap for future research. Several limitations should be considered when interpreting the findings. Although the review followed a rigorous and systematic search strategy, extended by a forward and backward reference 17 search, no search of grey literature was conducted, which may have resulted in the omission of relevant studies not indexed in peer-reviewed databases. The included studies employed varying definitions, measures, and timeframes for financial, insurance-related, and legal hardship. This heterogeneity limited comparability across studies and precluded quantitative synthesis, and the risk of publication bias could not be formally assessed. Although the inclusion criteria required that the child’s diagnosis occurred at least two years prior, it was not always clearly stated in the studies whether specific reported experiences took place during or after the treatment phase, potentially affecting the interpretation of findings related to long-term consequences. Conclusions This review highlights that parents of CACS often experience long-term financial strain, driven by income loss, ongoing caregiving responsibilities, and gaps in insurance coverage. Navigating insurance claims frequently requires legal assistance, adding another layer of complexity. Although some support mechanisms are in place, many families face significant administrative and systemic barriers in accessing them. Legal and insurance-related challenges remain underexplored in research, underscoring the need for further research. Particular attention should be given to parents with preexisting socioeconomic disadvantages, who are especially vulnerable to persistent financial hardship and require targeted, accessible, and sustained support. 18 Statements and Declarations Funding This work was supported by the Swiss Cancer Research Foundation (Grant no. KFS-5384-08-2021), Swiss National Science Foundation (Grant no. 10001C_182129/1), European Union (grant no. 101136549) and the Swiss State Secretariat for Education, Research and Innovation (SERI). Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them. Authors Contributions LM, MH, and KR secured the funding. The review was conceptualized by MO, LM, MH, GM, SK, and KR. MO conducted the literature search, while reference screening was carried out by SK, PH, MO, and KR. Data extraction was performed by SK and double-checked by KR. Quality assessment of the included studies was conducted by SK, KO, and MO. SK drafted the initial manuscript and prepared all figures and tables. All authors contributed to manuscript revision and approved the final version for submission. Preregistration This review was preregistered on PROSPERO. Data availability No new primary data were generated or analysed in this review. The full data extraction sheet is available from the authors upon reasonable request. 19 References [1] Long KA, Marsland AL. Family Adjustment to Childhood Cancer: A Systematic Review. Clin Child Fam Psychol Rev 2011;14:57–88. https://doi.org/10.1007/s10567-010-0082-z. [2] Jantien Vrijmoet-Wiersma CM, Van Klink JMM, Kolk AM, Koopman HM, Ball LM, Maarten Egeler R. Assessment of Parental Psychological Stress in Pediatric Cancer: A Review. 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Haushalte und Familien in der Schweiz: Einkommen, Armut und Lebensbedingungen im Jahr 2023 2025. [53] Pospíšil J, Olecká I, Matulayová N, Pospíšilová H, Jurníčková P, Macháčková P. Who Are the People at Socio-Economic Risk? Socio-Demographical Analysis of the Czech People in Specific Economical Situations Recognized in Value-Based Risk Prediction Model. Social Sciences 2022;11:211. https://doi.org/10.3390/socsci11050211. Figure 1: PRISMA flow diagram Note: a Combined search for survivors and parents. The hardships experienced by survivors are discussed in another publication (Ospelt et al., 2024). Reports not retrieved (n=5) Identification of publications via databases Records identified from: PubMed (n=2,068) CINAHL (n=686) Scopus (n=423) PsycINFO (n=237) Records removed before screening: Duplicate records removed (n=962) Records screened (n=2,452) Records excluded (n=2,093) Reports sought for retrieval (n=359) Reports assessed for eligibility (n=354) Reports excluded: Wrong publication type (n=34) Wrong language (n=1) Wrong population (n=188) aThereof survivors (n=58) Wrong outcome (n=112) Publications included in review (n=19) Identification Screening Included Eligibility Records identified from: Scopus (n=1,391) Records removed before screening: Duplicate records removed (n=287) Records screened (n=1,104) Records excluded (n=994) Reports sought for retrieval (n=110) Reports not retrieved (n=0) Reports assessed for eligibility (n=110) Reports excluded: Wrong publication type (n=4) Wrong language (n=1) Wrong population (n=65) Wrong outcome (n=20) Already included in review (n=15) Publications included in review (n=5) Identification of publications via backward and forward citation search Total publications included in review (n = 24) Table 1. Overview of included publications. First author (year) [REF] Country Study design Sample size Parents (survivors) Comparison group Sex/gender distribution of parents Mean age at diagnosis of child in years (SD/range) or proportions for categories Mean time since cancer diagnosis of child in years (SD/range) or proportions for categories Cancer type Domains Reported findings Benedict et al. (2025) [29] USA Qualitative, cross-sectional 11 (11) None 82% mothers, 18% fathers Median = 6 years (NR/2-16 years) Median = 14 years (NR/6-23 years) Mixed Financial / Insurance Depletion of savings, including funds Insurance challenges as stress factor Uncertainty about continued access to financial support after end of treatment Chae et al. (2020) [24] Korea Quantitative, longitudinal NR (7317) None NR 0–4 years: 30.3% 5–9 years: 21.1% 10–14 years: 28.0% 15–17 years: 20.6% Longitudinal data from year of diagnosis to 5 years after Mixed Financial Burden of medical childhood cancer costs Christen et al. (2019) [33] Switzerland Mixed-method, cross-sectional 478 (308) None 59% mothers, 41% fathers 6.9 (4.5 / NR) 24.0 (7.1 / NR) Mixed Financial Financial support need reported by 7.8% of parents after treatment and by 4.2% in the long term (on average 24 years post-diagnosis) Christensen et al. (2024) [30] USA Qualitative, cross-sectional 48 (38) None 69% mothers, 31% fathers NR (NR/3 months–14 years) NR (completed treatment at least one year) Mixed Financial / Insurance Depletion of savings Debt Insufficient insurance coverage for income loss