Parental employment adjustment during and after childhood cancer treatment – a report from the Swiss Childhood Cancer Survivor Study‑Parents

Vol.:(0123456789) Supportive Care in Cancer (2025) 33:556 https://doi.org/10.1007/s00520-025-09599-z RESEARCH Parental employment adjustment duringandafterchildhood cancer treatment—a report fromtheSwiss Childhood Cancer Survivor Study‑Parents MartinaOspelt1· SonjaKälin1· AlexandraSchifferli2· AndréO.vonBueren3,4· KatharinaRoser1· GiselaMichel1 Received: 31 January 2025 / Accepted: 27 May 2025 © The Author(s) 2025 Abstract Purpose Parents of children with cancer experience treatment-related employment disruptions. Most significant shifts occur during diagnosis and treatment. However, challenges can persist into survivorship. We explored employment changes during diagnosis and treatment among parents of children with cancer, and professional and financial impact during long-term survivorship. We investigated (1) if and what kind of employment changes occurred, (2) reasons for the changes, (3) differences between mothers and fathers, and (4) if parents experience long-term professional or financial impacts from their child’s past illness. Methods A questionnaire survey assessed employment changes during diagnosis and treatment and long-term professional and financial impacts. We described changes and reasons thereof and conducted logistic regression analyses to predict longterm impacts. Results We included 469 parents (59% female) of childhood cancer survivors (mean = 24 years after diagnosis). At time of treatment, 21% of parents reported employment changes: e.g., work time reduction (52%), quitting (27%), and taking unpaid leave (21%). Mothers were more likely to experience changes (OR = 2.00; p = .005). Most parents (87%), especially mothers, reported caring for their sick child to be one of the reasons for change. Some parents reported professional (5%) or financial long-term impact (5%). Financial impact was mainly associated with survivors experiencing late effects (OR = 10.51; p < .001), cancer relapse (OR = 3.96; p = .007), and survivors’ financial dependence (OR = 3.64; p = .005). Professional impact was associated with female sex (OR = 3.26; p = .029) and employment changes (OR = 2.39; p = 0.050). Conclusions Although most parents do not experience lasting effects on employment or finances, some continue to face challenges well into survivorship. Providing sustained, long-term support for these parents is essential. Keywords Childhood cancer· Parents· Survivorship· Employment disruptions· Financial burden· Professional burden Background The profound disruptions to daily life following a child’s cancer diagnosis present significant challenges for parents. Balancing work, family obligations, and caring for the sick child is demanding [1–5]. Roles and responsibilities for childcare and work have to be reorganized, often resulting in mothers assuming the primary responsibility for the sick child [2–4, 6]. This shift in responsibilities can lead to employment disruptions [7]. A significant number of parents of children with cancer experience treatment-related employment disruptions, including unpaid leave, reduced workloads, alterations to work schedules, or quitting altogether [7–9] with mothers being affected more often [7, 9]. Some studies report up to 94% of families being affected Katharina Roser and Gisela Michel shared last authorship. * Gisela Michel [email protected]h 1 Faculty ofHealth Sciences andMedicine, University ofLucerne, Alpenquai 4, 6005Lucerne, Switzerland 2 Department ofHematology/Oncology, University Children’s Hospital Basel, Basel, Switzerland 3 Department ofPediatrics, Obstetrics andGynecology Division ofPediatric Hematology andOncology, University Hospital ofGeneva, Geneva, Switzerland 4 Cansearch Research Platform forPediatric Oncology andHematology, Faculty ofMedicine, Department ofPediatrics, Gynecology andObstetrics, University ofGeneva, Geneva, Switzerland Supportive Care in Cancer (2025) 33:556 556 Page 2 of 13 by some sort of employment disruption as a result of their child’s illness [10, 11]. These employment disruptions and thereto related substantial income losses often lead to perceived financial burden for families [7, 10, 11]. Further, the financial burden of childhood cancer is a source of psychosocial stress for parents that may manifest in symptoms such as anxiety, distress, and disrupted sleep [12]. Psychological, familial, and practical factors affect parents’ ability to stay in and/or return to work [4, 5, 13]. Most significant shifts in role dynamics occur during the early stages of diagnosis and initial treatment [2, 4]. However, challenges associated with managing increased caregiving demands and employment disruptions may persist well beyond the end of treatment, extending into the survivorship phase [4, 14]. Many survivors experience various late effects [15, 16], necessitating ongoing support from their family [4], while understanding and support from outsiders diminish over time [13]. Parents serve as the primary informal caregivers for children, and it is crucial to understand their experience of balancing work and parenting, particularly as the demands of caregiving intensify following a cancer diagnosis. However, there has been a lack of studies helping to understand the long-term repercussions that extend well beyond the end of treatment into long-term survival. The aim of this study was to understand employment changes of parents during their child’s cancer diagnosis and treatment in Switzerland, and to examine whether impacts persist into survivorship. Specifically, we investigated (1) if and what kind of employment changes occurred in parents during their child’s cancer diagnosis and treatment, (2) reasons for the employment changes, (3) differences between mothers and fathers, and (4) if parents experience long-term professional or financial impact due to their child’s past illness. Methods Sample andprocedure This report is part of a larger project investigating psychosocial late outcomes in parents of long-term childhood cancer survivors (CCS) (Swiss Childhood Cancer Survivor Study–Parents (SCCSS–Parents) [17–21]). Parents were recruited through the population-based Swiss Childhood Cancer Registry (SCCR). The SCCR registers all patients with a cancer diagnosis below the age of 20 years in Switzerland. Parents were included if (a) their child was diagnosed with cancer at age ≤ 16 years (1976–2009) according to the International Classification of Childhood Cancer—Third Edition (ICCC-3), (b) their child was a Swiss resident at diagnosis, (c) at least 5years had passed since diagnosis, and (d) their child was aged ≥ 20 years in 2016 and alive. Eligible parents’ addresses were extracted from the SCCR and verified using the online telephone directory. Parents were then contacted through their formerly treating clinics. First, a study information letter was mailed to all eligible parents. Second, 2weeks later, parents received two questionnaires (one for each parent) and a prepaid envelope for return. Non-responders were reminded a maximum of two times, 4–6 and 12–14 weeks later (contact period: 01/2017–02/2018). Because parents from all over Switzerland were surveyed, all study documents were available in the three main languages German, French, and Italian. Measurements Employment changes andreasons forchanges duringdiagnosis andtreatment Parents reported retrospectively on employment changes during diagnosis and treatment of their child and reasons for employment changes (from a list; supplemental appendix A). For changes and reasons, multiple indications per affected parent were possible. If parents chose “other” for changes or reasons, they were asked to describe in openended questions. An overall binary variable for employment changes (yes/no) was coded “yes” if the parent reported any change. Long‑term professional impact Parents were asked about their current professional situation and if it was impacted by their child’s illness (yes/no). Parents were able to explain in what way their employment was still affected in an open-ended question. Additionally, parents were asked whether they were satisfied with their current employment situation (yes/no). Long‑term financial impact Parents were asked whether they were still financially impacted by their child’s illness (yes/no) at time of study; if so, they were asked to describe the nature of these impacts in an open-ended question. They were also asked how well they were able to live on their current household income and if their child is financially independent. A binary variable for CCS’ financial dependence (yes/no) was coded “yes” if parents reported that their child is not or only partially financially independent. Parent characteristics Parents reported on demographic and socioeconomic characteristics including their sex, age, civil status (coded: single/ married/separated/divorced/widowed), household income Supportive Care in Cancer (2025) 33:556 Page 3 of 13 556 (coded: 0–3000/3001–4500/4501–6000/6001–9000/9001– 12,000/> 12,000), highest educational achievement (coded: compulsory schooling/vocational training/upper secondary education/university education), employment situation (coded: part-time/full-time/retired/homemaker; if, additionally to employment/retirement, homemaker was indicated, employment/retirement was coded), number of children, and parents’ health status (first item of 36-Item Short Form Survey Instrument (SF-36) [22, 23]). A binary variable for parents’ health status (good/poor) was coded “good” when parents indicated excellent, very good or good health, and “poor” when parents indicated fair or poor health. Survivor characteristics Characteristics describing the survivors, including sex, age at diagnosis, diagnosis (coded: leukemia/lymphoma/CNS tumors/other tumors), and treatment (coded hierarchically: surgery only/chemotherapy (may have had surgery, but not radiotherapy)/radiotherapy (may have had surgery and/or chemotherapy)/stem cell transplantation (may have had surgery and/or chemotherapy and/or radiotherapy)), and relapse (yes/no) were derived from the SCCR. Parents were asked if their child suffers from cancer-related late effects (yes/no). Statistical analysis Statistical analyses were performed using Stata, Version 18 (College Station, TX: StataCorp LLC). To describe the sample, we used descriptive statistics. For aims 1 and 2, descriptive statistics were used to describe whether parents experienced employment changes during the time of diagnosis and treatment, the type of changes, and the reasons for changes. Open-ended responses were used to qualitatively describe “other” changes and reasons. For aim 3, a mixed-effects logistic regression model was estimated to examine whether response behavior (i.e., one or both parents completed questionnaire) was associated with reported employment changes. The model included a random intercept at the child level and considered the number of responding parents (1 vs. 2) as an independent variable. The association between having both parents respond and reported employment changes was not statistically significant (β = − 0.416, 95% CI − 0.956, 0.124, p = 0.131). The likelihood ratio test comparing the mixed-effects model to a standard logistic regression indicated that including a random intercept at the child level did not significantly improve model fit (p = 0.137). Consequently, subsequent analyses were conducted using standard logistic regressions to test if sociodemographic or survivor characteristics were associated with employment changes. Using chi-square (χ2) tests, we examined whether employment changes (yes/no), specific types of changes (e.g., reducing work time; yes/no), and reasons for changes (e.g., caring for the sick child; yes/ no) differed between mothers and fathers. To examine aim 4 regarding parents’ perceived long-term professional and financial impacts, we first conducted descriptive statistics, followed by logistic regression models to identify factors associated with long-term impacts. To account for potential clustering of responses within families, all models were estimated with robust standard errors clustered at the child level. All statistically significant variables with p < 0.05 in the univariable model were included in the multivariable model for each outcome. We used the open-ended responses to qualitatively describe parents’ experienced long-term impacts. The impacts mentioned were thematically categorized and grouped into overarching themes. Results Parents of 574 eligible CCS were contacted. A total of 478 parents (59.0% mothers) of 308 survivors participated in the questionnaire survey (response rate 53.7%). CCS of participating and non-participating parents were comparable in terms of sociodemographic and cancer-related characteristics. This has been described in more detail elsewhere [24]. Of all participating parents, 469 parents of 303 CCS responded to the questions about employment changes and were included in the analyses. Parental couples made up 336 of these parents. For 133 survivors, only one parent (81.2% mothers) completed the questionnaire. Parents had a mean age of 62.2 years at time of study (SD = 6.8; range 45–85). CCS’ mean age at diagnosis was 6.9 years (SD = 4.6; range 0–15) and mean time since diagnosis was 23.9 years (SD = 7.0; range 7–40). Most parents were married (n = 370; 78.9%), had completed vocational training (n = 230; 49.0%), and were employed part-time (n = 139; 29.6%) or full-time (n = 116; 24.7%) at time of study. Around a third (n = 159; 33.9%) were retired (Table1). Prevalence ofemployment changes In total, 20.9% (n = 98) of parents indicated employment changes at the time of their child’s diagnosis and treatment. Mothers (n = 70; 71.4%) were more likely than fathers (n = 28; 28.6%; χ2 = 8.10; p = 0.004; Table2) to report changes. We did not find any other significant association between employment changes and demographic or diagnosisand treatment-related characteristics (supplemental appendix B). Among parents with employment changes, the most frequently reported changes were as follows: reducing work time (n = 50; 51.5%), quitting job (n = 26; 26.8%), and taking unpaid leave (n = 20; 20.6%). Some parents reported changing jobs (n = 5, 5.2%), increasing work time (n = 3; 3.1%), or losing their job (n = 1; 1.0%) during the Supportive Care in Cancer (2025) 33:556 556 Page 4 of 13 Table 1 Characteristics of participating parents and their children who survived childhood cancer Characteristics of parents (N = 469) Mean SD Range N% Age at study (years) Overall Mothers Fathers 62.2 61.3 63.4 6.8 6.7 6.7 45–85 45–85 49–83 Age at diagnosis (years) Overall Mothers Fathers 38.4 37.3 39.9 6.3 5.9 6.5 21–64 21–57 23–64 Sex Female Male 276 193 58.9 41.1 Civil status at study Single Married Separated Divorced Widowed 5 370 4 37 25 1.1 78.9 0.9 7.9 5.3 Number of children at study 1 2 3 4 ≥ 5 7 208 132 52 30 1.5 44.4 28.1 11.1 6.4 Educational achievement at study Compulsory schooling Vocational training Upper secondary education University education 52 230 77 69 11.1 49.0 16.4 14.7 Employment situation at study Employed full time Mothers Fathers Employed part time Mothers Fathers Homemaker Mothers Fathers Retired Mothers Fathers 116 29 87 139 117 22 39 38 1 159 80 79 24.7 25.0 75.0 29.6 84.2 15.8 8.3 97.4 2.56 33.9 50.3 49.7 Household income (in CHF per month) at study 0–3000 3001–4500 4501–6000 6001–9000 9001–12,000 > 12,000 31 32 80 128 64 67 6.6 6.8 17.1 27.3 13.7 14.3 Health status at study Excellent 64 13.7 Very good 190 40.5 Good 190 40.5 Fair 16 3.4 Poor 5 1.1 Characteristics of survivors (N = 303) Mean SD Range N% Age at study (years) 32.2 6.3 21–54 Age at diagnosis (years) 6.9 4.6 0–15 Time since diagnosis (years) 23.9 7.0 7–40 Sex Female Male 137 166 45.2 54.8 Supportive Care in Cancer (2025) 33:556 Page 5 of 13 556 time of diagnosis and treatment (Fig.1). Mothers (n = 23; 88%) were more likely to quit their job than fathers (n = 3; 12%; χ2 = 5.19, p = 0.023; Table2). Regarding the types of employment changes, this was the only significant difference identified between mothers and fathers. Furthermore, 12 parents (12.4%) indicated they had experienced other types of employment changes, such as reducing international travel for work or shifting working hours CNS central nervous system. Observations may not sum to total N due to missing values. Percentages are based on the total number of participants and may not add up to 100 due to missing values. Table 1 (continued) Characteristics of parents (N = 469) Diagnosis Leukemia Lymphoma CNS tumor Neuroblastoma Retinoblastoma Renal tumor Hepatic tumor Malignant bone tumor Soft tissue sarcoma Germ cell tumor Langerhans cell histiocytosis 105 52 36 13 9 20 6 15 23 10 11 34.7 17.2 11.9 4.3 3.0 6.6 2.0 5.0 7.6 3.3 4.6 Treatment Surgery Chemotherapy Radiotherapy Stem cell transplantation 37 168 78 19 12.3 55.6 25.8 6.3 Relapse Yes No 38 265 12.5 87.5 Late effects (parent-reported) Yes No 116 177 38.3 58.4 Table 2 Chi-square (χ2) tests investigating differences between mothers and fathers for employment changes and reasons Bold font indicates statistically significant results. Multiple indications per affected parent for changes and reasons possible. Chi-square (χ2) tests “Yes” reported by mothers (N = 276) n (%) “Yes” reported by fathers (N = 193) n (%) p-value Employment changes (N = 469) Employment change (yes/no) 70 (25.4) 28 (14.5) 0.004 Types of employment changes Work time reduction (yes/no) 33 (47.1) 17 (60.7) 0.250 Quitting job (yes/no) 23 (33.3) 3 (10.1) 0.023 Unpaid leave (yes/no) 13 (18.5) 7 (25.0) 0.497 Changing job (yes/no) 3 (4.3) 2 (7.1) 0.573 Work time increase (yes/no) 1 (1.4) 2 (7.1) 0.142 Job loss (yes/no) 0 (0.0) 1 (3.6) 0.115 Reasons for employment changes Caring for the sick child (yes/no) 58 (82.9) 18 (64.3) 0.126 Too little time for other family members (yes/no) 22 (31.4) 11 (39.3) 0.254 Job not being a priority (yes/no) 21 (30.0) 1 (3.6) 0.007 Being exhausted (yes/no) 17 (24.3) 0 (0.0) 0.006 Shift in interest (yes/no) 1 (1.4) 1 (3.6) 0.445 Financial reasons (yes/no) 0 (0.0) 1 (3.6) 0.093 Supportive Care in Cancer (2025) 33:556 556 Page 6 of 13 from daytime to evenings/weekends to avoid falling behind and/or losing pay. In addition to the 98 parents who reported employment changes, 13 mothers who were not employed at the time of diagnosis explicitly responded to open-ended questions that although they did not experience employment changes, their workload at home had changed with increased care-taking responsibilities. Reasons foremployment changes Of the 98 parents who reported employment changes, 87 provided reasons for the changes. Caring for the sick child was the most frequently reported reason, reported by 76 parents (87.4% of parents with employment changes). More than a third of affected parents (n = 33; 37.9%) reported having too little time for other family members and 25.3% (n = 22) indicated the job not being a priority as reasons for employment changes. Changes because of being exhausted were reported by 19.5% (n = 17) of parents. Few reported a shift in interest (n = 2; 2.3%), financial aspects (n = 1; 1.1%), and “other” (n = 4; 4.6%). Mothers were more likely than fathers to report the job not being a priority (n = 21; 95.5% vs. n = 1; 4.5%; χ2 = 8.18, p = 0.007; Table2) and being exhausted (n = 17; 100% vs. n = 0; 0%; χ2 = 8.37, p = 0.006) as reasons (Fig.1). Long‑term impact Long‑term professional impact At time of survey, 21 parents (4.5%) reported still being professionally impacted by their child’s cancer. On average, this was 21.6 years after the cancer diagnosis (SD = 5.8; range 7–31). Overarching themes such as changes in (paid) workload due to increased care taking responsibilities, exhaustion, or following a different career path after their child’s cancer were identified as impacts (Fig.2). Most parents (n = 400; 85.3%), however, reported satisfaction with their current employment situation. Long-term professional impact was significantly associated with female sex (OR = 2.98, p = 0.048; Table3) in multivariable analyses and with employment changes at time of diagnosis and treatment (OR = 2.39, p = 0.050) in univariable analysis. Long‑term financial impact At time of survey, 23 (4.9%) parents reported still being financially impacted due to their child’s cancer. On average, this was 23.0 years after cancer diagnosis (SD = 6.7; range 7–36). When asked in what respect they were still impacted, most parents (n = 14) reported financially supporting their child who survived cancer. Some provided occasional Fig. 1 Parental employment changes and reasons for employment changes. Note: Multiple indications per affected parent possible. Data for mothers and fathers in absolute numbers Supportive Care in Cancer (2025) 33:556 Page 7 of 13 556 financial support like paying for education, holidays, transportation, or hobbies, and others supported their child with monthly payments or covering living and health insurance expenses. Some parents (n = 4) reported still paying off significant costs that arose from their child’s illness. Two mothers reported financial repercussions on their pension funds. Still experiencing financial impact was significantly associated with having a child who was financially dependent (OR = 3.19, p = 0.018; Table3) and having a child suffering from late effects (OR = 8.25, p = 0.002) in multivariable analyses. Having a child who had relapsed (OR = 3.96, p = 0.007) and having a child who received stem cell transplantation (vs. surgery; OR = 10.73, p = 0.040) was significantly associated with financial impact in univariable analysis, only. When asked about how well parents were able to live on their current income, 67.6% (n = 317) indicated they could live well, 23.9% (n = 112) indicated it was just enough, and 4.1% (n = 19) indicated it was difficult or very difficult to make ends meets. Only three parents reported both professional and financial impact at time of survey. More than one fourth (n = 128; 27.3%) reported that their formerly sick child was not financially independent at time of study. Discussion The aim of this study was to better understand parents’ employment changes during diagnosis and treatment of their child’s cancer in Switzerland, and to examine whether impacts persist into survivorship. We found that one-fifth of parents experienced employment changes during their child’s cancer diagnosis and treatment. Mothers were more often affected than fathers. Most frequently reported changes were work time reduction, reported by over half of affected parents, followed by a quarter who reported quitting and a fifth who reported taking unpaid leave. Most parents, especially mothers, reported caring for their sick child to be a reason for change. Some parents, especially mothers and parents with children suffering from long-term effects, reported professional or financial impacts long into survivorship, on average more than 20 years after their child’s diagnosis. Childhood cancer has a profound impact on parents’, particularly mothers’, employment situation [7]. In line with our findings, a systematic review of international literature shows that unfavorable socio-economic consequences were most imminent at time of diagnosis and treatment, but for some parents persisted into survivorship [7]. The present study, based on a sample of parents of long-term CCS, demonstrates how initial repercussions can affect families’ financial and professional situations long after cancer treatment ended. In previous research, two thirds of parents reported employment disruptions during their child’s cancer treatment [4, 11]. Although the overall proportion of parents experiencing changes was considerably lower in our study, the patterns of changes observed align with previous findings [11]. Regarding the three most frequently reported employment changes, namely work time reduction, quitting, and unpaid leave, the proportions we found were similar [11]. A potential explanation for identifying fewer employment disruptions overall compared to other reports [4, 11, 25] may be attributed to the more dominant traditional family roles in Switzerland on average 24 years ago. According to the Swiss Fig. 2 Impact of the child’s illness on parents’ current employment situation. Example quotes from open-ended questions Supportive Care in Cancer (2025) 33:556 556 Page 8 of 13 Table 3 Univariable and multivariable logistic regressions investigating the factors associated with perceived long-time professional and financial impact Univariable logistic regressions Multivariable logistic regressions Professional impact Financial impact Professional impact Financial impact OR 95% CI p-value Sample size OR 95% CI p-value Sample size OR 95% CI p-value Sample size OR 95% CI p-value Sample size Parent characteristics Sex N = 422 N = 461 Male ref ref Female 3.258 [1.127, 9.417] 0.029 1.085 [0.495, 2.377] 0.838 2.982 [1.010, 8.809] 0.048 N = 422 Age at diagnosis (years) 1.002 [0.918, 1.093] 0.966 N = 418 1.038 [0.976, 1.100] 0.235 N = 457 Age at study (years) 0.961 [0.887, 1.042] 0.338 N = 418 1.026 [0.971, 1.084] 0.369 N = 457 Employment change (yes) 2.394 [0.999, 5.738] 0.050 N = 422 2.062 [0.856, 4.970] 0.107 N = 461 2.096 [0.858, 5.112] 0.104 N = 422 Employment situation at study N = 417 N = 447 Employed full time ref ref Employed part time 2.309 [0.840, 6.346] 0.105 1.177 [0.455, 3.048] 0.737 Homemaker 0.716 [0.081, 6.362] 0.764 1.959 [0.448, 8.567] 0.372 Retired 0.344 [0.065, 1.834] 0.212 1.208 [0.384, 3.803] 0.747 Education at study N = 388 N = 421 Compulsory schooling ref ref Vocational training 1.568 [0.334,7.363] 0.569 1.367 [0.289, 6.465] 0.693 Supportive Care in Cancer (2025) 33:556 Page 9 of 13 556 Table 3 (continued) Univariable logistic regressions Multivariable logistic regressions Professional impact Financial impact Professional impact Financial impact OR 95% CI p-value Sample size OR 95% CI p-value Sample size OR 95% CI p-value Sample size OR 95% CI p-value Sample size Upper secondary education 0.303 [0.026, 3.474] 0.337 2.130 [0.408, 11.130] 0.370 University education 1.410 [0.245, 8.104] 0.700 0.366 [0.031, 4.249] 0.421 Health status N = 419 N = 458 Good ref ref Poor 2.359 [0.505, 11.015] 0.275 3.475 [0.914, 13.208] 0.067 Survivor characteristics CCS’ financial dependence (yes) 2.054 [0.803, 5.250] 0.133 N = 421 3.640 [1.474, 8.991] 0.005 N = 460 3.193 [1.221, 8.353] 0.018 N = 446 CCS’ age at diagnosis (years) 0.962 [0.866, 1.068] 0.463 N = 422 1.013 [0.932, 1.101] 0.758 N = 461 Time since diagnosis (years) 0.962 [0.907, 1.021] 0.205 N = 422 0.986 [0.927, 1.050] 0.665 N = 461 Diagnosis N = 422 N = 461 Leukemia ref ref Lymphoma 1.180 [0.361, 3.859] 0.785 0.703 [0.214, 2.317] 0.563 CNS tumor 1.069 [0.260, 4.402] 0.926 0.252 [0.031, 2.067] 0.199 Other tumor 0.562 [0.170, 1.856] 0.345 0.577 [0.195, 1.714] 0.323 Treatment N = 421 N = 459 Surgery ref ref Chemotherapy 0.830 [0.221, 3.120] 0.782 2.418 [0.293, 19.951] 0.412 Radiotherapy 0.962 [0.221, 4.192] 0.959 4.252 [0.498, 36.275] 0.186 What is your current employment situation on the labor market? (multiple answers possible) Number of hours per week: One job (full-time) _______ hours One job (part-time, at least 1 hour per week) _______ hours Multiple jobs (part-time) _______ hours Looking for a job (registered with the unemployment insurance or not) In training (school, studies, apprenticeship) Homemaker Disabled or partially disabled person (e.g. IV pensioner) Retired (AHV, other pension) or pensioner except disability pensions Other situation without employment Are you satisfied with your current job situation? No Yes Is your current job situation affected by your child’s illness? No Yes If yes, please briefly describe how your child’s illness affects your current job situation. _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ Questions about your vocational training. Please list all the educational training you have completed in column a) and your current training in column b). (multiple answers possible) a) Completed b) Currently in training None Up to a maximum of 7 years of compulsory schooling Compulsory schooling (pre-higher secondary school section, general section, basic section, special school) 1-year pre-apprenticeship, 1-year general education school, 10th school year, 1year vocational orientation school, household service year, language school (at least 1 year) with final certificate, social year, bridge year or similar training 2to 3-year diploma middle school, traffic school, specialized middle school FMS or similar training Basic vocational training (apprenticeship, 2to 4-year vocational apprenticeship or full-time vocational school, commercial diploma, training workshop or similar training) Baccalaureate, teacher training seminar (preparatory training for kindergarten and primary school teachers, handicrafts, home economics) Federal vocational or specialized baccalaureate Higher vocational training with a federal specialist certificate, federal diploma or master's diploma, higher technical college for technology (TS), for economics (HKG) or similar higher technical college (2 years full-time or 3 years part-time study) Higher technical college (predecessor of universities of applied sciences, e.g. HTL, HWV, HFG, HFS) including post-graduate diploma (3 years full-time or 4 years part-time study) Bachelor's degree (university, ETH, university of applied sciences, university of teacher education) Master's degree, licentiate, diploma, state examination, post-graduate diploma (university, ETH, university of applied sciences, university of teacher education) Doctorate, habilitation Please indicate approximately your monthly net income, i.e. the income after deduction of compulsory social security contributions and pension fund contributions. Income in CHF Not employed 0-3000 Fr. 3001-4500 Fr. 4501-6000 Fr. 6001-9000 Fr. 9001-12000 Fr. More than 12000 Fr. Please give a rough estimate of the total monthly net income of your household. Household income in Swiss francs: This is the sum of all the incomes of all household members added together, after deduction of compulsory social security contributions and pension fund contributions, plus, or minus any alimony. 0-3000 Fr. 3001-4500 Fr. 4501-6000 Fr. 6001-9000 Fr. 9001-12000 Fr. More than 12000 Fr. How well do you live on your current household income? (Please tick the answer that best applies to you) It is easy to live on the current income The current income is just enough It is difficult to make ends meet on the current income It is very difficult to make ends meet on the current income Are you still financially burdened by your child's illness today? No Yes If yes, how / by which means? _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ Is your child financially independent? Yes Partially No Does your child suffer from long-term effects of cancer? No Yes If yes, which ones? _____________________________________________________________________ _____________________________________________________________________ _____________________________________________________________________ In general, how would you describe your state of health? Excellent 1 Very good 2 Good 3 Fair 4 Poor 5 Personal details Please answer the following questions about yourself: What is your date of birth? Day __________ Month __________ Year __________ Sex Female Male What is your civil status? Single Married Since ____________ (year) Widowed Since ____________ (year) Divorced Since ____________ (year) Separated Since ____________ (year) Supplemental appendix B – Univariable logistic regressions investigating the factors associated with employment changes Table A1: Univariable logistic regressions investigating the factors associated with employment changes Employment changes OR 95% CI p-value Sample size Parent characteristics Sex (Ref Male) 2.002 [1.234, 3.248] 0.005 N = 469 Age at diagnosis (years) 1.016 [0.980, 1.052] 0.390 N = 465 Education (Ref Compulsory schooling) N = 428 Vocational training 0.884 [0.410, 1.908] 0.754 Upper secondary education 1.102 [0.456, 2.662] 0.830 University education 1.838 [0.778, 4.340] 0.165 Survivor characteristics Sex (Ref Male) 1.129 [0.722, 1.764] 0.595 N = 469 CCS’ age at diagnosis (years) 1.013 [0.964, 1.064] 0.610 N = 469 Diagnosis (Ref Leukemia) N = 469 Lymphomas 0.558 [0.267, 1.165] 0.120 CNS tumors 1.436 [0.720, 2.862] 0.304 Other tumors 0.894 [0.529, 1.511] 0.676 Treatment (Ref Surgery) N = 467 Chemotherapy 1.137 [0.538, 2.403] 0.736 Radiotherapy 1.932 [0.880, 4.239] 0.101 Stem cell transplantation 1.190 [0.363, 3.907] 0.774 Abbreviations: CCS = childhood cancer survivor, CI = confidence interval, CNS = central nervous system, OR = odds ratio, Ref = reference category Note: Bold font indicates statistically significant results.