A longitudinal assessment of work situation, sick leave, and household income of mothers and fathers of children with cancer in Sweden

Figures & data

Table I. Parent and child characteristics.

		Parents
	Children n = 149	Mothers n = 139	Fathers n = 138
Parent characteristics
Marital status^a – no. (%)
Married/cohabiting	–	120 (86.3)	121 (87.7)
Partner	–	6 (4.3)	5 (3.6)
Single	–	12 (8.6)	12 (8.7)
Other	–	1 (0.7)	–
Custody^a – no. (%)	–
Joint	–	129 (92.8)	125 (90.6)
Single	–	5 (3.6)	–
Stepparent	–	5 (3.6)	12 (8.7)
Not stated	–	–	1 (0.7)
Education^a – no. (%)	–
Nine years	–	14 (10.1)	28 (20.3)
Upper secondary	–	67 (48.2)	73 (52.9)
University	–	55 (39.6)	35 (25.4)
Not stated	–	3 (2.2)	2 (1.4)
Work status^a – no. (%)	–
In work	–	111 (79.9)	131 (94.9)
Full-time ^b	–	52 (46.8)	124 (94.7)
Part-time ^b	–	54 (48.6)	7 (5.3)
Not stated	–	5 (4.5)	–
Annual household income, e^a	–
11 000–22 000	–	11 (7.9)	3 (2.2)
22 110–33 000	–	17 (12.2)	20 (14.5)
33 110–44 000	–	24 (17.3)	25 (18.1)
44 110–55 000	–	50 (36.0)	55 (39.9)
> 55 000	–	29 (20.9)	32 (23.2)
Not stated	–	8 (5.8)	3 (2.2)
Age of parent^a, years
Mean (SD)	–	37.2 (6.6)	39.8 (6.8)
No. (%)
< 30	–	20 (14.4)	10 (7.2)
31–39	–	72 (51.8)	68 (49.3)
≥ 40	–	47 (33.8)	60 (43.5)
Siblings^a – no. (%)
0		12 (8.6)	14 (10.1)
1–2		99 (71.2)	102 (73.9)
≥ 3		28 (20.1)	22 (15.9)
Distance to pediatric oncology center, km
Mean (SD)	–	140.0 (110.5)	175 (344.6)
Child characteristics
Sex – no. (%)
Boy	72 (48.2)	69 (49.6)	69 (50.0)
Girl	77 (51.7)	70 (50.4)	69 (50.0)
Age of child^a, years
Mean (SD)	8.2 (5.2)	8.3 (5.2)	8.0 (5.2)
No. (%)
0–3	40 (26.8)	36 (25.9)	39 (28.3)
4–7	36 (24.2)	38 (27.3)	34 (24.6)
8–12	42 (28.2)	35 (25.2)	39 (28.3)
13–18	31 (20.8)	30 (21.6)	26 (18.8)
Diagnosis – no. (%)
Leukemia	54 (36.2)	49 (35.3)	51 (37.0)
CNS tumors	31 (20.8)	29 (20.9)	29 (21.0)
Other solid tumors	64 (43.0)	61 (43.9)	58 (42.0)
Prognosis^c – no. (%)
≥ 75%	82 (55.0)	75 (54.0)	73 (52.9)
< 75%	67 (45.0)	64 (46.0)	65 (47.1)
Length of treatment, months
Mean (SD)	15.4 (11.7)	16.2 (11.8)	15.9 (11.9)
Range	0.7–64.3	2.3–59.6	0.7–64.3
No. (%)
< 6 months	36 (24.2)	29 (20.9)	28 (20.3)
6–12 months	38 (25.5)	36 (25.9)	36 (26.1)
> 12–24 months	27 (18.1)	27 (19.4)	28 (20.3)
> 24 months	40 (26.8)	40 (28.8)	37 (26.8)
Not stated	8 (5.4)	7 (5.0)	9 (6.5)
Treatment intensity^d – no. (%)
Not high intensity	80 (53.7)	73 (52.5)	74 (53.6)
High intensity	69 (46.3)	66 (47.5)	64 (46.4)
Relapse during the entire study period – no. (%)
No	113 (75.8)	105 (75.5)	103 (74.6)
Yes	36 (24.2)	34 (24.5)	35 (25.4)

^aAt T1 = one week after child's diagnosis.

^bPercentages based on the number of parents in work.

^cFive-year probability of survival based on childhood cancer survival in the Nordic countries [25].

^dTreatment intensity was estimated as high intensity vs. not high intensity. High intensity included the following diagnoses and protocols: AML (all protocols); ALL (extra intensive/very intensive protocols and Philadelphia positive); Ewing sarcoma (all protocols); Osteosarcoma (all protocols); B-cell lymphoma; Neuroblastoma (high risk); HIT (Hirntumor)-protocol; SIOP 4 PNET-protocol; BMT/SCT; and other treatments for high-risk groups. All other treatments were assigned to the category not high intensity.

Table II. Attrition among parents who participated at T1 and at least one additional assessment (n = 277).

Attrition	T2 (137 mothers; 135 fathers)	T3 (120 mothers; 121 fathers)	T4 (122 mothers; 116 fathers)	T5 (121 mothers; 113 fathers)	T6 (109 mothers; 105 fathers)
Temporarily excluded^a	1	25	2	2	–
Excluded from further participation^b	–	1	6	6	8
Lost their child	2	4	24	28	45
Temporarily withdrawal	2	2	1	1	–
Withdrawal	–	4	6	6	8
Administrative reasons	–	–	–	–	2

^aExclusion related to, e.g. a short treatment.

^bExclusion related to, e.g. assignment to a non-included hospital/pediatric oncology center, parent's death.

Figure 1. The percentage of mothers and fathers working (full-time/part-time). Note: *p < 0.05; **p < 0.01; ***p < 0.001; n.s. not significant. Statistically significant differences to T1 by McNemar's Significance Test.

Table III. The most common reasons among parents who, in comparison to T1, had reduced their working hours or stopped working after the end of treatment.

	Sick leave n (%)			Parental benefit n (%)			Unemployment n (%)			Own choice n (%)			Other n (%)
	T4	T5	T6	T4	T5	T6	T4	T5	T6	T4	T5	T6	T4	T5	T6
Mothers	42 (82.4)	34 (73.9)	12 (48.0)	5 (9.8)	4 (8.7)	7 (28.0)	3 (5.9)	2 (4.3)	2 (8.0)	–	1 (2.2)	3 (12.0)	1 (2.0)	5 (10.9)	1 (4.0)
Fathers	28 (62.2)	13 (56.5)	5 (29.4)	9 (20.0)	4 (17.4)	4 (23.5)	2 (4.4)	1 (4.3)	3 (17.6)	4 (8.8)	5 (21.7)	4 (23.5)	2 (4.4)	–	1 (5.9)

Table IV. Factors associated with parents’ work situation (in work or not), sick leave status (on sick leave or not), and household income (less than at T1 or not) one week (T4) and one year (T6) after the end of treatment.

	Odds Ratio^b (95% Confidence Intervals)
	Work situation		Sick leave		Household income
Factors^a	T4	T6	T4	T6	T4	T6
Parent sex
Mothers (fathers)	4.78 (2.52–9.04)***	–	3.89 (2.21–6.84)***	3.95 (1.62–9.63)**	–	–
Child prognosis
Prognosis < 75% (≥ 75%)	1.51 (0.74–3.13)	4.08 (1.39–12.00)*	1.45 (0.80–2.62)	–	–	2.04 (0.94–4.45)
Treatment length
< 6 months (> 24 months)	7.81 (3.06–19.96)***	2.45 (0.72–8.36)	–	–	–	1.74 (0.65–4.63)
6–12 months (> 24 months)	3.73 (1.36–10.20)*	0.89 (0.22–3.57)	–	–	–	2.56 (0.94–6.98)
12–24 months (> 24 months)	2.92 (1.03–8.34)*	0.41 (0.80–2.12)	–	–	–	1.62 (0.54–4.84)
Number of healthy siblings
No siblings (≥ 3 siblings)	–	0.91 (0.19–4.29)	–	–	–	–
1–2 siblings (≥ 3 siblings)	–	0.28 (0.11–0.71)**	–	–	–	–
Household income at T1, €
< 33 000 (> 55 000)	–	1.47 (0.47–4.61)	–	–	–	–
33 110–55 000 (> 55 000)	–	0.43 (0.16–1.20)	–	–	–	–
Intensity of treatment
Not high (high intensity)	–	–	0.46 (0.26–0.83)*	–	–	–
Child sex
Girl (boy)	–	–	–	–	0.43 (0.23–0.81)**	–

^aFactors found significant in univariate analyses were included in the regression models. Reference group is in parentheses.

^bOdds of not working, being on sick leave, and having less income.

*p < 0.05; **p < 0.01; ***p < 0.001. Significant factors by binary logistic regression models.

Figure 2. The percentage of mothers and fathers being on sick leave (full-time/part-time). Note: *p < 0.05; **p < 0.01; ***p < 0.001; n.s. not significant. Statistically significant differences to T1 by McNemar's Significance Test.

Table V. Length of sick leave among parents who reported being on sick leave at T2 (n = 181)^a.

	All	Mothers	Fathers
Length of sick leave	n (%)	n (%)	n (%)
T2–T3	153 (86.4)	96 (88.9)	57 (82.6)**
T2–T4	97 (61.4)	69 (70.4)	28 (46.7)**
T2–T5	61 (39.6)	48 (50.0)	13 (22.4)**
T2–T6	22 (15.1)	20 (20.0)	2 (3.6)**

^aParents who were on and off sick leave are not included in the presented figures.

**p < 0.01. Significant differences between mothers and fathers by χ²-tests.

Table VI. Descriptive data on household income change from T1 reported by mothers and fathers, respectively.

	Mothers	Fathers
Income change from T1	n (%)	n (%)
At T2
Unchanged	110 (83.3)	106 (80.3)
More	–	–
Less	22 (16.7)	26 (19.7)
At T3
Unchanged	90 (76.3)	91 (75.8)
More	2 (1.7)	1 (0.8)
Less	26 (22.0)	28 (23.3)
At T4
Unchanged	90 (73.8)	80 (70.2)
More	6 (4.9)	5 (4.4)
Less	26 (21.3)	29 (25.4)
At T5
Unchanged	77 (64.7)	77 (68.8)
More	7 (5.9)	6 (5.4)
Less	35 (29.4)	29 (25.9)
At T6
Unchanged	60 (56.1)	61 (58.1)
More	18 (16.8)	17 (16.2)
Less	29 (27.1)	27 (25.7)

Nordic Society of Pediatric Haematology and Oncology (NOPHO). Childhood Cancer in the Nordic Countries: Report on Epidemiologic. and Therapeutic Results From Registries. and Working Groups. Turku. 2011.

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