Impact of a child’s cancer disease on parents’ everyday life: a longitudinal study from Sweden

Figures & data

Table 1. Participants’ (n = 246 over the study period) characteristics and reasons for exclusion or decline at each assessment (T2–T6).

	T2	T3	T4	T5	T6
Parents (children)	243 (132)	215 (115)	212 (116)	208 (114)	192 (107)
Mothers	122	107	109	108	98
Fathers	121	108	103	100	94
Eligible at each assessment^a	259	244	241	213	213
Reeligible after previous decline/exclusion		1	26	1	3
Excluded
Palliative care/child death	3	2	22	4	15
Child moved to a non-participating center	2	1	3
Child ended successful treatment	1	24
Parent death					2
Declined
Not able to prioritize issues under circumstances	5			1
Not interested	1	1	1		1
Prefers a written questionnaire	2		1
Does not feel representative
Too emotionally moved by last interview	2	1			1
Administrative failure			2		2

^a The number of parents eligible at each assessment was based on the number of parents who had provided verbal consent to be contacted again and the number of parents who was reeligible after previous exclusion, e.g. 24 parents of a child who had ended successful treatment before T3 was excluded from the T3 assessment but reeligible at T4.

T2: two months after diagnosis; T3: four months after diagnosis; T4: one week after end of treatment or six months after end of transplantation; T5: three months after end of treatment or nine months post end of transplantation; T6: one year after end of treatment or 18 months after transplantation.

Table 2. Parents’ reports of restrictions on daily activities and differences in reports between mothers and fathers.

	Leisure activities						Work/Studies
	All or most of the timen (%)	Some of the timen (%)	Seldom or nevern (%)	N/An (%)	p-Value^a	Effect size	All or most of the timen (%)	Some of the timen (%)	Seldom or nevern (%)	N/An (%)	p-Value^a	Effect size
T2
All	85 (35.0)	39 (16.0)	119 (49.0)				182 (74.9)	22 (9.1)	33 (13.9)	6 (2.5)
Mothers	47 (38.5)	21 (17.2)	54 (44.3)				108 (88.5)	5 (4.1)	4 (3.3)	5 (4.1)
Fathers	38 (31.4)	18 (14.9)	65 (53.7)		.333	0.095	74 (61.2)	17 (14.0)	29 (24.0)	1 (.8)	<.001	0.366
T3
All	52 (24.2)	44 (20.5)	118 (54.9)	1 (0.5)			143 (66.5)	23 (10.7)	46 (21.4)	3 (1.4)
Mothers	32 (29.9)	23 (21.5)	51 (47.7)	1 (0.9)			88 (82.2)	8 (7.5)	8 (7.5)	3 (2.8)
Fathers	20 (18.5)	21 (19.4)	67 (62.0)		.082	0.153	55 (50.9)	15 (13.9)	38 (35.2)		<.001	0.371
T4
All	35 (16.5)	50 (23.6)	127 (59.9)				99 (46.7)	48 (22.6)	59 (27.8)	6 (2.8)
Mothers	26 (23.9)	27 (24.8)	56 (51.4)				64 (58.7)	24 (22.0)	16 (14.7)	5 (4.6)
Fathers	9 (8.7)	23 (22.3)	71 (68.9)		.006	0.219	35 (34.0)	24 (23.3)	43 (41.7)	1 (0.9)	<.001	0.318
T5
All	8 (3.8)	15 (7.2)	184 (88.5)	1 (0.5)			47 (22.6)	18 (8.7)	129 (62.0)	14 (6.8)
Mothers	6 (5.6)	11 (10.2)	91 (84.3)				38 (35.2)	6 (5.6)	54 (50.0)	10 (0.9)
Fathers	2 (2.0)	4 (4.0)	93 (93.0)	1 (1.0)	.086	0.154	9 (9.0)	12 (12.0)	75 (75.0)	4 (4.0)	<.001	0.347
T6
All	8 (4.2)	9 (4.7)	174 (90.6)	1 (0.5)			12 (6.3)	18 (9.4)	145 (75.5)	17 (8.8)
Mothers	7 (7.1)	4 (4.1)	87 (88.8)				9 (9.2)	13 (13.3)	65 (66.3)	11 (11.2)
Fathers	1 (1.1)	5 (5.3)	87 (92.6)	1 (1.1)	.106	0.153	3 (3.2)	5 (5.3)	80 (85.1)	6 (6.4)	.017	0.215

^a p-Value for differences in proportions between mothers and fathers as determined by χ²-tests. Effect size measured by Cramer’s V.

T2: two months after diagnosis; T3: four months after diagnosis; T4: one week after end of treatment or six months after end of transplantation; T5: three months after end of treatment or nine months after end of transplantation; T6: one year after the end of treatment or 18 months after transplantation.

Table 3. The association between parent-reported restrictions on daily activities and partial PTSD.

	Leisure activities				Work/Studies
	No case^a	Case^a			No case^a	Case^a
	n (%)	n (%)	p-Value^b	Effect size	n (%)	n (%)	p-Value^b	Effect size
T2
All or most of the time	35 (29.7)	50 (40.0)			82 (71.3)	100 (82.0)
Some of the time	17 (14.4)	22 (17.6)			12 (10.4)	10 (8.2)
Seldom or never	66 (55.9)	53 (42.4)	.105	0.136	21 (18.3)	12 (9.8)	.122	0.133
T3
All or most of the time	22 (17.7)	30 (33.3)			75 (61.0)	68 (76.4)
Some of the time	23 (18.5)	21 (23.3)			12 (9.8)	11 (12.4)
Seldom or never	79 (63.7)	39 (43.3)	.008	0.213	36 (29.3)	10 (11.2)	.007	0.216
T4
All or most of the time	16 (12.3)	19 (23.2)			54 (42.9)	45 (56.3)
Some of the time	28 (21.5)	22 (26.8)			27 (21.4)	21 (26.3)
Seldom or never	86 (66.2)	41 (50.0)	.041	0.173	45 (35.7)	14 (17.5)	.018	0.197
T5
All or most of the time	3 (1.9)	5 (10.9)			24 (15.9)	23 (53.5)
Some of the time	6 (3.7)	9 (19.6)			13 (8.6)	5 (11.6)
Seldom or never	152 (94.4)	32 (69.6)	<.001	0.329	114 (75.5)	15 (34.9)	<.001	0.381
T6
All or most of the time	4 (2.5)	4 (13.3)			5 (3.4)	7 (24.1)
Some of the time	4 (2.5)	5 (16.7)			13 (8.9)	5 (17.2)
Seldom or never	153 (95.0)	21 (70.0)	<.001	0.321	128 (87.7)	17 (58.6)	<.001	0.332

^a No case = parents not reporting partial PTSD; case = parents reporting partial PTSD.

^b p-Value to denote significant relationship between parent-reported restrictions on daily activities and partial PTSD by ?²-tests. Effect size measured by Cramer’s V.

T2: two months after diagnosis; T3: four months after diagnosis; T4: one week after end of treatment or six months after end of transplantation; T5: three months after end of treatment or nine months after end of transplantation; T6: one year after the end of treatment or 18 months after transplantation.

Table 4. Parents’ report of child symptom burden by parent-reported restrictions on daily activities.

	Leisure activities				Work/Studies
	Mean (SD)	95% CI	p-Value^a	Effect size	Mean (SD)	95% CI	p-Value^a	Effect size
T2
All or most of the time	0.73 (0.52)	0.62–0.84			0.69 (0.47)	0.62–0.76
Some of the time	0.70 (0.42)	0.57–0.84			0.62 (0.34)	0.47–0.78
Seldom or never	0.61 (0.44)	0.53–0.69	.192	0.014	0.54 (0.48)	0.37–0.72	.233	0.012
T3
All or most of the time	0.64 (0.50)	0.50–0.78			0.54 (0.44)	0.47–0.62
Some of the time	0.50 (0.33)	0.40–0.60			0.51 (0.32)	0.37–0.65
Seldom or never	0.47 (0.40)	0.39–0.54	.042	0.030	0.48 (0.47)	0.33–0.62	.669	0.004
T4
All or most of the time	0.58 (0.58)	0.39–0.78			0.44 (0.48)	0.34–0.54
Some of the time	0.38 (0.39)	0.27–0.49			0.33 (0.32)	0.24–0.43
Seldom or never	0.32 (0.33)	0.26–0.49	.003	0.055	0.31 (0.32)	0.22–0.40	.122	0.021
T5
All or most of the time	0.37 (0.27)	0.14–0.60			0.25 (0.29)	0.17–0.33
Some of the time	0.34 (0.37)	0.14–0.54			0.28 (0.32)	0.12–0.44
Seldom or never	0.18 (0.22)	0.14–0.21	.005	0.051	0.14 (0.14)	0.12–0.17	.001	0.070
T6
All or most of the time	0.32 (0.35)	−0.01–0.64			0.44 (0.37)	0.21–0.68
Some of the time	0.36 (0.37)	0.08–0–64			0.22 (0.38)	0.04–0.40
Seldom or never	0.15 (0.18)	0.12–0.17	.001	0.072	0.13 (0.15)	0.11–0.16	<.001	0.149

^a p-Value to denote significant relationship between parent-reported restrictions on daily activities and child symptom burden by ANOVA. Effect size measured by eta squared.

CI: confidence interval; T2: two months after diagnosis; T3: four months after diagnosis; T4: one week after end of treatment or six months after end of transplantation; T5: three months after end of treatment or nine months after end of transplantation; T6: one year after the end of treatment or 18 months after transplantation.