Psychological resilience and long-term distress in Swedish and Icelandic parents’ adjustment to childhood cancer

Figures & data

Table I. Characteristics of children of parents in clinical group.

Diagnosis	n	%	Age at DX^1 m (SD)^2	Years from DX to assessment m (SD)	Girls n	Girls %	Boys n	Boys %
Leukaemia	55	47.4	5.9 (4.4)	9.1 (5.5)	21	38.2	34	61.8
Lymphoma	12	10.3	9.7 (5.1)	8.7 (5.2)	3	25.0	9	75.0
CNS-tumour	15	12.9	5.7 (4.8)	6.6 (2.4)	6	40.0	9	60.0
Sympatic nerve system	3	2.6	1.1 (1.6)	9.5 (5.3)	2	66.7	1	33.3
Retinoblastoma	1	0.9	0.3	18.4	1	100.0	0	0
Renal tumour	6	5.2	3.7 (3.5)	7.6 (3.6)	2	33.3	4	66.7
Hepatic tumour	1	0.9	1.9	11.6	0	0	1	100.0
Skeletal tumour	8	6.9	14.8 (3.2)	5.8 (3.0)	1	12.5	7	87.5
Soft tissue sarcoma	4	3.4	12.6 (7.6)	9.2 (3.1)	1	25.0	3	75.0
Germinal cell cancer	4	3.4	8.0 (8.4)	4.4 (1.0)	2	50.0	2	50.0
Other/unspecified	4	3.4	6.5 (6.1)	11.2 (8.0)	1	25.0	3	75.0
LCH^3	3	2.6	3.5 (0.8)	5.6 (3.0)	2	66.7	1	33.3
Data missing	10	7.9					2
Total/mean	126		6.9 (5.4)	8.7 (5.4)	42		74

¹DX = diagnosis; ²m = mean, SD = standard deviation; ³LCH = Langerhan's Cell Histiocytosis.

Table II. Clinical and non-clinical group characteristics.

	Clinical group N = 190	Non-clinical group N = 207
Site: Swedish (n)	103	208
Site: Icelandic (n)	87	–
Number of children/parent, mean	2.9	2.2***
Ethnicity
Swedish or Icelandic %	88.9	78.3*
Immigrant background %^1	11.1	21.7

	Mothers N = 114	Fathers N = 76	Mothers N = 119	Fathers N = 88
Educational status, n (%)
Compulsory school^2	20 (17.5)	15 (19.7)	11 (9.2)	13 (14.9)
Upper secondary	44 (38.6)	22 (28.9)	55 (46.2)	27 (31.0)
College/university	50 (43.9)	39 (51.4)	53 (44.6)	47 (54.0)
Data missing	0 (0.0)	0 (0.0)	0 (0.0)	2 (1.0) ^3
Utilised psychosocial support^3, n (%)	60 (52.6)	22 (28.9)*	n.a.^4	n.a.
Number of contacts: 1	9 (15.0)	6 (7.9)	n.a.	n.a.
Number of contacts: 2	7 (11.7)	3 (13.6)	n.a.	n.a.
Number of contacts: 3	6 (10.0)	4 (18.2)	n.a.	n.a.
Number of contacts: 4–10	22 (36.7)	5 (22.7)	n.a.	n.a.
Number of contacts: 11–20	6 (10.0)	2 (9.1)	n.a.	n.a.
Number of contacts: 21 or more	3 (5.0)	0 (0.0)	n.a.	n.a.
Data missing	8 (13.3)	7 (31.9)	n.a.	n.a.

¹Non-Nordic background; ²9-year compulsory school; ³data missing in non-clinical reference group about sex for one and about education for one parent; ⁴Not applicable, * = p < 0.05. ** = p < 0.01, *** = p < 0.001

Table III. PPD-C^a and GHQ^b distress outcomes of 190 parents in the clinical group.

Variable	No of items	Response format (Likert scale)	Illness-specific or general^c	Cronbach's alpha	Mean (SD)	N
Uncertainty	21	4-point	IS	0.95	2.80 (0.81)	179
Loss of control – personal functioning	10	2-point	IS	0.83	1.29 (0.28)	184
Loss of control – parenting of patient’	9	2-point	IS	0.79	1.32 (0.28)	184
Loss of control – parenting of sibling(s)	10	2-point	IS	0.89	1.40 (0.32)	167
Self-esteem	4	3-point	G	0.70	1.63 (0.51)	186
Anxiety	17	4-point	G	0.94	2.26 (0.65)	186
Disease-related fear	11	4-point	IS	0.89	2.04 (0.65)	186
Loneliness	8	4-point	IS	0.90	2.04 (0.70)	186
Sleep disturbances	5	2-point	IS	0.77	1.50 (0.34)	183
Depression	10	4-point	G	0.76	1.93 (0.50)	187
Psychological & physical distress	20	4-point	G	0.94	1.70 (0.58)	185
GHQ-12	12	4-point	G	0.88	20.86 (5.95)	187

^aParental Psychosocial Distress in Cancer, ^bGeneral Health Questionnaire, ^cIS = illness-specific; G = general.

Table IV. Regression derived coefficients and significance level of the effect of sense of coherence on distress factors among parents of childhood cancer survivors.¹

Distress variable	n	R^2	β	F
Uncertainty	178	0.094	−0.197	9.07***
Loss of control – personal functioning	184	0.221	−0.471	25.70****
Loss of control – parenting the patient	184	0.170	−0.413	18.5****
Loss of control – parenting sibling(s)	167	0.170	−0.412	16.8****
Self-esteem (low)	186	0.291	−0.520	37.6****
Anxiety	186	0.418	−0.647	65.8****
Disease-related fear	185	0.202	−0.431	23.0****
Loneliness	185	0.366	−0.608	52.5****
Sleep disturbances	183	0.251	−0.502	30.2****
Depression	187	0.422	−0.653	67.20****
Physical and psychological distress	185	0.422	−0.718	95.7****
GHQ total score	186	0.512	−0.790	164.7****

¹Univariate linear regression model, adjusted for time elapsed since diagnosis. * = p < 0.05, ** = p < 0.01, *** = p < 0.001, **** = p < 0.0001.