Perceived burden and need for support among caregivers of cancer patients

Figures & data

Figure 1. Proportions of caregivers with high caregiver burden (n = 184). Measured by caregiver reaction assessment (CRA), a lower score on the caregiver esteem subscale indicates a higher burden (<4 = high burden) and for the four other subscales a higher score indicates a higher burden (≥3 = high burden). Numbers included varies because of missing data (n = 183–184).

Figure 2. Proportions of caregivers reporting need of support (n = 182). Numbers included varies because of missing data (n = 178–182).

Table 1. Characteristics of the caregiver participants (n = 185).

Variables	n (%)	Median (range)
Age (years)		58.0 (18–81)
Sex
Male	108 (58)	–
Female	77 (42)	–
Relationship to cancer patient (n = 183)
Spouse/cohabitant/partner	152 (83)	–
Adult children	14 (8)	–
Parent	13 (7)	–
Friend	3 (2)	–
Sister	1 (1)	–
Education (n = 184)
Low (≤13 years)	66 (36)	–
High (>13 years)	118 (64)	–
Work status
Full/part time	106 (57)	–
Retired	47 (26)	–
Sick leave/disability benefits/other	32 (17)	–
Comorbidity^a (n = 176)
No	126 (72)	–
Yes	50 (28)	–
Medical factors related to the cancer patients
Diagnosis (n = 183)
Breast	64 (35)	–
Gastrointestinal	20 (11)	–
Lymphoma	17 (9)	–
Brain tumor	16 (8)	–
Prostate	13 (7)	–
Gynecological	13 (7)	–
Bone marrow	13 (7)	–
Other	27 (15)	–
Months since diagnosis (n = 154)		24.4 (2.9–349.7)
Recurrence (n = 180)
No	125 (69)	–
Yes	55 (31)	–

Numbers may not add up to 185 because of missing data.

^aComorbidity defined as any long lasting (>12 months) physical and/or mental condition which had led to reduced daily function.

Table 2. Level of caregiver burden (n = 184).

Caregiver reaction assessment (CRA)^a	Mean (SD)	Range
Caregiver esteem (5–1) (n = 184)	4.2 (0.47)	3.0–5.0
Impact on health (1–5) (n = 183)	2.1 (0.76)	1.0–4.5
Impact on schedule (1–5) (n = 183)	2.6 (1.03)	1.0–5.0
Impact on finances (1–5) (n = 183)	2.0 (0.86)	1.0–5.0
Lack of family support (1–5) (n = 183)	2.1 (0.79)	1.0–4.4

Numbers included varies because of missing data.

^aHigher score indicates a higher burden of caregiving, except for caregiver esteem, where a low score indicates higher burden.

SD: standard deviation

Table 3. Factors associated with level of caregiver burden in caregiver reaction assessment subscales in linear regression analyses.

		Univariate linear regression analyses			Multivariate linear regression analyses
	Mean (SD)	Regression coefficient (B)	p	95% CI	Regression coefficient (B)	p	95% CI
(1) Caregiver esteem*
Sex (male = ref)	4.2 (0.5)
Female	4.2 (0.5)	−0.09	0.22	−0.23−0.05	−0.11	0.21	−0.27−0.06
Age (years)		−0.002	0.45	−0.007−0.003	−0.003	0.39	−0.01−0.004
Education (<13 years = ref)	4.3 (0.4)
>13 Years	4.2 (0.5)	−0.08	0.25	−0.23−0.06	−0.14	0.13	−0.31−0.04
Comorbidity^a (no = ref)	4.2 (0.5)
Yes	4.2 (0.5)	−0.05	0.55	−0.21−0.11	0.05	0.60	−0.14−0.23
Recurrence for the cancer patient (no = ref)	4.2 (0.5)
Yes	4.2 (0.5)	−0.05	0.51	−0.20−0.10	−0.02	0.84	−0.21−0.17
Time since diagnosis for the cancer patient (months)		−0.001	0.072	−0.003–0.0	−0.001	0.40	−0.003– 0.001
(2) Impact on health
Sex (male = ref)	1.9 (0.6)
Female	2.3 (0.9)	0.4	<0.001	0.18−0.62	0.21	0.05	0.0−0.42
Age (years)		−0.01	0.021	−0.02–−0.002	−0.01	0.009	−0.02–−0.003
Education (<13 years = ref)	2.1 (0.8)
>13 Years	2.0 (0.7)	−0.03	0.80	−0.26− 0.20	0.12	0.30	−0.11−0.34
Comorbidity^a (no = ref)	1.8 (0.6)
Yes	2.6 (0.8)	0.83	<0.001	0.61−1.05	0.84	<0.001	0.60−1.07
Recurrence for the cancer patient (no = ref)	2.0 (0.8)
Yes	2.2 (0.7)	0.19	0.12	−0.05−0.43	0.22	0.07	−0.022−0.46
Time since diagnosis for the cancer patient (months)		−0.002	0.046	−0.005−0.00	−0.002	0.12	−0.004−0.0
(3) Impact on schedule
Sex (male = ref)	2.5 (0.9)
Female	2.7 (1.1)	0.27	0.08	−0.04−0.57	−0.01	0.94	−0.32−0.30
Age (years)		−0.022	<0.001	−0.03– −0.1	−0.023	<0.001	−0.035–−0.01
Education (<13 years = ref)	2.5 (1.0)
>13 Years	2.7 (1.0)	0.23	0.15	−0.09−0.54	0.39	0.022	0.06–0.71
Comorbidity^a (no = ref)	2.4 (1.0)
Yes	3.1 (1.0)	0.67	<0.001	0.34–1.0	0.67	<0.001	0.32−1.02
Recurrence for the cancer patient (no = ref)	2.5 (1.0)
Yes	2.8 (1.0)	0.31	0.06	−0.02−0.64	0.45	0.013	0.10−0.81
Time since diagnosis for the cancer patient (months)		−0.005	0.004	−0.008–−0.001	−0.004	0.016	−0.01– −0.001
(4) Impact on finance
Sex (male = ref)	1.9 (0.8)
Female	2.2 (1.0)	0.35	0.006	0.10−0.60	0.24	0.07	−0.02−0.51
Age (years)		−0.012	0.016	−0.02−0.002	−0.012	0.021	−0.23– −0.002
Education (<13 years = ref)	2.1 (0.9)
>13 Years	2.0 (0.8)	−0.09	0.51	−0.35−0.17	−0.05	0.71	−0.23−0.33
Comorbidity^a (no = ref)	1.9 (0.8)
Yes	2.4 (0.9)	0.51	<0.001	0.24−0.79	0.40	0.007	0.11–0.70
Recurrence for the cancer patient (no = ref)	1.9 (0.8)
Yes	2.2 (1.0)	0.31	0.025	0.04−0.59	0.22	0.150	−0.08−0.52
Time since diagnosis for the cancer patient (months)		0.00	0.942	−0.002−0.003	0.00	0.75	−0.003−0.002
(5) Lack of family support
Sex (male = ref)	2.1 (0.7)
Female	2.1 (0.8)	0.06	0.61	−0.17−0.29	−0.08	0.55	−0.33−0.18
Age (years)		−0.007	0.14	−0.02−0.002	−0.01	0.046	−0.02− 0.00
Education (<13 years = ref)	1.9 (0.8)
>13 Years	2.2 (0.8)	0.23	0.06	−0.01−0.47	0.26	0.056	−0.007−0.53
Comorbidity^a (no = ref)	2.0 (0.7)
Yes	2.3 (0.9)	0.35	0.007	0.1−0.61	0.28	0.053	−0.003−0.56
Recurrence for the cancer patient (no = ref)	2.0 (0.8)
Yes	2.1 (0.7)	0.06	0.63	−0.19−0.31	0.06	0.67	−0.22−0.35
Time since diagnosis for the cancer patient (months)		0.00	0.942	−0.003– 0.002	0.00	0.90	−0.003– 0.003

Numbers included varies in the multivariate analyses were 140–141.

*Higher score indicate a higher burden of caregiving (scale range 1–5), except for caregiver esteem, where a low score indicates higher burden.

^aComorbidity defined as any long lasting (>12 months) physical and/or mental condition which had led to reduced daily function.

Values in bold are statistically significant.

Table 4. Factors associated with increasing need for information and support (range 0–13) in linear regression analyses.

		Univariate linear regression analyses			Multivariate linear regression analyses
	Mean (SD)	Regression coefficient (B)	p	95% CI	Regression coefficient (B)	p	95% CI
Sex (male = ref)	4.4 (3.0)
Female	5.5 (3.5)	1.12	0.019	0.18−2.06	0.76	0.104	−0.16– 1.67
Age		−0.059	0.001	−0.1–−0.02	−0.076	<0.001	−0.11– −0.04
Education (<13 years = ref)	4.9 (3.4)
>13 Years	4.8 (3.1)	−0.12	0.82	−1.1−0.86	−0.14	0.77	−1.1−0.82
Comorbidity^a (no = ref)	4.6 (3.1)
Yes	5.5 (3.6)	0.92	0.09	−0.14−1.99	1.04	0.04	0.03−2.05
Recurrence for the cancer patient (no = ref)	4.5 (3.1)
Yes	5.6 (3.1)	1.08	0.033	0.09−2.08	1.34	0.012	0.30−2.38
Time since diagnose for the cancer patient (months)		0.00	0.924	−0.01–0.01	0.001	0.89	−0.009– 0.01

Numbers included in the multivariate analyses were 141.

^aComorbidity defined as any long lasting (>12 months) physical and/or mental condition which had led to reduced daily function.

Values in bold are statistically significant.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy and ethical restrictions.