Table 1 Variable domain 1. Family characteristics. Sample characteristics of the interviewed family members (n = 209) and analysis of the individual variables in Domain 1. Family characteristics (subsystem Family member -Closest family) in relation to the family members’ sense of support within the closest family (dependent variable)

I. Family member characteristics

(SUBSYSTEM Family member-Closest family)

Demographics: Age (in years)

60.5 [13.3];(21–87)

Gender: male/female

45%/55%

Married or partner/ single

89%/ 11%

Alone

11%

pos

with husband, wife or cohabitant

84%

with children

12%

neg

with siblings or others

3%

Have children

88%

Native born in Sweden

92%

Education (highest level completed) (1–6)

1(No formal)/ 2(Basic education only)/

3%/ 21%/

3(High school)/ 4(Vocational education/

22%/ 20%/

5(University< 3 years)/ 6(University 3 years or more)

9%/ 23%

Husband, wife or partner

64%

Child

31%

Other^b

6%

Employed

50%

Caring for family member with reimbursement

10%

Caring for family member without reimbursement

7%

Age pensioner

40%

pos

EQ 5D index (−0.594 (worst possible) – 1.00 (best possible))

0.74[0.23];(−0.02–1)

Mobility (1 (no problems - 3 (severe problems))

1.16[0.38];(1–3)

Self-care (1 (no problems - 3 (severe problems))

1.02[0.14];(1–2)

Usual activities (1 (no problems - 3 (severe problems))

1.10[0.32];(1–3)

Pain/Discomfort (1 (no problems - 3 (severe problems))

1.68[0.59];(1–3)

Anxiety/Depression (1 (no problems - 3 (severe problems))

1.68[0.58];(1–3)

neg

General health (from SF-36; 1(excellent) - 5 (bad))

2.79[1.11];(1–5)

General Quality of life (from WHO QOL 100; 1(very bad) - 5 (very good))

3.66[0.90];(1–5)

pos

Health care

63%

Physical, personal care

48%

Transport

74%

Emotional, social support

98%

Support in home and household

80%

Support with financial management

59%

Financial support

19%

Organise care and support

69%

Extent of support the family member provided to the ill person (1–6)

1(Around-the-clock)/ 2(Always daytime)/ 3(Several times per day

32%/ 10%/ 20%

4(Once per day)/ 5(Some time per week)/ 6(No need)

11%/ 7%/ 5%/ 13%

Family members’ perception of being a family caregiver

Negative impact (COPE^c_NEG) (4–28)

10.48[3.02];(7–22)

neg

Positive value (COPE_POS) (4–16)

14.08[1.81];(6–16)

pos

Quality of support (COPE_Support) (4–16)

12.58[2.60];(5–16)

pos

Possibility of respite if family member needed a break (1–3)

(1(no)/ 2(yes, with some difficulty)/ 3(yes, easy))

15%/ 43%/ 42%/

pos

Possibility of respite if family member turned ill (1–3)

(1(no)/ 2(yes, with some difficulty)/ 3(yes, easy))

21%/ 37%/ 42%

pos

Anxiety dimension (ECR-M16^c; 1–7)

2.81[1.05];(1–6.25)

neg

Avoidance dimension (ECR-M16; 1–7)

2.82[1.11];(1–6.25)

Nervousness and stress (from PSS^c; 1 (never) - 5 (very often))

3.0[1.18];(1–5)

neg

Too many problems to manage (from PSS; 1 (never) - 5 (very often))

2.19[1.11];(1–5)

Worry about private economy (1 (never) - 5 (very often))

1.70[1.11];(1–5)

Self-efficacy (from GSE^c; 1 (fully disagree) - 4 (fully agree))

3.28[0.67];(1–4)

Religious or existential faith that helps (1 (fully disagree) - 4 (fully agree))

2.26[1.08];(1–4)