Table 2 Overview of measured variables collected during on-going palliative care and one year after the patient’s death

Family member demographics

Age, gender, living and family conditions, education, country of birth, relationship to the patient, and main occupation

*

Health-related quality of life

The EuroQol-5D (EQ-5D), including five subscales: mobility, self-care, pain, usual activities, and psychological status; 3-point response scale: 1 (no problems) - 3 (severe problems).

An index score was calculated for each respondent’s health status: 1 = full health; −  0.594 = worst-imaginable health state

[21]

General quality of life: one question (of 100) from the WHO QOL 100 instrument; 5-point scale: 1 (very poor) – 5 (very good)

[22]

General health: one overall question from the SF-36 (a 36-item short-form health survey questionnaire); 5-point scale: 1 (excellent health) – 5 (poor health)

[23]

Stress and coping

Stress: two (of ten) items from the Perceived Stress Scale (PSS) (felt nervous and “stressed”; difficulties were piling up so high that you could not overcome them); 5-point scale: 0 (never) – 4 (very often)

[24]

Worry about personal finances during the last month: 5-point scale: 0 (never) – 4 (very often)

*

Self-efficacy: One statement (of ten; I can solve most problems if I invest the necessary effort) from the General Self-Efficacy Scale (GSE); 4-point scale: 1 (not at all true) – 4 (exactly true)

[25, 26]

Religious or existential belief that helps the informant to cope with problems: One statement; 4-point scale: 1 (not at all true) – 4 (exactly true)

*

Attachment security

the Experiences in Close Relationships scale (ECR-M16); 16 items to measure attachment anxiety (fear of rejection and abandonment) and avoidance (discomfort with closeness and dependence on close others) in close relationships (including non-romantic partners); 7-point scale: 1 (lower attachment insecurity) - 7 (greater attachment insecurity)

[27]

Situation as family member to a severely ill person

Type of support/care the family member provided to the ill person: eight alternatives; yes/no (see Table 1)

*

Extent of support the family member provided to the ill person: one question; 6-point scale: 1 (around-the-clock) – 6 (no need of support)

*

Geographical distance between housing of patient and family member: one question; 6-point scale: 1 (same household) - 6 (more than 1-h distance)

*

The family member’s perception of being a family caregiver: the COPE questionnaire: 15 questions; 4 point scale: 1 (never) – 4 (always) based on 3 validated sub-scales: Negative impact scale, Positive value scale and Quality of support scale

[28]

Possibility of respite if family member needed a break: one question; 3-point scale: 1 (no) – 2 (yes, with some difficulty) – 3 (yes, easy)

*

Possibility of respite if family member became ill: one question; 3-point scale: 1 (no) – 2 (yes, with some difficulty) – 3 (yes, easy)

*

Support from family, relatives, and friends

The family member’s perception of support from members within the closest family: one question; 6-pointscale: 1(never) – 6 (always)

*

The family member’s perception of support from other family members, relatives or friends: one question; 6-pointscale: 1(never) – 6 (always)

*

The family member’s perception of support to patient from other family members, relatives or friends: one question; 6-pointscale: (1 (never) - 6 (always))

*

Sense of security in palliative care

The family members’ sense of security with palliative care: The sense of security in care-Relatives’ Evaluation instrument (15-item instrument (6-point scale: 1 (never) - 6 (always) based on 3 validated sub-scales: Care Interaction (eight items), Mastery (four items) and Patient Situation (three items)

[20]

Time (days) from commencement of palliative home care services () to the interview (with the family member)

Medical records

Patient characteristics

Demographics: age, gender, living and family conditions, and country of birth.

*

Diagnosis: the patient’s diagnosis and the time since diagnosis.

Medical records

(Family member’s perception of) Patient having difficulties with memory: one questions; 5-point response scale: 1 (never) – 5 (very often)

*

(Family member’s perception of) Patient having changed behavior: one questions; 5-point response scale: 1 (never) – 5 (very often)

*

Well-being during bereavement

The EuroQol-5D (EQ-5D), see above “Health-related quality of life” domain

[21]

General quality of life, one question from the WHO QOL 100 instrument, see above

[22]

General health: one overall question from the SF-36, see above “Health-related quality of life” domain

[23]

Psychological well-being previous 2 weeks: The WHO-5 Well-being Index 6–30 (five items; 6-point scale: 1(‘at no time’) – 6 (‘all of the time’))

[29]

Stress: two (of ten) items from the Perceived Stress Scale (PSS); see above “Stress and coping” domain

[24]

Had own contact with healthcare because of the death of the patient (that received care by the palliative care unit); 4-point scale: 1(never) - 4(> 5 times)

*

Complicated grief symptoms: Inventory of complicated grief screen (ICGS) is a 9-item shortened version of the original ICG; 5-point scale: 1(never) - 5(always)

[30, 31]