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Table 3 Overview of measures. The five domains potentially related to the dependent variable (The family members’ sense of support within the closest family) were evaluated by the variables listed in the table

From: Sense of support within the family: a cross-sectional study of family members in palliative home care

Variable domain (relating subsystem or suprasystem)

Measures

Origin

I. Family member characteristics

(SUBSYSTEM

Family member - Closest family)

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

a

Health-related quality of life: The EuroQol-5D (EQ-5D), including: mobility, self-care, pain, usual activities, psychological status; 3-point response scale: 1 (no problems) - 2 (some problems) - 3 (severe problems). Index score was calculated for each respondent’s health status: 1 = full health; −  0.594 = worst-imaginable health state

1

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

2

General health: one overall question from the SF-36; 5-point scale: 1 (excellent health) – 5 (poor health)

3

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)

a

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)

a

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

4

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

a

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

a

Attachment security: The Experiences in Close Relationships scale (ECR-M16); 16 items to measure

attachment anxiety (fear of rejection and abandonment); mean value of 8 items and avoidance (discomfort with closeness and dependence on close others; mean value of 8 items) in close relationships (including non-romantic partners); 7-point scale: 1 (lower attachment insecurity) - 7 (greater attachment insecurity)

5

Stress and coping:

Stress: two (of ten) items from the Perceived Stress Scale (PSS); 5-point scale: 0 (never) – 4 (very often)

6

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

a

Self-efficacy: One statement (of ten) from the General Self-Efficacy Scale (GSE); 4-point scale: 1 (not at all true) – 4 (exactly true)

7,8

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)

a

II. Patient characteristics (SUBSYSTEM: Family member - Closest family)

Patient demographics: age, gender, living and family conditions, country of birth, geographical distance to family member

a

Patient illness:

Patient diagnosis and the time since diagnosis.

b

Patient having difficulties with memory (according to the family member’s perception): one question;5-point response scale: 1 (never) – 5 (very often)

a

Patient having changed behaviour: one question; 5-point response scale (according to the family member’s perception): 1 (never) – 5 (very often)

a

III. Other more distant family members’ support to the interviewed family member

(SUBSYSTEM: Family member - Other more distant family members (than the closest family))

The family member’s perception of support from members of the family, relatives and friends other than those closest to them: one question; 6-point response scale: 1 (never) – 6 (always)

a

IV. Other family members’ support to the patient

(SUBSYSTEM: Patient - Other family members (than the interviewed family member)

The family members’ perception of the patient being supported by family members other than those who were interviewed: one question; 6-point response scale: 1 (never) - (always)

a

V. Sense of security in palliative home care

(SUBSYSTEM: Family member – Palliative home care unit)

The family members’ sense of security with palliative care: The sense of security in care-Relatives’ Evaluation instrument (SEC-R;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)

9

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

b

  1. aDeveloped by the authors, bMedical record
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BMC Palliative Care

ISSN: 1472-684X

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