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Table 1 Overview of study endpoints and measures

From: End-of-life and bereavement support to families in cancer care: a cross-sectional survey with bereaved family members

Study endpoints

Measure

# Items

Score range

Score type

Cronbach’s α

Quality of support

Quality of family support

ICEland Family Perceived Support Questionnaire (ICE-FPSQ)1

14

14–70

Sum

.92

 

ICE-FPSQ Cognitive subscale

5

5–25

Sum

.86

 

ICE-FPSQ Emotional subscale

9

9–45

Sum

.90

Quality of EoL care

CANadian Health Care EvaLuation Project– Bereavement version (CANHELP)2*

24

1–5

Mean

.93

Quality of BER support

Adapted Evaluation of Grief Support Services Tool3

11

Categorical

Raw

n/a

Support providers

Provider Support Assessment Tool4

7

Binary

Raw

n/a

Needs

Fulfillment of needs

Needs Assessment of Family Caregivers– Bereaved to Cancer (NAFC-BvC)5*

20

0–16

Mean

>.76

Bereavement and health outcomes

Coping

Meaning-Making questions6

3

1–5

Mean

n/a

Resilience

Brief Resilience Scale (BRS-6)7

6

1–5

Mean

.85

Grief intensity

Brief Grief Questionnaire (BGQ-5)8*

5

0–10

Sum

.75

Self-perceived health

Self-developed questions9

3

0-100

Raw

n/a

  1. Note. * Translated with permission from English into German using a forward-backward translation procedure [22]; EoL = End-of-Life; BER = Bereavement; n/a = not applicable. The comprehensibility of the survey (M ± SD: 3.9 ± 0.9) and appropriateness of time requirements (M ± SD: 3.5 ± 1.1) were rated as rather high [i.e., 1 = low comprehensibility / appropriateness; 5 = high comprehensibility / appropriateness]
  2. 1 ICE-FPSQ = “ICEland Family Perceived Support Questionnaire” care [i.e., 14 = low quality of received support; 70 = high quality of received support], “ICE-FPSQ Cognitive subscale” care [i.e., 5 = low quality of received cognitive support; 25 = high quality of received cognitive support], “ICE-FPSQ Emotional subscale” care [i.e., 9 = low quality of received emotional support; 45 = high quality of received emotional support] [23, 24]
  3. 2 CANHELP = “CANadian Health Care EvaLuation Project– Bereavement version” [i.e., 1 = low satisfaction with EoL care; 5 = high satisfaction with EoL care] [25]
  4. 3 Questions assessing grief support evaluation, adopted with permission from the “Family Evaluation of Bereavement Services” (FEBS, Question 1) and the “Evaluation of Grief Support Services (EGGS, Questions 2–10) by the National Hospice and Palliative Care Organization, and Gallagher, Tracey, and Miller (2005) (Question 11) [26, 27]
  5. 4 Self-developed questions assessing received support by the different types of health professional groups: “Who of the following health professional groups (i.e., nurses, physicians, medicinal assistant, chaplains, therapists, social workers, and others) provided support to you?”, [i.e., yes / no]
  6. 5 NAFC-BvC = “Needs Assessment of Family Caregivers– Bereaved to Cancer” [i.e., 0 = high fulfillment; 16 = no fulfillment] [28]
  7. 6 “Meaning-making question”, “Benefit-finding question”, Identity change question” assessing meaning throughout the grieving process [i.e., 1 = no sense / low benefit / not different; 5 = good deal of sense / great benefit / very different] [30]
  8. 7 BRS-6 = “Brief Resilience Scale” [i.e., 1 = low resilience; 5 = high resilience] [31, 32]
  9. 8 BGQ-5 = “Brief Grief Questionnaire” [i.e., 0 = no impairment; 10 = high impairment] [33]
  10. 9 Self-developed questions assessing “State of health”: “How is your current state of health?”, “Well-being”: “How is your current well-being?”, and “Stress-level”: “How is your current level of stress?” [i.e., 0 = low state of health / low well-being / low stress-level; 100 = high state of health / high well-being / high stress-level]
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BMC Health Services Research

ISSN: 1472-6963

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