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Keywords:

  • caregiver;
  • palliative care;
  • neoplasms;
  • measures;
  • reward;
  • burden

Abstract

Objective: The aims of this study were to validate an instrument for measuring bereaved family members' perceptions of caregiving consequences and to examine the association between caregiving consequences and psychological distress.

Methods: Cross-sectional questionnaires were administered to family members of patients who had died in regional cancer centers. We measured the Caregiving Consequences Inventory (CCI), respondent's optimism, overall reward scale, and psychological distress and collected background data. A retest was conducted.

Results: Bereaved families from two regional cancer centers were surveyed (N=189 and 109; effective response rate, 57 and 80%). By exploratory and confirmatory factor analyses, we identified four perceived reward domains: ‘mastery’, ‘appreciation for others’, ‘meaning in life’, and ‘reprioritization’, and one perceived burden domain. Although the four reward domains were highly correlated with each other (0.47<r<0.69), the 4-domain model was superior. The respondents with less education, strong faith, and less optimism reported fewer perceived rewards, thus demonstrating known group validity. In addition, perceived reward had little or no correlation with psychological distress. The psychometric properties of this scale were good (α=0.78–0.93, ICC=0.60–0.73) and construct validity was supported (GFI=0.929; AGFI=0.819; CFI=0.749; RMSEA=0.097).

Conclusions: The CCI is valid for measuring caregiving consequences from the bereaved family member's perspective in Japan. Furthermore, it is important to use perceived rewards and burdens as a measure of caregiving consequences for improving the quality of the caregiving and bereavement experience. Copyright © 2008 John Wiley & Sons, Ltd.