Validation of two short versions of the Zarit Burden Interview in the palliative care setting: a questionnaire to assess
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ORIGINAL ARTICLE
Validation of two short versions of the Zarit Burden Interview in the palliative care setting: a questionnaire to assess the burden of informal caregivers Martina B. Kühnel 1
&
Christina Ramsenthaler 1 & Claudia Bausewein 1 & Martin Fegg 1
&
Farina Hodiamont 1
Received: 5 June 2019 / Accepted: 29 December 2019 # The Author(s) 2020
Abstract Purpose Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC. Methods In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer. Results Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach’s α = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers’ burden higher than self-ratings (average measures ICC = 0.51; CI = 0.23–.69; p = 0.001). Conclusion The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden. Keywords Caregivers . Caregiver burden . Palliative care . Validation studies . Zarit burden interview . Psychometrics
Introduction According to the WHO definition, palliative care (PC) addresses the needs of patients and offers a support system to help the family cope during the patients’ illness and in bereavement [1]. Not only family members but also friends or neighbours can be involved in taking care of a patient, and as Electronic supplementary material The online version of this article (https://doi.org/10.1007/s00520-019-05288-w) contains supplementary material, which is available to authorized users. * Martina B. Kühnel [email protected] 1
Department of Palliative Medicine, Munich University Hospital, LMU Munich, Munich, Germany
long as their support is not financially rewarded, they can be defined as informal caregivers [2]. Informal caregivers can become “patients” themselves, as their psychological morbidity is substan
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