The Public's Aversion to End-of-Life Care-Recipient Burden: The Findings and Psychometric Properties of a New Measurement Instrument

Abstract

Prior research indicated that receiving end-of-life care was a prevalent and intense source of distress but the full spectrum of concerns had not been captured by existing terms, theories, or psychometric measures. This thesis proposed the term ‘care-recipient burden’ and aimed to develop and test the psychometric properties of a Care-Recipient Burden Aversion Scale (CRBAS) and evaluate the responses of members of the New Zealand public. The CRBAS’s development involved a comprehensive review of the literature, collaborative discussions, and a small pilot study. The CRBAS, along with sociodemographic questions, and three vignettes describing the impact of end-of-life care on the care-recipient, their family, and society, were administered to 203 participants. 187 completed all sections. 124 participants completed a follow-up survey with the CRBAS after a three week interval. The CRBAS was evaluated for internal reliability, test-retest reliability, content validity, construct validity, and convergent validity. Potential sociodemographic predictors were also tested. Results indicated varied levels of aversion to different aspects of care-recipient burden. Number of children, number of siblings, relationship status, and the diagnosis of a condition expected to reduce the capacity to care for oneself emerged as potential predictors of carerecipient burden aversion. The CRBAS demonstrated good validity and reliability but the proposed three-factor structure (of concerns relating to the self, family, and society) was not supported by factor analyses. However, convergence between CRBAS and vignette responses supported deconstructing care-recipient burden based on the bearer of burden. Thematic analysis of qualitative comments recommended the CRBAS incorporate four additional themes. The measure was modified based on this study’s findings and a final version was proposed. This study indicated that members of the public are averse to the care-recipient role and associate a variety of concerns with the receipt of end-of-life care. More importantly, this study operationalised the multidimensional burden on care-recipients. Promising results suggest that this study’s conceptualisation and measure of care-recipient burden aversion may facilitate necessary progress in relevant research and clinical practice.