Caregrievers' endeavour : unfolding the dynamic coping process in end-of-life caregiving

Abstract

Caregiving is a pressing issue that significantly affects the quality of life for millions globally. Due to the ageing population, the estimated number of care-dependent individuals is expected to continue to soar in the coming decades. With the overloaded healthcare system, the place of care is shifting from hospital to community. Family plays an integral role in supporting care-dependent individuals living in familiar environments, including those in their final stages of life. Providing end-of-life (EOL) caregiving to family members with terminal conditions can be a tremendously stressful experience. Denoting the finality of being with the beloved, rendering EOL caregiving involves not only managing increasing caregiving demands but simultaneously, dealing with grieving responses embedded in multiple losses and impending death. Expanding beyond the unilateral perspective on caregiving, this research adopts a bilateral view to acknowledge the duality in “caregrieving”.

This research is the first to explore caregriever coping in the EOL context and had three objectives: (1) identifying the core elements of coping in EOL caregiving; (2) developing a Caregriever Coping Questionnaire to measure caregrievers coping and its dynamic during EOL caregiving; and (3) testing coping and coping dynamic as mediators of the relationship between caregrieving stress and consequences. This research adopted a mixed-methods approach with an exploratory sequential design.

Study 1 was a qualitative study. Thirteen caregrievers participated in semi-structured interviews. The data were analysed using thematic analysis guided by an interpretive perspective. Three main themes emerged from the data: the structure of coping, the dynamic of coping, and the mechanism of coping. Two orientations, caregiving-oriented coping and grieving-oriented coping, formed the backbone of caregrievers' dual process of coping. A conceptual model of caregriever coping was formulated to explain the interplays, and items were generated for questionnaire development to assess caregriever coping.

Study 2 was a cross-sectional study that used the Caregriever Coping Questionnaire to test the model of caregriever coping, the coping dynamic in relation to caregrieving consequences in the EOL caregiving context. A preliminary assessment of the measurement’s structure and psychometric properties was conducted, with results indicating satisfactory model fit, internal consistency, reliability and construct validity. The findings from the 365 participants revealed the complex dynamic of caregriever coping, demonstrating associations among caregrieving stress, the dual orientation of coping, and consequences in caregrieving. Additionally, the study identified mediation pathways, in which caregriever coping and coping dynamic (i.e. variability, polarity, and oscillation) mediated the relationship between caregrieving stress and caregrieving consequences. Surprising findings also revealed that a strictly balanced deployment of caregiving-oriented and grieving-oriented coping may not yield optimal outcomes; however, a slight propensity toward grieving-oriented coping may be more beneficial to caregrievers during their journey.

This research pioneers a new understanding of the dual coping process in an EOL context, presenting a comprehensive conceptual framework to explore how caregrievers cope with their increasing demands in caregrieving. The current research uncovered the dynamic dual process of coping, revealed the implications of coping on caregrieving consequences, and offered essential insights to inform future research and clinical support for EOL caregrievers.