Caregiving Strain Mediates the Relationship Between Terminally Ill Patient's Physical Symptoms and Their Family Caregivers’ Wellbeing: A Multicentered Longitudinal Study

Abstract

Objectives: Research considered patient outcomes primarily over caregivers in end-of-life care settings. The importance of family caregivers (FCs) in end-of-life care draws growing awareness, evidenced by an increasing number of evaluations of caregiver-targeted interventions. Little is known of FCs’ collateral benefits in patient-oriented home-based end-of-life care. The study aims to investigate FC outcomes and change mechanisms in patient-oriented care. Methods: A pre-post-test study. We recruited FCs whose patients with a life expectancy ≤ 6 months enrolled in home-based end-of-life care provided by service organizations in Hong Kong. Patients’ symptoms, dimensions of caregiving strain (ie, perception of caregiving, empathetic strain, adjustment demands), and aspects of FCs’ wellbeing (ie, perceived health, positive mood, life satisfaction, spiritual well-being) were measured at baseline (T₀) and 3 months later (T₁). Results: Of the 345 FCs at T₀, 113 provided T₁ measures. Three months after the service commenced, FCs’ caregiving strain significantly reduced, and their positive mood improved. Alleviation of the patient's physical symptoms predicted FC better outcomes, including the perception of caregiving, empathetic strain, and wellbeing. Changes in perception of caregiving mediated the effects of changes in patients’ physical symptoms on FCs’ changes in life satisfaction and spiritual wellbeing. Changes in empathetic strain mediated the changes between patient's physical symptoms and FCs’ positive mood. Conclusions: Collateral benefits of patient-oriented home-based end-of-life care were encouraging for FCs. Patient's physical symptom management matters to FCs’ caregiving strain and wellbeing. The active ingredients modifying FCs’ perception of caregiving and addressing empathetic strain may amplify their benefits in wellbeing.