RESUMEN
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.
RESUMEN
OBJECTIVE: Living the final days of life being cared for at home is a preference expressed by many. The data on the effectiveness of home-based end-of-life care (EoLC) intervention to improve the holistic conditions of terminally ill patients are scanty. This study sought to evaluate a psychosocial home-based EoLC intervention for terminally ill patients in Hong Kong. METHODS: A prospective cohort study was conducted, applying the Integrated Palliative Care Outcome Scale (IPOS) at 3 timepoints (service intake, 1-month, and 3-months after enrollment). A total of 485 eligible, consenting terminally ill people (mean age = 75.48, SD = 11.39) were enrolled, with 40.21% (n = 195) providing data at all 3 timepoints for this study. RESULTS: Decreasing symptom severity scores were observed for all IPOS psychosocial symptoms, and most physical symptoms, over the 3 timepoints. Improvements in depression and practical concerns had the highest omnibus time effects (F > 31.92, P < .01) and T0 to T2 paired comparison effects (Cohen's d > 0.54, P < .01). Physical symptoms of weakness/lack of energy, poor mobility, and poor appetite also showed significant improvements at T1 and T2 (Cohen's d: 0.22-0.46, P < .05). Bivariate regression analyses showed that improvements in anxiety, depression, and family anxiety were associated with improvements in physical symptoms of pain, shortness of breath, weakness/lack of energy, nausea, poor appetite, and poor mobility. Patients' demographic and clinical characteristics were not associated with changes in symptoms. CONCLUSIONS: The psychosocial home-based EoLC intervention effectively improved the psychosocial and physical status of terminally ill patients, irrespective of their clinical characteristics or demographics.
