Factors Associated with Quality of Life among Primary Family Caregivers of Patients Receiving Long-Term Home Mechanical Ventilation: A Cross-Sectional Secondary Data Analysis in Taiwan

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Abstract

Background With the increasing number of patients requiring prolonged mechanical ventilation (PMV), home mechanical ventilation (HMV) has become an increasingly important model of care. As a result, primary family caregivers are exposed to sustained and intensive caregiving responsibilities, raising growing concerns regarding their quality of life (QoL). This study aimed to examine the QoL of primary family caregivers of patients receiving long-term HMV and to analyze the associations between caregivers’ QoL and demographic characteristics, caregiving burden, and social support. Methods This study conducted a secondary data analysis using questionnaire data obtained from a prior survey entitled “Caregiving Burden, Needs, and Decision-Making among Primary Family Caregivers of Patients Receiving Long-Term Home Mechanical Ventilation.” A total of 410 valid questionnaires were analyzed. Participants were primary family caregivers residing in northern, central, and southern Taiwan who had provided care for patients receiving home mechanical ventilation for at least 60 days. Measures included caregivers’ demographic characteristics, physical, psychological, social, and financial caregiving burden, social support (family, relatives, and other sources), and quality of life. Descriptive statistics, Pearson’s correlation analysis, and multiple linear regression analyses were performed using SPSS version 22.0. Results Most caregivers were female, middle-aged or older, and co-residing with the patient. The average daily caregiving time was 13.25 hours. The mean overall QoL score was 2.94, indicating a level between “poor” and “moderate.” Pearson’s correlation analysis showed a significant negative association between daily caregiving time and QoL (r = − 0.285, p < 0.001). Multiple regression analyses revealed that, after controlling for demographic variables, physical burden, social burden, and financial burden were all significantly and negatively associated with QoL, whereas family support demonstrated a stable and significant positive association. In contrast, psychological burden did not show an independent significant effect after other caregiving burden and social support variables were included in the model. Although household income was positively associated with QoL in the initial model, this association became non-significant after caregiving burden and social support were simultaneously considered. Conclusions Primary family caregivers of patients receiving long-term HMV are chronically exposed to high-intensity caregiving demands, and their quality of life is primarily shaped by the level of caregiving burden and the availability of family support. The findings suggest that primary caregivers should be recognized as a high-risk population with independent health risks. From both practice and policy perspectives, in addition to financial assistance, it is essential to strengthen respite services, family support, and the integration of healthcare and long-term care systems in order to effectively reduce caregiving burden, improve caregivers’ quality of life, and enhance the sustainability of home mechanical ventilation care systems.

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