Quality of Life and Well-Being of Family Caregivers of Prolonged Mechanically Ventilated Patients: An Observational Study

Abstract

Importance: Although previous studies have examined the impact of caregiving on the quality of life (QOL) of caregivers of home-ventilated patients, few studies have dealt with the QOL of caregivers of family members who require prolonged mechanical ventilation in long-term-care facilities.

Objective: To assess the personal experiences of caregivers of family members requiring prolonged mechanical ventilation by applying the Do-Live-Well framework to examine the potential associations among caregivers' QOL, well-being, level of burden, and participation.

Design: A descriptive and correlative cross-sectional single-center study.

Setting: A chronic ventilator-dependent division in a long-term acute-care facility.

Participants: Twenty-six family caregivers of patients requiring mechanical ventilation completed a series of questionnaires.

Outcome and measures: The World Health Organization Quality of Life-Brief, the Personal Wellbeing Index, the Zarit Burden Index, items measuring participation (from the Health Promotion Activities Scale and items based on the Do-Live-Well framework), and a sociodemographic questionnaire were administered.

Results: High burden was correlated with low well-being and lower social relations (a domain of QOL). The perception and meaning attributed to the role of caregiving were correlated with QOL. Participation in health-promoting activities was associated with well-being and QOL.

Conclusions and relevance: Participation in health-promoting activities and the caregivers' personal experiences were positively linked to QOL and well-being and linked negatively to burden. Although these findings require further investigation, they also point to the importance of developing occupational therapy support programs for family caregivers of mechanically ventilated patients. Plain-Language Summary: Caregivers of family members who require prolonged mechanical ventilation bear a heavy burden that can affect their quality of life. For this study 26 caregivers of family members hospitalized in a long-term acute care facility completed questionnaires on their quality of life, well-being, burden, participation in activities, and perceptions of their caregiving role. We found that quality of life was enhanced by participation in health-promoting activities and influenced by the caregivers' personal experiences and burden. Occupational therapy interventions should be designed to improve the quality of life of caregivers and to identify caregivers who are at risk of any negative effects on their quality of life and well-being.