Objective
In recent years, with the development of home mechanical ventilator (HMV) technology, patients in need of ventilatory support have become cared at home. However, the HMV is uncomfortable, bulky, economically burdensome, and make great limitations on the lives of the patients and their caregivers. The purpose of this study is to investigate the burden of caregivers of community-dwelling patients using HMV through questionnaires.
Methods
A total of 136 patients using HMV and their caregivers or family members answered the questionnaire. The questionnaire is composed of 2 sections, each of which consisted of the status of patient care and the burden on caring. At the same time, the Korean version of Short Form Zarit Burden Interview (K-ZBI-12) and 3-Level version of EuroQol-5 Dimension (KEQ-5D-3L) were investigated to measure the burden on caring and the life quality of caregivers. The KEQ-5D-3L score was recalculated by the weighted formula for each item in the Korean population. Except for some missing portion, collected data were statistically analyzed.
Results
Demographics and descriptive data are shown in Table 1. Main caregivers were family members in 50 (37.9%), professional caregivers in 34 (25.8%) or both in 48 (36.4%) patients. Only one caregiver was taking care of the patients in 39 cases (29.5%). Caregivers responded that position change and patients' discomfort are one of the most burdensome for them. Majority of family members reported that more financial support and consumables are needed. More than half of the responders answered that patients’ immobility, reduced free time and increased financial burden are the most difficult parts after using HMV. The detailed responses are listed in Table 2. The K-ZBI-12 score showed a weak negative correlation with KEQ-5D-3L score (p=0.000). Patients’ age and financial burden from both medical and nursing cost also showed weak positive correlations with K-ZBI-12 scores (p=0.007, 0.000 and 0.000, respectively), but not with KEQ-5D-3L score. The more caregivers care for the patients, the lower K-ZBI-12 score (p=0.000). Caregivers who are caring the patients using invasive ventilation showed lower KEQ-5D-3L score than the others (p=0.001). Duration of HMV use and patients’ weight affected neither K-ZBI-12 nor KEQ-5D-3L score (Table 3).
Conclusion
In this study, we looked at the needs of caregivers and family members of the patients using HMV. Life quality and care burden of the caregivers and family members were affected by various properties of the patients. We hope this study will help identify the institutional, economic and medical services, community-dwelling patients using HMV and their caregivers need. |
