Background: While home mechanical ventilation (HMV) prolongs survival in selected groups of patients, its use is associated with progressive dependency in basic activities, and many users will require informal care in their homes. The workload assumed by the informal caregivers can have financial, physical, and psychological repercussions. Our objective was to study dependent patients on HMV, and to describe the impact of the situation on their caregivers.
Patients and methods: In November 2007, we undertook a descriptive cross-sectional study of patients in stable condition who had been receiving HMV for at least 6 months. Using the Katz index, we identified dependent patients (class C and higher). In this group we studied social and economic variables, comorbidity, and need for care. The Zarit interview was used to evaluate the caregiver burden.
Results: Of the 66 patients enrolled, 20 (30%) were dependent. The mean (SD) age in this group was 60 (12) years and 46% were women. These patients had been on HMV for a mean of 45 months, and 40% were using ventilatory support for over 12 hours per day. Care was provided by women in the majority of cases (77%), and 58% were sole caregivers. The mean age of these carers was 51 years, and 70% of them also worked outside the home. In 7 cases (35%), the caregiver scored over 40 on the Zarit index.
Conclusions: One third of the patients required informal care in order to remain in their homes. Most of the caregivers were women, and one third were overburdened or were at risk of becoming so. Changes involving both physicians and the health authorities are needed to provide satisfactory care to this group of patients.