Caring for individuals using home ventilators: an appraisal by family caregivers

This article describes a study of the effects of caregiving on family members who assumed primary responsibility for managing the care of ventilator-assisted individuals in the home. Thirteen caregivers were interviewed and five variables associated with their role were assessed: caregiving tasks, burden of caregiving, impact of caregiving, mastery of the caregiving role, and satisfaction with caregiving. Data were collected using the Caregiving Appraisal Scale (CAS), a list of caregiving tasks, and a semistructured interview. Caregivers assumed multiple responsibilities for individuals who were completely ventilator-dependent (n = 5), partially ventilator-dependent (n = 3), or nocturnally ventilated (n = 5). Caregivers reported feeling moderate levels of both the burden and the negative impact of caregiving but a positive sense of mastery and satisfaction. They described problems with home healthcare nurses, insurance coverage, and equipment suppliers. Lack of preparation, in terms of education provided by healthcare professionals, limited their ability to manage these problems quickly and effectively. Caregivers suggested that healthcare providers expand discharge planning to include provision of problem-solving strategies.