Home-based ventilator-dependent patients: measurement of the emotional aspects of home caregiving

Abstract

Objective: To explore the concept of caregiving appraisal with the primary family caregivers of home-based ventilator-dependent patients and test the internal consistency of instruments to measure functional dependency of the patient and caregiving appraisal.

Design: Nonexperimental, cross-sectional survey. Respondents were reimbursed $25 for the return of a completed questionnaire.

Setting: Caregivers of home-based ventilator-dependent patients residing in southwestern Pennsylvania.

Sample: Caregivers of 39 home-based ventilator-dependent patients, 27 responses (69%) were received.

Measures: Modified Katz Index, Modified Caregiving Appraisal Scale, investigator-developed instrument to assess the health and sociodemographic characteristics of both patients and their caregivers.

Intervention: None.

Results: The needs of ventilator-dependent patients, as reported by their primary family caregivers, are extensive. Patients require considerable assistance with activities of daily living, with many patients having total care requirements in many functional domains. Caregivers are responsible for numerous pieces of high-tech equipment, as well as other special care requirements unrelated to the patient's ventilatory insufficiency. Although caregivers reportedly spend an average of 8.4 hours each day caring for their family member, the majority continue to maintain full- or part-time employment. Despite the considerable demands placed on caregivers, responses to the Modified Caregiving Appraisal Scale indicate that home placement is not perceived to be a negative experience. Internal consistency of instruments was determined by use of Cronbach's alpha, yielding the following correlation coefficients on the Modified Caregiving Appraisal Scale: burden subscale, 0.87; satisfaction subscale, 0.71; mastery subscale, 0.73; impact subscale, 0.70; and ideology subscale, 0.65. Alpha coefficients for the Katz Indexes measuring patient functional dependence, and consequent caregiver responsibility, were 0.95 and 0.90, respectively.