Caring for Patients With a Tracheostomy at Home: A Descriptive, Cross-sectional Study to Evaluate Health Care Practices and Caregiver Burden

Abstract

In numerous countries, lay (family) caregivers are the primary providers of care for community-dwelling patients with a tracheostomy. PURPOSE: The purpose of this descriptive study was to determine health care practices and the burden on family caregivers for patients with a tracheostomy living at home. METHODS: The research population included 50 caregivers (average age 55.60 +/- 1.39 years; 25 [50%] female) who provided care to 50 patients (average age 63.50 +/- 1.72 years; 35 [70%] male)who were discharged from the otorhinolaryngology clinic of an education and research hospital in Turkey. Patient and care giver characteristic data and tracheostomy care practices were collected via face-to-face interviews between caregivers and research ersusing paper-and-pencil questionnaires. The 18-item Zarit Caregiver Burden Interview also was completed; responses to statements are rated on a scale of 0-4, where 0 = never, 1 = rarely, 2 = sometimes, 3 = often, and 4 = almost always. Total scalescores range from 0 to 88; higher scores indicate greater burden. Data were transferred into a statistical analysis program. RESULTS:The mean score for the Zarit Caregiver Burden Scale was 42.44 +/- 1.93, inferring caregivers were moderately burdened.Caregiver burden scores were significantly higher among female caregivers, caregivers without health insurance, caregivers requiring help, caregivers with chronic illness, more daily care time (hours), and duration of total care (months). Patient burden scores were significantly higher among persons requiring provision of daily nebulization and oxygen therapy, external cannuia cleaning, and daily patient care. CONCLUSION: This study illuminates the burdens faced by lay/family caregivers of patients with a tracheostomy and identifies for community health clinicians the challenges, care requirements at home, and burden of family caregivers that must be addressed.