Study design and sample. Data for this descriptive, cross-sectional design study were collected between July and October 2017. The research population comprised family caregivers of all patients with a tracheostomy who had been discharged and who would continue home care for at least 1 month after discharge from the otorhinolaryngology clinic of the Education and Research Hospital in Malatya, Turkey. Caregivers and patients were informed of the study and invited to participate by one of the researchers and informed consent was obtained from each caregiver. The inclusion criteria stipulated that the caregiver 1) provided care for a person with a tracheostomy at home for at least 1 month after hospital discharge, 2) the patient was at least 50 years old and the caregiver was at least 18 years old, 3) the caregiver and patient agreed to participate in the study, and 4) the caregiver had no problem communicating with the researchers. Caregivers for patients whose tracheostomy had closed, who were experiencing psychiatric distress, providing daily care to another patient with a different illness, and/or illiterate were excluded from the study.
Ethical approval. Institutional permission was obtained from Education and Research Hospital in Malatya where the study was conducted as well as from the Ethics Committee of the same hospital. In addition, written informed consent was obtained from the caregivers after they were informed about the purpose, method, and expected benefits and risks of the study.
Data collection tools. Paper-and-pencil data collection tools included 3 sociodemographic forms: a questionnaire describing caregiver characteristics, a questionnaire describing patient characteristics, and a questionnaire on patient care provided. Questionnaires were developed by the researchers in line with the related literature,2,4,8,11,12 and expert opinions on the questions were obtained from a faculty member from the Department of Internal Diseases, Faculty of Nursing; a faculty member from the Department of Public Health, Faculty of Nursing; and a faculty member from the Department of Otorhinolaryngology. In addition, the 18-question Zarit Caregiver Burden Interview18 was completed.
Questionnaire on caregiver characteristics. This instrument included 39 questions regarding the characteristics of the caregivers (16 items) and patients (16 items) and patient care (7 items). This questionnaire included yes/no, open-ended, and multiple-choice questions such as the date of interview with the caregiver, age, marital status, level of income, working status, gender, education level, tracheostomy care education, health insurance, the presence of chronic illnesses, having children, relationship to the patient, daily care time, care duration in months, presence of other caregivers, and need to care for someone in addition to this patient.
Questionnaire on patient characteristics. The questionnaire included yes/no, open-ended, and multiple-choice questions such as the date of interview with the patient, the date of tracheostomy operation, discharge date after tracheostomy, medical diagnosis, reason for tracheostomy, type of tracheostomy cannula (silver, silicone, or plastic), follow-up care, age, body mass index, income, budget allocated to care, gender, education level, health insurance, tobacco use, and the presence of chronic illnesses. Patient questionnaire was answered by the caregiver in the presence of the patient and checked from the patient chart.
Questionnaire on patient care. This questionnaire included open-ended and multiple-choice questions on suctioning of secretions, nebulization, oxygen therapy, changing stoma dressing (peristomal), external and internal cannula cleaning, need and frequency of changing tracheostomy ties, and the duration of patient care.
Zarit Caregiver Burden Interview. The Zarit Caregiver Burden Interview, which includes statements reflecting how people feel when they provide care, was developed by Zarit et al18 in 1980. The interview, which is either completed by the researcher or the caregiver, consists of 18 items. Each item is rated on a scale of 0–4, where 0 = never, 1 = rarely, 2 = sometimes, 3 = often, and 4 = almost always.7,18 Total scale scores range from 0 to 88; higher scores indicate a higher caregiver burden. According to this instrument, scores from 61 to 88 indicate severe burden, from 41 to 60 indicate moderate burden, from 21 to 40 indicate mild burden, and below 21 indicate little or no burden. The validity and reliability of the interview in Turkey were investigated by Inci and Erdem7 in 2006, and the Cronbach’s alpha coefficient of the 22item interview was found to be 0.95. In 2012, the validity and reliability for the scale were re-investigated by Ozer et al9 who calculated Cronbach’s alpha coefficient of the 18-item interview as 0.82. In the present study, Cronbach’s alpha coefficient of the interview was noted to be 0.90.
Data collection. Data were collected for the questionnaires via face-to-face interviews, which took approximately 20 minutes with caregivers and researchers. The results of the questionnaires were provided to the same researcher after they were completed and the caregivers were immediately assigned a number for anonymity. The researcher conducted the interviews at the patients’ homes.
Data analysis. Data from the interview were collected using paper-and-pencil questionnaires and transferred for analysis to the SPSS version 18.0 (SPSS, Chicago, IL). Numbers, percentages, means, standard deviations, and distribution of minimum and maximum values were used to evaluate descriptive data. Kruskal Wallis and Mann Whitney U tests were utilized to compare variables. P <.05 indicated statistical significance.