Caregiver burden and quality of life of caregivers of patients who receive home care and feed with enteral tubes

Objective: Today, as a result of the increase in the elderly population and the rapid development of technology, enteral tube feeding has become a method that allows patients to continue their lives with their families in their own home environment. Although this method is of vital importance in terms of maintaining nutrition in the elderly, those with chronic diseases and those who need care, it may cause many physical, psychological and social problems for both the patient and the caregivers. These problems leads an increase in the caregiver burden and a decrease in the quality of life of caregivers. The aim of our study is to evaluate the characteristics, nutritional problems, care burden and quality of life of the patients and caregivers registered with the Home Health Services Unit of Samsun University Samsun Training and Research Hospital. Method: The research is a cross-sectional, questionnaire-based descriptive study. The population of the study consisted of the caregivers of 152 enteral tube fed patients registered with Home Health Services as of March 2022. The caregivers of 140 patients who met the research acceptance criteria and accepted to participate in the study constituted the sample of the study. When the data of the study were analyzed in terms of normality assumptions, Kolmogorov-Smirnov values were determined as p<0.05. Therefore, Spearman correlation analysis, one of the nonparametric tests, was performed to determine the relationship between Zarit Caregiver Burden Scale (ZCBS) total score and Short Form-36 (SF-36) scale sub-dimensions. Mann Whitney U test and Kruskal Wallis H, which are nonparametric tests, were used to determine whether there was a significant difference between the ZCBS total scores and the sociodemographic data of the participants and various variables. The post-hoc test was performed when the difference between the groups was significant. The Games-Howell post-hoc test was chosen because the sample size of the variants and groups were not equal. p<0.05 was considered statistically significant. Results: Of the 140 caregivers included in the study, 9.3% (n=13) was 19-34 years old, 75.6% (n=106) was 35-64 years old, 15% (n=21) 65 years old and over. 74.3% (n=104) of the caregivers were female and 25.7% (n=36) were male. 54.3% (n=76) of the caregivers were the child of the patient, 14.3% (n=20) was the spouse, 11.4% (n=16) was the mother/father, 10.7% (n=15) was his doughter-in-law/son-in-law. 82.1% (n=115) of the patients were fed by percutaneous endoscopic gastrostomy (PEG) and 17.9% (n=25) were fed by nasogastric tube (NGT) method. The mean score of the participants in the ZCBS scale was 49.00±12.36. In our study, 0.7% (n=1) of the participants had no caregiving burden, 20.7% (n=29) had a mild caregiving burden, and 61.4% (n=86) had an moderate caregiver burden and 17.1% (n=24) had an severe caregiver burden. In comparison of ZCBS total scores and sociodemographic datas of participants, a statistically significant difference was dedected between the ZCBS total scores and social security possesion (Z=-2.109 p=0.035). A statistically significant difference was found between the participants' total ZCBS scores and the patients' diagnosis of diabetes mellitus (Z=-2.523 p=0.012). A statistically significant negative correlation was found between ZCBS total scores and all SF-36 scale sub-dimension scores. Conclusion: In our study, participants care for patients who cannot be fed orally and who are fed enterally. Therefore, they undertake more on basic needs of the patients. This burden undertaken by caregivers may result in problems such as decreased physical health, social isolation, depression, anxiety and burnout, resulting in an increase in the burden of care and a worsening of quality of life. Information needs of caregivers in the field of health and care should not be ignored by home health care professionals, and time should be spared for caregiver education as well as the need for treatment during home visits.