Burnout and Lived Experiences among Caregivers of Chronic Liver Disease Patients

Gnana Deepa P | Dr. Bindhu Mathew | Dr. Mallikarjun ^[4]

Abstract: Background: Chronic liver disease occurs throughout the world irrespective of age, gender, region or race. Patients are presenting and dying from liver disease at an early age, with the average age of death from liver disease being 59 years, compared to 82-84 years for heart and lung disease. Over the 10 years there has been a fivefold increase in the development of cirrhosis among 35 to 55-year-old age group. Being a chronic disease, it also causes a burden on the care givers mental, emotional financial and physical aspects Caregiverer burnout involves multidimensional factors like financial implications, disrupted family routine, interrupted role function, ineffective coping, and lack of resilience. Also exploring he experiences of caregivers of patients provides new insight into the needs and support of family members especially when they are facing loved ones with chronic diseases. It helps in reducing unmet supportive care needs and psychological distress of the caregivers. 8Hence the study was undertaken to assess the burnout and lived experiences among care givers of CLD patients. Methods: The research approach adopted for this study was a mixed method (Quantitative and qualitative) approach. Qualitative strand: Convergent parallel design. Quantitative strand: Descriptive Cross Sectional survey. 100 samples were selected by using purposive sampling technique. Care giver burnout index was used to assess the burnout. The statistical tests used for the analysis were mean, range, standard deviation, independent t test and ANOVA. For qualitative strand data was collected from 20 subjects using in depth interview method on a one to one basis using the interview guide and it was audio recorded. Data saturation was reached with 20 subjects. From the recorded audio verbatim and themes were extracted. Results: The results showed that overall mean score of burnout experienced by care givers of CLD patients is 50%.Among them (58%) of them were severely burnout. 34% of them were moderately burnout and 8% of them were low burnout. There is no significant association of burnout experienced by care givers of CLD patients with selected baseline variables. Exploring the experiences of caregivers of CLD patients. After data analysis, five themes 1. Feeling of entanglement of burden, 2. Financial crisis, 3. Sense of entrapment, 4. Disruption in the pace of life5. Impact on health and ten sub themes emerged. The majority of participants reported feelings of sadness, suffering, hopelessness, and helplessness. They were psychologically distressed and their physical health was threatened. In general, the presence of a person with CLD leads to a crisis in the family and affects all aspects of their lives. It disrupts the vital balance of the family system in relationships, roles, and desires. Conclusions: The study revealed that majority of the care givers of CLD patients had severe burnout. Also exploring the experiences of caregivers of patients provides new insight into the needs and support of family members especially when they are facing loved ones with chronic diseases. It helps in reducing unmet supportive care needs and psychological distress of the caregivers.

Keywords: Burnout, Chronic Liver Disease, Data saturation, Themes, Sub themes, care giver burnout index, Interview guide

Edition: Volume 12 Issue 7, July 2023,

Pages: 178 - 188