الفهرس 
Burden and Quality of Life among Caregivers of Patients with chronic Medical DiseasesOnly 14 pages are availabe for public view
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Abstract
In the context of modern healthcare, Burnout Syndrome has become a significant concern, especially among family caregivers of Hemodialysis (HD) patients. Hemodialysis is a crucial treatment for individuals with chronic kidney disease (CKD), placing substantial physical, emotional, and psychological demands on both patients and their caregivers. CKD is a global health challenge, and Hemodialysis is vital for its management. However, the exhaustive nature of this treatment makes caregivers susceptible to Burnout Syndrome. They juggle medication management, dietary restrictions, logistical hurdles, and emotional support, facing various stressors that can lead to emotional exhaustion and reduced well-being. Despite their pivotal role, caregivers often neglect their own psychological and emotional needs, potentially worsening Burnout Syndrome and its consequences.
Caregiver burden intensifies as patients’ functional and executive functions and good planning to time impairments limit their self-care abilities. Factors such as caregiver burden can strain the patient-caregiver relationship, along with the patient’s psychological and behavioral symptoms, gender, and life events. These challenges weigh heavily on those responsible for caregiving, especially family members.
Furthermore, caregiver burden may be influenced by their executive functions and good planning to time and age, as middle-aged caregivers are often concerned about missed workdays, work interruptions, and reduced productivity due to caregiving responsibilities. Caregivers often experience fear, fatigue, vulnerability, and limitations in pursuing their own activities. They also encounter challenges in their social and romantic lives, as they spend a significant amount of time accompanying patients to hemodialysis sessions.
The subjective burden on caregivers increases with patients’ comorbidities, severity of illness, caregiving hours, and variations in caregiving tasks. Female caregivers, partners of patients, and those cohabiting with patients tend to experience a higher subjective burden. Female caregivers who cohabit with patients also report more depressive symptoms and poorer self-rated health compared to caregivers who don’t live with their patients.
Despite the substantial evidence highlighting caregivers’ challenges and the lack of attention they receive, research on caregiver burden remains limited. Therefore, evaluating caregivers’ well-being and measuring their burden levels is of utmost importance.
The main aim of the study was to evaluate the Burnout Syndrome prevalence among Hemodialysis caregivers, explore related factors, examine socio-demographics, job traits, and working conditions’ impact on distress and burnout. Additionally, it investigated how burnout affected caregivers’ quality of life dimensions.
This cross-sectional observational study utilized a convenient sample and was conducted at Luxor International Hospital, starting from January 2023. The study population comprised 100 individuals closely related to patients receiving regular hemodialysis, specifically family caregivers who were physically healthy. Also, we added 50 caregivers to CKD patients not on regular hemodialysis.
Main Results of our study
Demographic Data:
• Age: Mean age for Cases group was 42.39 ± 11.9, Control group had a mean age of 41.32 ± 11.61 (p = 0.6015).
• Gender: Similar distribution, 46% male in HD, 48% in CKD (p = 0.8184).
• Relation to Patients: No significant differences in the distribution among father, mother, brother, sister, husband, and wife categories.
• Occupation: Significant decrease in farmers among Cases group (31%) vs. Control group (10%) (p = 0.0043).
• Marital Status, Little child age, executive functions and good planning to time, Daily working hours, Smoking, Number of cigarettes showed no significant differences.
Copenhagen CBI-Personal Burnout and PSS Scores:
• CBI-personal burnout: Cases group had significantly higher scales (38.33 ± 11.5 vs. 28.17 ± 12.04, p < 0.0001).
• Burnout severity: More Control group (94%) had no/low burnout (<50) compared to Cases group (78%) (p = 0.013).
• PSS Scores: Cases group had significantly lower scales (15.73 ± 4.38 vs. 17.58 ± 6.29, p = 0.0377).
• Categorization: Cases group had fewer individuals with much lower than average stress (0-7) (0% vs. 10%, p = 0.0012).
General Health Questionnaire–28 (GHQ-28):
• GHQ-28 Score: Significantly higher in Cases group (16.1 ± 8.06 vs. 5.82 ± 5.28, p < 0.0001).
• Distribution: Fewer Cases group (20%) had a GHQ-28 score <=7 compared to Control group (62%) (p < 0.0001).
• More Cases group (80%) had a GHQ-28 score >7 compared to Control group (38%) (p < 0.0001).
World Health Organization Quality of Life Assessment:
• Quality of Life Score: Cases group had significantly lower scales (60.3 ± 5.23 vs. 77.96 ± 5.07, p < 0.0001).
• Distribution: Significant differences in poor, fair, moderate, and good quality of life scales between HD and CKD Care givers.
Correlations Statistics:
• Age and Gender: There is a significant positive correlation between age and CBI (Personal Burnout) (r= 0.489, P<0.00001), indicating that as individuals age, they tend to experience higher levels of burnout. Age also shows a significant negative correlation with WHOQOL scales (r= -0.22, P= 0.02768), suggesting a decrease in overall quality of life with age. Gender has correlations with various measures.
• Daily Working Hours: There is a significant positive correlation between daily working hours and CBI (Personal Burnout) (r= 0.511, P= 0.0001), suggesting longer daily working hours may be associated with higher burnout. Daily working hours also have correlations with GHQ-28.
• Marital Status: Marital status has correlations with various measures, with significant positive and negative correlations observed in different categories.
• Executive functions and good planning to time: executive functions and good planning to time has correlations with different psychological measures, with significant positive and negative correlations in various categories.
• Children and Little Child Age: Having children and the age of little children have correlations with GHQ-28 and WHOQOL, indicating their influence on psychological well-being.
• Smoking Habit: Smoking habit has correlations with PSS, suggesting that individuals who smoke more cigarettes experience higher levels of perceived stress. No significant correlations were found between smoking and other psychological measures.
CONCLUSION
In conclusion, our study sheds light on the significant presence of burnout, perceived stress, and psychological distress among family caregivers of Hemodialysis patients. While a majority of participants displayed relatively low burnout levels, the overall burden of caregiving is evident, as underscored by the considerable psychological distress experienced by a notable proportion. The perceived quality of life among caregivers appears compromised, particularly among those falling within the ”Poor” category. Age, gender, marital status, executive functions and good planning to time, presence of children, and smoking habits emerged as influential factors in shaping caregivers’ experiences. These findings underscore the urgent need for targeted support interventions and resources to mitigate the impact of caregiving-related stressors, improve well-being, and enhance the overall quality of life for this vulnerable population.
Study limitations
Our study has certain limitations that should be acknowledged. The relatively small sample size of 100 participants from a specific demographic and geographic region may limit the generalizability of the findings to a broader population of family caregivers of Hemodialysis patients. Additionally, the cross-sectional nature of the study design precludes establishing causality and understanding the temporal relationships between variables. Furthermore, the self-reported data collection method for variables such as smoking and working hours introduces the potential for recall bias. Despite these limitations, our study provides valuable insights into the burnout syndrome and its associations among family caregivers in the context of Hemodialysis patients.
RECOMMENDATIONS
• The study recommend conducting larger sample studies with long term follow up to validate and extend our findings to investigate burnout intricacies among Hemodialysis caregivers.
• The study recommend the implementation of tailored support programs for family caregivers of Hemodialysis patients. These programs should offer a combination of executive functions and good planning to time materials and counseling services, aimed at equipping caregivers with effective stress management techniques and strategies to enhance their overall well-being.
• The study recommend conducting longitudinal research to gain a comprehensive understanding of the evolving dynamics of burnout among family caregivers over an extended period. Longitudinal studies can provide valuable insights into how burnout develops, fluctuates, and interacts with various factors, thereby guiding the development of more targeted and effective interventions.
• The study recommend involving caregivers in patient care planning to ensure realistic and sustainable care plans.
• The study recommend the integration of routine screening protocols for burnout and psychological distress within the standard practices of healthcare settings. Regular assessments would facilitate the early identification of caregivers at risk, enabling timely interventions and support to mitigate the impact of burnout