Iran Journal of Nursing

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Seyedoshohadaee M, Bozorgi Matin M, Haghani H. Association of Death Anxiety and Quality of Life in the Caregivers of Patients with Multiple Sclerosis. IJN 2019; 32 (120) :1-13
URL: http://ijn.iums.ac.ir/article-1-2998-en.html

Background & Aims: Multiple sclerosis (MS) is a disease that evolves into a chronic progressive phase and leads to a loss of muscular ability following the attack of the nervous system by the immune system. MS incidence has significantly increased in Iran and the world, and its disabling and progressive nature has affected various aspects of the life of patients and their caregivers. In fact, caregivers face the process of death, pain, and fear of mortality of patients during the care process, which may affect their quality of life. Therefore, given the direct impact of the caregivers’ quality of life on patients’ quality of life, more support of caregivers is of utmost importance. Since the care of patients might cause death anxiety and decrease the quality of life of caregivers, the present study aimed to determine the relationship between death anxiety and the quality of life of caregivers of MS patients.
Materials & Methods: This descriptive and correlational study was performed on caregivers of MS patients who referred to Iran MS society in 2018. In total, 200 individuals were selected by convenience sampling after determining the sample size based on 95% confidence interval, 80% test power, and 0.2 correlation coefficient between death anxiety and quality of life of MS patients. The research was approved by the ethics committee of the Iran University of Medical Sciences (IR.IUMS.REC.1397.357). Data were collected using a demographic characteristics questionnaire for caregivers of MS patients (age, gender, level of education, marital status, economic status, occupational status, relationship with the patient, duration of care, and being responsible for care alone), the 36-item short-form health survey (SF-36), and Templer’s death anxiety scale. The latter instrument encompassed 15 items and was scored in a range of 0-15. In this regard, a score higher than eight was indicative of high death anxiety in the participants, whereas scores below seven showed low death anxiety. On the other hand, SF36 had eight dimensions of general health, physical performance, role limitations due to physical issues, role limitations due to emotional reasons, physical pain, social performance, joy, and psychological health. In the mentioned questionnaire, the lowest and highest scores were zero (worst case scenario) and 100 (best case scenario), respectively. In the end, higher scores demonstrated a better quality of life. Data analysis was performed n SPSS version 16 using descriptive (frequency, frequency percentage, mean and standard deviation) and inferential (analysis of variance, independent t-test, Scheffe’s test, and Pearson’s correlation coefficient) statistics.
Results: In this study, the mean age of the participants was 40.39±11.75 years. The majority of the participants were male (58.5%) and married (64.4%). In terms of relationships with patients, 40% of the subjects were spouses of the patients, and 54.5% of them took care of the patients alone. The mean duration of patient care was 8.7±5.9, and most caregivers had a diploma degree (36.2%). Regarding residential status, 58.3% of the subjects had personal homes, and 44.2% of the participants had government jobs and a moderate economic status. In addition, about half of the people (50.8%) had social security insurance, and 54.5% of caregivers took care of the patients alone. According to the results, the mean death anxiety and quality of life scores of caregivers were estimated at 5.92±3.82 and 55.42±14.82, respectively. Moreover, 143 subjects (71.5%) received a low death anxiety score (in the range of zero-seven) while 57 of them (28.5%) a high score (above eight) in this respect. In the study of caregivers' quality of life, the highest and lowest mean and standard deviation were obtained in terms of physical performance and role limitations due to emotional reasons, respectively. The results showed a moderate quality of life in caregivers, and a significant, reverse correlation between death anxiety and quality of life (r=0.42) (P<0.05). In addition, there was a significant association between death anxiety and the variables of relationship with the patient (P=0.001), duration of care (P=0.036), occupational status (P=0.021), and type of insurance (P=0.006). Furthermore, a significant relationship was found between quality of life and the variables of age (P=0.032), level of education (P<0.001), income level (P<0.001), occupational status (P<0.001) and insurance (P<0.001).
Conclusion: According to the results of the study, the majority of caregivers had low death anxiety. In addition, the mean score of death anxiety was estimated at 5.92 (out of 15), which demonstrated low death anxiety in these individuals. The results were indicative of a reverse correlation between death anxiety and quality of life and its dimensions. In other words, an increase in death anxiety led to a decrease in quality of life and its dimensions. Given the significant correlation between death anxiety and quality of life, it is recommended that more support be provided by healthcare providers to eliminate problems and decrease death anxiety in caregivers, especially those taking care of MS patients. Given the progressive nature of MS and its psychological outcomes, caregivers of these patients need ongoing psychological training to help them care for patients more effectively. Therefore, it is suggested that programs be designed to help caregivers and improve their quality of life in line with focusing on themselves and their needs. It is also recommended that more attention be paid to the importance of care and caregivers in the field of nursing management and continuous nursing education. It is also important to focus on the problems and disabilities of patients and their caregivers. For further research, it is suggested that the quality of life of caregivers be compared with the quality of life of patients and death anxiety in caregivers with death anxiety in patients.