Understanding the impact of COVID-19 pandemic on health-related quality of life amongst Iranian patients with beta thalassemia major: a grounded theory

Arian, Mahdieh; Vaismoradi, Mojtaba; Badiee, Zahra; Soleimani, Mohsen

doi:10.1017/s146342362100013x

Cited by 7 publications

(4 citation statements)

References 23 publications

(30 reference statements)

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“…The present study found no correlation between caregiver burden and marital and financial status, as evident in other studies (Zahid et al; Adili et al) [ 49 , 55 ], but this finding was inconsistent with the results reported by Hosseini et al and Perlik et al [ 58 , 59 ] because hemodialysis and thalassemia patients need several years of care. Due to the nature of the diseases and the high mortality rate in the COVID-19 pandemic, patient caregivers tried their best to care for patients and complained less about the care burden.…”

Section: Discussioncontrasting

confidence: 98%

“…We observed no significant correlation between age and caregiver burden, as reported by Adili et al, Zahid et al, and Agren et al [ 49 , 55 , 56 ], but this finding was inconsistent with the results reported by Lee and Rafati et al [ 35 , 57 ]. Caregiving roles and responsibilities have involved all family caregivers during the COVID-19 pandemic, which made younger caregivers more distressed because they were less experienced in caring for a patient, and thus underwent more care burden.…”

Section: Discussioncontrasting

confidence: 91%

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The correlation between caregiver burden with depression and quality of life among informal caregivers of hemodialysis and thalassemia patients during the COVID-19 pandemic: a cross-sectional study

et al. 2023

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Background Lifelong provision of care to chronically ill patients increase the risk of physical and mental diseases in informal caregivers and adversely affects their quality of life. The present study examined the correlation between caregiver burden, depression, and quality of life among the informal caregivers of thalassemia and hemodialysis patients during the COVID-19 pandemic in southeastern Iran. Methods This cross-sectional correlational study used convenience sampling to select 200 informal caregivers involved in providing direct care for patients undergoing hemodialysis (n = 70) and patients with thalassemia (130) for at least 6 months. A demographic questionnaire, Beck’s Depression Inventory (BDI), the Quality-Of-Life Questionnaire (SF-36), and the Zarit Burden Interview were used to collect data in 2021. The data were analyzed with SPSS software (version 19) using frequency, percentage, independent samples t-test, ANOVA, and multivariate regression analysis. Results Most of the informal caregivers of the thalassemia and hemodialysis patients (58% and 43%) reported moderate levels of caregiver burden. There were significant correlations between the caregiver burden and depression (P < 0.0001) and between the caregiver burden and the quality of life (P < 0.009). The level of depression in informal caregivers of patients undergoing hemodialysis was higher than that of the informal caregivers of patients with thalassemia, but the quality of life in the informal caregivers of the patient’s undergoing hemodialysis was higher than that of the informal caregivers of the patients with thalassemia. Conclusion Considering the significant correlations between caregiver burden, depression, and quality of life in this study, healthcare providers are recommended to develop educational and supportive interventions to meet informal caregivers’ needs, mitigate their emotional distress, fears, and concerns, and prevent caregiver burden in times of greater uncertainty.

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Section: Discussioncontrasting

confidence: 98%

Section: Discussioncontrasting

confidence: 91%

The correlation between caregiver burden with depression and quality of life among informal caregivers of hemodialysis and thalassemia patients during the COVID-19 pandemic: a cross-sectional study

et al. 2023

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“…Others reported that the children with transfusiondependent thalassemia found the lockdown an excuse to express their reluctance to attend their regular blood transfusion sessions (36). Yet, the lockdown came with less school challenges and more emotional support from immediate family contacts (37)(38)(39).…”

Section: Discussionmentioning

confidence: 99%

COVID-19 Lockdown aggravated the Health-Related Quality of Life in Children with Transfusion-Dependent-Thalassemia

Youssry,

Fawzy,

Asem

et al. 2023

Pediatric Sciences Journal

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Background: Thalassemia is the most prevalent cause of chronic hemolytic anemia and associated with high rates of morbidity and mortality. Its management is demanding, timely and multidisciplinary creating a strain on the patients, their families, and society. Aim of the work:To study the effect of the corona virus disease of 2019 (COVID-19) pandemic lockdown on the health-related quality of life (HRQoL) of the children with transfusiondependent thalassemia. Subjects and Methods: The HRQoL (child self-report) and (parent proxy-report for those children) questionnaires of the Pediatric Quality of Life Inventory (PedsQL) Measurement Model were used to study the same group of 131 children with transfusion-dependent-thalassemia before and during the-COVID-19 era lockdown and compared them to 200 matched children with their parents as a control group. Results: 67 (51.1%) males and 64 (48.9%) females, transfusion-dependent thalassemia patients were included in our study. The mean age was 8.28 ± SD3.81 (range 5-18) and 8.94 ±SD 3.78 years at initial assessment and during the lockdown respectively (p=0.0001). in the pre-COVID-19 the score of patients in all the aspects of PedsQL questionnaire was 60.4±22.8 while that of the control group was 97.3±3 (p <0.001). The mean ± SD of total PedsQL score in the patients before COVID-19 was 60.24 ± 22.8 SD and during the lockdown was 55. 96±18.3 (p <0.001). The parent proxy-report for those children was lower than that of the patients (p <0.001). Before COVID-19 the least PedsQL 25.22±4.5 and 25.43±7.2 were reported by those on IV deferoxamine, and by older patients (13-18 years) compared to the control group of 97.3±3 (p <0.001 and p <0.00) respectively. During the lockdown the values dropped significantly as reported by the children and their parents (p<0.001). Conclusion: Transfusion-dependent thalassemia has an alarming negative impact on all aspects of the quality of life of the affected children and their families. This straining negative aspect was accentuated by the COVID-19 lock-down. Multidisciplinary task force to address the emotional, social, and physical perception of children with transfusion-dependent thalassemia and their parents is imperative.

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“…In December 2019, in the city of Wuhan, China, severe acute respiratory syndrome (SARS) erupted, which is known as the coronavirus disease 19 . This pandemic affected the entire world and badly affected the daily life of every individual [3]. To control the deadly virus, lockdown was administered countrywide, thus restricting the activities of daily life.…”

Section: Introductionmentioning

confidence: 99%

Aftermath of the COVID-19 Pandemic on Mental Health and Well-Being of Patients With Thalassemia Major in Pakistan: A Qualitative Study

Hammad¹,

Arif²,

Bano³

et al. 2023

Cureus

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Background and aimChronic patients with thalassemia major were mainly recognized as more prone to poor mental health during this global pandemic. This study aims to evaluate causal relationships leading to poor outcomes and how they manage to tackle this. MethodsIn-depth face-to-face semi-structured interviews were conducted with 21 thalassemia patients selected through probability consecutive sampling from Pakistan Thalassemia Welfare Society Centers. The following criteria served as the basis for the interview: (1) solitude at home, (2) interruption of transfusion services, (3) alteration of appetite and interests, (4) lack of control and uncertainty, (5) extensive media coverage, (6) deterioration of pre-existing health issues, difficulty in sleeping, (7) practicing gratitude, (8) participation in activities and hobbies, (9) connectivity with others, and (10) ability to recognize social support. All interviews were recorded, transcribed, and analyzed with reflexive thematic analysis. ResultsThe commonly described mental health conditions were depression and concern about the overall health status. The following seven elements associated with the pandemic contributed to the deterioration of mental health: (1) isolation at home, (2) disruption in transfusion services, (3) change in appetite and interests, (4) lack of control and uncertainty, (5) intensive media reporting, (6) worsening of pre-existing health problems, and (7) difficulty in sleeping. The following four coping strategies were identified for maintaining mental issues: (1) practicing gratitude, (2) involvement in activities and hobbies, (3) connectivity with others, and (4) discerning social support. ConclusionsThalassemia major patients had been negatively affected during the pandemic. Only a small number of people modified their management techniques to maintain steady well-being.

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Understanding the impact of COVID-19 pandemic on health-related quality of life amongst Iranian patients with beta thalassemia major: a grounded theory

Cited by 7 publications

References 23 publications

The correlation between caregiver burden with depression and quality of life among informal caregivers of hemodialysis and thalassemia patients during the COVID-19 pandemic: a cross-sectional study

The correlation between caregiver burden with depression and quality of life among informal caregivers of hemodialysis and thalassemia patients during the COVID-19 pandemic: a cross-sectional study

COVID-19 Lockdown aggravated the Health-Related Quality of Life in Children with Transfusion-Dependent-Thalassemia

Aftermath of the COVID-19 Pandemic on Mental Health and Well-Being of Patients With Thalassemia Major in Pakistan: A Qualitative Study

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