Care-Related Quality of Life of Caregivers of Beta-Thalassemia Major Children: An Epidemiological Study in Eastern India

Biswas, Bijit; Naskar, Narendra Nath; Basu, Keya; Dasgupta, Aparajita; Basu, Rivu; Paul, Bobby

doi:10.2991/jegh.k.200102.003

Cited by 20 publications

(11 citation statements)

References 21 publications

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“…Naturally, study participants were mostly from rural areas and their educational level were mostly up to primary level and most of them were home maker and belonged to lower middle and middle SES Class. Present study results were almost similar to the study conducted by Biswas et al 11 Diagram 1 showed that, 60.3% of the study participants had favourable PCS of health. But in case of MCS of health we had found that, majority (64.7%) of the caregivers were having unfavourable MCS.…”

Section: Resultssupporting

confidence: 90%

Quality of life among caregivers of thalassaemic children, attending at Thalassaemia control unit of a rural tertiary care hospital, in a sub-Himalayan district of West Bengal

Saha¹,

Bhandari

Gazi³

et al. 2022

JCHM

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Thalassaemia is a disease of abnormal development of red blood cells which manifests as anaemia. This chronic disease may cause mental, social, financial burdens on the families, care givers and also on health care system.To assess the quality of life (QOL) of the caregivers of thalassaemic children and to identify the predictors of quality of their physical and mental health.Institution based descriptive cross-sectional study conducted in the Thalassaemia Control Unit (TCU) of North Bengal Medical College (NBMC) from December 2018 to April 2019. Total 136 caregivers of children (≤12 years) with thalassaemia were included by complete enumeration method. Physical and mental health of the caregivers were reported in Short Form-36 (SF-36) Health Survey. Collected data were entered into MS-Excel, analysed with the help of SPSS (Version 22).Mean age of caregivers was 34.3 (SD ± 1.4 years). Most of caregivers were female (89%) and had educational qualification up to Primary school (45.6%). Majority (70.6%) of the caregivers were the mothers of the children. Most of the study participants (60.3%) had favourable Physical health Component Summary (PCS) but 64.7% of the caregivers had unfavourable Mental health component Summary (MCS). Educational status was found to be the predictor for PCS but age and relationship with the child were the predictors for MCS.Counselling, psychotherapy, social support for family members or caregivers of the thalassaemic children and community involvement with their full participation should be emphasized to reduce stigma related to thalassaemia.

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Section: Resultssupporting

confidence: 90%

Quality of life among caregivers of thalassaemic children, attending at Thalassaemia control unit of a rural tertiary care hospital, in a sub-Himalayan district of West Bengal

Saha¹,

Bhandari

Gazi³

et al. 2022

JCHM

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“…They experienced the shortages of medications and exhibited adverse lifestyle behaviours leading to declined health (Yan et al, 2020). It is evident that healthy behaviours and strategies can modify and maintain wellness components amongst patients with beta thalassemia major (Biswas et al, 2020). The long-lasting impact of the pandemic on health behaviours, and the possibility of several COVID-19 peaks, emphasise the need for creative and evolving, multilevel approaches to assist these patients to be able to adapt healthy behaviours and prevent disease comorbidities and COVD-19 (Eleftheriou et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

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

Arian

Vaismoradi

Badiee

et al. 2021

Prim Health Care Res Dev

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Background: The coronavirus disease 2019 (COVID-19) pandemic and the resulting measures can impact daily life and healthcare management amongst patients with beta thalassemia major. Methods: The Corbin and Strauss method of grounded theory was used to explore the impact of the COVID-19 pandemic on health-related quality of life (HRQoL) amongst Iranian patients with beta thalassemia major. Semi-structured interviews with 16 patients with thalassemia major in the eastern of Iran were performed. Data collection was conducted from 19 September through 18 November 2020. Collected data were recorded, transcribed, and coded to develop themes and subthemes. Paradigm components were sought to find out what happened to these patients and explore the process and events. Results: Insights from these interviews led to five major themes: ‘changing physical health’, ‘emotional and psychological reactions’, ‘changing the nature of relationships and the scope of social support’, ‘metamorphosis of ongoing healthcare, and ‘functionality and adaptation to new realities.’ The emerging core concept was labelled: ‘maintaining well-being balance.’ The COVID-19 pandemic disturbed the balance of life and health of the patients. Multiple strategies to maintain balance and reduce the negative effects of the COVID-19 pandemic on HRQoL were used by the patients, the healthcare team, and support systems. Conclusions: Due to the fear of COVID-19, the patients with beta thalassemia were less likely to contact healthcare professionals. They considered postponing blood transfusion and abandoned evaluating disease complications. Reduced access to the healthcare system and shifting resources from existing programmes to COVID-19 by the healthcare system were incompatible policies. These policies and strategies had strong and negative effects on the physical domain of HRQoL. The patients experienced a deterioration of emotional functioning. They reported a strong reduction in social functioning and felt lonely. Online interventions supporting mental health and social interactions and telemedicine can help during the times of social distancing and lockdowns.

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“…Life-training skills, self-care management and psychological treatment have been suggested as healthcare management strategies to people with TDTs to lead an independent life with good QOL and health [32][33][34]. These should start during their childhood and perhaps be extended to their caregivers as indicated by other studies [35,36]. With proper training and guidance, they may fare as well as the people without the disease [37].…”

Section: Multiple Linear Regression a (Coefficient (95% Ci))mentioning

confidence: 99%

Quality of life and challenges experienced by the surviving adults with transfusion dependent thalassaemia in Malaysia: a cross sectional study

Chean

Rahim

et al. 2022

Health Qual Life Outcomes

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Background Improvement in medical management has enabled transfusion dependent thalassaemia (TDT) patients to survive beyond childhood, building families, and contributing to the labour force and society. Knowledge about their adult life would provide guidance on how to support their needs. This study aims to explore the general well-being of adults with TDT, their employment status and challenges. Methods This study recruited 450 people with TDT, aged 18 and above, of both genders through all regional Thalassaemia societies in Malaysia and from the two participating hospitals, over five months in year 2016. A self-administered questionnaire including ‘Healthy Days Core Module’, WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. Results A total of 196 adults with TDT responded to the survey (43.6% response rate). Almost half (45%) had comorbidities and 9% suffered multiple complications: bone-related (13%), hormonal (12%), cardiac (3%) and infections (2%), resulting in 23% seeking treatment more than twice monthly. Within a month, they suffered from at least three days with poor physical and or mental health and their normal daily activities were disrupted up to three days. 36% were jobless and 38% of those with a job were receiving salaries below RM1000. The mean WHOQOL-BREF score (mean (SD)) was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Having days with mental issues, financial status, education level, ethnic and marital status were main factors affecting QOL scores. Open questions showed dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy. Conclusion The adults with TDT perceived their health as good and had less unhealthy days when compared with people with other chronic diseases. However, some perceived themselves to be facing more life disruption in a rather non-supportive community and that health services do not meet their needs. Future qualitative studies are needed to focus on their perceived needs and to look for more tailored supportive approaches.

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Care-Related Quality of Life of Caregivers of Beta-Thalassemia Major Children: An Epidemiological Study in Eastern India

Cited by 20 publications

References 21 publications

Quality of life among caregivers of thalassaemic children, attending at Thalassaemia control unit of a rural tertiary care hospital, in a sub-Himalayan district of West Bengal

Quality of life among caregivers of thalassaemic children, attending at Thalassaemia control unit of a rural tertiary care hospital, in a sub-Himalayan district of West Bengal

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

Quality of life and challenges experienced by the surviving adults with transfusion dependent thalassaemia in Malaysia: a cross sectional study

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