Lived Experience of Thalassaemic Children in Bangladesh

Akter, Khaleda; Khatun, Shanzida; Hossain, Md. Sazzad

doi:10.4236/ojn.2020.1011079

Cited by 4 publications

(13 citation statements)

References 25 publications

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“…Access to cutting-edge interventions such as gene therapy or bone marrow transplant is minimal (10). The efforts to minimize preventable conditions such as thalassemia are centered around awareness drives once a year, which is too little for a population with a high density of heritable hemoglobinopathy (9). Up to 10% of the Bangladeshi population could be Thalassemia carriers, with 15000 new Thalassemia-positive births annually.…”

Section: Discussionmentioning

confidence: 99%

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Knowledge and attitudes towards thalassemia among university students in Bangladesh

Hossain¹,

Towhid²,

Sultana³

et al. 2022

Preprint

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Background Thalassemia is the most common congenital single-gene condition. It is marked by a lack of or reduced synthesis of either the alpha- or beta-globin chains and passed down from parents to offspring. This study aimed to determine how healthy students in Bangladeshi public universities were aware of thalassemia and how they felt about it. Methods A cross-sectional descriptive online survey was conducted on public university students in Bangladesh using a structured questionnaire between June and November 2020. Students completed structured questionnaires consisting of three sections: demographic information, ten multiple-choice knowledge questions rated on a scale of 0 to 10, and ten attitude questions. The data were analyzed using Python. Descriptive statistics methods such as frequencies and percentages were used to present data. Results A total of 681 students participated in the online survey. The average age of the respondents in this study was 21.97 years, with a standard deviation of 2.9. Most of the students, 611(89.72%), had heard about thalassemia. Only 248 (36.42%) of the students had a fair understanding of thalassemia, with 138 (22.62%) being male and 110 (18.03%) being female (P-value = 0.0819). Students' knowledge level did not differ significantly by gender (P-value = 0.0819), marital status (P-value = 0.2281), or academic year (P-value = 0.4619), but there was a substantial variation by field of study (0.0042). However, 478 (78.36%) participants showed a positive attitude toward "Premarital Screening" to prevent thalassemia. Conclusions In Bangladesh, where the rate of family marriage is high, it is recommended that university students and the general public engage in long-term, goal-oriented prevention measures. These initiatives would provide crucial information and increase people's awareness of thalassemia when married and after becoming parents, reducing the impacts of illnesses.

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Section: Discussionmentioning

confidence: 99%

“…The research team devised a self-reported questionnaire after conducting a thorough literature review (1,2,4,7,9–14) on individuals’ thalassemia knowledge, attitudes, and practices. The questionnaire was in English.…”

Section: Methodsmentioning

confidence: 99%

Knowledge and attitudes towards thalassemia among university students in Bangladesh

Hossain¹,

Towhid²,

Sultana³

et al. 2022

Preprint

View full text Add to dashboard Cite

show abstract

“…Access to cutting-edge interventions such as gene therapy or bone marrow transplant is minimal (Hossain et al, 2017a). The efforts to minimize preventable conditions such as Thalassemia are centered around awareness drives once a year, which is too little for a population with a high density of heritable hemoglobinopathy (Akter et al, 2020). Upto 10% of the Bangladeshi population could be Thalassemia carriers, with 15000 new Thalassemia-positive births annually.…”

Section: Discussionmentioning

confidence: 99%

“…The research team devised a self-reported questionnaire after conducting a thorough literature review (Akter et al, 2020;Alam et al, 2020;Ebrahim et al, 2019;Hashim et al, 2021;Hossain et al, 2017a;Ishfaq, 2016;Ishfaq et al, 2016;Kolnagou & Kontoghiorghes, 2009;Miri-Moghaddam et al, 2014;Uddin et al, 2017) on individuals' thalassemia knowledge, attitudes, and practices. The questionnaire was in English.…”

Section: Instrumentsmentioning

confidence: 99%

Knowledge and Attitudes towards Thalassemia among Public University Students in Bangladesh

2022

Microb Bioacts

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Background: Thalassemia is the most common congenital single-gene condition globally, characterized by a lack of or reduced synthesis of either the α- or β-globin chains and passed down from parents to offspring. This study aimed to determine the level of knowledge of thalassemia among Bangladeshi students from universities and their opinion on prevention. Methods: A cross-sectional descriptive online survey was conducted on public university students in Bangladesh using a structured questionnaire between June and November 2020, completed by students online. Demographic characteristics, knowledge, and attitude of the participants were assayed with 10 questions on each topic. The data were analyzed using Python. Descriptive statistics methods such as frequencies and percentages were used to present data. Result: A total of 681 students participated in the online survey. The average age of the respondents in this study was 21.97 years, with a standard deviation of 2.9. Most of the students, 611(89.72%), had heard about Thalassemia, yet only 248 (36.42%) students had good knowledge of Thalassemia. The knowledge level of students had no significant relationship with sex (p-value = 0.0819), marital status (p-value = 0.2281), and year of study (p-value = 0.4619), but had a considerable difference with the field of study (0.0042). However, 478 (78.36%) participants showed a positive attitude toward "Premarital Screening" to prevent Thalassemia. Conclusions: Long-term and target-based preventive initiatives are recommended for university students and the general population of Bangladesh, where the rate of consanguineous marriage is high. These initiatives would provide crucial information and increase awareness of premarital screening and genetic counseling to prevent thalassemia.

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“…International collaboration within the authorship was present in 38 of the studies (83%). A further seven studies were written exclusively by authors from Bangladesh, [39][40][41][42][43][44][45] one study by a single author from the United Kingdom. 46 Collaboration between countries typically demonstrated strengthened research methodology.…”

Section: Research Origins and Country Of Affiliationmentioning

confidence: 99%

Serious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review

et al. 2022

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Background: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care. Aim: To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation. Design: Scoping review methodology. Data sources: A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990–2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist. Results: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident. Conclusion: Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.

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Lived Experience of Thalassaemic Children in Bangladesh

Cited by 4 publications

References 25 publications

Knowledge and attitudes towards thalassemia among university students in Bangladesh

Knowledge and attitudes towards thalassemia among university students in Bangladesh

Knowledge and Attitudes towards Thalassemia among Public University Students in Bangladesh

Serious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review

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