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Exploring the perceptions and experiences of female’s with ß-thalassemia major in a Tertiary Care Private Hospital in Pakistan - 30/10/24

Doi : 10.1016/j.tracli.2024.06.008 
Rawshan Jabeen a, b, , Iqra Ansari b, Butool Durrani a, Mubarak Jabeen Salman b, Laraib Mazhar c, Muhammad Usman Hussain Ansari a, Ali Hussain Ansari a, Saba Kabani d, Saqib Husain Ansari b
a Aga Khan University, Karachi, Pakistan 
b Children’s Hospital, Karachi, Pakistan 
c The Pennsylvania State University, Hershey, Penn State, United America 
d Mubarak Al Kabeer Hospital, Jabriya, Kuwait City, Kuwait 

Corresponding author.

Highlight

This study explores the psychosocial challenges encountered by young girls with β-thalassemia major, emphasizing the critical role of social support in their well-being.
Positive factors influencing their quality of life include education and family support, while impediments such as depression and healthcare access challenges were identified.
Gender-specific data highlights the unique struggles faced by women with β-thalassemia, underscoring the need for tailored healthcare interventions.

Le texte complet de cet article est disponible en PDF.

Abstract

Introduction

ß-Thalassemia, a genetic condition which influences both the physical and emotional facets of individuals specially females while also exerting substantial financial strain on families and healthcare systems. Recognizing the pivotal influence of social support, particularly on mental well-being, this study endeavors to delve into the shared psychosocial challenges experienced by females grappling with ß-thalassemia major.

Methods

Employing a qualitative-descriptive methodology and purposive sampling, this study conducted in-depth interviews with forty-two young girls, 18.64 ± 4.27, diagnosed with ß-thalassemia major and representing diverse academic backgrounds, using a semi-structured in-depth interview guide. NVIVO-12 software facilitated extended data analysis, encompassing coding, categorization, theme development, and mind-mapping techniques to unravel nuanced insights from the collected data.

Findings

This groundbreaking study delves into the psychosocial factors that impact the well-being of female ß-thalassemia patients. The research highlights the key factors that positively contribute to their quality of life by conducting thorough inductive content analysis. These include receiving an education, having robust family support, experiencing overall life satisfaction, and making meaningful societal contributions. The findings of this study can be used to improve the lives of female ß-thalassemia patients and enhance their overall well-being. Contrariwise, notable impediments encompassed depression, social isolation, limited access to insurance services, challenges in educational and employment spheres, as well as difficulties in nurturing social relationships. These findings underscore the multifaceted influences shaping the quality of life for girls navigating ß-thalassemia, shedding light on empowering and challenging elements within their experiences.

Conclusion

In conclusion, psychosocial factors supporting or hindering the well-being of young girls with ß-thalassemia major in Pakistan include an inductive environment at homes, organizations, education, institutions with adequate knowledge of thalassemia disease among patients, and society. More research is needed to understand their needs and advocate for societal support and acceptance. Family and friends support are crucial for improving their quality of life, necessitating focused efforts to provide understanding and aid within the community.

Le texte complet de cet article est disponible en PDF.

Keywords : Beta-thalassemia, Girls’ well-being, Psychosocial influences on health, Young girls


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© 2024  Société française de transfusion sanguine (SFTS). Publié par Elsevier Masson SAS. Tous droits réservés.
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Vol 31 - N° 4

P. 244-252 - novembre 2024 Retour au numéro
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