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  • 标题:Lived experiences of Iranian parents of beta-thalassemia children
  • 本地全文:下载
  • 作者:Aziz Shahraki-vahed ; Mohammadreza Firouzkouhi ; Abdolghani Abdollahimohammad
  • 期刊名称:Journal of Multidisciplinary Healthcare
  • 印刷版ISSN:1178-2390
  • 电子版ISSN:1178-2390
  • 出版年度:2017
  • 卷号:10
  • 页码:243-251
  • DOI:10.2147/JMDH.S132848
  • 语种:English
  • 出版社:Dove Medical Press Ltd
  • 摘要:Introduction: Thalassemia is a chronic blood disease, which imposes adverse effects on patients and their families. Parents of such patients, given that they had the thalassemia trait, hold themselves responsible for their children’s disease in addition to other difficulties, bear the burden of guilt and hopelessness and worry about the health and future of their children. This study aimed to explore the lived experiences of parents of children with thalassemia. Methods: The present research was conducted using a descriptive phenomenological approach. A purposive sampling was carried out until data saturation. Participants included 15 parents of children with thalassemia who were referred to the Thalassemia Center of Zabol to perform therapeutic procedures for their child in 2016. Results: Extracted interviews were analyzed employing Colaizzi’s method, and four main themes were obtained, including “Gray marriage consanguinity”, “Burdened with increased number of thalassemia children”, “Socio-familial worries” and “Inexpressible wishes for having an ideal society”. Conclusion: The results revealed that parents of children with thalassemia experience a wide range of problems in different aspects, such as physical, emotional, mental, social, economic and familial dimensions. Their experiences are valuable and can help in achieving a better understanding of their problems, which in turn can enable the members of the treatment team to play a more active role and the society to have a better understanding of this disease.
  • 关键词:descriptive phenomenology; lived experiences; thalassemia major; Colaizzi’s analysis approach
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