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Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study
Background: Uncertainty leads to a stressful situation in patients with thalassemia major that can dramatically affect their psychosocial coping ability, treatment process and disease outcomes, and reduce patients' quality of life. As one of the important factors affecting the health of thalass...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Tehran University of Medical Sciences, Hematology-Oncology and Stem Cell Transplantation Research Center
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7876423/ https://www.ncbi.nlm.nih.gov/pubmed/33603985 http://dx.doi.org/10.18502/ijhoscr.v14i4.4479 |
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author | Ahmadi, Mehrnaz Gheibizadeh, Mahin Rassouli, Maryam Ebadi, Abbas Asadizaker, Marziyeh Jahanifar, Mojtaba |
author_facet | Ahmadi, Mehrnaz Gheibizadeh, Mahin Rassouli, Maryam Ebadi, Abbas Asadizaker, Marziyeh Jahanifar, Mojtaba |
author_sort | Ahmadi, Mehrnaz |
collection | PubMed |
description | Background: Uncertainty leads to a stressful situation in patients with thalassemia major that can dramatically affect their psychosocial coping ability, treatment process and disease outcomes, and reduce patients' quality of life. As one of the important factors affecting the health of thalassemia patients, understanding the concept of uncertainty is of major importance to health care providers especially nurses as the first line of exposure to these patients. The present study aimed to explore the experiences of uncertainty in patients with thalassemia major. Materials and Methods: The present qualitative study was conducted through in-depth face-to-face semi-structured interviews held with 18 patients with major thalassemia selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analyzed with conventional content analysis method of Landman and Graneheim using MAXQDA10 software. Results: Two main themes, including 'living in the shadow of anxiety' and 'coping with uncertainty' emerged from patients’ experiences of illness uncertainty of thalassemia. 'Living in the shadow of anxiety' included four categories of 'fear of complications', 'contradictory views on treatment', 'unknown future' and 'stigma'. 'Coping with uncertainty' included three categories of 'spiritual coping', 'psychosocial coping' and 'knowledge acquisition'. Conclusion: According to the results of this study, uncertainty is a major psychological stress in patients with thalassemia major. Healthcare providers should therefore consider the challenges and concerns faced by patients and, through utilizing appropriate training and communicational practices, plan interventions and strategies to empower patients for coping with uncertainty. |
format | Online Article Text |
id | pubmed-7876423 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | Tehran University of Medical Sciences, Hematology-Oncology and Stem Cell Transplantation Research Center |
record_format | MEDLINE/PubMed |
spelling | pubmed-78764232021-02-17 Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study Ahmadi, Mehrnaz Gheibizadeh, Mahin Rassouli, Maryam Ebadi, Abbas Asadizaker, Marziyeh Jahanifar, Mojtaba Int J Hematol Oncol Stem Cell Res Original Article Background: Uncertainty leads to a stressful situation in patients with thalassemia major that can dramatically affect their psychosocial coping ability, treatment process and disease outcomes, and reduce patients' quality of life. As one of the important factors affecting the health of thalassemia patients, understanding the concept of uncertainty is of major importance to health care providers especially nurses as the first line of exposure to these patients. The present study aimed to explore the experiences of uncertainty in patients with thalassemia major. Materials and Methods: The present qualitative study was conducted through in-depth face-to-face semi-structured interviews held with 18 patients with major thalassemia selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analyzed with conventional content analysis method of Landman and Graneheim using MAXQDA10 software. Results: Two main themes, including 'living in the shadow of anxiety' and 'coping with uncertainty' emerged from patients’ experiences of illness uncertainty of thalassemia. 'Living in the shadow of anxiety' included four categories of 'fear of complications', 'contradictory views on treatment', 'unknown future' and 'stigma'. 'Coping with uncertainty' included three categories of 'spiritual coping', 'psychosocial coping' and 'knowledge acquisition'. Conclusion: According to the results of this study, uncertainty is a major psychological stress in patients with thalassemia major. Healthcare providers should therefore consider the challenges and concerns faced by patients and, through utilizing appropriate training and communicational practices, plan interventions and strategies to empower patients for coping with uncertainty. Tehran University of Medical Sciences, Hematology-Oncology and Stem Cell Transplantation Research Center 2020-10-01 /pmc/articles/PMC7876423/ /pubmed/33603985 http://dx.doi.org/10.18502/ijhoscr.v14i4.4479 Text en Copyright © 2020 Tehran University of Medical Sciences. This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International license, (https://creativecommons.org/licenses/by-nc/4.0/) Non-commercial uses of the work are permitted, provided the original work is properly cited. |
spellingShingle | Original Article Ahmadi, Mehrnaz Gheibizadeh, Mahin Rassouli, Maryam Ebadi, Abbas Asadizaker, Marziyeh Jahanifar, Mojtaba Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study |
title | Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study |
title_full | Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study |
title_fullStr | Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study |
title_full_unstemmed | Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study |
title_short | Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study |
title_sort | experience of uncertainty in patients with thalassemia major: a qualitative study |
topic | Original Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7876423/ https://www.ncbi.nlm.nih.gov/pubmed/33603985 http://dx.doi.org/10.18502/ijhoscr.v14i4.4479 |
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