Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study

Illness Uncertainty of Thalassemia Patients

  • Mehrnaz Ahmadi Department of Nursing, Student Research Committee, School of Nursing and Midwifery, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
  • Mahin Gheibizadeh Mail 2Nursing Care Research Center in Chronic Diseases, Jundishapur University of Medical Sciences, Ahvaz, Iran
  • Maryam Rassouli School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran
  • Abbas Ebadi 1) Behavioral Sciences Research Center, Life Style Institute, Baqiyatallah University of Medical Sciences, Tehran, Iran 2) Nursing Faculty, Baqiyatallah University of Medical Sciences, Tehran, Iran
  • Marziyeh Asadizaker Nursing Care Research Center in Chronic Diseases, Jundishapur University of Medical Sciences, Ahvaz, Iran
  • Mojtaba Jahanifar Shahid Chamran University of Ahvaz, Ahvaz, Iran
Keywords:
Patients with thalassemia, Uncertainty, Qualitative study, Iran

Abstract

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.

 

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Published
2020-10-07
How to Cite
1.
Ahmadi M, Gheibizadeh M, Rassouli M, Ebadi A, Asadizaker M, Jahanifar M. Experience of Uncertainty in Patients with Thalassemia Major: A Qualitative Study. Int J Hematol Oncol Stem Cell Res. 14(4):237-247.
Section
Original Article(s)