Disease concealment: Experiences of thalassemia patients and their caregivers

Background and Objective: Disclosure of disease is one of the most complex challenges for individuals who live with thalassemia. This issue is associated with being stigmatized. It is usually associated with anxiety, fear, and negative reactions of other people. Exploring the experience of concealment resulting from thalassemia-related stigma and designing effective interventions is the key to effective treatment and caring of these patients. The present study was conducted to explain the experiences of thalassemia patients and their caregivers concerning disease concealment due to stigmatization. Materials and Method: This qualitative study performed through conventional content analysis approach. The 21 participants with major thalassemia and their caregivers were selected through purposive sampling. The research was performed in the medical facility of Samen Alhojaj, Kerman, Iran, during 2012-2013. Data were gathered through unstructured interviews and field notes. Data analysis was done using conventional content analysis approach Results: The concept of concealment experienced by patients and their caregivers included the reasons for concealment (disease as a barrier for goal achievement, patient’s personal traits as a barrier for disease disclosure, parents tendency for disease concealment, wrong behaviors and beliefs of the society due to stigmatization of the disease), strategies for concealment (secret caring and lying), and concealment outcomes (physical exhaustion, mental stress, deprivation of support). Conclusion: Patients’ experiences related to thalassemia stigmatization indicated that these patients not only experience adverse physical and mental outcomes of the disease, but also deal with the disease concealment resulting from social stigmatization. The results of the current study can be an introduction to planning interventions to resolve social problems of these patients and help promote their quality of life.

Keywords

Concealment

stigma

experiences

thalassemia

qualitative research

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