Self-care in Patient with Major Thalassemia: A Grounded Theory

Abstract

Introduction: Self-care is the core concept of health care and may be considered as one’s stabilization, and restoration as well as the improvement of his/her health and well-being. Looking at the process of Self-care from patients’ perspective who suffer from thalassemia may assist the nurses and health care providers to facilitate the health process. Thus this study was conducted to discover the process of self-care in patients with major thalassemia. Methods: This qualitative study was conducted with grounded theory approach. 21 patients with major thalassemia from a Medical Research Center, supervised by Kerman Medical University, were selected through purposeful and theoretical sampling. Data were collected by unstructured interviews which lasted 30-60 minutes. These data were analyzed using the method of Corbin and Strauss. Results: The main theme of "struggling to improve life quality" that included the sub-themes of "focus on needs of illness, "activating resources" and "restoring a new identity with thalassemia" were extracted from the data. This theme implies that participants endeavor to strengthen their self- efficacy via thalassemia. "Looking for strengthening self-efficacy in light of thalassemia" was the core theme in this study. Conclusion: Facilitating the process of self-care in patients with major thalassemia requires that they be helped so that their self-efficacy, influenced by real life conditions, might be strengthened in light of thalassemia. Increasing public awareness and social support may affect the recognition of individual, family and society.

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

“…Psychosocial coping through employing different coping strategies was another way of coping with uncertainty in these patients. Consistent with the results of the present study, the use of different coping strategies in coping with disease and reducing uncertainty in patients have been shown in several previous studies 10 , 13 , 15 . Moreover, in line with the results of our study, other studies have emphasized the role of social support from family, friends, and peers as one of the factors that can directly and indirectly influence coping with the disease and uncertainty as well as the disease control 12 , 13 , 38 .…”

“…Studies have shown that those who benefit from spiritual coping are more adapted to the complications and stresses of illness (36, 37). The role of spirituality in hope and coping with illness and overcoming anxiety and worry has been shown in various studies 10 , 19 , 37 .…”

“…In the present study, concerns about the complications of the disease and the side effects caused by repeated blood transfusions were important aspects of future uncertainty in patients with thalassemia major. Previous studies have also shown that the likelihood of disease progression together with the disease and treatment complications leads to numerous fears and concerns in thalassemia patients 8 , 10 , 19 , 22 , 23 and other chronic patients as well 16 , 24 , 25 . Fear of complications can lead to either positive or negative consequences for these patients.…”

“…Problems such as financial constraints, reduced income or unemployment, performance-related limitations, drug restrictions, health-related problems, poor financial and family support, and the lack of a comprehensive support network can negatively affect the patients' physical and psychological health and reduce their quality of life drastically 8 , 9 . These stressful problems affect different aspects of the life of thalassemia patients broadly and provide the basis for uncertainty about the future in these patients 8 - 10 . Uncertainty is defined as a cognitive state arising from inability to determine meaning or inability to predict disease-related events 11 .…”

The Impact of Self-care Education Based on Orem's Model on Self-care Behaviors of Patients with β-Thalassemia Major: A Clinical Trial

“…This is inconsistent with the results of the present study, insofar as nutrition is concerned. To explain this discrepancy, one may consider the suggestion made by Pouraboli et al (28), which articulates that self-care activities of patients with thalassemia are affected by living conditions, public awareness, and social support. Thus, in addressing self-care behaviors of a particular population, it is necessary to take account of these three issues in order to evaluate self-care interventions more accurately.…”