Document Type : Original Article

Authors

1 Chronic Diseases (Home Care) Research Center, Hamadan University of Medical Sciences, School of Nursing and Midwifery, Hamadan, Iran

2 Maternal and Child Care Research Center, Behavioral Disorders and Substance Abuse Research Center, Hamadan University of Medical Sciences, Hamadan, Iran,

3 Department of Biostatistics, School of Public Health, Modeling of Non‑Communicable Diseases Research Center, Hamadan University of Medical Sciences, Hamadan, Iran

4 Non‑Communicable Pediatric Disease Research Center, Health Research Institute, Babol University of Medical Sciences, Babol, Iran

Abstract

BACKGROUND: Caring for the children suffering from thalassemia is a stressful experience with
various aspects making the mothers face various challenges. Thus, the present study aimed to explain
the psychosocial challenges of mothers with thalassemia children based on their lived experience.
MATERIALS AND METHODS: In this qualitative study, which was conducted using the
phenomenological method, 14 mothers with thalassemia children were selected from two thalassemia
treatment centers in Hamadan and Babol (Iran) in 2020 using the purposive sampling method. Data
were collected using in‑depth and semi‑structured interviews and were analyzed by van Manen’s
phenomenological methodology.
RESULTS: In the first stage of data analysis, 534 initial codes were extracted, which were reduced
to 290 by comparison and integration. The primary themes turned into 24 secondary themes
after clustering. By comparing the secondary themes, three main themes (i.e., “psychological
distress,” “bodily burnout,” and “mothers’ need to empathy and support”) with 7 secondary
themes (i.e., “emotional exhaustion,” “mental strain,” “social stigma,” “acute psychosomatic reactions,”
“long‑term psychosomatic consequences,” “expectation of family support,” and support needs outside
the family) were extracted.
CONCLUSION: The results indicated that mothers with thalassemia children experience several
challenges in various aspects. Therefore, they require care interventions and psychosocial support.

Keywords

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