Nabavian Majedeh, Cheraghi Fatemeh, Shamsaei Farshid, Tapak Lily, Tamaddoni Ahmad
PhD Student in Nursing, Nursing and Midwifery School, Hamadan University of Medical Sciences, Hamadan, Iran.
Chronic Diseases (Home Care) Research Center, Hamadan University of Medical Sciences, School of Nursing and Midwifery, Hamadan, Iran.
J Educ Health Promot. 2022 Jan 31;11:37. doi: 10.4103/jehp.jehp_163_21. eCollection 2022.
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.
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.
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.
The results indicated that mothers with thalassemia children experience several challenges in various aspects. Therefore, they require care interventions and psychosocial support.
照顾患有地中海贫血的儿童是一段压力重重的经历，诸多方面使母亲们面临各种挑战。因此，本研究旨在基于有地中海贫血患儿的母亲的生活经历，阐释她们所面临的心理社会挑战。
在这项采用现象学方法的定性研究中，2020年通过目的抽样法从伊朗哈马丹和巴博勒的两个地中海贫血治疗中心选取了14位有地中海贫血患儿的母亲。通过深度和半结构化访谈收集数据，并采用范曼现象学方法进行分析。
在数据分析的第一阶段，提取了534个初始编码，经比较和整合后减少至290个。聚类后，主要主题转变为24个次要主题。通过比较这些次要主题，提取了三个主要主题（即“心理困扰”、“身体倦怠”和“母亲对同理心和支持的需求”）以及7个次要主题（即“情感耗竭”、“精神压力”、“社会耻辱感”、“急性身心反应”、“长期身心后果”、“对家庭支持的期望”和“家庭之外的支持需求”）。
结果表明，有地中海贫血患儿的母亲在各个方面都经历了诸多挑战。因此，她们需要护理干预和心理社会支持。
