重型β地中海贫血患儿家属疾病认知及心理体验的质性研究

Qualitative study on the cognition and psychological experience of thefamily members of children with β-thalassemia major

目的探讨重型β地中海贫血(简称重型β地贫)患儿家属应对患儿疾病过程中的心理体验与需求,为临床医护人员实施针对性、个体化干预措施提供依据。方法通过质性研究访谈形式访问25例重型β地贫患儿家属,将获得的资料进行分析、归纳和整理,提炼主题。结果重型β地贫患儿家属承受着巨大心理压力,表现为初次确诊时的震惊与质疑,治疗过程中的愤怒与抑郁、自责与自我怀疑,治疗后期对未来的担忧与不确定、感觉照顾负担重及生活质量下降、渴望多方支持与帮助等一系列心理体验。结论重型β地贫患儿家属存在一系列的心理问题及负面情绪,医护人员应强化专业知识的普及,开展多种形式的健康教育,给予重型β地贫患儿家属足够的信息支持与专业指导,使其积极配合治疗,从而改善患儿预后,提高患儿及其家属的生活质量。

Objective To explore the psychological experience and needs of the family members of children withβ-thalassemia major in the process of coping with the disease,so as to provide the basis for clinical medical staff to implement targeted and individualized interventions.Methods Twenty-five family members of children withβ-thalassemia major were interviewed in the form of qualitative research interview.The data obtained were analyzed,summarized and sorted out,and the theme was raised.Results The family members of children withβ-thalassemia major were suffering from great psychological pressure,which were manifested in shock and doubt at the initial diagnosis,anger and depression,self blame and self doubt in the treatment process,worry and uncertainty about the future,feeling heavy burden of care and declining quality of life,and thirsting for multiple support and help in the later stage of treatment.Conclusion The family members of children withβ-thalassemia major have a series of psychological problems and negative emotions.The medical staff should strengthen the popularization of professional knowledge,carry out various forms of health education,give sufficient information support and professional guidance to the family members of children withβ-thalassemia major,make them actively cooperate with the treatment,so as to improve the prognosis of children,improve the quality of life of children and their families.