青少年1型糖尿病患儿对疾病认知和体验的质性研究

A qualitative study on the disease cognition and experience of adolescents with type 1 diabetes

目的 了解青少年1型糖尿病患儿对疾病的认知和体验,为设计和实施有效干预提供科学参考.方法 对9名青少年1型糖尿病患儿进行半结构式访谈,并运用现象学分析方法进行资料的整理和分析.结果 患儿自身对疾病的认知包括对1型糖尿病病因和防治的认知缺乏基本的认识、治疗依从性的认知差强人意2个主题,自身对疾病的体验包括患儿负性身心体验明显、想过正常人生活,有治愈的渴望,同时寻求社会支持和专业帮扶的需求强烈3个主题.结论 患儿对1型糖尿病认知的缺失和治疗依从的低下反映了自身和家庭乃至医院在疾病管理上的不足,明显的负性心理、渴望治愈和强烈的支持需求等疾病体验,期待在相关干预措施的设计和实施时充分考虑这些方面,进行个体化治疗和管理.

Objective To understand adolescent with type 1 diabetes on disease knowledge and experience and provide a scientific reference for the design and implement effective interventions. Methods Phenomenological research design and semi-structural interviews were conducted to 9 adolescent with type 1 diabetes, and used the method of phenomenological analysis for data. Results The adolescent patients were unsure about the causes and treatments of type 1 diabetes,and the cognition of the importance and necessity were vague to treatment compliance. The own experience of disease compose of negative physical and mental experience significantly, living a normal life,a desire to cure, seeking social and professional support demand strongly. Conclusions adolescent with type 1 diabetes and their family or the hospital are under inadequate treatment and disease management.It is suggested to pay attention to patients′ motivation and psychological,individual needs and effective medical communication in delivering intervention programs for adolescent with type 1 diabetes so that individualized treatment and management are performed.