Potì Silvia, Emiliani Francesca, Palareti Laura
Department of Education Studies "Giovanni Maria Bertin," University of Bologna, Bologna, Italy.
J Patient Exp. 2018 Jun;5(2):140-146. doi: 10.1177/2374373517738234. Epub 2017 Nov 6.
Diabetes mellitus type 1 is a chronic illness that has its onset in childhood or adolescence. It is determined by the insufficient production of insulin. The main therapies consist of replacement of the lacking insulin, diet, exercise, and glycemic control. If treatment is managed by parents in childhood, adherence seems to be a difficult issue during adolescence. In order to understand the subjective experience of the illness and treatment, the present study aims to investigate the patients' subjective perspective by addressing a group of adolescents and young adults in pediatric care. A qualitative research design was adopted with semi-structured interviews, and later software thematic analysis was performed. Six core issues were deepened: family and health-care professional's mediation support for self-management, adherence to treatments as a boring responsibility, disclosure problems in peer relationships, difficulty in becoming autonomous in a period of socioeconomic crisis, illness as concern for the future, and seeking a normal life in daily activities. The knowledge can be useful for designing more appropriate interventions that favor the active engagement of patients.
1型糖尿病是一种在儿童期或青春期发病的慢性疾病。它是由胰岛素分泌不足所决定的。主要治疗方法包括补充缺乏的胰岛素、饮食、运动和血糖控制。如果在儿童期由父母管理治疗，那么在青春期坚持治疗似乎是一个难题。为了了解疾病和治疗的主观体验，本研究旨在通过对一组接受儿科护理的青少年和青年进行调查，来探究患者的主观观点。采用了定性研究设计，进行半结构化访谈，随后进行软件主题分析。深入探讨了六个核心问题：家庭和医疗保健专业人员对自我管理的调解支持、将坚持治疗视为一项枯燥的责任、同伴关系中的披露问题、在社会经济危机时期难以实现自主、对疾病对未来的担忧以及在日常活动中寻求正常生活。这些知识对于设计更合适的干预措施以促进患者的积极参与可能是有用的。
