Michalovic Alisha, Anderson Charlotte, Thorstad Kelly, Rauch Frank, Tsimicalis Argerie
Author Affiliations: McGill University, Ingram School of Nursing (Mss Michalovic and Anderson and Drs Rauch and Tsimicalis); and Shriners Hospitals for Children (Ms Thorstad and Drs Rauch and Tsimicalis), Montreal, Quebec, Canada.
Clin Nurse Spec. 2020 May/Jun;34(3):99-106. doi: 10.1097/NUR.0000000000000517.
To explore the perceived self-management needs of young adults with osteogenesis imperfecta (OI) with the goal of optimizing the self-management and transitional care services.
A qualitative descriptive study was performed with young adults diagnosed with OI. Two semistructured interviews were conducted before and after their first appointment with a nurse practitioner in the adult healthcare settings (a new partnership initiated by the pediatric hospital). Data were transcribed and descriptively analyzed.
Seven participants with OI types I, III, and IV were interviewed. Ages ranged from 23 to 34 years, and years since discharge from the pediatric hospital ranged from 3 to 10. Four themes emerged including (1) dropped in the jungle, with no one to call; (2) they do not know how to treat me; (3) I feel like I'm going to get back in the loop; and (4) self-managing what I know, how I know.
Similar to other childhood-onset conditions, adolescents and young adults with OI require education and mentorship, and clinicians in the adult healthcare system need to be prepared and supported to receive them. Collective efforts are needed to improve the self-management and transitional care needs for young adults with OI.
探讨成骨不全症（OI）青年患者自我管理方面的需求，以优化自我管理和过渡性护理服务。
对诊断为OI的青年患者进行定性描述性研究。在他们首次预约成人医疗机构的执业护士（由儿科医院发起的新合作关系）之前和之后进行了两次半结构化访谈。对数据进行转录和描述性分析。
对7名I型、III型和IV型OI患者进行了访谈。年龄在23至34岁之间，自儿科医院出院的时间为3至10年。出现了四个主题，包括（1）掉进丛林，无人可求助；（2）他们不知如何治疗我；（3）我感觉自己又要回到原来的状态；（4）自行管理我所知道的以及我了解的方式。
与其他儿童期发病的疾病类似，患有OI的青少年和青年需要教育和指导，成人医疗系统中的临床医生需要做好准备并得到支持来接纳他们。需要共同努力来改善患有OI的青年患者的自我管理和过渡性护理需求。
