Ingram School of Nursing, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada.
Shriners Hospitals for Children - Canada, Montreal, QC, Canada.
J Med Internet Res. 2020 Sep 22;22(9):e17947. doi: 10.2196/17947.
Children with osteogenesis imperfecta (OI) experience acute and chronic symptoms that expose them to physical, mental, and social challenges. Empowering these children by involving them in their care can help them to cope with OI. Sisom is an interactive assessment and communication tool designed to help children aged 6-12 years with chronic illnesses express their symptoms. This tool has not yet been adapted to the unique needs of OI.
The aim of this study was to develop a Sisom OI paper prototype by seeking the perspectives of end users.
A participatory approach was adopted to develop the prototype overseen by an expert panel of 9 clinicians at a university-affiliated pediatric hospital. Purposive sampling was used to recruit 12 children with OI who were aged 6-12 years. The study was carried out over the course of 3 feedback cycles. Data were deductively interpreted using content analysis techniques.
Overall, 64% (57/89) of the Sisom symptoms were deemed relevant for inclusion in Sisom OI, with 42% (37/89) directly incorporated and 22% (20/89) incorporated with changes. In total, 114 symptoms were used to create the prototype, of which 57 were newly generated. The relevant symptoms addressed children's thoughts and feelings about hospitalization and their wishes for participation in their own care. The new symptoms addressed fractures, body image, and social isolation related to difficulties with accessibility and intimidation.
Once developed, Sisom OI will offer clinicians an innovative and child-centered approach to capture children's perspectives on their condition.
患有成骨不全症（OI）的儿童会经历急性和慢性症状，使他们面临身体、心理和社会挑战。通过让他们参与自己的护理来赋予这些儿童权力，可以帮助他们应对 OI。Sisom 是一种互动评估和沟通工具，旨在帮助 6-12 岁患有慢性疾病的儿童表达他们的症状。该工具尚未针对 OI 的独特需求进行调整。
本研究旨在通过寻求终末用户的观点，开发 Sisom OI 纸质原型。
采用参与式方法，在一家大学附属儿童医院的 9 名临床医生组成的专家小组的监督下开发原型。通过目的性抽样，招募了 12 名年龄在 6-12 岁的 OI 儿童。研究在 3 个反馈周期中进行。使用内容分析技术对数据进行演绎解释。
总体而言，64%（57/89）的 Sisom 症状被认为与 Sisom OI 相关，其中 42%（37/89）直接纳入，22%（20/89）纳入后进行了修改。总共使用了 114 个症状来创建原型，其中 57 个是新生成的。相关症状涉及儿童对住院的想法和感受，以及他们参与自己护理的愿望。新的症状涉及骨折、身体形象和与可及性和恐吓相关的社会隔离。
一旦开发完成，Sisom OI 将为临床医生提供一种创新的、以儿童为中心的方法来捕捉儿童对自身病情的看法。
