Giving Children With Osteogenesis Imperfecta a Voice: Participatory Approach for the Development of the Interactive Assessment and Communication Tool Sisom OI.

ABSTRACT:

Background

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.

Objective

The aim of this study was to develop a Sisom OI paper prototype by seeking the perspectives of end users.

Methods

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

SUBMITTER: Siedlikowski M 

PROVIDER: S-EPMC7539168 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature