Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Jan 27, 2020
Date Accepted: Apr 10, 2020
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Giving Children with Osteogenesis Imperfecta a Voice: A Participatory Approach for the Development of Sisom OI – An Interactive Assessment and Communication Tool
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. Sisom is an interactive assessment and communication tool designed to help children with chronic illnesses aged 6-12 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 with OI aged 6-12 years. The study was carried out over the course of three feedback cycles. Data were deductively interpreted using content analysis techniques.
Results:
Overall, 70% of Sisom symptoms were deemed relevant for inclusion in Sisom OI, with 49% directly incorporated, and 21% incorporated with changes. In total, 122 symptoms were used to create the prototype among which 59 were newly generated.
Conclusions:
The relevant symptoms addressed children’s thoughts and feelings about hospitalization and 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.
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Copyright
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