Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Jul 23, 2020
Date Accepted: Apr 21, 2021
Date Submitted to PubMed: Aug 12, 2021
Experiences Shared by children with Osteogenesis Imperfecta in the Co-Design of the Interactive Assessment and Communication Tool Sisom OI: A Secondary Analysis of Qualitative Design Sessions
ABSTRACT
Background:
Children with Osteogenesis Imperfecta (OI) experience a diversity of symptoms that expose them to difficult physical, mental, and social challenges. Sisom is an interactive assessment and communication tool designed to help children with chronic conditions aged 6-12 express their symptoms. Recently, the co-design of Sisom OI was launched by seeking the perspectives of end users including children with OI.
Objective:
The aim of this study was to describe what children with OI were prompted to share during this co-design process.
Methods:
A qualitative descriptive study was conducted at a university-affiliated, pediatric, orthopaedic hospital. Data used for this secondary analysis were extracted from the transcripts of 12 children with OI aged 6-12 years who participated in the co-design of Sisom OI. Qualitative description was used to identify themes and subthemes.
Results:
Three themes were identified. The first, “Relating to Others”, described the balance between feeling different versus feeling similar to other children. The subthemes were “Common OI Experience”, “Feeling Different”, and “Feeling Just Like Others”. The second, “Relating to their Condition”, described children’s positive and negative interactions with their own condition and health care. The subthemes were “Understanding their Condition”, “Special Relationship with the Hospital”, and “Difficult Treatments and Procedures”. The third, “Reflecting on Capabilities”, described children’s recognition of their strengths and limitations. The subthemes were: “Perceiving Limitations”, “Overcoming Isolation”, and “Celebrating Strengths”.
Conclusions:
By eliciting the voices of children in the co-design of Sisom OI, children with OI eloquently described their experiences relating to others, relating to their condition, and relating to themselves
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