The voice of children with OI

Interview with Jenny Wang, Shriners Hospitals for Children (SHC) – Canada and Khadidja Chougui, PhD candidate in clinical child and adolescent psychology at Université de Montréal, Canada

Jenny Wang portraitJenny Wang: My name is Yi Wen (Jenny) Wang, and I graduated from McGill University with a Bachelor of Science Nursing degree in 2019 and a Master of Education degree in 2021. My work in OI started when I was awarded the McGill University Faculty of Medicine Research Bursary in 2018, which led me to start working at the Shriners Hospitals for Children (SHC) – Canada under the supervision of Dr. Argerie Tsimicalis and Dr. Franco Carnevale on the project Moral Experiences of Children with Osteogenesis Imperfecta. I now continue to collaborate with the team at SHC-Canada to contribute to the development of tools and resources that address the needs of children with OI and their families.

Khadidja Chougui: My name is Khadidja Chougui, and I am a PhD candidate in clinical childKhadidja Chougui and adolescent psychology at Université de Montréal. I have a long-standing relationship with the SHC-Canada as I, myself, have OI type III. I joined the nursing research team, led by Dr. Argerie Tsimicalis, in 2015, when I had just graduated from McGill University with a Bachelor of Arts and was looking to gain more research experience. I have worked on many OI-related research projects, including the Moral Experiences of Children with Osteogenesis Imperfecta.

*Please note that most responses were written by both Khadidja and Jenny. Certain questions (specified) were answered by Khadidja only.

What was your research project about?

Phases 1 and 2 involved using art-making to elicit children’s voices and explore their desired and actual participation in health-related discussions, decisions and actions in the OI hospital and community. We collected data from interviews with 10 children with OI, observations and field notes, children’s art (e.g., drawings, paintings, fictional stories, and dolls), and 57 local documents to help us learn about the study context. Building on previous phases, Phase 3 involved convening stakeholders to disseminate findings, identify ethical concerns and generate action steps, resources and tools that enhance clinicians’ abilities to engage with children, and navigate ethical concerns in children’s OI care. The product of Phase 3 was an ethical framework and clinician worksheet to optimise the participation of children with OI in their healthcare.

What were your most interesting findings?

We found that children often experienced anger, frustration, and disappointment when they felt excluded from their care. In contrast, alternative forms of communication such as art-making facilitated their self-expression and helped them to participate more actively in their care.

Any surprising findings?

The notion that children should participate in their care is becoming increasingly accepted. Despite children’s desires, active involvement in their care is sometimes missing due to a lack of child-oriented educational resources and/or encouragement from adults around them. Art-making appeared to attenuate some of these challenges as it helped children to reveal things about their experiences that they otherwise wouldn’t have disclosed.

Are there any differences between children with OI and children with other conditions?

Khadidja: The voices of children with medical conditions are not always heard or given due weight when making important decisions about their care. This can be further exacerbated in children with OI due to their characteristically short stature, making them look younger than they are. Often healthcare professionals talk primarily to parents rather than the patient, which can contribute to the experience of anger, frustration, and disappointment reported in our study. That is why we must find ways to facilitate communication as children do not always express themselves in the same way that adults or adolescents do.

What is the most important take-home message for clinical work?

Children’s voices are not limited to speech, and it is crucial for healthcare providers to provide opportunities for children to express themselves. Since a lack of hospital resources can hinder clinicians’ abilities to engage children in their care, our studies fill critical gaps in children’s OI care by showcasing the value of alternative forms of communication and the necessity for resources and tools (such as the ethical framework we developed) which may help healthcare providers engage with children.


Argerie Tsimikalis, Jenny and colleague in Amsterdam

Did you have any form of patient involvement in the planning/implementation of the project?

I (Khadidja) have been a member of the research team since 2015. Dr. Tsimicalis has always believed in patient engagement, even before it had become the latest buzzword. She was looking for an academic with OI to bring their unique perspective gained through the lived experience of this condition. In this specific project, I was involved from the beginning to the end. It always warms my heart when participants light up, when they see themselves in me, and it has helped facilitate recruitment and study participation. My input during data analysis has always been valued and respected, which has led to many enriching discussions that allowed us to learn from one another.

Any messages for the readers of OIFE Magazine?

Thank you for the opportunity to showcase our work! We hope that our research project helps to highlight the value of child-centric research methods, particularly in children with rare conditions and chronic illnesses, as well as the untapped potential for further research opportunities using these methods to develop tools and resources to improve their care.

This article was first published in OIFE Magazine 3-2022.

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