Hearing and mobilizing parents’ voices for knowledge exchange

Last year, Dr. Kimberley Widger and her team were recipients of the 2025 Leong Centre Community Engagement and Knowledge Mobilization Grant for their project, Engagement and Co-Design with Parents of Children with Medical Complexity to Enhance Care for Children with Medical Complexity. The project aims to strengthen care for children with medical complexity and neurological impairment by meaningfully engaging parents as partners in identifying their priorities and co-designing solutions that reflect the realities of family experiences. In this feature, they share an update on the progress of their project and discuss how this work developed directly from parents’ voices.

Children living with medical complexity (CMC) and neurological impairment (NI) often have life-limiting conditions associated with distinct healthcare needs and experiences. Enhancing quality of life (QoL) is often a central focus of their healthcare, however, the meaning of QoL to CMC+NI has not been adequately explored. Many children with CMC+NI experience communication challenges that limit their ability to directly express their wishes and preferences. As a result, research examining their QoL has largely relied on the perspectives of parents and healthcare providers (HCPs).

We recently completed a study exploring the meaning of QoL for CMC+NI living with life-limiting conditions. In this study, we engaged parents of CMC+NI however, we asked them specifically to consider and reflect on how their child might describe QoL and what QoL means to them. From these interviews, we generated a conceptual framework of QoL for CMC+NI who are living with life-limiting conditions. This framework has four core concepts: Physical wellbeing; Meaningful time; Being known; and Inclusion and two contextual factors: Parental wellbeing; and Homecare nursing support.

As we conducted this study, we continued to hear from parents how important their child’s QoL to them was and how they considered it daily. We also heard parents talking about their child’s QoL in ways that differed from traditional conceptualizations of QoL that focused more on their limitations rather than their strengths. Parents also told us that they wished that HCPs understood their child’s QoL beyond a deficit-based perspective. As one parent noted: “My child’s life is more than their disability... I wish people understood that.” The objective of this current research is to facilitate the sharing of parents’ experiences of their child’s QoL. Specifically, this research involves the knowledge mobilization of our conceptual framework of QoL for CMC+NI living with life-limiting conditions through story and co-design with parents of CMC+NI.

This current research has two studies: 1) Developing digital stories with parents of CMC+NI and 2) Co-designing with parents of CMC+NI a QoL tool that would facilitate their ability to discuss their child’s QoL with their HCP. In the first study, bereaved and non-bereaved parents who participated in the previous study are invited to create a digital story of their child’s QoL. A digital study is an arts-based method that combines narrative storytelling with images and audio. Recruited parents are asked to describe and reflect on what QoL means to their child. In the second study, recruited bereaved and non-bereaved parents of CMC+NI across Ontario are invited to co-design together a practical application of our developed conceptual framework of QoL. This knowledge mobilization tool will use a human-centred design approach to ensure that it reflects the perspectives and opinions of parents of CMC+NI. This tool will be an accessible written resource to support parents to easily discuss with HCPs what QoL means for their child.

Our research is grounded in the lived experiences of children with CMC+NI with life-limiting conditions. Parents are active interpreters of their child’s QoL and we hope this research provides accessible opportunities for parents of CMC+NI to talk about their child’s QoL in ways that reflect what is most meaningful and important to their child.