CanChild

CanChild is gearing up for an exciting week at the EACD Galway 2026 Congress in Galway, Ireland, from June 3–6! 🌍 🇮🇪 Check out our sessions scheduled for Wednesday, June 3 — you won’t want to miss them!

This exciting pre-congress day features:
🌟 A Pre-Congress workshop on implementation science facilitated by Andrea Cross, Kim Hesketh, Rachel Teplicky, and Vanessa Tomas
🎤 An inspiring Public Lecture by Peter Rosenbaum: Childhood Disability in the 21st Century: Out of the Shadows with the World Health Organization and some “F-Words!”

✨ Curious to learn more or explore the full program? Click here: https://www.eacd2026.com/

Congratulations to Danijela Grahovac on receiving the Kids Brain Health Network Outstanding Lived Experience Leader Award! 🌟 🎉

As a Technical Support Specialist at CanChild and a parent of a child with a disability, Danijela brings both lived experience and technical expertise to her work developing accessible digital platforms and learning environments for initiatives including the The F-words for Child Development, ENVISAGE, and Family Engagement In Research Course.

Danijela is a passionate advocate for accessibility and inclusion, helping ensure digital content is accessible to individuals of all abilities, including those using assistive technologies. Beyond her role at CanChild, she also supports inclusive recreation opportunities for children and youth through her work with All Abilities Allstars.

We are proud to celebrate Danijela and her ongoing contributions to accessibility, family engagement, and lived experience leadership! 👏

👉 Read more: https://ow.ly/bAeI50Z5hS9@

Co-creation processes are part of a movement to create change in collaboration with people with lived and living experience (PWLLE) in health and social services. Research co-creation with PWLLE is increasing, however, processes tend to include people who are well-connected in health and research environments, often excluding equity-deserving groups (EDGs).

This evaluation aimed to understand how equity-based co-creation (EqCC) is enacted in health and social services and what outcomes are produced. Informed by realist evaluation methods, a multiple case study methodology was used to explore four sites conducting EqCC projects. Four causal configurations were identified: (1) Values, (2) Driving Issue, (3) Organizational Infrastructure, and (4) Experiential Knowledge Network.

The causal configurations explored in this evaluation identify the key contexts, mechanisms and outcomes that support co-creation with people from EDGs. These may inform inclusive co-creation project design and the development of a middle-range theory of equity-based co-creation.

🌟 CanChild Co-Authors: Sam Micsinszki and Michelle Phoenix

🔗 Read the publication here: https://ow.ly/B8Yk50Z4K7f

On our way to Galway! 🌍 🇮🇪

CanChild is excited to share a mini-symposium at the 2026 EACD Conference:
Illustrating the Use of Co-Design to Advance Equity in Children’s Rehabilitation Services and Research

🗓 Saturday, June 6 | 10:30 AM – 11:30 AM (IST)
📍 Bailey Allen Hall

Led by Kristen Prest, Sue Woolfenden, Michelle Phoenix (Chair), Meaghan Reitzel, and Alea Jannath, this session explores how co-design can be used to advance equity in children’s rehabilitation and neurodevelopmental research.

By centring collaboration between families, clinicians, researchers, and policymakers, co-design creates more inclusive and responsive services—especially for underserved communities.

With reflections from individuals with lived experience, this session offers practical insights into building more equitable, inclusive, and impactful rehabilitation services.

We’re looking forward to sharing and learning together in Galway! ✨

🔗 Click here to access the full conference program: https://ow.ly/mSn750YNJVc

In the twenty-first century, granting organizations and journals increasingly expect health services research to include the active participation and voices of people with lived experience in studies relevant to their lives.

This paper reports the 30-year history of engagement between CanChild Centre for Childhood-Onset Disability Research and families of children with neurodisabilities.

We offer a brief background history of how these activities began and report on several programmes of research, knowledge sharing, and implementation that have benefitted enormously from the relationships with families and the insights they have provided on virtually every dimension of our work. We also briefly report on some of our recent formal and informal engagements with young people with lived experience, an aspect of our work that is now being more actively developed. We hope that this overview of one centre’s experiences and lessons learned from active partnerships with “the people who know” will be of value to others.

🌟 CanChild Co-Authors: Elizabeth Chambers, Andrea Cross, Danijela Grahovac, Debra Hughes, Samantha Micsinszki, Monika Novak Pavlic, Kinga Pozniak, Peter Rosenbaum, Rachel Teplicky, Vanessa Tomas, Marilyn Wright

🔗 Read the publication here: https://ow.ly/v38X50Z1N7E

This study aimed to examine parents’ experiences with healthcare services for their children with disabilities.

In a cross-sectional observational study, 131 parents provided written comments about their healthcare experiences in response to an open-ended question included in the newly updated Measure of Processes of Care (MPOC) 2.0 questionnaire. These comments were analyzed thematically using an inductive qualitative approach.

Four themes pertaining to relational aspects of care (i.e., experiences with service providers) and six themes pertaining to structural aspects (i.e., how healthcare services are organized and delivered) were generated. Three meta-themes captured associations between them: high turnover and inexperienced providers made it difficult to build rapport and trust; hard access and long wait times made parents feel stressed and burdened; and lack of transparency and poor internal communication left parents frustrated and unable to make good decisions. This study empirically links system-level issues to parents’ experience of family-centred service.

🌟 CanChild Co-Authors: Gillian King, Kinga Pozniak, Peter Rosenbaum, Rachel Teplicky, and Rae Martens

🔗 Read the publication here: https://ow.ly/MjsF50Z1MHM

👉 Click here to learn more about the newly updated MPOC 2.0 questionnaire: https://ow.ly/BaQS50Z1MHN

The COVID-19 pandemic profoundly altered daily life and interrupted key milestones during the transition to adulthood for Canadian youth with special healthcare needs (YSHCN).

In this patient-oriented mixed-methods study, interviews were conducted with 21 YSHCN or caregiver proxies, followed by a national survey completed by 516 YSHCN or their proxies. Participants described mixed experiences across healthcare, autonomy, relationships, vocation and lifestyle. Virtual care improved accessibility for some but deepened exclusion for others, particularly those needing hands-on or specialized support. Strengthened family connections and accelerated pathways to autonomy were positive outcomes, while disrupted healthcare access, delayed milestones and increased social isolation were common negative experiences. Family support and positive coping strategies emerged as key protective factors.

The study highlights the need for flexible health, education and community services that accommodate diverse needs. Findings underscore the importance of building inclusive, resilient systems and policies that preserve accessibility gains and meaningfully engage youth and families in post-pandemic recovery and future crisis planning.

🌟 CanChild Co-Authors: Jan Willem Gorter, Jessica Geboers, Danijela Grahovac, Barb Galuppi and Dayle McCauley

🔗 Read the publication here: https://doi.org/10.1111/cch.70294

This cross-sectional study used the CanChild tool About My Child to describe and compare areas of concern reported by 117 caregivers of children and adolescents with Down syndrome aged 0–18 years across different developmental stages.

Results showed that communication, participation in school and community, and behaviour were the most frequently reported concerns across all age groups, while the greatest perceived impacts on participation were related to the use of arms and hands, sleep, and hearing. Notably, no statistically significant differences in the level of concern or impact were found between caregivers of children and caregivers of adolescents, suggesting that caregiver concerns remain substantial and relatively stable throughout the lifespan.

These findings reinforce the importance of individualized, family-centred approaches and highlight the value of the About My Child as a clinical tool to guide goal-setting and service planning for families of children and adolescents with Down syndrome.

🌟 CanChild Co-Authors: Beatriz Helena Brugnaro, Marilyn Wright, Rachel Teplicky, Peter Rosenbaum and Olaf Kraus de Camargo

🔗 Read the publication here: https://ow.ly/UuiV50Z1INX

👉 Click here to learn more about the About My Child tool: https://ow.ly/Wv2R50Z1INW

Services and supports for early childhood development can enhance caregiver well-being, reduce stress, and increase confidence in parenting children with disabilities or developmental differences. Numerous programmes have been developed to provide these supports, but implementing them in real-world settings remains challenging.

This scoping review explored factors that influence the real-world implementation of family-focused programmes for early childhood development (0–8 years). The review followed Arksey and O’Malley’s six-step process and searched eight databases. 31 articles describing 26 programmes were included. Barriers and facilitators were mapped to the Consolidated Framework for Implementation Research (CFIR), identifying 204 barriers and 183 facilitators. The greatest barrier was opportunity among programme recipients, while the greatest facilitator was programme design.

Findings highlight the importance of early assessment of contextual factors, particularly families’ opportunity to engage, to improve implementation efforts.

🌟 CanChild Co-Authors: Vanessa Tomas and Kristy Wittmeier

🔗 Read the publication here: https://ow.ly/o1yE50YZAsj

This qualitative study, conducted in Brazil, used Interpretative Phenomenological Analysis to explore the pandemic experiences of 27 participants — including people with disabilities, caregivers, therapists, and teachers — through semi-structured interviews.

Findings revealed significant challenges such as disrupted access to health and educational services, mental health impacts, and loss of physical functioning, while also uncovering positive developments and key sources of community support, including rehabilitation centers, schools, and family networks. Participants also offered important recommendations for healthcare leaders, highlighting the need for stronger primary care, expanded telehealth, equitable access to therapies, and improved school inclusion.

This study provides valuable insights to inform more effective and inclusive public policies in Brazil and beyond!

🌟 CanChild Co-Authors: Beatriz Helena Brugnaro Marques and Olaf Kraus de Camargo

🔗 Read the publication here: https://ow.ly/2EUc50YZzQK