Dear CanChild,

Welcome to the October 6th edition of CanChild Today! In this issue, we highlight upcoming events, information about this week's featured CanChild product, opportunities to participate in research studies, and summaries of new publications by our CanChild members!

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Our past issues are archived on the CanChild website and can be accessed here.

Since it was first established in 2012, World CP Day has been a day of celebration, awareness, advocacy, research and innovation, and, most importantly, inclusion.

On this important day, we'd like to ask you to save the date for the 2023 CP-NET Science and Family Day. This event is on November 24th, and is being hosted virtually! This year's event takes a look at relationships in the lives of kids and families with CP.

Registration will open soon!

Every child’s story is a treasure: Children with disabilities and their parents speak about their experiences during the COVID-19 pandemic and their needs for services and supports moving forward.

Children and youth with disabilities and special healthcare needs, and their families, have been uniquely affected by the COVID-19 pandemic. This research study is a partnership between youth, parents, and researchers. We used a combination of visual methods and interviews to learn about the experiences of these children and their parents to identify the supports and services children and families need at present and moving forward. 

Date: Wednesday, October 25 @ 7 p.m. EST

Location: Online

Ready, Set, Go: Finding Positive Solutions to Support a Successful Landing in the Adult World



The Child Health Hub in Transition to Adult Healthcare is excited to host the 2nd Transition to Adulthood Pop-Up event with Children's Healthcare Canada.

Date: December 2-3, 2023

Location: Hyatt Regency in downtown Vancouver

Participants will hear from local, provincial, and Canadian thought leaders, peers and families. You can expect presentations and panels with young people and parents, networking opportunities, and a showcase of current evidence-based solutions for healthcare transition. For those unable to join in-person, aspects of the event will be made available in a virtual format.

For more information, visit the Transition Hub website.

The Youth, Young-adult Participation & Environment Measure (Y-PEM) is a new product that has been added to the CanChild Shop!

The Y-PEM is a self-reported measure that examines the participation and environment of youth and young adults ages 12-30 years across four settings: home, school/educational setting, community, and the workplace.

The Y-PEM is designed to gather the first-hand experiences of youth and young adults about their current participation and the perceived supports and barriers to participation. The newly added workplace participation domain (or setting) contains six participation items (activity sets) and 16 environmental items.

For additional information about this product, visit the CanChild Shop!

Measure of Processes of Care (MPOC 2.0)

Researchers at CanChild have developed a new questionnaire to measure parents’ experiences with healthcare services for their children with disabilities. Now, we would like to have parents test it out!

Complete a set of questions to tell us about your experiences with healthcare services. You will receive a $20 e-gift card upon completion!

Interested in participating? Want more information?

Please email the study team at mpoc2@mcmaster.ca

This study has been reviewed by the Hamilton Integrated Research Ethics Board under project #15702.

The Journey to Sustainable Participation in Physical Activity for Adolescents Living with Cerebral Palsy

This study explored the experience of participation in physical activity (PA), the role of long-term participation in PA, and the importance of remaining active for life. Eight ambulant adolescents with CP (aged 11-16 years, seven male) participated in a high-level mobility programme twice per week for 12 weeks. Guided using interpretive description, adolescents and 12 of their parents were interviewed before, after and nine months following the program. Thirty-eight interviews were coded, analyzed, and interpreted, informed by audit information, reflective journaling, and team discussions. Adolescents and their parents highly value being active now and into adulthood. Sustainable participation in PA requires adolescents and families to navigate complex environments (interpersonal, organizational, community, and policy). The study concludes that the journey to sustainable participation was complex and dynamic. Experiences of successful journeys are needed to help adolescents with CP "stay on track" to sustainable participation.

Authors: Gaela Kilgour, Ngaire Susan Stott, Michael Steele, Brooke Adair, Amy Hogan, Christine Imms

Programs Promoting Virtual Social Connections and Friendships for Youth with Disabilities: A Scoping Review

This article explores what is known about programs that support youth with physical and developmental disabilities to create virtual social connections as a means toward friendships. Two reviewers screened peer-reviewed articles that described programs in which participants, ages 8-20, interacted with others online and reported outcomes related to virtual social connections and friendships in their personal social networks. Data was extracted from these articles using program characteristics (e.g., duration, group members, online platform), qualitative description outlining access, and participation experiences. After screening 12,605 articles, nine were determined eligible. Programs followed two approaches: (1) training youth to use the internet and technology to access virtual spaces independently; and (2) designing virtual opportunities and activities that encourage youth interaction and collaboration. Each approach was grounded in the principles of fostering privacy and independence (i.e., socializing with peers without relying on caregivers), safety and self-expression (i.e., communicating authentically), and confidence and capability (i.e., trying new skills). This scoping review provides guidance on enhancing access and participation of youth with disabilities in virtual spaces where they can develop social connections that increase chances for friendships.

Authors: Eric Smart, Joelle Li, Maria Becerra, Gillian King

How to support children to develop and express their coping preferences around minor invasive medical procedures: children's and parents' perspectives



This study aims to understand how to help kids cope with pain and fear during minor medical procedures, in order to reduce their discomfort. Invasive medical procedures in hospitals are major sources of stress in children, causing pain and fear. Non-pharmacological interventions are indispensable in effective pain and fear management, but these interventions must be personalized to be effective. Data was collected through semi-structured individual interviews with nineteen children (8-18 years old) and fourteen of their parents who have undergone at least five minor invasive medical procedures in the last year. The experiences, needs, and wishes expressed in the interviews could be classified into one overarching theme, the personal process, and two content-related sub-themes: feeling trust and gaining control. Children and parents reported it as a continuous process, different for every child with unique needs. Children and parents expected personalized attention and tailored support from professionals. The study concludes that professionals must combine clinical skills with child-tailored care. In searching for and communicating about coping preferences children's unique needs and personal boundaries will be respected when searching for and communicating about coping preferences.

Author:Elisabeth W Segers, Marjolijn Ketelaar, Marjorie A C P de Man, Lisette Schoonhoven, Elise M van de Putte, Agnes van den Hoogen