Dear CanChild,

Welcome to the October 13th edition of CanChild Today! We are excited to share a new CanChild resource, research opportunities, an upcoming event, recent news, and summaries of recent publications.

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

About My Child is a caregiver report tool. It can be used to collect narrative descriptions of a child and family's strengths and to document concerns related to 20 areas of child development. For each area of concern, caregivers are asked to rate the impact the concern has on a child’s ability to participate in everyday activities. These responses can be scored to provide a measure of 'health complexity' ranging from 0 to 80. About My Child has been used in research and as a clinical intake tool to facilitate discussions about and document service needs. 

Thanks to everyone who helped us celebrate World Cerebral Palsy Day at the CP-NET Science and Family Day! If you attended, we would love to hear your feedback, which will inform next year's conference.

Missed the program? We will notify you on our social media channels and via our newsletter when recordings are made available.

Click here to check out last year’s CP-NET conference recording to discover more! 

Calling pediatric service providers AND parents of children with a developmental disability! CanChild researchers are currently developing an updated version of MPOC, our measure of family-centred service. We now have a draft of a new tool ready for review.  

We would like pediatric service providers and parents to give us feedback on the items (questions) on the tool. If you are interested or would like more information please contact us at mpoc2@mcmaster.ca

Western University is currently recruiting Canadian parents/caregivers and rehabilitation health professionals of children with Cerebral Palsy and complex communication needs to complete a survey about a new assessment tool called the Computer-Based Instrument for Low Motor Language Testing (C-BiLLT)!

For parents/caregivers: The purpose of the survey is help us understand your experiences and needs related to assessment of children’s language comprehension.

For clinicians: The purpose of the survey is to help us understand the current language comprehension assessment practices and needs.

The survey is anonymous and can be completed online. If you are interested, please see click on the buttons below, or you can email the Research Coordinator, Sarah, at hopmansn@mcmaster.ca. Thank you!

Sexuality (who someone is attracted to and their activities to express sexuality) and Gender identity (who they are) are two core elements of human personality. Transition from childhood to adulthood is the prime time when an individual develops these core elements of life. It is evident that adolescents or young adults with cerebral palsy do not receive enough education or support from the health care providers during their transition period regarding sexuality and gender. People with cerebral palsy may require additional education and support due to physical impairment; however, their needs are generally overlooked and they are often considered as asexual by their health care providers.

In this study, our goal is to understand the influences of sexuality and gender identity on the transition experience of youth with cerebral palsy. We will use a questionnaire and interviews to gather information about their experiences. Adolescents or young adults aged 14 to 25 with cerebral palsy of any gender are asked to contact the study team at lbrunto3@uwo.ca 

• We are looking for Canadian youth (ages 16-24) with special healthcare needs (diagnosed with a disability or chronic physical/mental health condition) to participate in an online interview about healthcare transition from pediatric to adult services during COVID-19. Contact Barb Galuppi galuppi@mcmaster.ca to participate in this research study. Click here to learn more.

• Do you have a child or adolescent with Cerebral Palsy between 2 to 18 years old? Would you like to participate in a measurement study to test a new instrument called Gross Motor Function Family Report? If you are interested or have any questions, please email chagasp@mcmaster.ca.

What is possibly the CanChild equivalent of The Avenger? Perhaps this line up of CanChild-affiliated scientists that presented keynotes during the symposium "Capturing the Magic – Participation for all" (CAPA) at Beitostølen, Norway.

Congratulations to Monika Novak Pavlic on a successful PhD Thesis Defense! She explore ways to support parents of children with developmental disabilities.

20 Years of ICF—International Classification of Functioning, Disability and Health: Uses and Applications around the World.

The International Classification of Functioning Disability and Health (ICF) was approved in 2001 and, since then, several studies reported the increased interest about its use in different sectors. A recent overview that summarizes its applications is lacking. This study aims to provide an updated overview about 20 years of ICF application through an international online questionnaire, developed by the authors, and sent to each World Health Organization Collaborating Centers of the Family of International Classifications (WHO-FIC CCs). Data was collected during October 2020 and December 2021 and descriptive content analyses were used to report main results. Results show how, in most of the respondent countries represented by WHO-FIC CCs, ICF was mainly used in clinical practice, policy development and social policy, and in education areas. Despite its applications in different sectors, ICF use is not mandatory in most countries but, where used, it provides a biopsychosocial framework for policy development in health, functioning and disability. The study provides information about the needs related to ICF applications, that can be useful to organize targeted intervention plans. Furthermore, this survey methodology can be re-proposed periodically to monitor the use of the ICF in the future.

Authors: Leonardi, M., Lee, H., Kostanjsek, N., Fornari, A., Raggi, A., Martinuzzi, A., ... & Kraus de Camargo, O. (2022). International journal of environmental research and public health, 19(18), 11321. doi: 10.3390/ijerph191811321