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Dear CanChild,
Happy New Year and welcome to the January 12th edition of CanChild Today! To kickstart 2023, we are excited to share recent CanChild news, an upcoming research event, CP-NET feedback, research opportunities, a CanChild shop feature, and summaries of recent publications.
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Our past issues are archived on the CanChild website and can be accessed here.
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McMaster features the 'F-Words'! | |
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Titled The 'F-words' in childhood disability: I swear this is how we should think!, Rosenbaum and Gorter’s paper features six F-Words they say should be the focus in childhood disability: functioning, family, fitness, fun, friends and future.
So far, The F-Words has notched up 62,000 downloads, including more than 11,000 in 2022 alone, as well as 470 literary citations. CanChild’s F-Words resource hub has recorded 97,800 unique visitors, 13,200 downloads of F-Words tools and 50,000 views of three key videos.
Have you checked out the F-words resources yet?
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Your COVID story is a treasure!
If you have a child between 8-21 who has a disability…
Researchers at CanChild Centre for Childhood Disability Research, McMaster University invite both you and your child to participate in a research study about your experiences during the COVID pandemic and ideas about improving health and education services and supports. We will work with each family to figure out a way for all youth and parents to share their stories in a way that works for them. For more information, email Anna Swain at minchena@mcmaster.ca
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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, and Health care providers who are directly connected with the health care transitioning experience of the youth with cerebral palsy are asked to contact the study team at lbrunto3@uwo.ca or usalma@uwo.ca.
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Do you want to participate in more CanChild affiliated research? Current projects include:
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Pathways and Resources for Engagement and Participation (PREP) is an evidence-based intervention that focuses on enhancing participation through modifying the environment. Using this skills-based approach, therapists work with the client (and his/her parent or caregiver when appropriate) to identify aspects of the environment and the activity that either support or hinder participation. | |
Recent Publications by CanChild Members! | |
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Development of children, adolescents, and young adults with cerebral palsy according to the ICF: A scoping review.
The purpose of this review was to summarize research on the development of people with cerebral palsy (CP) over time and to identify areas of focus in relation to the World Health Organization's International Classification of Functioning, Disability, and Health (ICF). The review focused on the activity and body functions and structures of individuals with CP, but little research has been done on participation and contextual factors over time. This information is useful for therapists and parents to understand how to approach treatment and understand the likely outcomes for people with CP.
Authors: Chagas, P. S. C., Magalhães, E. D. D., Sousa Junior, R. R., Romeros, A. C. S. F., Palisano, R. J., Leite, H. R., & Rosenbaum, P. (2022). Developmental Medicine & Child Neurology.15484. doi: 10.1111/dmcn.15484
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Content Validity and Utility of the Collaborative Process for Action Plans to Achieve Children’s Participation Goals
In this study, the Collaborative Process for Action Plans to Achieve Children's Participation Goals was evaluated for its content validity and clinical utility. It was found to have high content validity, as a large majority of therapists agreed on the importance of various aspects of the process. Its clinical utility was also evaluated by having parents, children, and therapists use it in a real-world setting, and it was found to promote engagement and a joint commitment to the action plan. However, there were some limitations noted, including the time required to complete the process, the need for preparation and more guidance, and unfamiliar expressions. Further research is recommended to evaluate the effectiveness of the action plan in helping children achieve their participation goals.
Authors: Palisano, R.J., Chiarello, L.A., Vänskä, N., Sipari, S. (2022). Disabilities, 2,626-640. doi: 10.3390/disabilities2040045
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Impact of “early intervention” parent workshops on outcomes for caregivers of children with neurodisabilities: A mixed-methods study.
‘ENVISAGE’ (ENabling VISions And Growing Expectations) is a research program co-created by researchers, parents and service providers in Canada and Australia. This unique program for parents of children with neurodisabilities included five weekly modules of curated online audio-visual materials, readings and activities. It was delivered in conjunction with facilitated discussions led by a research clinician and a parent of a child with a disability.
The development of ENVISAGE was influenced by modern strengths-based thinking about ‘childhood disability’, the centrality of the FAMILY and ‘family-centredness’ in service delivery, and the limited availability of programs designed for and with parents, and delivered to them, for them.
The program was provided to 65 families across the two countries. Parents were pleased with the program, and found it supportive and helpful. Interviews confirmed parents’ sense of the value of what one parent called ‘Early intervention for parents!’
Overall, the ENVISAGE program achieved its goal of enhancing parents’ sense of empowerment and confidence in parenting a child with a neurodisability. From a research perspective, several reports of what we have found in the process of developing and delivering ENVISAGE-Families have been written and presented to colleagues around the world to share what parents have helped us to learn!
Authors: Miller, L., Imms, C., Cross, A., Pozniak, K., O’Connor, B., Martens, R., Cavalieros, V., Babic, R., Novak-Pavlic, M., Rodrigues, M., Balram, A., Hughes, D., Ziviani, J., & Rosenbaum, P. (2022). Disability and Rehabilitation, 1–12. doi: 10.1080/09638288.2022.2143579
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