Family Engagement Day 2014
CanChild: What we "CAN" do together
CanChild celebrated 25 years at McMaster on Saturday November 22, 2014 for a celebratory Family Engagement day - CanChild: What we "CAN" do together. Activities included live entertainment, food, family/youth panel, "hot topic" roundtables, posters and networking.
Below are some highlights from the event, including our attendee evaluation infographic, information on the roundtables, posters from the poster session, video clips from our live stream of the event, and winner from our photo contest!
F-words Hot Topic Discussion
In 2012, Dr.'s Rosenbaum and Gorter published: "The 'F-words' in childhood disability: I swear this is how we should think!" which transformed the World Health Organization's (WHO) ICF Framework into an easy way of highlighting what disabled children want and expect from life. Unsurprisingly, these things are the things ALL children want - Function, - Family, - Fitness, - Fun, - Friends, and - Future. Over the last two years the paper has been downloaded over 500 times and has been presented at local, national, and international conferences. We have also posted a family-centred 'F-words' in Childhood Disability awareness video on the CanChild website. To date, there are over 950 views of the video. What we now know is that families, clinicians, and researchers like these ideas! As an integrated team of families and researchers we are partnering together to promote the uptake of the 'F-words' concepts in children's lives. Today, our question to you is where do you think we should go from here?!
Let's Talk About Quality of Life
Researchers, clinicians, and families use the term "quality of life" in many different ways. Sometimes they use it to describe self-care and activities of daily living. Sometimes they use it to refer to physical abilities and function, the impact of medical conditions on health, or even well-being and life satisfaction. Doctors who say that a particular treatment or surgery will improve "quality of life" may mean something different than how families understand this concept. Similarly, researchers who study "quality of life issues" in children with disabilities may be more focused on well-being and life satisfaction, rather than caregiving tasks and day-to-day function. The perspective that matters most is that of children and families. In this session, we heard about YOUR experiences and what YOU think about "quality of life"!
Emotional Impact of Concussion
Children take longer to heal from concussion (mild traumatic brain injury) than adults. The majority of children's symptoms resolve in 2 weeks to one month's time. The fall out from symptoms lasting longer than one month, or even past three months, affects family life, friendships and school. Emotional impacts due to this prolonged recovery further complicate the child's return to full participation in their daily life. Discussion focused on what this means for children and families and what they need in order to navigate this complicated course.
The Youth KIT: helping youth plan their transition to adulthood
The Keeping It Together for Youth (Youth Kit) is a resource intended to support youth with disabilities and chronic health conditions plan and manage their own information during the transition to adulthood. During this session we will use findings from youth currently transitioning into adulthood to discuss how the Youth KIT assists them in celebrating their achievements and setting goals for the future (e.g. finding a summer job).
Physical Activity and Fatigue: How Much is Too Little or Too Much?
Participating in activities with others is what makes life fun and interesting. We believe that all children and youth should have the chance to do the things they want to do. But, we also know that children and youth with disabilities often encounter barriers that limit their participation. CanChild's research in the area of participation includes development of measures of participation (PEM-CY and CAPE), studies to learn more about ways to help children participate (including one where we changed only the environment and found big changes in participation), and development of practical Tip Sheets and videos to promote participation (see the Participation Knowledge Hub for more details). We talked about what participation means to participants family, what resources would help families meet participation goals, and how we can best share the information and resources we have with families and organizations.
All for one and one for all': Coaching Educators for Change
A brand new "Special Needs Strategy" has just been announced, reflecting a province-wide change in policy. Schools will become more inclusive and educators need to broaden their teaching methods and the environment to accommodate all student's needs. Kathy will be engaging with participants to discuss how occupational therapists are working in classrooms, collaborating with and coaching teachers to support students with disabilities.
How can we promote child well-being?
Is it true that services should focus only on improving child function? Through the Parenting Matters! Clinical Study, we used research and data to question this common belief. We found this is more myth than truth, and our results may require policy and decision makers to change how they measure success.
Fun Fitness Facts!
Did you know that kids who are fit have stronger muscles, bones, and hearts? What about the fact that fit kids have better grades in school? Researchers with the Child Health & Exercise Medicine Program have spent years studying how fitness and physical activity can help improve the lives of kids. Through our research, we have explored a broad range of questions such as, how do fitness and physical activity impact heart health in kids? Does improving fitness with daily physical activity also improve reading, writing, and math marks in elementary school-aged kids? When are children and adolescents with a physical disability the most and the least active? What are some of the factors that help kids with medical conditions to participate in physical activity? This hot topic will highlight some of the exciting results from these projects, and how families and kids can get involved in our upcoming projects. We will also discuss the barriers that make it hard for families to exercise, along with some practical tips to help make physical activity a part of every day life.
Examining the notion of disability as usual within childhood disability: The importance of disability studies
Disability Studies as a field has worked hard to challenge how society views and understands the disability experience at a political and societal level. Rehabilitation Science has only recently begun to explore disability theory and tends to predominately still come from a medical view of disability. When disability is medicalized, it becomes a "problem" that needs to be fixed and cured, to be rehabilitated and remediated. Thus disability studies scholars are critical of rehabilitation professionals and feel that rehabilitation science perpetuates stereotypical notions of disability that oppress and discriminate against clients. As a clinician (OT) and now PhD candidate who also lives with a lifelong disability I have come to understand that my experience of "disability as usual" does not match how non-disabled clinicians and academics describe or define "disability as usual". I use my life story and narrative to open communication between the two fields and argue for a necessary relationship in order to rethink perspectives on disability and rehabilitation.
Sleep in Family Caregivers
This round table explored sleep and related outcomes in family caregivers of children with disability. Sleep disturbance emerges as a common complaint among family caregivers who are responsible for providing highly skilled and vigilant care for up to 24-hours per day. Results of the recent CARE to SLEEP Study that compared sleep disturbance in 42 family caregivers of children who depend on medical technology to 43 family caregivers of healthy children, will be presented. Participants will be encouraged to discuss from their experience which caregiver, child and environmental factors most influence sleep outcomes in family caregivers of children with disability. Participants were also asked to consider which sleep-promoting interventions they think are most likely to help family caregivers active enough sleep of good quality.
Families and Researchers Making Connections: How can we help?
During this workshop families and researchers were welcome to discuss their ideas and wishes to better collaborate in research. We believe that by collaborating we will generate meaningful research questions, address issues that matter to families and at the same time empower families by increasing their scientific literacy so they can participate on an equal playing field in discussions about health and treatment decisions. We provided a short introduction into the basics of the research cycle of generating knowledge and then facilitate the discussion from both perspectives, a parent representative and a clinician/researcher.
Parents as Experts: What do Policy Makers Need to Know?
How are policies governing respite care, case management and financial supports for parents of children with neurodisabilities established? Through the Parenting Matters! Policy Study, we spoke to federal, provincial and institutional policy-makers and found out some interesting results. What we need now is to hear the voices of parents.
Engaging Youth in Setting Life Goals and Transition Planning
We are interested in learning from youth about what helps and hinders their engagement in life-skills and transition programs. Our study focused on engagement in the goal-setting and review process. Practical strategies involving youth self-determination, service provider support, and youth-program fit will be discussed.
Spotlight on Caregiving Fathers
Fathers are largely invisible from sites that support parents and their children with neurodisabilities leaving the impression that they are not interested in their child's support needs. Yet, after speaking to fathers, we learned that parenting is very important to them and that they are eager to participate. Fathers can be a wonderful untapped resource in the lives of their children and families... How can be better engage with and be more inclusive of fathers?
Changing the workplace for youth with disabilities-a paradigm shift or an old idea with a new haircut
In this round table discussion, we explored a current employment model that advocates for providing supports and changes in the workplace to enable people with developmental disabilities to succeed at their job. We will discuss this model and how it compares to traditional models of gaining competitive employment for people with disabilities. Discussion may also cover the current research initiatives in Ontario and the interest of government and Canadian businesses to employ more people with disabilities.
The light at the end of the tunnel: How and why hope matters to parents of kids with neurodisabilities
Some parents have been told that if they have hope for their child, they are in denial about their child's diagnosis. Parents we have spoken to have countered this notion by explaining that hope is dynamic and ever changing and that their hopes for their child are very much grounded in the realm of what's possible.
What do clinicians need to know about your hopes for your child? How should hope be integrated into clinical care?
"SeCZ Talk" A game to help youth with disabilities talk about healthy sexual development
In line with the UN Convention on the Rights of the Child, all children and youth should have access to education and guidance about their sexual health. Unfortunately, for youth with disabilities this basic human right is not being met consistently. For example, sexual health is rarely addressed during medical consultations with adolescents who have disabilities.
At the round table, we facilitated an open discussion about puberty, friendship and sex education for children with disabilities. We will share our first experiences with the Canadian version of a Dutch educational board game "SeCZ TaLK". It is hoped that together we can share ideas how to further develop and evaluate this innovative game for youth with disabilities to talk & learn about healthy sexual development.
Made Possible by:
Dr. Jan Willem Gorter, Director of CanChild gives a warm welcome to all attendees while setting the stage for what is to follow while providing a brief overview of CanChild.
Jennifer & Jonathan Sprung lead an engaging family and youth panel to discuss the challenging and encouraging stories of family and youth living with disability.
Roundtable discussion on The Youth KIT: helping youth plan their transition to adulthood.
Roundtable discussion on Families and Researchers Making Connections: How can we help?
Sue Baptiste leads a discussion that gives a summation of roundtable topics and themes.
Dr. Peter Rosenbaum provides a Keynote presentation on research processes and what role families can play in the process.
Dr. Jan Willem Gorter concludes the day.