International Day of Families – May 15

For over a decade, the Family Engagement Team has supported families to be an active part of their child’s therapy and support team. Our lived experience has shown us that our knowledge of our own child is a powerful tool when combined with the professional knowledge of various early childhood development experts.

Research supports our hypothesis that engaged caregivers as active team members in their loved one’s healthcare leads to many positive outcomes (https://www.cfhi-fcass.ca/docs/default-source/itr/tools-and-resources/essential-together/evidence-brief-en.pdf ) including but not limited to:  

Enhanced Patient and Family Experience:  

• Caregivers/families know their child’s medical history best. They know how their child’s journey, carry lists of medical professionals and binders of information on procedures, diagnoses, hospital visits and discharges, etc. They are well-connected and versed in their child’s medical journey. 
• Caregivers know the details of what is typical and atypical when it comes to reactions to medications, appointment/hospital triggers/stressors, and surgery recoveries. They understand the inner workings of their child’s mind, mood, and communication, whether verbal or non-verbal. Understanding when a child has reached their limits also avoids overstimulation and overwhelm. 
• Therapy appointments are opportunities for caregivers to learn vital tools from the therapist. This promotes the transferability of skills and techniques to be worked on by the caregivers outside of therapy sessions, providing the opportunity to do therapy with their child when they are ready. 
• Caregivers can best determine if their child is unable to participate in therapy at any given point. As therapy time is precious, knowing when to move allows caregivers to recover the session by informing the therapist of the appropriate time to move to a mediated model, in which parents can participate in the session to continue it later at home. 
• Encouraging caregivers to provide session modification suggestions to fit their child’s interests or abilities acknowledges caregivers as the experts of their child. They can feel confident in knowing that their thoughts are valued and that they are capable of practicing the tools they are taught in therapy sessions at home. 
• Caregivers are given a voice to express their child’s and their own needs/concerns and goals. When acknowledged as an integral part of their child’s care, caregivers and therapists’ relationships improve through greater transparency, respect, integrity, honesty, and openness, leading to better patient care and support. 

Better Health Outcomes: 

• Healthcare quality is increased through a professional and candour flow of communication with the child development experts and their caregivers. Working as a team maximizes time and effort. It brings comfort, order and routine to a child seeing a continuation of care from therapy sessions to home, and home to therapy sessions. 
• Caregivers are with their child for many waking hours. This allows time to really practice the techniques learned in therapy and supports the generalization of skills. However, funding, insurance, and time in therapy can only go so far. Caregivers can take therapy much further if they integrate parts of it into their daily lives. 
• Caregivers feel empowered, understood, and supported. Caregiver burnout and isolation may be minimized or prevented, promoting better health outcomes for children and caregivers. 

Continuity of Care:  

• Quality of care over time can be achieved through goal setting and planning for your child’s future. It reduces fragmentation of care to improve your child’s safety and abilities. Caregivers take an active role through goal setting, giving them the ability to make goals that are meaningful to their family. This can be done by incorporating tasks, skill-building and goals that fit into the child’s everyday activities. By sharing with your clinician your child’s likes and dislikes and/or schedules and routines you have at home, opportune times to practice a particular skill keep it relevant for the child. 
• The number of therapy sessions allotted often remains insufficient due to availability, resources, funding, and/or insurance coverage. Make the most of it. Caregivers will still be there after sessions, groups, and therapy end. Actively engaged caregivers can extend and build on the skills learned in the Centre. 

“My best advice is… you must put in the work. For every one day at Grandview Kids, you are going to have 6 days, 13 days at home where everything really happens. Grandview Kids’ is going to give you the tools to get that work in.”

– Grandview Kids Caregiver