Interprofessional Education Days Explore Transition, Diversity and Inclusion in Paediatric and Palliative Care
This fall, VHA Home HealthCare (VHA) hosted the third annual Palliative Interprofessional Education Symposium (PALLIES) and the sixth annual Paediatric Interprofessional Education Symposium, also known as PIES Day. These education events bring together VHA staff and service providers from various roles on the paediatric and palliative teams, as well as valued external partners to improve care experiences for clients and clinicians.
“VHA’s partnerships with Ontario Health Teams and integrated care programs across the health system require strong practice collaborations between different healthcare providers. Events like PIES and PALLIES are important opportunities to learn together and better understand how every member of the care team helps to support client-centred care goals,” said Matt Wong, VHA’s Manager of Professional Practice.
“Since the start of the pandemic, a shift to a virtual format has extended our spread, reach and accessibility for attendees and presenters, and if these events return to in-person in future years, we will welcome the chance to network and learn again in a common space,” he added.
VHA client partners, interprofessional team members who care for VHA’s paediatric and palliative clients, as well as keynote speakers from the Hospital for Sick Children (SickKids), Holland Bloorview Family Leadership Program and the Central East Regional Cancer Program, gathered to share and learn together.
Here are some of the highlights from the keynote presentations:
Helping Youth (& Families) Succeed in their Transition to Adult Care
Dr. Alene Toulany, Adolescent Medicine Specialist at The Hospital for Sick Children, joined this year’s PIES Day as the first keynote speaker. Dr. Toulany shared her research and clinical experience on the many challenges youth with complex health care needs face when transitioning from paediatric to adult care services at the age of eighteen.
“The lack of care integration between the two systems, during an already vulnerable time, can negatively impact health engagement by youth and families and jeopardize health outcomes well into adulthood,” said Dr. Toulany.
Dr. Toulany shared some of the resources available to help youth, family and care providers and also highlighted the important advocacy work being done to encourage more successful transitions. This advocacy includes the end of mandated age requirements for transition, as well as increased training and education in transitional care issues for care providers.
“This will help ensure that care is continuous, coordinated and adapted to each youth’s development and maturity, while improving (or at least maintaining) disease control, patient satisfaction, quality of life and social participation throughout young adulthood,” said Dr. Toulany.
Transition and the Impact on Caregivers
The second set of speakers at the PIES Day event were a team of social workers also from SickKids. Ashley Edwards, MSW and Kathy Netten, MSW, focused on the mental health impacts of this difficult transition period on caregivers.
“For some of our complex care families, this transition can be quite traumatic and triggering, re-evoking all of the fear, grief and loss they experienced when their child was first diagnosed or brought home from the Neonatal Intensive Care Unit,” Kathy Netten said.
Kathy and Ashley provided some very specific guidance on how care providers can be mindful and prepared and how they can provide increased supports for families that are struggling. “It’s important to look at this transition from an interprofessional lens, how everyone plays a role—friends, families, care providers, community agencies—and the strength we all bring when we work together,” Ashley Edwards added.
The Caregiver Experience: Care Networks and Transition to Adulthood
As the last speaker at the PIES event, father, caregiver and client partner Matt Swan shared his lived experience navigating his daughter Leah’s care transition from SickKids to Sunnybrook Hospital. Born five weeks early with a primary diagnosis of spina bifida, later followed by chronic kidney disease and autism, Leah’s medical complexities increased throughout her childhood. Even with years of proactive planning before Leah turned eighteen, it was very upsetting to see the layered care plan Matt had worked so hard to establish slowly disappear.
“The availability and funding for her respite care, day programs and essential equipment were no longer an option. I also had to deal with unresolved trauma that resurfaced and face a lot of big questions like “What happens if I am no longer able to care for Leah?” and “What does she want for her future?” Matt said. He explained that this transition doesn’t stop at 18, 19, or 20 years old and is a continuous process throughout the life of the individual.
“It is so important that caregivers and families share our experiences at events like this one to break out of our bubble of isolation and extend our network. It’s true that no one can know exactly what I’m going through, but someone may have one part of what I need to better support Leah,” he added.
Palliative and End-of-Life Care: The Filipino Experience
As the first speaker at the PALLIES event, Rogelyn Agati, a PSW at VHA shared her knowledge and perspectives as a Filipino to help care providers deliver culturally sensitive end-of-life care to Filipino clients.
After teaching participants to say ‘hello,’ ‘goodbye,’ ‘how are you’ and ‘thank you,’ in the Filipino language Tagalog, Rogelyn talked about the importance of family, food and faith to Filipino culture as well as some of the beliefs around grief and death.
“Important Filipino values that can impact interactions between care providers, clients and their families include a strong respect for elders, the reliance on family members as decision-makers and the expectation of care by the family,” Rogelyn said.
Interprofessional Palliative Panel Case Study
The PALLIES event also included a palliative case study discussion with an interdisciplinary panel of VHA care providers. Occupational therapist Amanda Selk, registered nurse Sasha Nazarchuk and personal support worker Lilly Li discussed how they would provide comprehensive care to a client diagnosed with stage four lung cancer with metastasis to the spine.
Questions for panel members addressed how to navigate a history of negative interactions and trust concerns with medical professionals; challenges related to limited support both financially and in the home; and some of the assessment tools used in end-of-life care. This discussion offered important insights and strategies from each care perspective for attendees to apply with their own palliative clients and families to foster an even stronger therapeutic relationship.
Indigenous Approaches to Palliative Care
Following the case study, Kathy MacLeod-Beaver was the last speaker of the day at the PALLIES event. In her role as Indigenous Navigator with the Central East Regional Cancer Program, Kathy works with her community and allies to create safe, equitable health care and positive patient outcomes based on the teachings of her ancestors.
Kathy shared insight into some of the cultural practices of First Nation, Inuit and Métis clients, the modifications that have happened within the hospice and hospital setting to accommodate these beliefs, and ways care providers can better support the physical, mental, spiritual and emotional wellbeing of Indigenous clients.
“In our Indigenous languages, we would only say ‘see you later,’ and never, ‘goodbye’. That’s because of our belief in the circle of life. We go right back to the place we came from–the spirit world,” said Kathy.
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