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Celebrating the CHAPS Family Advisory Council
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The CHAPS (Children's Hospice and Palliative Care Service) Family Advisory Council (FAC) was started one year ago as an essential step in making sure that families could actively influence and enhance the
care and services offered for children with life-limiting illnesses. The establishment of the CHAPS FAC owes much to the leadership and advocacy of Heather Hunter (pictured right), the Program Manager at the Rotary Flames House. As a passionate advocate for
patient and family centred care, Heather has played a crucial role in developing the council through her deep understanding of the needs of families in palliative care settings. Her hands-on involvement has included recruiting parents to join the council,
gathering feedback from families, and working closely with team members to ensure that the council’s structure would meet the needs of both the program and the families it serves.
As Heather notes in her reflections, the council is a true partnership between the hospital staff and the families they serve. Three keys to the council's success are
shared leadership, meaningful involvement,
and a trusting and respectful environment. Through regular consultations, the council's advisors provide
valuable feedback on various aspects of the program, including communications, service delivery, and sensitive topics such as end-of-life care at home. The council’s work has not only helped improve processes and communication but has also created a sense
of pride among families. They feel heard, valued, and actively involved in shaping the care that will impact their children’s futures.
We are deeply grateful to Heather Hunter for her commitment to the formation and leadership of this council. Sadly for us, Heather will be leaving her position in May to move back to Ontario, her childhood
home. CHAPS FAC is just one example of the legacy Heather leaves behind. She is a dedicated, compassionate individual who exemplifies patient and family centred care. You will be missed, Heather!
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PFA Spotlight - Ashley Davis
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"I serve as the co-chair of the CHAPS FAC (Children’s Hospice and Palliative Care Services Family Advisory Council), but I am also the parent of a medically complex child. Being a part of an advisory council,
such as CHAPS provides families like mine a valued opportunity to give back to a system that has given so much to us. It is also an opportunity to connect with alike families, finding unique understandings, and a sense of normalcy in a world that can feel
foreign when parenting complex needs. The CHAPS FAC is empowering to parents; it allows us to have a further involvement and collaborative say in aspects of our children’s care. In a world where our voices can easily be lost, being a part of a council allows
your point of view to be heard, a sense of pride to be gained by participating in actionable change.
When our son was diagnosed at 8 months of age, we were shocked, ‘life limiting’ was a term we never considered. Immediately it was evident that my career, which required significant travel and unconventional
hours, needed to take a back burner. As a mother, I knew this was the right choice, but as a driven professional, it left me feeling a deep sense of loss. However, through the CHAPS FAC, that hole is beginning to heal. The council has brought my prior experiences
of leadership & development, collaboration, and strategic thinking back into my new role as a medical mother. It has taught me new ways of managing time, relationships, and priorities. I feel a profound sense of accomplishment after participating in a council
meeting; This feeling of accomplishment allows me to catch a glimpse of my old self for a brief moment — my old self, but better, with my baby boy!"
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Recreation Therapy at the Rotary Flames House:
Empowering Children and Youth through Play
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Since joining the Rotary Flames House (RFH) in November as a recreation therapist, Jonelle Rodgers has focused on developing and refining the recreation therapy program to meet the unique needs this population.
The goal, using a variety of adaptive strategies and tools, is to ensure that every child, regardless of ability can engage in therapeutic play.
A typical day of Recreation Therapy at RFH involves two group sessions as well as one-on-one sessions, as needed. Jonelle's focus is on learning more about the population she serves, collaborating with professionals
across the country, and further developing the role and program at the House. Recently, Jonelle consulted with the CHAPS Family Advisory Council to get their input on different steps in the process to ensure effectiveness.
One of the most rewarding aspects of Jonelle's work is witnessing the joy and pride that children experience during their sessions together, whether it's hearing the infectious laughter during bubble time,
the joy in watching a bouncing ball on the parachute or sharing their completed work with staff.
In the popular baking program children make chocolate chip cookies, using a switch-activated pour arm and stand-up mixer and have a kitchen party complete with music while the cookies bake. Families have
shared overwhelmingly positive feedback about this experience, and how meaningful it is that these cookies are sent home with a tag highlighting how the child contributed to the process.
While reflecting on the work she does at RFH, Jonelle shared that, "while I know I can't change the entire outcome for these children, I strive every day to make a small, meaningful impact on their journey".
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PFCC Grand Rounds:
Stronger Together Through Peer Connection
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Join us for the next PFCC Grand Rounds on the transformative power of peer patient connections. Discover how sharing lived experiences fosters hope, reassurance, and a sense of community.
All are welcome to attend!
Wednesday, April 30th, 2025
12:00 - 1:00pm
Speakers:
Kasey Aiello, Patient Liaison, Foothills Medical Centre Neurosciences
Lori Beaver, Peer Support Volunteer, Foothills Medical Centre Neurosciences
Sandi Oelhaupl, Family to Family Connections Coordinator, Alberta Children's Hospital
Pam Kai, Family Mentor, Alberta Children's Hospital
Jeffry Danielson, Manager, Adult Addiction Services, Calgary
Chris Anhorn, Peer Support Worker, Recovery Alberta
Register via Microsoft Teams:
https://rb.gy/6cml6m
Or scan this QR Code:
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