October 8th, 2021 marks National Children’s Hospice Palliative Care Day (NCHPCD), which aims to raise awareness about the importance of pediatric hospice palliative care and improve the quality of living and dying for infants, children and youth with life-threatening conditions and their families. In honour of NCHPCD, the Canadian Hospice Palliative Care Association is highlighting Robyn Thomas’ efforts in making a difference for children who receive palliative care and their families.
Ever since her experience working in a home with a child who had cerebral palsy and at a summer camp for children with medical complexities, Thomas knew that she had a desire to pursue her studies in the pediatric medical field. After completing her undergrad at the University of Calgary in neuroscience and engaging in pediatric research at the Alberta Children’s Hospital, Thomas began to truly understand the importance of quality of life for people who were going through the experience of having a child who had really complex life-limiting illness.
With her background in the field and passion for the subject matter, Thomas teamed up with Dr. Barbara Pesut and Dr. Wendy Duggleby, co-founders of Nav-CARE, to pursue her research with a community-based approach.
Nav-CARE (Navigation-Connecting, Advocating, Resourcing, and Engaging) is a volunteer navigation program that seeks to improve the quality of life of persons living with declining health and is currently being implemented across Canada. Thomas was interested in how the Nav-CARE model is so focused on quality-of-life and helping people by walking with them through their journeys and their trajectories. “There is a huge gap that I witnessed personally just from having conversations with people in getting successful care that is person-centered, family-centered, and sort of about quality end-of-life care,” says Thomas, “[Nav-CARE] really resonated with me when I thought of those conversations.”
Although she has had many conversations about the experience of those trying to navigate pediatric end-of-life care, Thomas admits that there isn’t a lot of research in this field— especially in how to support caregivers. With this, Thomas’ decided to focus her research on looking into the caregiver’s experience and seeing how a new model could potentially support them.
“The first question is: What are the unmet needs of family caregivers of children with medically complex conditions? And the second question is: How may a volunteer address and support those needs?” says Thomas.
Through an anonymous survey, caregivers were asked how they could receive support during these times. Although some of the responses were expected, like emotional support, there were a lot of answers that were more practical in nature. From the survey, it is reported that many caregivers need support with daily life and chores, such as shopping for groceries, preparing meals, or taking their family out for activities. “Parents described feeling like they’re navigating uncharted territories without a map. They end up becoming a nurse to their child, a care aide, a teacher, a pharmacist. They end up taking all these roles while balancing a lot of grief and a lot of fear,” states Thomas. Overall, the survey was able to lend perspective inside the life of a caregiver and demonstrate how their needs range from practical to personal and everything in between.
After a few rounds of research and determining the varied needs of caregivers, Thomas is now focusing on how volunteers can address those needs through the integration of the Nav-CARE program and is considering in potentially expanding it to rural communities. Although this is her goal, she has found much more value in understanding the unique struggles caregivers face in hospice palliative care for children, and hopes she can show just how complex and overwhelming the process is through the completion of her thesis. “For me, a student who does not have children, it’s really difficult to understand the reality a parent is facing when they have a child who may be dying, or who has died. So those conversations have really impacted me in realizing that there’s a huge significance here in just making a platform for parents to share their experiences,” says Thomas.
Overall, Thomas hopes that her research and involvement in the pediatric hospice palliative care field can make a difference at the level of accessibility, education, and training. But above all, she wants to normalize these conversations and create a space where pediatric hospice palliative care can be spoken about without hesitation or doubt: “I think that in our Canadian society as a whole, a child who is dying or a child who is terminally ill is this very difficult situation to understand and it’s almost unacceptable philosophically. It’s something that none of us can comprehend. Part of the reason that this field is so overlooked is because it’s so difficult to talk about and to actually address. But when you hear about the challenges people are facing, it really shows just how important it is that we bring attention and focus to such a vulnerable journey that people are on. It is overwhelming, it is complex but it is really important that more attention is brought to pediatric palliative care and the impact that it has on caregivers and family.”