Overview

In this episode of asPERusual, host Anna Chudyk speaks with Dr. Sharon Hou (psychologist and assistant professor at Simon Fraser University) and Laesa Kim (parent partner, and family liaison at BC Children’s Hospital Research Institute) about their work on the Pain Pathway Project, a CHILD-BRIGHT–funded initiative supporting community pediatricians in managing pain and irritability among children with severe neurological impairments. Together, they explore how embedding family voices from the start transforms research design and implementation, and how trust, co-creation, and reflective collaboration make both research and care more compassionate, accessible, and effective.

Key Topics & Takeaways

Pain Pathway Project — The Pain Pathway is a clinical tool designed to support pediatricians in managing pain and irritability among children with severe neurological impairments.

Family Voices at the Core — Families of children with medical complexity were engaged from the outset of the Pain Pathway Project to co-design research and ensure the work reflected real lived experiences.

Parent Monitoring Board — A Parent Monitoring Board guided Phase Two of the Pain Pathway Project, helping design the study, review materials, and identify communication and accessibility needs.

Co-created Foundations for Partnership — Families and researchers jointly developed clear terms of reference outlining roles, communication, and compensation—building trust, equity, and authentic collaboration.

Meaningful Impact on Research and Practice — Family partners influenced tangible outcomes, including a glossary to clarify research language, visual tools to explain processes. They will be involved in teaching pediatricians to use the Pain Pathway tool.

Relational and Reflective Approach:The team emphasized “slow science”—prioritizing relationship building, open dialogue, and humility—to make both research and care more compassionate and inclusive.

Meet our guests

Sharon Hou is a registered psychologist and assistant professor in the Faculty of Education at Simon Fraser University, and an investigator at BC Children’s Hospital Research Institute. She studies how cultural context shapes care and outcomes, focusing on historically underserved or equity-denied groups. By partnering with people with lived expertise, Sharon’s work centres the voices of youth and families to ensure that research translates into meaningful change.

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Laesa Kim has been engaged as a parent partner in research projects across Canada, and most specifically with work at BC Children’s Hospital Research Institute and Canuck Place Research Initiative, for the last five years. She is most proud of leading her own qualitative study on what motivates parents to participate in research for their children. Beyond research, Laesa engages as a vocal advocate for the medically complex community in online spaces, as a board member with BC Complex Kids Society, and in sharing the realities of this complex life in her memoir, Can’t Breathe.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this onePERspective episode, doctoral student Sasha Kullman reflects on insights from Season 3, Episode 8 of asPERusual, which featured Sara Pot and Alicia Hilderley from RareKids-CAN. Sasha explores how RareKids-CAN’s embedded partnership model moves engagement beyond advisory panels toward shared leadership and organizational integration. She discusses what co-facilitation, trust, and “first-name culture” can teach emerging researchers about building safer, more collaborative spaces with youth and family partners—and how vulnerability and personal storytelling can strengthen connection and authenticity in research relationships.

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Overview

In this episode of asPERusual, host Anna Chudyk speaks with Sara Pott (family partner with lived/living experience) and Alicia Hilderley (clinical-trials researcher) about their shared Patient & Family Engagement Facilitator role at RareKids-CAN, Canada’s pediatric rare disease clinical trials and treatment network. Together, they unpack how pairing lived/living and research experience moves teams beyond advisory panels into embedded partnership, and how trust, safety, and thoughtful design shift power dynamics in the day-to-day.

Key Topics & Takeaways

From Advisory to Integrated Partnership — How RareKids-CAN places youth and family partners inside governance and decision-making (not just consultative roles), with flexible levels of engagement across a coast-to-coast community.

The Shared Role Model — Why splitting the facilitator role between a family partner and a researcher strengthens fidelity, closes knowledge gaps (e.g., clinical-trials literacy), and makes brokering relationships and readiness support possible for both partners and researchers.

Trust, Safety & Language — Using first-name culture, appropriate vulnerability, and clear boundaries to reduce hierarchy; asking “What does a safe space look like for you?” before deeper “help me understand” conversations.

Working Together Agreements (Living Docs) — A more approachable take on a terms-of-reference document. These living agreements capture who each team member is, how they like to be referred to, what motivates their engagement, and how they’d like to be engaged.

Embracing diverse perspectives — Recruiting multiple partners, resourcing varied levels of engagement, and routinely asking “Whose story is missing?” to prevent over-reliance on one voice.

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In this onePERspective episode, doctoral student Sasha Kullman reflects on Season 3, Episode 7 of asPERusual, which featured Rae Martens discussing practical tips for engaging children, youth, and families in research. Sasha shares key takeaways on meeting children and youth where they’re at through activities and general approaches, balancing autonomy with parental involvement, creating safe spaces, and approaching mistakes with compassion and grace. Her reflections highlight the importance of trust, creativity, and vulnerability in building meaningful research partnerships with youth and families.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Overview

In this follow-up conversation with knowledge broker and bereaved parent-advocate Rae Martens (Family Engagement in Research Program/ Kids Brain Health Network / Can Child Center for Childhood Disability Research), we move from principles to practice: how to create developmentally appropriate, emotionally safe, and genuinely collaborative research partnerships with children, youth, and families.

Key Topics & Take-Aways

Safety, Autonomy & Consent: Build youth-only voice and choice into the process (clear opt-outs, code words, flexible participation/closure) and treat “no” as a complete sentence.

Design for Belonging (not convenience alone): Choose spaces and formats that feel safe and accessible (breaks, neurodiversity-friendly rooms, food, hybrid/online options), and normalize caregiving realities on calls.

Engagement ≠ Recruitment: Involve kids and families early to shape questions and methods; adapt language to them (mirroring, “what did you hear me ask?”), and distinguish partnership from participation.

Playful, Practical Methods: Try warm-ups and co-creation tools (question soccer ball, LEGO®, social stories, joint “yes-and” storytelling for dyads), and close loops with gratitude, aftercare, and simple follow-ups.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this onePERspective episode of asPERusual, doctoral trainee Sasha Kullman reflects on key take aways from Season 3, Episode 6 of asPERusual, which featured guests Sunday Queskekapow and Brianna Hunt. Sasha emphasizes why framing research around “sensitive topics” — rather than deficit-based terms like “vulnerable” or “marginalized” — shifts power and narrative back to communities. She highlights the ethical imperative of including peer researchers with lived experience, the importance of pre-research relationship building, and the responsibility of academic teams to support peer researchers emotionally, materially, and culturally. The central takeaway: ethical, justice-oriented research requires humility, reciprocity, and creating safe, supportive spaces for both participants and peer researchers.

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Overview

In this latest episode of asPERusual, host Anna Chudyk is joined once again by Brianna Hunt and new guest Sunday Queskekapow to explore what it truly means to engage children, youth, and families with lived/living experiences of sensitive topics—such as homelessness, substance use, and systemic oppression—in health research. Building on their work in the Art as Knowledge Mobilization project, they discuss the importance of using art, ceremony, and community-rooted relationships to foster trust, safety, and meaningful participation in research.

Sunday, a Two-Spirit Swampy Cree advocate and peer researcher, shares firsthand how centering Indigenous methodologies and lived experience transformed the project into something affirming and empowering for youth participants. Brianna, a settler researcher and community advocate, highlights the need for justice-oriented research that not only avoids harm but actively dismantles oppressive systems. Together, they emphasize the vital importance of language, relationship-building, compensation equity, and collective data analysis in creating ethical and transformative research spaces.

Key Takeaways

Lived/living experience must be at the center of research on sensitive topics to ensure ethical, trauma-informed, and culturally grounded approaches.

Language matters: Terms like “peer researcher” and “sensitive topics” empower participants more than labels like “vulnerable” or “marginalized.”

Relationships are foundational—building trust and mutual respect between researchers and communities is essential across all stages of the research cycle.

Honoraria and support must be thoughtful and equitable, reflecting participants’ expertise and lived experience on par with other research professionals.

Justice-oriented research goes beyond ethics—it aims to actively disrupt systems of inequity and empower communities through reciprocal partnerships.

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In this onePERspective episode of asPERusual, doctoral trainee Sasha Kullman shares how her journey in patient engagement in research has transformed her understanding of what it means to be a researcher. Building on the insights shared by Rae Martens in Season 2 Episode 5 of asPERusual, Sasha discusses how viewing engagement as a psychosocial, relational practice has shaped both her professional growth and personal identity. She emphasizes the power of co-creation, the importance of mentorship, and the value of relationship-building in research. Through personal reflection, Sasha invites listeners to consider how strong relationships—not just expertise—are the true foundation of meaningful patient engagement.

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

Overview

In this latest episode of asPERusual, host Anna Chudyk welcomes back Rae Martens — knowledge broker with the Family Engagement in Research Program (FER) and a bereaved parent and advocate — to explore how patient engagement is not just a methodological tool, but a deeply psychosocial, relational practice.

Rae shares her personal and professional journey, describing how meaningful partnerships are built through trust, emotional accessibility, and a deep awareness of the lived realities of patient partners. From the structure of the FER training program to the philosophy that underpins it, this episode reveals what happens when research becomes a space for coexistence, not just collaboration.

Listeners are invited into a conversation that challenges the traditional boundaries of research training, emphasizing community, care, and evolving identity — for both researchers and patient partners.

🔑 Key Topics Discussed:

Engagement as a psychosocial practice: Understanding how research partnerships impact the body, mind, and spirit—especially for patient partners.

The role of knowledge brokers: Building trust, mentoring, and helping people find their place in the research world.

FER 101 and 201 Micro-Credential Courses:

101: Focus on relationship-building, co-developing tools, and practicing engagement

201: Leadership development for advancing engagement at scale

Accessibility in engagement:

Emotional accessibility for caregivers and marginalized populations

Tools like the “Big Red Help Button” and flexible course expectations

The evolving identity of patient partners:

Engagement as part of identity, not just contribution

Recognizing leadership potential among patient partners

Community of practice: Sustaining connection beyond courses through multiple modalities and open-door structures like the “Parents Partnering in Research” Facebook group

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com

In this onePERspective episode of asPERusual, doctoral trainee Sasha Kullman provides her key takeaways on Season 3, Episode 4, which featured Angie Hamson discussing the roles of professional patient partners in engaging children, youth, and families in quality improvement and governance.

Drawing on her own experience as a student researcher engaging directly with youth, Sasha explores three key takeaways from Angie’s story:

👉 The importance of who facilitates engagement — why roles like “patient partner in residence” are especially powerful because they are filled by someone with lived experience.

👉The need to integrate engagement into research culture — and how dedicated roles can help organizations move from tokenism to meaningful partnership.

👉The centrality of trust — including why patient and family partners shouldn’t have to share their full stories to be seen as credible contributors.

Sasha closes with a thoughtful question: How can we build research spaces where patient and family partners feel welcomed, respected, and trusted—whether or not they disclose their personal stories?

Whether you're new to patient engagement or deeply immersed in it, this short episode offers a reflective and practical lens on what it means to foster truly collaborative research environments.

👉 Check out the interactive transcript at asperusual.substack.com!

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit asperusual.substack.com