Albertans4HealthResearch.ca

Healing Children’s Pain Together: Community Priorities for Alberta’s Path Forward
University of Calgary and Alberta Children’s Hospital Research Institute

Background
All children experience acute pain (e.g., from injury, illness, medical procedures), with one in five also experiencing chronic pain (i.e., pain lasting or recurring for at least 3 months or longer). Unfortunately, current healthcare approaches have not reduced this number. Children from marginalized and minoritized backgrounds, especially those with neurodevelopmental disabilities, face even greater challenges in accessing proper pain care. Chronic pain in youth is also closely linked to mental health issues, such as anxiety and depression, which often go untreated due to fragmented healthcare systems. To address this growing crisis, pain must be recognized early, measured accurately in all children, and treated effectively within both community and healthcare settings.

Healing Children’s Pain Together: Community Priorities for Alberta’s Path Forward is a priority setting partnership that brings together youth with lived experience of pain, caregivers, health workers and community organizations to prioritize research questions that are most relevant to those directly affected.

We are focusing on three key areas to improve access to care and fair treatment:

1. Children and teens with pain and neurodevelopmental disorders (such as autism, cerebral palsy, Down syndrome, or fetal alcohol spectrum disorder).
2. Children and teens with pain and mental health challenges (such as depression, or anxiety, suicidality, PTSD, substance use).
3. Pain care in primary and community care settings (such as doctor visits or support workers).

Community participation will help us make sure the right issues get the attention they deserve. Together, we are working to make pain care better for kids and teens in Alberta.

Roles and Responsibilities
We are looking for youth aged 14-23 years old with a neurodevelopmental disability, caregivers, health professionals, community organizations and policy makers.We are seeking broad representation from individuals with lived experience connected with any neurodevelopmental disabilities (NDDs) and childhood or adolescent pain to join a steering committee for a priority setting partnership.

Participation of individuals, particularly youth and family members, will help us identify and prioritize research questions and uncertainties related to how to approach and address pain in children and adolescents with NDDs. We are committed to ensuring diverse perspectives from people across Alberta are included.

This opportunity is only for people who live in Alberta and/or receive healthcare within Alberta.

How much time will it take?
Approximately six meetings (1-2 hrs each)over 12 months, starting summer 2025.

What would I be asked to do?
Attend and contribute to meetings held online or in accessible locations. Respond to emails. Reading some information before meetings.

Is this opportunity suitable for someone new to research?
Yes. To be included, you do not have to have been part of research before! Support will be available from the research team and patient partner mentors to build an inclusive and accessible space for participants.

When we use the term neurodevelopmental disabilities (NDDs) we are referring to conditions like cerebral palsy, autism spectrum disorder, intellectual disability, ADHD, communication disorders, motor disorders, FASD, spina bifida, and other genetic or metabolic conditions. These are examples and you may have different experiences that are also relevant.

When we use the word "pain" we mean any type of pain experience from medical procedures, needles, vaccinations, surgeries, injuries, everyday pain (e.g., constipation), stomach aches, headaches, muscle pains, or other disease related pain (e.g., arthritis).

Compensation and Reimbursement
Youth and parent research partners will be offered financial compensation.  The project will also pay for costs related to travel or dependant care. All participants will receive an offer letter prior to joining the steering committee that will clearly specify the compensation.

We are using the Solutions for Kids in Pain Patient Partner Compensation Guidelines a a reference (https://kidsinpain.ca/wp-content/uploads/2021/03/SKIP-Patient-Partner-Compensation-Guidelines-approved-Feb-10-2020-1.pdf)

Community organizations will receive support for the contributions of health professionals and community workers.

For more information or to apply please connect with
Sean Lindsay, Research Coordinator
Email: sean.lindsay1@ucalgary.ca
Phone: (403) 210-7846
Apply online: https://survey.ucalgary.ca/jfe/form/SV_3E146uyipLXuiFw