Chapter ONE
Project Team
Who are the key stakeholders in our patient-centered research about pediatric liver transplants?
PARTNER was developed as a collaboration between Transplant Families (transplantfamilies.org), a parent-led pediatric transplant advocacy group, and the Starzl Network for Excellence in Pediatric Transplantation (starzlnetwork.org), a multi-center learning health network dedicated to pediatric liver transplantation.
Who are our patient partners?
What do our stakeholders bring to the table?
What strategies can engage young people?
Who are our patient partners and key stakeholders?
- Liver transplant recipients and their families, encompassing parents, caregivers, and family members, functioning as:
- Caregivers for both the transplanted child and the entire family, advocating across health and community settings, interpreting for their children and the transplant team, serving as communication hubs, facilitators, and holders of critical medical history.
- Active learners, investigators, protectors ensuring the safety and comfort of their children, and decision-makers as integral members of the healthcare team.
- Healthcare providers comprising transplant coordinators, nurse practitioners, mental health providers, social workers, nurses, and doctors collaborating closely.
- Other stakeholders including UNOS, schools/teachers, insurance, funding organizations, and pharmaceutical companies, forming a broader network supporting and impacting the transplant journey.
What do our stakeholders bring to the table?
- Transplant Recipients, Parent, Caregivers & Family Members
- Desire to help transplant children & families
- Priorities & preferences about child & family’s health and life
- Experience living through and with transplant, 24-7-365
- Deep knowledge about life before, during & after transplant
- Anxiety, fear, trauma – about past & new experiences
- Healthcare Providers & Other Stakeholder
- Desire to help transplant children and families
- Research knowledge and experience
- Relationships with patient partners and other team members
- Experience with the transplant journeys of many families & children
What strategies can we use to engage young people?
- Highlight Their Expertise
Acknowledge their unique experiences and how their input is vital for the project’s success, showing its importance for them and others facing similar post-transplant challenges. - Use Engaging Methods
Employ culturally suitable tools they enjoy, including varied communication options (in-person, electronic, paper-based) based on their age and abilities. Incorporate play-based learning and provide specific discussion spaces with non-medical guides. - Listen Actively and incentivize
Create separate, age-appropriate surveys, actively listen to their feedback, offer compensation to value their time, enable reflection on their transplant journey, and build community through avenues like focus groups or social media for connections with peers.
