Civic Ballroom North

Client and Family Centred Care is a common term in pediatric healthcare. It has been instrumental in bringing about vast improvements in partnership in care, shining a light on the value of family knowledge and the importance of working with clients and families to achieve the best possible outcomes for a client.

But what happens when pediatric clients desire privacy? When clients make the request to have their personal health information remain private from family and legal guardians what must we consider? In an environment that nurtures emerging autonomy how do clinicians and organizational systems support youth who want to remove proxy access from their electronic medical record?  

This panel presentation will explore the clinical, ethical, and organizational considerations necessary for supporting youth who make the request to remove proxy access from their electronic medical record. Presenters include a Collaborative Practice Lead, a Youth Leader and the hospital’s Bioethicist. Together these panelists will take audience members on a journey that demonstrates how an ethics consult can lead to process change that has implications for the care team, the client and the family.

Audience members participate in short structured activities designed to consider how best to support independence and emerging autonomy in managing one’s own healthcare in youth-aged clients.

In pediatrics, a good relationship with the family can be a key facilitator in working successfully with the client. So what happens in cases where youth demand privacy from parents or other family members? This session will explore the relevant considerations when navigating therapeutic relationships, ethical duties and organizational practices.

3 Key Takeaways
1. Pediatric clients have a right to privacy of their medical information
2. Ongoing education for clients and their families can contribute to an environment that celebrates a child’s desire for privacy
3. Consultation with the wider hospital services (like ethics and risk) can support the clinical team to navigate privacy requests received from children

Dolly Menna-Dack, Clinical Bioethicist, Youth Engagement Strategy Lead, Holland Bloorview Kids Rehabilitation Hospital
Samantha Alfaro, Youth Leader, Holland Bloorview Kids Rehabilitation Hospital
Sheelagh Jamieson, Clinical Psychologist, Collaborative Practice Leader, Holland Bloorview Kids Rehabilitation Hospital
Rucha Sangole, Student/Trainee, Holland Bloorview Kids Rehabilitation Hospital