By Justin Gloanec
On Thursday, May 16, 2013, the Partners in Care Youth Advisory Committee (PiC YAC) held a panel discussion at BC Children’s Hospital on teen health titled, “Let’s Talk: A Guide to Teens and Their Health”. Our goal was to host a free event open to the public to engage youth, health care providers, family, and community members in discussing ways to support and empower youth in the health care system. The PiC YAC is a group of past and current patients that meet monthly to offer a strong youth voice at the hospital, and plan events for patients and families. Knowing that Youth Week was in the first week of May, we wanted to host an event that talked about teen health. While brainstorming event ideas, we came up with three “Do’s and Don’ts” for parents when supporting their teens:
- Do seek support appropriately (we understand that supporting us in our health care is a tough job, and that you need support from friends and other parents. There are organizations, like Partners In Care, that can offer support for parents that also keep my information private) – Don’t have casual conversations about my health (in clinic waiting rooms, in public spaces, via social media, with people I don’t know…it makes me feel uncomfortable and like I can’t trust that my private information is being kept private).
- Do give me the opportunity to take charge/responsibility of my health and life (we can talk about steps together, including keeping track of my own Care Card, preparing a question to ask my doctor at my appointment, or practicing refilling a prescription on my own) – Don’t take control of the appointment and speak for me.
- Do establish good communication and invite feedback from me – Don’t be a “helicopter parent” (hovering over me 24/7)
These “Do’s and Don’ts” sparked a larger brainstorm about topics we thought would be interesting and helpful for teens and their families, including building good communication, negotiating boundaries and independence, establishing trust, reading body language, discussing tough topics, and understanding Facebook, texting, and other realities in our lives. Our panel consisted of four YAC volunteers (including myself), and we were fortunate to be joined by Sabrina Gill, Nurse Clinician for Youth Health, and Dr Curren Warf, Head of the Division of Adolescent Medicine. Susan Greig, the Family Liaison for Partners in Care at BC Children’s Hospital, opened the event by offering her own perspective as a parent, and talking about the importance of involving families in health care. She also mentioned the importance of including youth voices, which is why Partners in Care includes a Youth Advisory Committee as part of their core programming.
In terms of content, the entire PiC YAC was in unison about how much our parents care about us and how hard it must be to have a child dealing with a health condition or injury We also agreed that parents need to seek appropriate support from the many groups that are available to them at Children’s, and not talk to people at dinner parties about our illness. Even worse is when you strike a conversion with someone you barely know and yet somehow our illness is brought up. We do not like to be introduced as “your son/daughter, who has…”. We try not to publicize the fact that we have an illness or health condition because we don’t want to be treated differently, so the next time you feel the need to discuss the feelings you have about your child’s illness, please seek the appropriate support (for example, joining a group like Partners in Care or asking for recommendations of resources).
We also talked about slowly giving your child more responsibility in terms of their health care. Sabrina and Dr Warf agreed that this can be a helpful way for teens to start taking a leadership role in their health care. Every youth is different, and every family is different, so rather than offering strict guidelines, both the youth panelists and the health care providers emphasized that finding something that works for you is important. Allowing your child to take control is a slow process and should start with something simple, such as letting them be responsible for remembering to take their medication or making appointments with specialists. Gradually let your child have more control, which could include asking questions at appointments or even going into appointments by themselves, and maybe even allowing them to carry their Care Card.
Lastly we discussed the need to establish good communication/trust with your child and not becoming a “helicopter parent”. A helicopter parent is one that constantly does not trust their child and texts or phones them every ten minutes to see where they are and if they are alright. Take the time to talk to your child and understand how they are feeling, but don’t overwhelm them with questions every minute. Moreover allow your child to have a bit of freedom, don’t text every second asking them where they are and what they are doing. This will actually have an opposite effect and your child will become more devious and start sneaking out because they feel that you won’t let them leave. Boundaries can be tough to negotiate, but communication is key, and an ongoing process.
We really appreciate all the parents, families, and hospital staff who attended! We’re really fortunate to have support from the hospital, and look forward to putting on more events in the future.
Justin Gloanec is a long time YAC member and avid sports enthusiast. He has just graduated high school and will be attending UBC in the fall with the goal of one day studying pediatric medicine.