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Each month, we will introduce you to two members of the Family Centred Care Council and NICU Family Advisory Care Team. This month we feature two FACTmembers,
Joyce Tang, Family Member and Dr. Juzer Tyebkhan, Neonatologist.
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MEMBERSHIP CORNER -
JOYCE TANG
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 | | Joyce Tang with husband, Khanh and daughter Kaedence |
What brought you to the NICU FACT?
It all began with a letter to attend the Peer Support Training which was initiated by NICU FACT. After attending the training and gaining an understanding of what the main objectives of NICU FACT and all the other initiatives NICU FACT was working on, it was undeniable that I wanted to be a part of this amazing community of parents and health care providers who were so passionate in making a difference for the next generation of NICU guests.
What is the one thing you would like network members to know about you?
I am a mother of a 27 weeker who was fortunate enough to have had the care we had at Perinatology and the NICU. Like others, we had our fair share of ups and downs, and this journey has really made me realize that without the care Kaedence received during our 82 day stay, Khanh and I may not be parents today. I am forever grateful. This is why I am involved with NICU FACT, and this is why I am so passionate about this team and their objectives - I want to help make a difference, be the voice of the babies who are staying at the NICU, support the parents going through these life altering events, and work with health care professionals to better the system for all parties involved.
What is something that the FACT has done (past or present) that you are excited about?
The list is so large with what
I'm excited about and what I'm looking forward to being a part of. The work done by all members of NICU FACT has truly been amazing and so impactful. If I had to name a couple of initiatives, one would be the NICU Fellows Teaching, Simulations, and OSCE preparation. There's nothing like gaining the support of the Director and the Fellows in working together to learn and grow. It's great to know that we are helping the next Neonatologists be more prepared for the "real world" and give them some hands on experience. It truly is a very rewarding experience. Another initiative I am truly thrilled about is what the HUMAN (Human Milk for All Newborns) committee was able to accomplish with the Donor Milk Banks here in Edmonton. Having been a mother with an abundance of expressed breast milk and nowhere to donate it and knowing the benefits it can provide another sick baby, the outcome of mothers having the ability to donate within our city was very exciting to me.
Last note: Koodos to all of the NICU FACT members who are consistently thinking of ways to enhance patient experiences and for everyone who has supported NICU FACT. Thank you.
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MEMBERSHIP CORNER -
DR. JUZER TYEBKHAN
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 | Dr. Juzer Tyebkhan with
Alex Panas on discharge day |
What brought you to the NICU FACT?
An active Family Council, that is truly part of the operations of the NICU, is an essential component of 'Best Care' for babies in the NICU. When several members of the NICU and Stollery Children's Hospital came together a few years ago with this vision, it was a great opportunity to make this a reality. It has been a privilege to be part of NICU FACT from the beginning.
What is the one thing you would like network members to know about you?
Much as I enjoy FACT, I don't reply to emails when I am away; you'll have to wait for me to be back at work before your email is read.
What is something that the FACT has done (past or present) that you are excited about?
The enthusiasm of FACT parent members for the implementation of NIDCAP [Newborn Individualized Care and Assessment Program] in the Edmonton nurseries. We have shown in our research that NIDCAP-based care leads to better outcomes for very preterm babies. A large component of NIDCAP is the active support of parents as the most important, consistent caregivers for their children in the NICU. FACT parents have helped move us forward over the past few years and I am sure that they will continue to help us move towards full NIDCAP-based care at all the Edmonton nurseries.
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ANNUAL FCC NETWORK FAMILY BBQ IN PICTURES
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Here are some of the highlights from the annual Stollery Children's Hospital Family Centred Care Network annual picnic! Thank you to everyone who helped plan the event, and a special thanks to the many families who took the time to celebrate another great year for Family Centred Care at the Stollery!
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THE INVISIBLE MOM - by SUE ROBINS
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 "This is what different feels like -- it lives tight in my chest in the place where tears are born. I'm so intertwined with my son Aaron -- and protecting him from this pain -- that my pain gets all muddled up. If I know I'm different as a mom and I don't belong, how soon before he knows he's different as a kid? Or does he know already? I shake my head and file that unbearable thought away."
This is an excerpt from Sue Robins, a founding member of the Stollery Family Centred Care Council, as she draws a poignant picture of a mom raising a child with a visible disability. This post originally appeared in BLOOM, a magazine on parenting children with disabilities by Holland Bloorivew Kids Rehabilitation Hospital. We encourage you to read the entire article at:
The Invisible Mom by Sue Robins - BLOOM Holland Bloorview
We are grateful to Sue for allowing us to share her words with you.
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| RECRUITING NEW MEMBERS TO THE FAMILY CENTRED CARE COUNCIL & NETWORK |
The Family Centred Care Council is an important forum to further the family voice and family centred care in the care and operations at the Stollery Children's Hospital.
The Collaboration of members and their multiple perspectives has contributed to our many successes to date. Another key to this success has been new members joining the journey, bringing their perspectives, experiences, and ideas to the table.
We are currently inviting new applications from:
- Family Members of children who have received services at the Stollery
- Previous Patients or Siblings of children who have received services at the Stollery (young adults)
- Physicians
- Staff
We are looking for new members on Council who:
- Share insights in ways others can learn from them
- Respect the perspectives of others
- See beyond their own personal experience
- Speak comfortably in a meeting setting
- Work in partnerships with others
- Are positive and supportive of the values of the hospital
If you are interested in being a member of the Council, please forward a brief statement of your interest to:
StolleryFCC@albertahealthservices.ca
along with a completed FCC application form by September 6, 2013. All applications will be reviewed and applicants notified of the interview process.
Since we know not all families and staff want to contribute on a council level, the FCC Network has opportunities to be engaged on projects, short term initiatives, and through email or phone call venues.
Many of our Council and FCC Network's most involved members have joined after being referred by physicians, staff, and family members. A new FCC Brochure and Application form has been created to assist in sharing what FCC is at the Stollery and how physicians, staff, and families can get involved.
To view the new brochure and Council terms of reference, click on the following links. Feel free to pass these along to anyone you feel would be a great addition to the Council or Network!
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WELCOMING NEW PICU STAFF TO FAMILY CENTRED CARE
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"Thanks for sharing, it's encouraging to hear your stories and inspirational words. Families are why I love my job!"
That was one of the many comments received after the presentation by Family Member, Karen Klak, who joined Marcel Panas to introduce Family Centred Care to 10 new nurses joining the PICU.
The one hour session concluded with an honest and sincere conversation among all present who also shared their own experiences and views on what Family Centred Care means at the bedside.
Other comments included:
"The quality doesn't get better than this. Your honesty will help us!"
"I enjoyed everything. They included great suggestions to help me grow as a PICU nurse."
"You guys ROCK!!!"
"That was very emotional, wasn't prepared for this - which isn't a bad thing, I just could have done with more tissues! Really appreciate both speakers talking about their personal experiences and highly respect that they are able to do this."
"Always, always, always involve the family! Advocate for family involvement!"
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FAMILY PARTICIPATION REQUESTED IN CRITICAL CARE REDEVELOPMENT
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 The province has announced it will spend $55 million to
upgrade and create new critical care beds at the Stollery Children's Hospital.
The $55 million project will create 48 neonatal, pediatric, and pediatric cardiovascular intensive care beds. Each of the three units will have 16 single-patient rooms. The project will replace the current 15-bed neonatal ICU and 24-bed pediatric ICU at the Stollery Children's Hospital in the Walter C. Mackenzie Health Sciences Centre, and will expand pediatric cardiac ICU beds in the Mazankowski Alberta Heart Institute.
Family input will be key in the design and development of the project starting early this fall. We anticipate families to become involved in the following key ways:
- Two family representatives attending regular planning committee meetings, representing the family perspective
- Participating in family meetings/focus groups a couple of times during the planning process to provide input on the needs for the care areas
- Providing input via email that the family representative will take to the planning committee
If your family has had experience in any of the Intensive Care areas and you would like to be involved please contact Heather McCrady at 780-407-7875 or heather.mccrady@albertahealthservices.ca
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CARDIAC SYMPOSIUM : MARK YOUR CALENDAR
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On October 26, 2013, the University of Alberta is hosting a congenital cardiac symposium to provide up-to-date, state of the art information on the diagnosis and management of children born with Tetralogy of Fallot. It is aimed towards all health care professionals and family members caring for children or adults with Tetralogy of Fallot.
The Keynote Speaker is Pat O'Brien, RN MSN, CPNP-AC, from Boston Children's Hospital. The event will be held at the Bernard Snell Hall in the University Hospital.
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