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A Primer on Family Centred Care 
May 2013 
"Could a greater miracle take place than for us to look through each other's eyes for an instant?" - Henry David Thoreau
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IN THIS ISSUE (Click to link)
MEMBERSHIP CORNER - LOREEN GOMES
MEMBERSHIP CORNER - CAROL CARIFELLE-BRZEZICKI
FCC SURVEY
FAMILY TALKS ROUNDUP
FAMILIES REVIEWING DOCUMENTATION
FCC BROCHURE & APPLICATION FORM
FCC IN THE OR!
FCC IN THE DESIGN OF THE OR!
RECOGNIZING OUR CHAMPIONS!
RECOGNIZING OUR CHAMPIONS!
THE 23 WEEK DILEMMA
FAMILY TALKS ROUNDUP
FCC SURVEY - A GREAT RESPONSE!
MEMBERSHIP CORNER
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 FCCC members,
Loreen Gomes, Co-Chair and Family Member and 
Carol Carifelle-Brzezicki,
Manager, Aboriginal Health Program
MEMBERSHIP CORNER - 
LOREEN GOMES
Gomes Family
What brought you to the FCC Council?

 

As cliche as it may sound, I applied to be apart of the original Council members because we were at a stage in our lives where we had the ability to give back. As horrific as it is to have a child that is in the critical stages of an illness, the experience for us was so wonderful in terms of the quality of care and support we received from both the medical team as well as other families. We really wanted to contribute to this positive culture and the Council was a perfect opportunity.

 

What is the one thing you would like network members to know about you?

I think that the whole experience of being a part of the Council has been very humbling for me in that the people involved are all so amazing both once again staff and family members. I would just like everyone to know how grateful I am for having the opportunity to have been apart of the Network/ Council and encourage others to do the same.

 
What is something that the FCC Council has done (past or present) that you are excited about?

This question is way too hard to answer as as there are so many things. The key project would have to be seeing the whiteboards put into practice and being able to observe the children and families using them. Generally it would have to be seeing the the strides that have been made over the last four years in putting the children and families at the center of all aspects of decision making in care.

 

MEMBERSHIP CORNER - 
CAROL CARIFELLE-BRZEZICKI
What brought you to the FCC Council?

 

My connection with the Stollery has been bitter sweet:  I have had grandchildren come into the Stollery and walk out much healthier than when they first came in and I have had grandchildren (through my sister) not have the same opportunity of seeing their granddaughters walk out of the Stollery.  The common factor was how important the role of family was in both situations.  I saw my sister and her son's family struggle with ensuring that their culture as First Nations individuals be understood in the context of a health system.  I also saw my daughter's negative response to questions that we would not consider as options concerning health/life/death as Aboriginal people.  

 

What brought me to the council was the opportunity to be able to give back on behalf of MY family.  In the giving back I also wanted the opportunity to contribute my knowledge of who my family is.  Using a broad definition of who my family is as an Aboriginal (Metis) person.  Within our community, life from the beginning to the very end is to be celebrated.  We celebrate the changes that that road brings from the birth, to coming of age, to menopause, to Eldership and then as we make our 'way home' in whatever spiritual context that is for us.  We celebrate and acknowledge it all.  In coming to the FCC I bring the experience of celebrating, celebrating every minute we have.  Any reason to celebrate is good enough for me.  We do not know when our time on earth will be done, we need to acknowledge every minute of life, every step towards better health regardless of how small.  I came to the FCC to party-to celebrate with the families that are touched by our health system.

 

What is the one thing you would like network members to know about you? 


First, I have 6 BEAUTIFUL grandchildren.  Second, I am the Edmonton Zone Manager of the Aboriginal Wellness Program and that I love my role.  I feel that helping our community, regardless of how apparently small an action is, I know that it is "worth it" because "they are worth it".

 

What is something that the FCC Council has done (past or present) that you are excited about?

There is so much work that the FCC has done-what I appreciate are the "Little things"- the white boards as communication in the rooms; the support offered by peers and of course free internet for families that is used to connect with friends and families. 

SORRY MICHEL!
Michele B and Christina H
FCC Champion, Michel Beaumier receives his pin from family member, Christina Herbers

Our apologies to Michel Beaumier, Admitting Clerk at the 1D1 Ambulatory Clinic for misspelling your name in the April primer! 

WHAT IS IT LIKE TO PROVIDE AND RECEIVE FAMILY CENTRED CARE AT THE STOLLERY?
 

On May 1st staff, physicians and inpatient / outpatient families are being invited to participate in a survey conducted by the Stollery Family Centred Care Council.   

The goals of the survey is to:

 

1) understand the experiences and perceptions of service providers in delivering family centred care to children and their families at the Stollery.

 

2) understand the experiences and perceptions of families regarding the delivery of family centred care at the Stollery.  

 

The results will be used to help improve supports for staff in delivering care and to improve supports for children and their families while at the Stollery.  

 

The FCC Council has much to learn from this survey and look forward to sharing the results in the Fall of 2013! 

WELCOMING NEW STAFF TO FAMILY CENTRED CARE

May saw us presenting to new staff at three different orientations!

 

SNELP (STOLLERY NURSING ENTRY LEVEL PROGRAM)

 

Family members, Dee-Ann Schwanke and Christina Herbers, teamed up with the Clinical Nurse Educators to share their experiences around Family Centred Care to 11 nurses and other staff new to the Stollery inpatient units.

 

PICU 

 

Karen Calhoun, family member, and Marcel Panas engaged in a conversation with 15 nurses about Family Centred Care in the PICU.  Although only scheduled to last one our, the conversation continued for an additional hour which highlights how important engaging families is to staff.

 

NICU

 

We welcomed our newest presenters, Krysty Wolfe and Nicole Lyste (and their NICU grads!!), as they shared their recent experiences in the NICU to new nurses to that unit.  Krysty and Nicole's families had only graduated from the NICU in the last year and were very eloquent in how they discussed Family Centred Care from the family perspective.

 

Perhaps the evaluation response that best describes the value that staff see in all of these presentations is the one which said "it's presentations like these that remind me why I chose this career and love the work that I do"

 

REVIEW OF FAMILY EDUCATION MATERIALS AND 
POLICY & PROCEDURE

Families are key stakeholders in the review of educational materials for families and policies that guide how care is provided.  

 

Managing Your Child's Pain Pamphlet

Codeine is no longer recommended for children and a provincial group is addressing changing practice to administer morphine instead.  Family members  Mary Bell, and Stacy Grainger-Schatz along with Nurse Practitioner Kathy Reid had input on this new document available to families throughout the province.  

  

Two policies were reviewed by family members Karen Gartner and Michelle Edwards Thompson on:

  • Prevention of Pressure Related Injury 
  • Stollery Visitor Policy 
FCC BROCHURE AND APPLICATION FORM
Many of our network's most involved members have joined the network 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, click on the following link.  Feel free to pass it along to anyone you feel would be a great addition to the network!

FAMILY CENTRED CARE IN THE OR!

FCC in the OR

Marcel Panas (Coordinator, Family Centred Care), Christie Oswald (Family Member), James Coughlan (Family Member and Former Stollery Patient) return to the OR under a much less stressful situation than what they've been used to!

Members of the Family Centred Care Network had the privilege of vising the OR and sharing the patient and family perspective with a diverse group of Operating and Recovery Room staff.  The theme of the presentation was centred around three questions provided in advance by the staff themselves: 
  • How can you include families as best as you can?
  • What worries parents and children ahead of time?
  • What is one suggestion we can do right away that would improve the experience for patients and families?
Christie Oswald answered these questions from the parent's perspective while James Couchlan did so as a previous patient at The Stollery.  Here are a couple of quotes from the feedback we received after the session: 
 

 

"People like yourselves should be commended for taking the time and making the effort to ensure we realize our actions make a difference and through this, improve the care for all our families who visit us." 

 

"This exchanged made us all appreciate the good work we do, explore how we can do even better and made for a feel good morning!  Thank you!"

 

Although our intent was to teach and share our experiences with the staff, we, as families, learned as much if not more from them in return.  We do not often get to see what happens after the OR doors are closed but we all agree that there is a great group of people who do everything then can (and more) to make the child and family feel as safe and comfortable as possible.  We all left feeling that if the time should come again, we would feel that much better about handing our children over into the caring arms of this team.

 

Thank you to Clinical Nurse Educators, Lorraine Wllox and JoAnne Hamilton, for inviting us into your workplace to share this amazing experience with your staff!
OPERATIVE SERVICES DESIGN
Plans are underway to expand the current operative services areas, and family input has been instrumental throughout the process.  A big Thank You goes to 
Shannon Robertson, family member on the FCC Council,for having been representing families on the expansion and design committee on a bi-weekly basis for the past year.  
 
On May 13 members of the Family Centred Care Network had the opportunity to meet with the Interior Design team of the architectural firm, DIALOG, to share how the design of the Dayward, OR, and Recovery room has an impact on the parents and children's overall experience.   Many ideas were discussed as a result of the families' experiences and suggestions, such as: wayfinding, sensory sensitivities, waiting rooms and entry ways, privacy, visual markers to guide and engage children through to teens.  
 
One parent shared what her young daughter suggested when asked what she thought would be helpful: beige and green colors make her feel calm, and she would like to wake up to ballet music..  While ballet music may not be everyone's choice these ideas, along with the many others, were addressed in the plan going forward.  
 
Thanks to Family Centred Care Network members James Coughlan, Stacy Grainger-Schatz, Poonam Madan, Shannon Robertson, and Dee-Ann Schwanke,; Stollery staff Dianne Tuterra (Child Life Lead), Heather McCrady (Manager FCC); AHS staff Deb Maerz (Clinical Liaison Major Capital Projects); and DIALOG staff Rob Swart, Michelle Sigurdson, Umid Abdullaev, and Elisa Naesgaard.
RECOGNIZING OUR CHAMPIONS!
There are many people who do great things to unleash the culture of Family Centred Care at the Stollery Children's Hospital.  We have introduced a program to recognize these individuals or groups as Family Centred Care Champions, celebrate their contributions and share the results of their efforts with others to further the growth of Family Centred Care.  
FM Champions
Family Centred Care Champions - Facilities & Maintenance
Left to Right:  John Chalupa, (Manager) Christie Oswald (Family Member), Art KinnearTerry Hooft (Facilities & Maintenance) &
James Coughlan (Family Member & Former Stollery Patient)  
Not pictured:  Phat Le (Facilities & Maintenance)

Every job in the hospital is important and has a great affect on how care is provided at the bedside and beyond.  It has been a year since the whiteboards have been installed by every bedside at the Stollery.  They have become an important and well used tool for families and staff in establishing relationships and improving communication.  Art, Terry & Pat spent countless hours working with the FCC staff relocating existing boards, re-painting walls and hanging new boards for our families.  It takes an incredible amount of coordination to go into patient rooms to do the work that they need to do and they did so with great care and compassion for our patients and families. Thank you for doing the great work you do and for being Champions of Family Centred Care!

CNE Champions
Family Centred Care Champions 
Pediatric Clinical Nurse Educators
Back Row: Karen Calhoun (Family Member), Maria Goldberg (Manager), Vanessa French, Amy Davidson, Julie Rehman, Anna Cormier, Jaime Sieuraj Front Row:  Kim Bateman & Wanda Ma
Not Pictured:  Jackie Ruszkowski, Denise Capito 
& Sandra Caligiuri

The Pediatric Clinical Nurse Educators (CNEs) not only embrace and demonstrate the values of Family Centred Care but also inspire these values in others.  The CNEs were instrumental in the success of the new whiteboards by including their use in the training of nurses as well as integrating this tool in the routine safety checks.  They team up with family members to share their own experiences of what Family Centred Care means to them from a staff perspective during the orientation of new staff each month.  They model Family Centred Care in the way they educate staff and provide care to patients and their families.

Thank you to the Clinical Nurse Educators for being Champions of Family Centerd Care!

Do you know a person or team who should be recognized as champions?

A "Champion" can be best described by one or more of the following statements:
  • Have been directly involved in the development of the Family Centred Care Network and/or its initiatives 
  • They will have demonstrated the principals of Family Centred Care in their own practice and through their own modeling and leadership, have influenced others to be family centred in how they carry out their duties 
  • Have provided a significant contribution to a project or event that helps promote and carry out the philosophies of Family Centred Care at the Stollery 
If this describes anyone you know, please send a brief description as to why you feel they should be recognized to:

RECOGNIZING OUR COUNCIL CHAMPIONS!
FCC Council Champions May 2013
Family Centred Care Council Champions left to right:  Family and Original Council Members, Karen Klak & Karen Calhoun, Family Member, Original Council Member and Stepping Down Co-Chair, Loreen Gomes, Original Council Members, Dr. Christine Kyriakides & Dr. Ian Adatia, Manager, Family Centred Care, Heather Mattson-McCrady, Administrative Assistant, Kaitlin Belair, Original Family Member and Co-Chair & Coordinator, Family Cetnred Care Marcel Panas
NICU FACT FCC Champions
NICU Family Advisory Care Team Champions
Left to right: Nurse Practitioner and Original FACT member and Co-chair, Denise Clarke, Original FACT member and NIDCAP Trainer in Training, Dr, Juzer Tybekhan, on telehealth screen: Social Worker, Amanda Schroeder, Nurse, Andrea BrandtSocial Worker and Original FACT member, Karen Long
As we continue to recognize our Family Centred Care Champions, we wish to especially recognize the many staff, physician and family who have lent their time as members or who directly support the work of the FCC Council and NICU Family Advisory Care Team since they both began meeting in the fall of 2009.  Members of both councils gather monthly for regular meetings, attend various committee meetings and also provide countless hours supporting the FCC Network's many initiatives.  It is through the work of these councils that the seeds of many Family Centred Care initiatives have been planted and successfully carried out. They set direction and priorities for the incredible work that has been accomplished in the past 4 years.  

We recognize members of both of these councils who have served more than two years as Family Centred Care Champions.  Over the next couple of months, we will be making sure that eligible council members will get their pins!

Regardless of how long you have served on either council, we sincerely thank the over 100 members who have, at one time or another, served on these councils. 
CARING FOR BABIES BORN VERY EARLY AND VERY SMALL ... THE 23 WEEK DILEMMA

Preemie Hands As reported in the February edition of the primer, for the past year, a working group consisting of Neonatologists, Nurses, Nurse Practitioners, Social Work, Perinatologists, Obstetricians, Ethics, Residents, Fellows, Family Centered Care Staff and family members of FACT have researched, discussed and debated the topic "the 23 week Dilemma".  

 

Background:

 

Up until just recently, parents were not routinely offered the option of resuscitating their babies born as early as 23 weeks. Experiences in other parts of the world indicate that it is possible for babies born this early to survive and do well enough to go home with their families.  However, the inconsistent approach to offering resuscitation to families in this situation has been very challenging for both families and staff who care for these babies.

 

Despite (or because of) the many differing views and experiences, this working group exhibited an incredible sense of collaboration.  This resulted in many significant accomplishments that everyone involved believes will improve the experience for both families and staff in this situation while improving outcomes for these extremely vulnerable babies. 

 

The results:

  • All parents, through consults with their health care team, will be provided the option of resuscitation of babies born this early
  • The decisions that the families make with the health care team will be respected ... regardless of the decision
  • Tools and teaching methods  are being developed to help develop the skills of the team providing the consults to families
  • Tools and information sheets are being developed to provide parents some of the information, in a way that is meaningful to them,  they need to make these challenging decisions (such as the document which you may download 
Congratulations and thank you to the members of the working group and to the hundreds of people throughout the many disciplines who continue to be engaged in the necessary conversations.  This has been a great example of collaboration and engagement.

 

COLLABORATION & ENGAGEMENT AT EDUFEST
Sharon Drury, Geri St. Jean
 and Marcel Panas team up to present theWhiteboards at Edufest 2013
The theme of this year's Edufest, which took place during National Nurse's Week, was Engagement.  Sharon Drury, Clinical Unit Manager andGeri St. Jean, Clinical Nurse Educator - both of the Stollery Emergency Department, "engaged" with
Marcel Panas, Coordinator, Family Centred Care, to share the experience of implementing the whiteboards.  The three presenters focused on how staff, families, management and other resources were continually engaged throughout the design, implementation and evaluation phases of the project.  We shared our own observations of the implementation of the whiteboards, not only in Emergency Department, but throughout the Stollery Children's Hospital.  The presentation was well received and has even resulted staff from adult health care centres contacting us for assistance in implementing something similar.  
A GREAT RESPONSE RATE TO DATE: FAMILY CENTRED CARE SURVEY

May 1st was the first day of the rollout of the Family Centred Care Survey.  This survey is being conducted by the FCC Council to evaluate the perceptions of staff and families regarding the delivery of FCC at the Stollery.  

 

We are excited to see so many families and staff responding.  As of May 24th, 1,038  families, 44 physicians / residents, and 206 staff. We have reached 72% of our targeted number of responses.  The survey will continue until June 28.

 

If your child was at the Stollery since May 1, 2013 and you didn't have the opoprtunity, please complete the survey online at:

https://survey.albertahealthservices.ca/TakeSurvey.aspx?SurveyID=72LKlp9K 

 

We look forward to reviewing the expected rich responses from staff and families to inform the future directions and priorities of the FCC Council.