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A Primer on Family Centred Care
February 2013
"It is time for us to stand and cheer for the doer, the achiever, the one who recognizes the challenge and does something about it."
- Vince Lambardi
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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 FCC Council members, Donald Lepp, parent who joins us remotely from Winnipeg, Manitoba and Coordinator of the Edmonton Down Syndrome Clinic, Gayle Parks Krupa, RN, BScN.
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MEMBERSHIP CORNER -
DONALD LEPP
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What brought you to the FCC Council?
I'm a big believer in families taking a more active role in the care of their children. The FCC provides a unique opportunity to be more involved. It also provides a unique insight into issues facing the hospital.
What is the one thing you would like network members to know about you?
According to my wife I make the best Steak Sandwiches...not really all that important; but i just noticed my barbecue sitting very lonely on my deck while the wind is howling and the snow is blowing. Can't wait for barbecue season.
What is something the NICU FACT has done (past or present) that you are excited about?
The council has taken on a lot of interesting challenges but it seems that most of the work in one way shape or form has been related to improving the relationship between families and the hospital. I think we are making positive steps in understanding each other and removing these barriers can only help improve the care of our children in the hospital and at home.
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MEMBERSHIP CORNER -
GAYLE PARKS KRUPA
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What brought you to the FCC Council?
I am a pediatric nurse who believes in family centered care and families having a voice. I also have a daughter who spent many months in the Stollery as she had leukemia in 97, relapsed in 2001 then had a bone marrow transplant in 2002. Her illness made me really realize the importance of Family focused care. I was thrilled when I was approached about taking a seat on council as I bring two voices; that of staff as well as that of parent.What is the one thing you would like network members to know about you? I graduated in 2009 with my BScN after working for 21 years as an RN. I have three beautiful daughters; 20, 18, and 12, who make me more proud every day. And my mother and both grandmothers are also nurses ... I think I will have at least one daughter as well who will fill the ranks. What is something the Council has done (past or present) that you are excited about? I am just thrilled there is a council, I am thrilled with the speed at which we are achieving things in this institution. I am excited about the inclusion of families in so many areas of administration. I am excited about the possibility of having a FCC day where the feelings can spread throughout, when we can reach the veteran staff and the non health professional staff so that it becomes a culture not just a term.
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THE STOLLERY TEAM - INCLUDES EVERYONE
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 | | Photo by Stephen Wreakes, Medical Photographer, Alberta Health Services |
You will begin to notice this new photo on Stollery Family Centred Care documents and presentations.
We wanted an image that shows how patients, families, staff and physicians are all members of the same team with the same goal - caring for our children. We also wanted to show the diversity of the patients we care for and those that care for them.
This photo is an authentic Stollery picture which includes Stollery staff and a Stollery family. Thanks to everyone involved for making this photo happen - especially our Child Life team, Unit 4C and the Stollery family featured in this photo.
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STOLLERY DAILY NEWS - REACHING OUT TO PATIENTS AND FAMILIES!!!
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Coming soon to an electronic newsstand near you - The Stollery Daily News!!!
March will see the introduction of a new and exciting service to patients and families at the Stollery. The Stollery Daily News will be a daily email sent to families who have signed up for a Wifi account with information including:
- Daily events (e.g. Beach Hours, special events, opportunities to meet other families)
- Information about the hospital and staff (e.g. "What is a Resident?")
- Links to information about services and resources for families (e.g. area restaurants, financial services, transit, maps, etc.)
Families will have the opportunity to opt out of receiving this newsletter or sign up other family members to get the notices. At any given time there are 100 - 200 active accounts on our Wifi network so this will provide a great opportunity to share information that will help improve the experience for many of the patients and families we may not normally have the opportunity to connect with.
We want to thank Child Life, Social Work and Spiritual Care for teaming up with FCC as we look for new and effective ways to reach out to our patients and families!
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NICU - WHEN BABIES ARE BORN AT THE GESTATIONAL AGE OF UNCERTAIN VIABILITY
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 Up until recently, it has been the generally accepted practice in the Northern Alberta region to offer resuscitation to babies born after they have reached 24 weeks gestation. There is considerable research to support that gestational age is not the only factor that contributes to the potential viability for babies born between 23 to 25 weeks and that the outcomes (short and long term) for these children are not that different.
For many months, a committee of Neonatologists, Nurse Practitioners, Nurses, Obstetricians, Ethicists, Perinatologists, Social Work and family members along with the involvement of the NICU Family Advisory Care Team (FACT) have been discussing this incredibly important topic. It is the view of this committee that parents should be presented with the option to resuscitate babies born as early as 23 weeks based on consistent and meaningful information and that these families be supported regardless of the decision they make.
The main focus of the committee currently is to share this message with the health care community including NICU Grand Rounds, Obstetrics Grand Rounds, Lunch & Learns for staff, provincial health councils and, most recently, Perinatal Grand Rounds.
We wish to thank Dr. Juzer Tyebkahn and the rest of the members of this committee for collaborating with FACT and our NICU families in the meaningful way you have.
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February was another busy month for sharing unleashing the culture of Family Centred Care through Family Talks. Family member, Karen Calhoun, joined Clinical Nurse Educator, Kim Bateman, once again to welcome new nurses to the Stollery during their orientation. The evaluations suggest that these sessions get better and better! If you are interested in introducing Family Centred Care to new staff through the sharing of your personal journey, please click on the link to Email Marcel Panas!
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JUST THE F.A.C.T.S. ABOUT NICU FCC
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 Alan MacDairmid, family member and FACT Co-Chair, Karen Long, Supervisor, NICU Social Work, Andrea Brand, NICU Nurse and Heather Matson McCrady, Manager, Family Centred Care, teamed up to share what the NICU Family Advisory Care Team is and, through it's many initiatives, how it continues to improve the experience for patients, families and staff in the NICU to physicians and staff during the weekly NICU Grand Rounds. Many of the attendees took the opportunity to talk about other possible initiatives such as involving families in discharge planning and improving communication among all members of the team.
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RESPIROLOGY RESIDENT ACADEMIC HALF DAY
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Heather Mattson McCrady and Marcel Panas continued the FCC Council's goal of reaching out to Residents and Fellows by presenting the research supporting Family Centred Care practices in their daily interactions and what that means specifically at the Stollery. This resulted in a meaningful conversation where we all walked away with some valuable perspectives. Thank you to Dr. Jackson Wong and the Respirology team for inviting FCC to be part of the education of your Residents!
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NEW FAMILY REPRESENTATIVES ON PEDIATRIC PAIN MANAGEMENT COMMITTEE
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We are very excited to have three families from the FCC Network participate on the Pediatric Pain Committee: Rana Biesenthal, Stacy Grainger-Schatz, and Mary Bell. Their experiences with their children ranging in age from infants through to teens in managing many different types of pain: from needle pokes, IVs, experiences with surgery and recovery, and chronic pain will provide valuable insight on the committee. In addition to the diverse needs of each of their children, Rana also brings a distance / rural perspective living in Saskatchewan and traveling to the Stollery for care every month to 6 weeks. Already they have provided valuable feedback on a pamphlet Controlling Your Child's Pain after Surgery that is being modified and additional resources created for children and families.
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STOLLERY FOUNDATION AND FCC IN THE NEWS!
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Heather Matson McCrady joined Aleesha Jex, Acting Director, Marketing & Communications, Stollery Children's Hospital Foundation, on the Foundation's monthly Thursday spot on Global Edmonton's Morning News. Together they shared the importance of the family voice in fundraising for the Foundation and through the involvement in supporting other families in the hospital and its operations. Click on the following link for a look at the video from the interview!
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FCC BROCHURE AND APPLICATION FORM
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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!
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FAMILIES AND STAFF DESIGNING A DISCHARGE BINDER FOR FAMILIES WITH A CHILD ON TRACHEOSTOMIES/VENTILATORS
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Going home after being in hospital for an extended period of time is something that families are excited about and looking forward to. However, it can also come with a large commitment of learning how to manage the medical care of a child, coping with the accompanying anxiety and worry, and preparing their home for the added care and tasks. This is certainly true for families going home with a child who requires a tracheostomy and /or ventilator. Three families who have had this experience Andrea Morris, Amanda Lynn Davis-Newhouse, and Chad Herbers are joining efforts with staff, Unit Managers and Respiratory Therapists in creating a Discharge Binder that provides materials to support families in preparing for discharge and during this transition home. A big thank you goes out to Anna Cormier, Nurse Educator; Deb Devlamming, Professional Practice Lead from Home Care; and Heather McCrady, Manager Family Centred Care for sharing the lead in this collaborative effort.
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SCH FOUNDATION - BE AN INSPIRATION!
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Are you interested in helping the Stollery Children's Hospital Foundation by inspiring others with your story? If so, please contact Aleesha Jex (ajex@stollerykids.com / 780.431.4608) to discuss the details.
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FAMILY CENTRED CARE BEST PRACTICES AND BEDSIDE ROUNDS
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A recent Literature Review has provided valuable information that is supportive and encouraging of the work of the FCC Network. The Family Centred Care Council on reviewing this information has decided to make it a priority to understand how bedside rounds are currently practiced throughout the Stollery and to support family centred bedside rounds as best practice. The following is an excerpt from the Literature Review that supports these efforts: MCG Health System is seen today as a leader in PFCC by the Agency for Healthcare Research and Quality, the American Hospital Association, the Institute for Patient and Family Centred Care, and the Picker International Institute. They have committed to collaborating with patients and families since 1993 when it was planning for a new Children's Medical Centre. MCG overall: - received amongst the highest patient and family satisfaction scores in nationwide surveys of comparable pediatric facilities.
- It has demonstrated decreased length of stay, reduced medical errors, and improved staff satisfaction.
- is among the most cost-efficient organizations in the University Health System Consortium database and has reported a 5 year decrease in malpractice claims/litigation.
Cincinnati Chidren's Hospital implemented bedside rounds that included the following components: - Families are encouraged to be present for rounds and given choices about how they would like to participate.
- The charge nurse and bedside nurse participate and ensure that discharge goals are printed out daily and available to the patient and family.
- Physician orders are written on a laptop in the patient's room during rounds.
- Residents review orders out loud so that everyone, including the patient and family, can hear them and verify accuracy.
Quality improvement Data and Results: - Patients are being discharged sooner.
- Medical order entry error rates have been reduced from approximately 7-9% to 1%.
- Faculty report that patient- and family-centered rounds are a more effective way to teach.
- Families are more involved in development of the Plan of Care and decision-making.
- Although not all teaching can occur with families, residents now believe that teaching is better and that they are learning in ways that were not possible in the conference room or lecture hall.
- Family-centered rounds did take 20% longer than traditional rounds; however, all participants reported that their time is used more efficiently and that family-centered rounds saves time later in the day.
- Nurses have described a marked decrease in the need to page residents to clarify orders.
- They also report that families are less likely to question the care plan.
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