CFAN needs your help for survey on parental/caregiver presence during induction and recovery. Please circulate.

From Sue Robins of  The Canadian Family Advisory Network

Dear Friends and Colleagues:

We are writing to ask for your help in circulating a survey link for parents and caregivers about parental/caregiver presence at anesthesia induction and post-anesthesia recovery.

The survey is part of the Child and Family in the Healthcare System project of the Canadian Child and Youth Health Coalition (CCYHC). Some of you know about the project; some of you know about the Coalition, and some of you know about both, but please allow us to provide the essential background for those who don't. (Much of this information is also included in the attached PDF to be forwarded to parents and caregivers as well as on the last page of the online survey).

Background

The Canadian Child and Youth Health Coalition (CCYHC) is a collaboration of ten major national organizational and program members working together with a common vision to advance the cause of child and youth health care in Canada. We represent The Canadian Family Advisory Network (CFAN) on the Coalition's Steering Committee. You can find out more about the Coalition and its members at www.ccyhc.org<http://www.ccyhc.org/>

CCYHC has established the Child and Family in the Healthcare System Working Group to explore the ways in which children, youth, and their families are supported and included within the healthcare system, a task that entails, among other things, identifying differences in practice at various hospitals.

The Survey

The Working Group's first project is the investigation of hospital practices related to parental presence at anesthesia induction and post-anesthesia recovery. Different hospitals have different practices as to if, when, and how parents/caregivers can accompany children into the operating room until the children are asleep and in the recovery room when the children are waking up from anesthesia.

Please note that though the issue is generally called "parental presence ..." we are keen to hear from other caregivers (grandparents, foster parents, aunts, etc.) who may have been present-or who perhaps wish they could have been present-with a child or youth during induction or recovery.

We would appreciate your help in distributing the link to the survey to all parents or caregivers on your advisory council or, for those of you who work with families in a different capacity, to those parents and caregivers you think would, because of their experience with a child or youth who has had one or more surgeries, be interested in contributing.  The survey is submitted automatically electronically online, so there's no need to collect surveys - it is all paperless.

Please cut and paste the text (including the survey website link) at the bottom of this page and forward to your contacts.  (We have already sent another survey to all of the academic health centers that have paediatric surgical programs and to a number of community hospitals across Canada, and we will soon send another survey to members of youth and children's councils.) The survey takes about 20 minutes to complete.

We hope most of the parents and caregivers can complete the survey by December 15, 2009.

Survey Results

The names of all responders and the name of the hospital where their children's surgery or surgeries were performed will be kept confidential. Any reports, publications, or presentations resulting from the surgery results will contain only summary data that will not identify the parents/caregivers or the hospital. We will be happy to share the results with all those who contributed and with all the Coalition members. Working with the survey results, the Working Group, in consultation with CCYHC, will determine best practices and develop recommendations that will be shared with all the hospitals.

On behalf of our Working Group, thank you for your interest and participation. If you have any questions, please contact us by calling Melissa Clulow (CCYHC National Coordinator) at 514-656-1268 or by emailing mclulowATcheo.on.ca

Respectfully yours

Frank Gavin and Sue Robins

Co-Chairs, Child and Family in the Healthcare System Working Group

--------------------------------------

For you to cut and paste to your family contacts:

Subject:    Survey: Parent/Caregiver Presence at Surgical Induction and Recovery

Dear Friends and Families -

We are writing to ask for your help in completing a survey for parents and caregivers about parental/caregiver presence at anesthesia induction and post-anesthesia recovery.  The survey is part of the Child and Family in the Healthcare System project of the Canadian Child and Youth Health Coalition (CCYHC).

Please click on the link below to complete the online survey which asks about your experiences going with your child into surgery and the recovery room.

http://www.surveymonkey.com/s.aspx?sm=MVutJ_2b_2fdIyge6SLxx4tdgw_3d_3d

A full description of the survey is attached. This description also appears on the last page of the online survey.

The survey should take approximately 20 minutes to complete.

Please submit your responses by December 15, 2009.

Thank you very much for your time and attention - your input is important to us!

Frank Gavin on hospital family advisory structures

Frank Gavin, long time member of the SickKids Family Advisory Committee shares his comparative notes on five hospitals with parent advisor infrastructure. Frank offered the NICU Brainstorm to share resources on NICU family advisories or parent involvement and has been a mentor to the parents involved. His practical and theoretical knowledge of family/parent participation is a tremendous asset as SickKids expands parent participation.

Sickkids IPP Retreat on evolution of family advisory

On Monday February 11, the Family Centred Care and Inter-professional Practise Retreat brought together about 35 SickKids hospital staff for a five hour exploration of hospital strategies on parent advisory. Parents included current Family Advisory Committee co-chairs Sidney Cameron and Jill Adolphe and two dads outside the FAC, Malcolm Berry who now works at SickKids Foundation and has setup the Paige Berry fund in his daughter's honour myself for the Sasha Bella Fund For Family Centred Care, a Sickkids Foundation tribute fund. In preparation, participants were sent the conclusions of an internal review begun in March 2007 by the Family Advisory Committee that pointed out the committee's success required expanded parent participation and resourcing. This FAC review comes after teams were struck in 2005 under Margaret Keatings and Bonnie Fleming-Carroll to systematically consider and support interprofessional practise and family-centred care by SickKids staff.

Margaret Keatings, Chief Inter-professional Practise and Chief Nursing Executive, welcomed us and introduced the day as a two-parter. First we would discuss the planned two 30 minute video documentaries that would follow 3 - 4 families and then take footage and create two movies or points of view, one on Interprofessional Practise and another on Family Centred Care. Then the main event was a series of presentations on the FAC's call for restructuring, starting with Sidney and Jill's review of the focus groups, interviews and questionnaires and then followed by a literature review and survey of eight hospitals in Canada by Bonnie Fleming-Carrol. As it turns out, discussion as to the logistics and framing of the video was an excellent warmup for discussion of hospital plans to support parent and family advisers.

Margaret recapped briefly that the SickKids Family Advisory Committee are extremely proud of their achievements at launching initiatives, offering first person stories for education and participation on hospital committees however they need to expand family advisory roles at SickKids, deepen partnership between the hospital and families to identify opportunities to advance family centred care and child and family participation and this needs an update in their terms of reference: role, mandate, reporting & accountability and support and resource structures. The FAC also wishes to clarify how the work of family members not on the FAC (like parents who setup tribute funds) relates to the FAC and their accountability to SickKids and develop a 3 year plan for programs, projects and participation and commitment to the FAC role by FAC members and hospital management.

Before inviting the filmmaker to present the video project, Margaret asked participants to introduce themselves. Introductions were peppered with preliminary thoughts on what they had heard so far about the education movies and the FAC report : How do you separate interprofessional practise from family centred care, to me they are one and the same. Consider family to family support. When you say the documentary is 'point of view', exactly whose point of you will be presented? Families are an integral part of the team so is this two movies or one? Who is the audience?

Margaret introduced video team Marc and Marcy Stone who confirmed the primary audience is Sickkids staff and he responded in general with understanding that the division of the two films was somewhat arbitrary and that there would likely need to be additional families or short scenes added to capture the diversity of Sickkids patients [filming began late February or early March]

Each table then discussed the video and reported back on thoughts and comments and questions raised by the movie and FAC evolution. How do we ensure kids and grieving families are up for a video? The audience of the movies could be parents also. IPP is not only about complex care so how do we capture the range of Sickkids kids from three families? An important patient/family decision is to choose a permanent PICC line over continually reinserting IVs. When do we bring in the family? How do parents document their child's care? How do parents submit safety reports? How do parents evaluate HSC's performance? There should be a family on every committee. Are we ready to be completely transparent and debrief all adverse events? Consider family and child centred care, address a concern that family participation takes more time when it can be shown to provide better care and decision-making. Heart Centre has family-team rounds. There can be competing values such as when a family wants complimentary therapy versus heavy duty steroids. For some aboriginal families, the family is a whole group. How do people who believe in karma grieve? The trauma service has introduced a combined social worker and chaplain on the team included from the beginning. There can be disagreement between staff as to whether parents are ready to take the child home. Perceptions of families and teams can be very different and, surprise, teams are educated differently. There is the family centred care vision and the reality and documentation must show the flaws and conflict and when things go well, or not well. "This work is messy, gritty, what we do when there is no perfection". Look at disparities. It can be difficult to piece together for a sophisticated family so how is it for others? The film should include a study guide. Family and staff relationships actually constitute care, create results and allow continuity or not. Nothing is static, the ideal for family centred care can change even within the family. Successful work work on family advisers present parent's as integral to care, offers respectful partnership and working as a team. We need to build a buddy program and family to family communication.

After lunch we returned to the main event, focused discussion as to where FAC considered itself to be and where it wanted to go. An IPP implimentation team member gave an overview of the focus groups and surveys conducted and then FAC co-chairs Jill and Cameron presented the family advisory committees challenges relating to recruitment, visibility and accessibility, roles, infrastructure needs: would ideally like parents on every committee; after 18 years there still is no formal process to attract parents; the FAC is happy with initiatives for family CPR training during NICU visits, some family coffee groups and a family DVD however 100% of respondents did not know what the Parent Advisory Committee did (specifically) or how to contact them. There is a need to get onto the TV within the hospital. There is no telephone number. It is hidden on the website and not comprehensive. Perhaps there could be a storefront presence by family advisors. There is currently no budget. What is needed is fund raising and a hospital manager to help, with volunteers. The chairs ended with two quotes from staff: "Hearing the individual stories of family members touches people in a way that nothing else does." And "We need to get this right. If families are not happy, we are not happy."

Following Jill and Sydney there was further discussion and questions: We should pay parents, take care of parking, maybe a manager could be a parent. Families can support staff, other families and policy work. Do we not need an inventory of FCC skills. Would be great to have a family advisor in the hospital every day. The need put onto FAC outstripped its ability and in a way that is good. There could be a roll of people on call. Parent involvement is becoming the norm and in this shifting culture parents are requested by other parents. Need to build capacity in line with hospital strategic directions. Build infrastructure for family centred care with the FAC as the foundation.

Bonnie Fleming-Carroll then presented hospital research undertaken recently. A literature search since 2002 was winnowed down to 24 potentially relevent studies, with a few only about FACs. Eight hospital in Canada were then sent questionnaires. Two thirds had no recruitment policy for parents participation. All hospitals offered some compensation, such as vouchers and parking and we confirmed Sickkids does provide HSC volunteers with parking.

It was asked what restrictions there are on FAC members. A liason to the FAC suggested by way of "ground rules" that they watched for parents with an axe to grind or a particular focus on their kid. Some hospitals asks advisers to step down from active work if their children are in a critical in-patient period. One of the staff liasons to the FAC thought that "parents modulated themselves" in the past and a social worker stated that he trusted the process. The discussion turned to the FAC's mandate and it was presented as overseeing Family Centred Care incorporation in all hospital delivery in an advisory partnership using advocasy and education of staff to advance partnerships between families and hospital. The facilitator noted that some staff statements implied an interest in going beyond a mandate of partnership to one of being empowered to make changes. A question was posed about who from the FAC reports to the executive and Margaret Keatings was confirmed as this person. Margaret noted the FAC currently is forced to respond to hospital requests more than suggest new initiatives and the facilitator spoke of a change in culture seen in a pent up desire to do more to help the FAC. A doctor then suggested a FAC could go to a supporting staff committee for more clout and research and a FAC co-chair noted that some FACs include 50% staff. It was asked if the FAC could use telehealth to allow some parents far away to participate over internet. There was a suggestion to create support groups, awareness of Carepages and channel parents from the ground up in the departments. There was confirmation that volunteers currently are invited for one year, the hospital can request a second year and then a volunteer has to take 3 years off. There was one criticism of this as potentially losing good people quite fast.

The overall staff response to the FAC chairs was one of 'how can we help?' and the facilitator hired for this process noted that regarding the "partnership" discussion, "We have gone fundamentally beyond where we started today. Partnership literally at the table, mentors, roles and mandates and project prioritizing."

Interprofessional Practise and Family-centred Care : the McDonald Family

Thanks to Valerie McDonald for sharing her presentation on Interprofessional Practise and family-centred care at the first SickKids Hospital IPP Week on November 12 2007. The McDonald family exemplifies a deep expertise and connection to SickKids as over eight years Valerie helped care for three of her children at SickKids and then served on the Patient Safety Committee and the Family Advisory Committee. I connected with her in December and she was generous with her time just as the presentation is generous and constructive with their family experience.

Empowering Family in 'Family Centred Care'

Here are several broad initiatives to deliver family centred care in a large complex medical institution like SickKids Hospital.

1. Expand parent participation to every service and most teams in the hospital aiming to reflect the race, gender and background of the parent population as a whole. The hundreds of volunteer hours per month are provided by parents whose children are no longer in care, are experiencing a positive care path or volunteers interested in contributing their experience. The 2005-2006 Family Advisory Committee report notes it was "initiating a transition that will soon see the Hospital assume full administrative responsibility for the program. This should enable many more staff and students, often in interdisciplinary groups, to participate in the sessions and to take away with them ideas to draw upon and strategies to apply in their practice." The hospital could then go further, introducing parent advisory involvement at all levels.

2. Expand patient and family participation in SickKids data flow to open electronic access to the key data (contact info, diagnosistic history, care maps, schedules, actionable items, parental presence and resusitation wishes) and provide an entry point for notes on meds, symptoms and daily events. The parent login facilitates family-centred interprofessional practise and makes transparent all possible junctures along the care path including DNR orders. No such parent editable access exists however computer databases are being devised and funded continually and SikKids website is to be completely revamped.

3. Thanks to a blog comment on this entry, demonstrating the power and speed of collaborative data, we can naturally add a third facilitator of family-centred care: helping families to connect at parent meetings with a SickKids facilitator (as on floors 5 and now 4) or as Lisa suggests via a buddy system. So simple you can see the signs: Get a Buddy; Become a Buddy.

We would love to hear of any successful initiatives relating to family advisory committees, collaborative computing or parents helping parents that you might have seen, heard or read about at SickKids or elsewhere.

Interprofessional Week at SickKids

The Sasha Bella Fund was very happy to participate as sponsor of SickKid's first IPP week. About 100 SickKids nurses, doctors and allied care providers signed up for the first full day of activities held at Hollywood Theatre. The day was begun with welcome remarks by Margaret Keatings and then I spoke about Sasha's experiences, beginning with three short videos showing some of Sasha's milestones: thriving and starting to fully walk in December 2005, playing with an IV filter four months into our stay at SickKids and then together at home while Pamela worked on her IV tubes and our sweet peach passing mom the alcohol swabs just two days before she died. My remarks focused on communication challenges and appears below.

David Nicholas provided an overview of the theory and development of the IPP framework and priorities at SickKids hospital ending with examples of new initiatives and sharing dominant themes for parents and families (communicate, collaborate, coordinate) and the child/patient (comfort, respect, communication, choice).

Ivy Oandasan then reviewed wider social frameworks including emerging legal requirements that all care providers take courses in interprofessional education to learn team collaboration skills and a pressing need for 1200 learners to be accomodated yearly by volunteer mentors and coachs and to open up training and preceptorship roles within care settings. IPP education will be woven into medical licensing with the aim that by 2009 all health care graduates across the disciplines will be competent in collaboration. This competency is seen as marking a "fundamental shift" within health care provision nationally in order improve patient outcomes and enhance family-centred care objectives while using scare resources more effectively.

The stage was then taken over by "IPP Live", a theatrical presentation focused on a family meeting when a mom wants to take her daughter home. After the family was acted out, it was repeated with the audience shouting out "stop" so as to intervene and better direct the flow of the meeting.

I had to leave early at this point as Pamela had her hand's full with Mia and our new baby Eve who joined us Saturday morning and is doing just great. During the one short break I had an opportunity to meet Frank Gavin, a dedicated member of the Family Advisory Committee at SickKids Hospital as well as both nurses who had cared for Sasha and nurses excited to talk about their new initiatives. I was thrilled to hear that the Heart Centre is restarting the parent's group meetings!

Poster displays presented on Thursday and Friday will relate new IPP initiatives including:

Physiotherapy Clubfoot Clinic
ACTS (Acute Care Transport Services Team)
The Chronic Pain Program
NF1 (Neorofibramatosis type 1) Team
Decision Tree for Feeding in Paediatric Palliative Care
Rheumatology and Neonatal follow-up clinics
Annual Congenital Hand Program Family Picnic
The Beanstalk Program (6A)
2007 World Transplant Games
The Medical Directives Committee
Newborn screening
Admission Medication Reconciliation
The Good 2 Go Transition Program
Research into cross-cultural patient care in NICU
IPP "Leadership in Action" education workshop
SCOPE (Strategic Career Opportunities for Professional Excellence)
Preceptorship Initiative, Toronto Rehabilitation Institute - IPC Working Group

SickKids Hospital was designated a Best Practise Spotlight Organization candidate by the Registered Nurses Association of Ontario in the spring of 2006.

SickKids IPP efforts are being coordinated by Bonnie Fleming-Carroll and supported by Michele Durrant and Natasha Brownrigg. The Sasha Bella Fund thanks them for their commitment to family-centred care with the inclusion of Sasha's story and for the continuing privelage of being able to give back to SickKids Hospital for the dedicated care provided to our peach.

Family-Centred Care at SickKids and reinventing the Family Advisory Committee

Back in February, I came across this wonderful description of family centred care that is both rooted in specifics and suggestive of values to guide us in this journey.

“Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

Frank Gavin, from the 2005 Report of the SickKids Family Advisory Committee

So much is packed into these sentences to guide the devising of specific practises. The last two sentences both soars with humanity and evokes a deep intimacy: how the parental "love and it's expertise" play out in a new, scary and complicated setting where parents may be inexpert at medicine but know their children best; and that deep wish, felt by every parent who has sat at a child's hospital bedside, "to be always at home", hopefully to go home or, when that is not yet possible, to bring home ideals to the hospital: love, togetherness, safety, peace, growth.

I met Frank at IPP education day. He is thoughtful and supportive and has taken it on himself to learn as much as he can about how hospitals are implimenting advisory family advisory councils as a resource for SickKids.

Which leads to the most exciting news of all. The SickKids family advisory committee is in the process of dissolving itself. Its own work and analysis lead it to conclude that the hospital needs a more integrated involvement of parents and so the council and the hospital are in the process of completely reshaping parental involvement in the hospital.