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."

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