"Paradoxical Lives" by Frank Gavin

When many years ago our son, Peter, was in Sick Kids with an acute kidney and blood infection, my wife and I took turns staying with him night and day. I remember leaving the hospital on Easter Sunday and looking up at the window of his room on the seventh floor and realizing that that room was now our family’s home. And opening the front door of our house twenty minutes later felt more than a little like entering a hotel.

     No doubt the experience would have been different and even more complicated had there been another child at home. Still, my experience since then with other parent volunteers at SickKids and elsewhere suggests that what struck me that Easter—that we were now living in the realm of paradox where contradictions and seemingly incompatible realities sat side by side—has marked the lives of most of us. We had unexpectedly found ourselves in a place where we were, among all the various people and professions at the hospital, both least at home and most truly at home.

     Peter was never a patient in the NICU, but I can easily imagine that the paradoxical situations in which we found ourselves, e.g. wanting to move him just a bit to find a more comfortable resting position but fearing that this might cause him only pain or disconnect him from something to which he absolutely needed to be connected, must be even more common and acute in the NICU. I wanted very much to be a competent father—and I could see and feel that Peter wanted me to be just such a father—but initially I didn’t even know I could unplug the IV pole and thus carry him, squirming in pain, much more safely to the washroom where I could perform the one task I had been assigned: collect and measure his “outputs” every hour or so through the night. For the first few nights I was next to useless.

     Paradoxes abound for families, both in and out of hospital. We simultaneously feel full of hope and close to despair and are alternately resilient and exhausted. Capable of absorbing and applying lots of complex new information one day, we are barely able to make sense of simple instructions the next. Parents and children often labeled as and then expected to be “heroes” find themselves acting or thinking in ways far from heroic. For many, the impossible dream is to live utterly ordinary lives.

     Perhaps the hardest paradox to come to terms with is that wonderfully rich, sometimes enduring, and even humour-tinged relationships—with nurses, doctors, therapeutic clowns, respiratory therapists, and, not least,  other parents—often grow, directly or indirectly, out of our own and, more to the point, our children’s most painful experiences. Sometimes one parent of a child seeks out or simply finds himself or herself in such relationships while the other parent does not. Another paradox? Or maybe just the simple or not-so-simple consequence of differences in personality.

     There are, of course, grimmer, more profound, and more intractable paradoxes than the ones I have described and referred to, paradoxes certainly familiar to all who have spent time in level three NICUs. They elude understanding and even, perhaps, imagination. Still, all of us—healthcare professionals included--would do well to recognize and attend to the paradoxes we and those around us live with and through. We’ll judge (ourselves and others) less and understand more.


Frank Gavin teaches English at Centennial College in Toronto and serves as one of two public members on the Canadian Drug Expert Committee of The Canadian Agency for Drugs and Technology in Health, a body that recommends to public drug plans which drugs should be listed. This essay was written in response to a request from the editor of the Linden Fund newsletter to write about paradox, a topic Frank touched on in his presentation to parents from three Toronto NICU groups in November 2011. Frank was a co-chair of the Family Advisory Committee at SickKids and the founder and chair of the Canadian Family Advisory Network. He received the Volunteer Humanitarian Award at SickKids in 2002 and the Contribution to Child Health Award from the Canadian Association of Paediatric Health Centres in 2008.

NICU retreat brings together parents from Sunnybrook, Mount Sinai and SickKids

Tri-Hospital Parent Advisories

“Best Practices for Our NICUs”

Saturday, November 5th 2011

Sunnybrook Hospital, 2075 Bayview Avenue

8:00 – 9:00 Breakfast

9:00 - 9:30 Welcome and introductions

9:30 - 10:00  "Beyond "Giving Back": Lessons Learned by Veteran Parent Volunteers" - Frank Gavin founded the Canadian Family Advisory Network (CFAN) and currently serves as CFAN's National Liaison.

10:00 - 10:30 “Peer Support: the important role”, Mt Sinai

10:30 - 11:00 coffee break

11:00 - 11:30 “Getting to Yes: family and staff partnerships at Sick Kids NICU”, SickKids

11:30 - 12:00 “The effectiveness of a Paid Parent”; Sunnybrook

12:00 - 12:30 Lunch with speakers Dr. Diambomba, Mount Sinai & Dr Ng, Sunnybrook

12:30 - 1:00 Group discussion/wrap up

For more information or if you are interested in attending (spots are limited) please contact Kate.Robson AT sunnybrook.ca

Janis Purdy and I will share activities at SickKids' NICU family council and we look forward to a good learning and networking opportunity for parents and staff focused on patient and family engaged care in the Neonatal Intensive Care Unit.

National Roundtable on the Health of Caregivers of Children with Disabilities

Frank Gavin recently shared with CFAN his report on a round table event hosted by Ottawa Hospital Research Institute and funded by CIHR which identified caregiver health as "a pressing public  health issue" needing an integrated health system response. Per Frank's request to share, what follows is his report verbatim. Please share your thoughts on the priority actions and any suggestions for initiatives to promote caregiver health. When I think of addressing caregiver "isolation and lack of information", the support that is top of mind is properly resourced peer support programs.  

National Roundtable
on the
Health of Caregivers of Children with Disabilities

I am writing to let you know about a national roundtable I participated in on November 5 in Ottawa. This invitational event was hosted by the Ottawa Hospital Research Institute and funded by Canadian Institutes of Health Research (CIHR) and Health Canada. Just over fifty people took part; I was one of seven or eight there “as parents.” None of the parents was there to represent an organization, but all of us were all asked to spread the word about the issue of the health of caregivers of children with disabilities, in general, and about what happened at the workshop, in particular, with all those who might be interested—and that would certainly seem to include all those who are a part of CFAN.

The text that follows is something of a hybrid. Much of it is taken directly or with just minor revisions from the briefing note created by the organizers. I have added some content, especially about Dr. Brehaut’s presentation, that I think will be of particular interest to families. I have also added a section at the end called “What You Can Do.”

The purpose of this roundtable was to engage parents, researchers, clinicians, non-government as well as government organizations, and policy makers in a process designed to help develop what are called “knowledge tools” needed to support families of children with disabilities. The objectives were to:

1.    Discuss the findings of recent CIHR-funded studies focused on the issues of the health of Canadian caregivers of children with disabilities
2.    Consult with stakeholders/decision makers about what issues need to be informed by future research
3.    Initiate the development of practical, research-based knowledge tools that would be useful for supporting the health of caregivers of children with disabilities
4.    Improve links and exchanges among researchers, policy makers, and caregivers committed to improving the health of caregivers of children with disabilities.

The organizers who reviewed the feedback from roundtable participants report that the participants and they themselves thought the event achieved those objectives and more.

The Process

This one day roundtable began with two keynote speakers. Dr. Jamie Brehaut provided an insightful overview of research being conducted by a multidisciplinary research team.  Among the findings he reported were the results of an Ontario study that showed the caregivers of children with cerebral palsy were about three times more likely to have back problems, five times more likely to have stomach or intestinal ulcers, and  three and a half times more likely to have heart disease than the general population of caregivers.. A broader study using Statistics Canada databases showed caregivers of children with health problems were two and a half times more likely to report depressive symptoms and two and a half times more likely to report a chronic health condition. The news wasn’t all bad. For instance, “many caregivers report positive aspects associated with being able to provide effective care,” and “some studies show REDUCTION in mortality among caregivers.” Dr. Brehaut noted that caregiver health is increasingly on the radar as a public health issue in Canada, though most often in relation to the care of the elderly.  Meanwhile, half a million people under twenty have some form of disability.

Ian Brown, author of The Boy in the Moon, then spoke about caring for his son Walker, as well as his hopes for a society that does not try to fix the disabled, but rather tries to learn from them. Those of you who heard Ian in Halifax will know how insightful and thought-provoking he can be. He remained for the rest of the day as one of “the parents.”

These presentations were followed by a combination of plenary discussions and group work.

Preparation

Participants received several documents in advance of the meeting, including a summary of the results of a pre-roundtable survey (completed by 95% of the participants) and an overview of research findings. Most of the day was focused on discussing the implications of caregiver health risks, suggesting mechanisms and approaches for sustainable change, and identifying priority areas for future research.

Participants identified key priority actions for the next two years:

1.    Redirect health systems’ attention to an integrated approach to caregiver support, including family-centred health care and a caregiver navigation system
2.    Develop a template of key themes to organize information on programs and policies by province/territory, and begin to populate the template and make it available nationally
3.    Develop a communication strategy that positions the health of caregivers as part of a pressing public health issue, and embed this perspective in new and existing policy frameworks
4.    Create national standards for assessing caregiver health
5.    Reduce the powerlessness of caregivers by addressing isolation and lack of information

For each of the priority areas, participants suggested people in the room who could
generate the momentum required to move these recommendations forward.

The final activity of the day was a discussion on areas for future research. Participants explored what evidence would be required by policy makers to implement some of the recommendations generated throughout the day. The implications, impact and outcomes of the Alberta caregiver legislation were also mentioned as a potential aid to policy makers. Participants suggested more research on the actual health care costs incurred by families, on their quality of life, on the “costs” (or effects) of caregiving on income and employment, and on respite care including a cost benefit analysis. Participants also emphasized the importance of mining the results of research on caring for the elderly and young adults to see if these experiences can be adapted to helping families of children with disabilities.

Dr. Peter Rosenbaum and Dr. Dafna Kohen closed the roundtable by thanking participants for their contributions to this important dialogue. They confirmed that the group had met the objectives for the day and emphasized the value of continued networking among participants that was initiated at this meeting. They also pledged to maintain the momentum that was generated at the roundtable.

What You Can Do

The organizers and indeed all the participants are keen to spread the word about the importance of the issue, about what is already known or coming to be known about caregiver health and its effects, and about what is being done or needs to be done in the realm of public policy. Dr. Rosenbaum emphasized at the end that the purpose of research in this area is to improve the lives of children, youth, and families, so there will eventually — and maybe quite soon -- be need for lobbying, letter-writing, and the like. My own sense is that parents are almost always the best advocates for their children but often very reluctant advocates for themselves. But of course the health of children and the health of their parents and their whole families are intimately and inextricably related.

So please
•    share this report with anyone and any group you think may find it to be of interest,
•    let me know if you have questions about the roundtable that the above does not address, and
•    let me know if you have suggestions or questions you would like me to pass on to the four organizers of the event (Drs. Kohen, Rosenbaum, Arim, and Brehaut).

I will share with everyone on the CFAN contact list any further information I receive about what follows the roundtable. In addition, I know it is the intention of the organizers to engage more parents and other caregivers in subsequent activities, and I’ll ensure they know that they will find valuable contributors among the groups and individuals who make up CFAN.

Frank Gavin
frankgavin@rogers.com
November 21, 2010

Canadian Family Advisory Network (CFAN) Workshop October 19th

For those interested in parent collaboration and partnership with health care professionals, this year's CFAN Workshop on October 19th at the Westin Hotel in Edmonton will be an exciting educational and networking opportunity. Between 9:00 am and 4:45 pm, CFAN hopes to offer:

• reports from all CFAN groups represented focusing on key challenges and accomplishments
• results of a survey from these CFAN member groups
• presentations and discussion with representatives of youth councils about how youth and family advisory groups are now collaborating and can best collaborate in the future
• presentations and discussion on existing family-to-family support / mentoring programs and how advisory groups can help initiate, develop, and sustain them
• update from Dr. Bob Armstrong (Co-Chair of the Coalition and Chair of Paediatrics at BC Children's) on the ambitious multi-year advocacy project, "The Child and Family in the Healthcare System", that CFAN will help lead with partners in The Canadian Child and Youth Health Coalition.
• a patient/parent/staff panel presentation from local hosts The Glenrose Rehabilitation Hospital on "recognizing and dealing with the elephant(s) in the room: diagnosis and beyond. " (tentative tile)
• a Steering Committee business meeting open to all the evening before the workshop to revise bylaws and more clearly define roles for Steering Committee members
• Steering Committee brief report to all at the end of the Sunday workshop
• Sunday evening dinner and informal conversation
  

CFAN co-chair Frank Gavin also passed on that the updated program for the Canadian Association of Paediatric Health Centres (CAPHC) Conference October 19-22 also in Edmonton offers an "unprecedented degree of youth and family participation".

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.

NICU parent - staff brainstorm

Fifteen SickKids NICU staff met with three parents to share ideas on family centred care. Two other parents who could not make the meeting participated via written submissions. The two hour scheduled exchange went to almost three and a half hours as we recognized communication that works and delved into specific and general challenges relating to space, continuity, developmental support, role clarity, helpful technology, scripted communications, a reengaged family advisory and more. Our next steps are to draw up a list of recommendations and together discuss how to best take this forward, considering the considerable prior work by an earlier NICU family advisory council. Participants at this NICU family centred care brainstorm were, going around the table: Dr Jonathan Hellmann (NICU Clinical Director), Judy Hawes (NICU Nurse), Jonathan Blumberg (parent, Sasha Bella Fund), Lisa Bonney-Leung (parent), Kim O'Leary (Child Life), Jennifer Butterly (Marnie's Lounge), Lori Ives-Bain (NICU Palliative Care), Chris Churchhill (NICU Operations Director), Melody Hicks (NICU Clinical Manager), Pam Hubley (Chief, Nursing), Janis Purdy (parent), Dianne Flacks (parent), Jonathan Purdy-Flacks (Janis and Diane's baby), Kim Dionne (NICU Nurse Practitioner), Sharyn Gibbons (NICU Nurse Practitioner), Chris Elliot (NICU Quality Leader), Suzanne Breton (Occupational Therapy), Laura DeOliveira (Social Work, NICU), Dianne (Social Work, NICU) Sandy Steinwender (Occupational Therapy). Frank Gavin (SickKids Family Advisory Committee) joined us for the introductions and offered to share resources on NICU family advisories but was unable to stay due to another presentation committment. Gord and Stacey Archer provided written submissions that were presented by Janis.

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.