Family supported palliative research : “Sibling’s Perspectives: Toward a Better Understanding of their Involvement with a Dying Child”

I was very happy to receive this notice from Laura Beaune, SickKids Palliative and Bereavement Care Service Research Coordinator, sent out to the TRAC-PG list.

The Innovation Fund in Children’s Palliative Care Research, sponsored by TRAC-PG is very pleased to announce the recipient of this year’s Innovation Grant:

“Sibling’s Perspectives: Toward a Better Understanding of their Involvement with a Dying Child”

Grant Amount: $9,860.00

Principal Investigator: Ceilidh Eaton Russell, CCLS, MSc(candidate) Max & Beatrice Wolfe Children’s Centre, Temmy Latner Centre for Palliative Care, Mount Sinai Hospital

Research Team: Maru Barrera, Ph.D C. Psych., H/O Program, Dept. of Psychology & Research Institute, The Hospital for Sick Children, Laura Beaune, MSW, Palliative and Bereavement Care Service, The Hospital for Sick Children, Susan Cadell, MSW, PhD, Lyle S. Hallman Faculty of Social Work Wilfrid Laurier University Adam Rapoport, Division of Pediatric Medicine, The Hospital for Sick Children, Max and Beatrice Wolfe Children's Centre, Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, Maria Rugg, RN, MN, CHPC(C), Palliative and Bereavement Care Service, The Hospital for Sick Children, Rose Steele, RN, PhD, Professor, School of Nursing, Faculty of Health, York University, Kimberley Widger, RN PhD(c) CHPCN(C), Lawrence S. Bloomberg Faculty of Nursing, University of Toronto.

This year, 4 excellent applications were submitted from across the country (Toronto, Montreal and Manitoba) and the Review Committee were extremely impressed with the innovations in pediatric palliative care practice and research that each submission offered.

Special thanks to the Grant Review Committee and to our donors, The Sasha Bella Fund for Family Centred Care and SickKids Foundation for their continued support with this exciting initiative.

Please check out the (TRAC-PG website to have a look at previous year’s winners and projects.

All the best,


Your generous family donations at work as one donation of $5000 by the Sasha Bella Fund allowed for a matching grant by SickKids Foundation. The study lead and contributors are putting Canada on the international map of palliative and bereavement research and helping staff help families in large and small and powerful ways. A big thanks to the committee who read over all the applications and carefully decided where to direct the funds to make a difference: Laura Beaune (Chair, non-voting), Samantha Anthony (SickKids returning member), Christine Newman (TRAC-PG Rep), Winnie Seto (Parent Rep), Valerie McDonald (Parent Rep), Barbara Muskat (SickKids member), Beverly Guttman (SickKids member).

Please help the Sasha Bella Fund for Family Centered Care

It was five years ago this coming week that we brought Sasha to SickKids for her second heart surgery and her world turned upside down. And each holiday season we remember and think of all those at SickKids and also count our blessings.

We are expecting a boy in January so this year rather than holding a fun day we will simply appeal for your support online. Thanks to the generosity of so many over four years, almost S100,000 dollars has been carefully directed to 25 and counting initiatives supporting patient and family centered care, patient safety and palliative care.

These are traditionally less funded areas and we think they are vital to humanizing care, making it safer and broadly improving the experiences of children, families and staff. If you similarly value these programs please
help the Sasha Bella Fund help SickKids families.

The link lets you donate or sign up to get friends and family to sponsor you. Or here is some information you can pass on via email to those you think might help.

Please help The Sasha Bella Fund support patient and family-centred care projects at The Hospital for Sick Children (SickKids).

Sasha Bella Stein-Blumberg was born June 6, 2004 with Alagille Syndrome and
a compromised liver and heart. She was a sweet, loving and determined little girl who lived with gusto. After Sasha's death on June 20, 2006, her parents established a fund to honor her spirit and reciprocate the compassion and skill of staff who cared for her and the family under difficult circumstances.

The fund priorities are supporting SickKids achieve best practice patient
and family-centred care, patient safety and palliative care.

In four years, the Sasha Bella Fund has:

- directed almost $100,000 to 25 low cost, high impact initiatives as of
November 2010. View a list of initiatives at
- worked with staff at The Labatt Family Heart Centre, Palliative and
Bereavement Care Service, Nursing, Patient Safety, The IPP Team, GI and
Liver, NICU, Child Life, Sickkids Family Council
- participated at hospital conferences, symposiums, workshops, education
sessions, focus groups and family advisory meetings

SickKids is among the top 5 paediatric research hospitals in the world. Be a part of it by supporting The Sasha Bella Fund For Family-Centred Care at
SickKids Foundation!

Safety team recommends end to car seat loan program

Currently The Going Home page explains to parents:

Taking your child home safely

We want to make sure that you get home safely. All children must be fastened into an approved car or booster seat or wear a seatbelt while they are travelling in a car.

Please bring your child’s car seat with you when you come to take your child home.

Parent Tip! Ask your nurse about borrowing a car seat. (emphasis in original)

If a new safety report's recommendations are adopted, this parent tip will disappear along with the car seat loan program. A review lead by NICU found that cleaning, maintaining and educating staff on multiple models was an onerous and inconsistently practised and presented a safety concern. The report recommends existing seats be removed and that families be responsible for installing a car seat by discharge date and securing their child. Staff will confirm a car seat has been arranged as part of the discharge process and the hospital is working on streamlining advance discharge planning to avoid little notice discharges. The policy does not apply to children needing breathing support and transported home by hospital arranged professionals.

Webcams for baby and family bonding and support

I am not aware of webcams used at SickKids to support families, if you know of any please share. Here are posters on webcams in two NICUs. "Implimenting an NICU Webcam" is a DIY guide from Dr Kenneth Herrmann at The Women's Hospital in Indiana.

This second poster was presented at CAPHC 2010 by Dr Bruno Piedboeuf. 

"I Skyped a baby from the NICU to his own baby shower at home today, brought tears to the mom's eyes, it was beautiful."

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.


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
November 21, 2010

Cultural Competence workshops hosted by the New Immigrant Support Network

Following a federal grant in 2009 to support new immigrants,  SickKids setup a New Immigrant Support Network.  The NISN is an important family centered initiative and was highlighted in the 2009-2010 year in review under "improving access for newcomers" to Canada.  The work is currently focused on translating family support guides and cultural competence education workshops for staff.

Parents volunteering on SickKids committees and members of the Family Centred Care Advisory Council are encouraged to consider attending a workshop on Cultural Competence.  Please see the workshop descriptions below provided by Karima Karmali, the NISN Director. Jan/Feb schedules will be forwarded to the FCCAC co-chairs and Karima is hoping to meet and present to the FCCAC  in early 2011.  

Cultural Competence workshops at SickKids Hospital

Session A examines the settlement-related stressors experienced by new immigrant families and the difficulties they face when a child is ill. The social determinants of health are reviewed in this context and a cultural competence framework and cultural assessment tool are presented. Participants will have an opportunity to reflect on how personal values, assumptions and biases can impact on the healthcare provider-family/patient relationship. Learners will gain an understanding of how cultural competence links to patient safety and family-centred care.

Session B will focus on developing skills in collaborative communication and cross cultural communication with a particular focus on working effectively with medical interpreters. Participants will have an opportunity to learn about cultural differences in parenting practices, mental health perspectives, and the expression of pain. A cultural competence lens will be applied to clinical case studies.

Session C will focus clinical cultural competence in situations related to the use of complementary and alternative therapies as well as bereavement and grief. Participants will have an opportunity to apply and enhance cultural assessment and cross cultural communication skills with Standardized Patients.

Cultural Competence for Non-clinicians examines the challenges that new immigrants face as part of the settlement process and the difficulties they encounter in the health care system when they have an ill child. Participants will have an opportunity to reflect on personal values, biases and assumptions and learn about how all hospital staff can play a role in providing culturally competent service.

@sickkids newsletter

I just received my first new SickKids Hospital e-newsletter called @sickkids and I opened the email like it was a present, which it was. I really am happy to see this quarterly roundup - this issue included eight articles which link to website stories and one Did You Know tip. Here is the link to the latest issue and to subscribe to the newsletter you can email or subscribe online. And so we read that:
SickKids has been inducted into the Palladium Balanced Scorecard Hall of Fame for Executing Strategy, one of the preeminent awards in enterprise performance management which has been presented to only a few hospitals in North America. 
SickKids was inducted along with the Federal Bureau of Investigation, Cisco and other companies you may know, and some you wont. We learn from the fact sheet that:
"Most hospitals have a set of key performance indicators focused on clinical measures. SickKids wanted more than a measurement tool; they were looking for a new way of managing. They implemented a comprehensive strategy management approach. SickKids strategy maps and scorecards drive management meetings, with agendas that focus on a rotating set of strategic themes. In three years operating margins jumped 80%, international revenue increased fivefold, medication reconciliation improved from 33% to 78%, and MRI wait times improved 34%. Patient satisfaction and employee engagement are also up. “We are at the leading edge of the curve in health system performance in key areas,” says Mary Jo Haddad, president and CEO. “Our Office of Strategy Management has been instrumental in cascading the Kaplan-Norton approach. We have developed strategy execution as a core competency across the enterprise that has helped us achieve an execution premium.”
Those working on patient and family centered care should mind the scorecard's "simple premise". 
The Hall of Fame award honors organizations that have achieved execution excellence through the use of the Balanced Scorecard (BSC), the world’s preeminent strategy and performance management system. The BSC is based on the simple premise that “what gets measured is what gets done. (emphasis added)”
What are the measures we will use to chart family-centered care improvements?

Patient reported outcomes

Pauline Chen's recent New York Times article titled "Listening to Patients Living With Illness" is a good news story for patient and family centered care which also strikes some odd notes. The article begins by introducing an adult experiencing severe side effects from radiation that he considered to have been understated in earlier discussions; the patient would now definately choose surgery. The problem is that "medical research has long been driven by a single overriding goal — the need to find a cure."
Most published studies are marked by a preponderance of data documenting even minor blips in laboratory values or changes in the size of a spot...

Few studies, however, focus on the patient experience.

The result of all this emphasis on cure has been a nearly embarrassing richness of choice for patients with diabetes, heart disease, H.I.V. infections and even some cancers. The increasingly sophisticated treatment regimens that now make up medicine’s armamentarium have transformed once life-threatening diseases into chronic ones, but in the process have given rise to a group of individuals who are caught in the unenviable position of living with an illness that never quite goes away. No longer forced to make once-in-a-lifetime life-or-death treatment decisions, they instead struggle each day with the side effects of the very treatments that keep them alive.

“To some extent, we’ve conquered death,” said Dr. Albert W. Wu, lead author and a general internist and professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health in Baltimore. “Now we have people living with chronic illnesses, and how they experience quality of life every day has become an important part of how they are doing and whether the treatments are worthwhile.”

To effectively capture the patient perspective, Dr. Wu and his co-authors propose making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection, in some cases requiring the information for reimbursement (emphasis added). For several months now, they have been incorporating data about patient experiences into routine medical practice at Johns Hopkins. Using a dedicated portal called, patients can, at the suggestion of their physicians, fill out surveys about their energy levels, social functioning, mental health, nausea and pain. The information is then handled like more traditional clinical testing; access is reserved for the patients themselves and their doctors.

Currently, the site is open only to patients diagnosed with breast or prostate cancer, but Dr. Wu and his colleagues hope that eventually all doctors will be able to order patient surveys that measure experiences like levels of pain, physical functioning or depression, proactively identifying results that are high or low, then reviewing those results with patients. And despite initial concerns that patients might feel overburdened by the questionnaires, most have been enthusiastic.

“Patients want to have more conversations with their physicians and other providers about these kinds of issues,” Dr. Wu said. “Sometimes it’s difficult to cover all this information during the medical encounter, and these surveys may be another opportunity to do that.”

Couple thoughts. Overall I love the concept: more patient voice in the data stream will lead to research themes identified that can help more patients. However there is an element of compulsion implied by "in some cases requiring the information for reimbursement" that wouldn't occur in Ontario presumably.

There are also different routes to this end: here the method is "doctors will be able to order patient surveys". What about collaborative narrative medicine (written up here and on BLOOM's excellent interview with Dr. Rita Charon) where staff and patients write their stories to learn each others' perspectives.

It also isn't the case that doctors suddenly woke up to the fact that not all patients are cured, or that all patients depend only on doctors for information. These surveys seem like a medical world catching up to and trying to rein a horse that has bolted the clinic. After centuries of medical centered care and little more than a decade of patient and family centered care, new web portals allows patients to share their own information. The wildly successful PatientsLikeMe portal has 60,000 patients logging their health details and communicating on options. The site's tagline is "Learn from the real-world experiences of other patients like you."

U.S doctors also face a compensation problem. Dr. Robert Martensen in a blog entry titled "Talking and Listening to Patients" suggests conversations (the most prolific procedure of all) is poorly compensated.

“I can spend an hour and a half talking with the patient and the patient’s family when the patient learns they have a life threatening diagnosis. We can spend 2 hours together which is perfectly appropriate – it’s the way to go I think to find out what matters to them, relevant medical history, do a physical exam, etc. In New York State, Medicaid pays $18 dollars for that service. If, on the other hand, I said with the patient, you have this problem we think, it looks like….today we are going to be doing a lot of tests, spend 15 minutes with the patient, maybe do a procedure myself – that procedure would be well compensated. But my time to listen, that is not compensated and yet that makes all the difference in what people experience as they are navigating this very daunting set of circumstances.”

Perhaps surveys will be better compensated too. Back here in Ontario we can also work to ensure medical and nursing and allied professional education teaches the art of listening and talking and being accountable to those conversations. Part of that work is educators inviting parents to talk to students.

Patient safety resources: Safe To Ask, Chasing Zero

Do you know how to keep your child safe in hospital?

Read about how to be a patient safety partner with staff at SickKids.

Check out these five very short patient safety videos on Manitoba's SafeToAsk website.

And for those who want more, here is a link to the 53 minute film Chasing Zero by Dennis Quaid which moved audiences at Patient Safety Week this summer. I defy you to watch any amount of this video and not be shocked, inspired and a little teary. The Quaids have done a great job of focusing and ramping up the patient safety crusade and they follow in the footsteps of many other parents who over the years stuck their necks out to advocate for a culture that focuses on eliminating preventable harm and that prioritizes the emotional needs of the family and staff to communicate transparently and honestly above institutional fears of professional liability.

Celebrate "It Was Midnight On The Ocean" and NICU storytelling

This Saturday night, The ParentChild Mother Goose Program® presents Talking You In , a story created and told by Dan Yashinsky with music composed and performed by Brian Katz. This is the story of a family’s journey as they make their way through the neo-natal intensive care unit, hoping that the sound of their voices telling stories, rhymes and songs will connect them with their fragile “starchild” and possibly help with his healing and theirs. It is a performance not to be missed by a very gifted storyteller and musician.

And the night also celebrates the publication of It Was Midnight on the Ocean, The Neonatal Intensive Care Unit Book of Rhymes and Stories inspired by Dan Yashinsky’s experience when his child was in the NICU, edited by Celia Lottridge of The Parent‐Child Mother Goose Program, published by The Hospital For Sick Children to be given to parents with babies in the NICU, and funded by the Neonatology Department and the Sasha Bella Fund for Family Centred Care at SickKids Foundation.

Saturday, October 30, 2010 at 8:00 pm
Doors open at 7:30
Refreshments and Reception to follow

The Hollywood Theatre at The Hospital for Sick Children

Enter at 170 Elizabeth Street and go to the Black Wing

Tickets $25

Donations in addition to this amount will receive a tax receipt. All money raised will go to support The ParentChild Mother Goose Program® which also helps parents connect with their babies and young children through rhyme and story.

To purchase tickets, phone 416 588 5234 x10, email or order online.

Comments on "A Shattered Trust" - "Actions speak louder than words."

BLOOM blog recently published an anonymous article called "A Shattered Trust" by the mom of a young child who is on their 4rth care manager. Please read and share with colleagues. How do professionals remain accountable to all families? Who will go to bat for the family that has been struck by lightning repeatedly? Who ultimately repairs the breach in a parent's belief that some staff do not care?

For almost a year I’ve made over 30 calls and worked with six hospital departments to find a way to better handle my daughter’s g-tube changes. My daughter is petrified of the procedure. Her hips are strapped down but I have to hold her arms while she screams, twists her upper body and turns bright red. The first time it happened I had flashbacks to when I had to restrain her for procedures in the NICU. So I've spent months trying to come up with an alternative. I’ve asked for sedation, but been given conflicting information about whether it's safe. I've asked for a child-life specialist to provide support. I've sat outside the procedure room, listening to my daughter (with my husband) scream inside. I've asked if the ‘comfort kit’ is in the room with them, only to be told it’s sitting behind me in the waiting room. I’ve asked if I can take the kit to the room and been told "No." We’ve left in a g-tube that should be changed every six months for 15 months because we can't find a solution to managing our daughter’s pain and anxiety....I hesitate to ask for help because I’ve become more disillusioned with each failure. Our professionals don't work together to solve problems and give conflicting information. And because actions speak louder than words, increasingly I’m convinced that the bigger problem is that they don't care.

I have heard many stories of care successes and challenges over four years and some of the details are mind-boggling. We can spin off easy suggestions. Shop around for a better, more understanding pediatrician, and get the foundation of care off to a good start. Go to the new coordinated complex care teams designed to help exactly these families. Go to patient reps. Speak to parents who volunteer in the hospital for ideas. We can in theory enlist any number of new supports. I would suspect this family has tried some of these routes as well if they logged 30 contacts with one unit about one proceedure. Yet for many families, care is a minefield, and this seems to particularly occur when the syndrome is not well understood or straddles several disciplines. When a parent feels they are the only true advocate for a child and are scared to bring that complex child into the institution because nothing seems to go right we all need to look long and hard at the miss and then act.

Family Centered roundup - Nursing education, Palliative Research, FCCAC, Liver, Bio-bank, Baby Book for little angels, CCCU, CFAN

Mid September I had the privilege of speaking to about 50 nurses (including just 2 male nurses), most new to SickKids, returning for extra education after 3 months of practice. I introduced Sasha, offered highlights of our nursing experience and shared a tip sheet of suggestions. We generated a good discussion particularly on ways that staff and families can work together on patient safety (e.g involve parents in medicine reconciliation and empower parents to speak up if they have any concerns). The nurse who organized the sessions remembered Sasha from 4D.

The 2010 TRAC-PG Pediatric Palliative Care Research Symposium, titled Listening to the voices of dying children: raising awareness and emerging research, was held September 29 and featured renowned anthropologist Myra Bluebond-Langner as keynote. I promise a report shortly when we get the links to the videos. Posters are being uploaded at Trac-PG.

The Family Centred Care Advisory Council engaged in a facilitated brainstorm and values clarification exercise in June and have established Education and Communication sub-committees to focus initiatives. The committee is also looking for new family and staff participants and if you are interested in working with other families and staff to help improve the child and family's experience, please read more about FCC-AC. There will be two family positions on the New Immigrant Support Network's "Champions of Cultural Competence". SickKids has also received a generous donation to the Family Resource Center and is exploring a new space to combine the reading room, About Kids Health, family centered care and research in one area for families. I also volunteered to review the Bereavement Committee final draft report and got that this week; it is an important call to action to develop a more consistent and integrated practice and to increase resources for bereaved family support. We also have the SickKids Family Education Day fast approaching in February, more on that soon.

A first Liver Program Family Education Day is being organized by Dr Binita Kamath and clinical nurse specialist Constance O'Connor to be held March 2011. Biliary Atresia and Alagille Syndrome have been picked as the foci and Binita and Connie invited The Sasha Bella Fund to participate. We are excited to be working with the Liver Program for the first time to help other children with Sasha's primary diagnosis, Alagille Syndrome. Binita and Connie are also interested in a family committee and helping with online supports for patients and their families.

Parent voice at the Labatt Family Heart Centre Bio-Bank conference was provided by Laura Celsie. Laura celebrated her nephew Wyatt, recounted his complex and very difficult life including his 11 month CCCU intensive care journey and offered feedback to staff about helpful and stressful conduct. Watch her presentation on Youtube especially the final third video for Laura's list of 11 things that doctors should know, starting with "Please don't ask me to leave my child's side" and "I need to be a part of my child's care team". Kudos to LFHC staff for responding to this difficult story with a standing ovation.

And a beautiful palliative story I have been meaning to share for many months. Four years after the death of her first born Tyler, Michelle Murray has produced a baby book for still born and palliative babies called I Will Hold You In My Heart Forever: A baby book for little angels. It is a heart-warming story. She received permission from Robert Munsch to reprint some paragraphs from "I Will Love You Forever". Thanks to a request from NICU palliative care nurse Lori Ives-Baine, the book is stocked at the 5-55 Shop at Sickkids. The book has generated great buzz. Comments from the over 1700 fans on the Facebook group shows the book is a rare resource to give a friend whose baby was still-born or died very young and it is of particular interest to midwives. The baby angel book was a labor of love and a family affair; Michelle took a loan to make the book a reality, her sister-in-law Stephanie of Trapdoor Design designed the beautifully illustrated binder and insert pages, her dad serves as bookkeeper and shipper and her brother helps with marketing. Based on the very positive feedback, Michelle is adding sections for older palliative children. You can buy the book on the Forever Heart website or in the 5Fifty5 gift shop at SickKids. There is also a video presentation of the book and a television news interview.

The Cardiac Critical Care Unit "Vital Smarts" communication training continued last week to help staff support parents, resolve issues and be accountable to families and other staff. After the training of a handful of staff earlier in the year, training was rolled out to another 50 staff. Dr Steven Schwartz confirmed there is no family council or parents currently on committees but hopes the ground work laid by this communication training will lead to new forms of staff-parent collaboration.

On October 17, the annual Canadian Family Advisory Network (CFAN) daylong workshop, that traditionally starts the annual conference of the Canadian Association of Pediatric Health Centres (CAPHC), was held in Winnipeg. I was asked to present and spoke about three related topics: a celebration of Sasha that linked her highs and lows to the hospital priorities for her family fund; initiatives we have undertaken and how they have done; and new technologies starting with this blog that assist family advisory in an age of potential mass collaboration. As families need a secure, accessible platform to manage their child's health care, we also need a platform to work with staff and other families on family centered initiatives. There were many takeaways and I am working with three other FCCAC members on a report to share. It was clear that the growth of family advisory has been challenging across the board and also that family and patient centered care advocacy and delivery is growing beyond councils and committees toward networks of linked teams and groups that need to be integrated into hospital leadership, learning and practice in a very focused way. This was my first health care conference, first keynote and first time meeting other family members outside SickKids who work within pediatric hospitals so naturally it was an amazing learning and networking experience and I promise a fuller report. It was really fantastic to spend some quality time with Kariym, Jodi and Venetia from FCCAC and Janis from NICU FCC.

SickKids posters - Patient Safety, Cleft Palate, Cultural Competence, A Dialogue with Leaders

One way to get news about the huge number of initiatives at SickKids is through posters on the walls. I am going to add SickKids posters as a tag in the label cloud and continue posting these as I see them.

How do YOU report a safety concern?
Staff can log a patient safety report via a link on the home page of the staff log-in. Staff are encouraged to submit patient safety reports including their name (they also have the option of posting anonymously) so that reports can be followed up in a blame-free manner to best address the safety issue.  

Support for parents of children with cleft palate

I love the specific and useful information this one poster included. While there are surgical fixes for most cleft palates, feeding support before and during the fix is of great concern.

Enhance your Cultural Competence
Publicity for the new Immigrant Support Network that links cultural competency to both family centered care and patient safety.

Your hospital, your voice
An open forum with SickKids President and CEO Mary Jo Haddad and the Executive Team September 28, 2010 from 1-2pm.

Pediatric Capacity and Consent: perspectives from SickKids and Holland Bloorview

Pediatric Capacity and Consent:  What’s legal and what’s right?

Adam Rapoport, MD, FRCPC, MHSc, Associate Staff, Division of Pediatric Medicine, The Hospital for Sick Children and Pediatric Palliative Care Consultant, Max and Beatrice Wolfe Children’s Centre, Temmy Latner Centre for Palliative Care, Mount Sinai Hospital

with additional commentary by:

Maria McDonald, BComm, LLB, MHSc, Bioethicist, Holland Bloorview Kids Rehab

22 September 2010, 3:10 – 4:30 pm

NOTE NEW ADDRESS: Joint Centre for Bioethics,
155 College St., 7th Floor
Turn right off elevator and enter through Suite 754

Abstract:  Infants and young children lack the developmental capacity to make medical decisions owing to an inability to fully appreciate the consequences of their choices.  As such, parents or other recognized legal guardians are charged with this responsibility.  Yet, this widely accepted arrangement generally becomes less relevant for the older child or adolescent.   How should clinicians and parents approach the developing autonomy of these pediatric patients?  Is it possible for a child’s wish to override the decisions of his/her parents?  What about over matters of “life and death”?  This presentation will explore these and other challenges of providing medical care to mature minors. 

Objectives:  Explore the ethical issues involved in pediatric capacity and consent; review the legal positions; provide pathways for assistance for future ethical/legal issues

The University of Toronto Joint Centre for Bioethics Seminar Series is an accredited continuing education activity under CFPC and RCPSC programs

SickKids Craniofacial Program participate in the magic of theatre with Lorraine Kimsa Theatre for Young People

Kid's Stuff 
A Group for Children with Facial Differences

Come explore the magic of theatre

Take part in theatre games designed to make you fall over laughing while learning the tricks of the trade. Create your own story in a group where everyone will be the playwright, director, and actor at the same time. 

Watch your story come to life on a real stage.
SATURDAY September 25, 2010
4:30 p.m to 7:00 p.m
A pizza dinner will be provided. 

The group will be held at the
Lorraine Kimsa Theatre for Young People
165 Front Street

Please contact Farah Sheikh (416 813 6795)
or Kim Tiemens (416 813 5887) to register for the group.
Registration fee is $5 and limited to the first 20 participants. 

Sponsored by the Cleft Lip and Palate and Craniofacial Programs at

A stranger takes you away and you wake up in pain

The recent CAPHC/CFAN report on parental presence during induction and recovery is a moving read that I present in its entirety to best show the concision and focus of the writing, the emotional richness of the supporting material and the overall groundedness of the report in the patient and family experience. Thanks to the authors of the report, and the parents, youth and staff who shared their experiences, for a powerful example of family-centered paediatric health care research and the relevance and strong development of family advisory in Canada.  

I was present for only one of Sasha's later applications of anesthetic and deeply appreciated this involvement although there was no prior prep or discussion. On earlier occasions when we were not invited, I found the hand over of Sasha to a nurse very disconcerting, like I was deserting her. An anesthesiologist at SickKids, in describing why he wanted parental presence at induction characterized the scene as follows: “A stranger picks you up and takes you away and puts a mask over your face and you wake up in pain." The doctor also felt in cases of separated parents, where the child wanted both parents involved, that an exception to the one parent rule be strongly considered.

Report regarding Parent and Caregiver Presence at Surgical Induction and Recovery - Child and Family in the Healthcare System Working Group

Executive Summary
Surveys of parents, youth, and hospitals and a review of relevant literature make plain that parental presence at surgical induction and recovery remains a contested area. Parents overwhelmingly want to be present at both because they think their presence 1) makes the surgical experience less frightening and safer for their children, 2) signals to them and makes them feel that they are truly “part of the team,” and 3) makes a positive difference over time in the life of their family. Most teenagers report wanting their parents to be present, especially when they were younger, but also wanting to have a choice about parental presence now that they are older. Practices and perspectives among hospitals and often within the same hospital vary considerably, in part, they indicate, because of different views about the evidence of any benefit of parental presence, differences confirmed and illuminated by a literature review.

A more thorough and systematic sharing of information among hospitals, a greater attention to the experiences of patients and families, a broader view of what constitutes effective preparation, and a more comprehensive and imaginative approach to available evidence would help transform a contested space into common ground.

While tremendous progress has been made in the supportive environments for children and families and their inclusion as part of the health care team, there continue to be concerns about significant variability across institutions and examples of poor practices that have had significant impacts on health outcomes. The Coalition has agreed that developing a common vision of how this interaction should occur and identifying / sharing best practices is an important undertaking, especially given the opportunity to have the Canadian Family Advisory Network (CFAN) centrally engaged in this initiative.

The Child & Family in the Health Care System Working Group was established in January 2009 and is comprised of representatives from CFAN, CAPHC, The Canadian Association of Child Life Leaders (CACLL), and several youth councils across Canada (see Appendix 1 for list). Through a process of identifying priority issues, reviewing the literature, collecting data, anecdotal information and stories, this group is working to determine best practices and develop recommendations to be delivered to hospitals, rehabilitation centres, and government.

Parental presence at surgical induction (PPI) and parental presence at surgical recovery (PPR) were selected as the first of several priority issues to address because these were the most frequently mentioned and best defined of all the topics identified by families at the 2008 CFAN workshop where the Coalition's Child and Family in the Healthcare System project was launched. As well, the working group recognized this closely linked pair of issues as a perennial area of concern and sometimes conflict, frequently associated with confusion and frustration by parents who often report encountering very different practices, sometimes within the same hospital.

Working on this topic, whether in analyzing survey responses or reviewing relevant literature, illuminated gaps between different (not necessarily opposing) understandings of what is meant by "evidence" and between different views of what kind of evidence is most important or relevant. It also highlighted areas that may be under-investigated and amenable to new ways of approaching or conducting research. In short, what was learned in this initial phase of the project will be very helpful for the work ahead.

The working group created distinct surveys for parents, youth, and hospitals, piloted each, and then distributed them widely between October 2009 and January 2010. The parent survey (Appendix 2) was distributed through parent and family advisory councils across the country. One hundred twenty one parents responded, often in considerable detail. All had a child who had undergone at least one surgery, and nearly half had children who had undergone at least four surgeries. Most of the surgical experiences had occurred within the last few years. The youth survey (Appendix 3) was sent to youth and children's councils attached to paediatric hospitals. Thirty-two youth, 29 of whom were teenagers, responded. The hospital survey (Appendix 4) was sent to 32 hospitals, 16 of which responded.

Various working group members also read reports of much relevant recent research, especially about work done in Canada, and gathered information (additional to what was offered in its survey response) from The Children's Hospital of Eastern Ontario (CHEO) which recently completed a long PPI pilot project. Over the course of eight months working group members analyzed and discussed the survey responses and the results of the informal literature review. More recently they have reviewed drafts of this report and supported its recommendations.


The Parent Survey
Nearly all (97.3%) of the parents said it was either very important or important for them to be present at induction; approximately a third (33.1%), however, said they had never been present. Almost as many (93.6%) said it was very important or important for them to be in the recovery room when their child awoke, but a quarter (25.7%) said they had never been allowed in. Once parents have been “in,” they almost always want to return. At CHEO 93,9% (31 of 33) of the parents surveyed as part of a pilot project said after their experience of being present at induction that they would like to be present at subsequent inductions.

Striking in many of the responses were the accounts of how parents felt they had to "battle," or "fight hard" to be present at induction or recovery, often after they had already been present on a previous occasion. One parent struck a note common to many: “We struggle repeatedly to make the staff understand that we are capable and confident and will not impede their work and that my son recovers with less struggle and instability when there is a parent present as he regains consciousness.” Here and elsewhere the tone is more indicative of a plea than a demand.

Many mentioned that being denied access made them question whether they were really, as they were often told, “part of the team.” On the other hand, many emphasized how much they felt their role on their child’s team was ratified and strengthened when their presence during induction or at recovery was supported and treated as “normal, like [they] belonged there.” Several mentioned wonderful experiences when staff, usually child life specialists and sometimes nurses, prepared them not only for gowning and other procedures to reduce the possibility of infection but for supporting their child in a strange environment. As one parent commented, “Preparation is key. Not knowing that your child will become quite heavy in your arms as they settle to sleep can be un-nerving if you’re not aware.” Another praised a child life specialist “who gave us language with which to speak about the surgery with our three-year old.”

The great majority of parents thought their presence made—or would have made—their children feel less anxious and afraid, safer and less alone. Many also noted various ways their presence was a particular help to staff, especially in increasing the safety of their children. One noted: “Our daughter was trached for many years and we had a good sense of her suctioning needs. Over suctioning caused serious problems for her. On a couple of occasions when we came into the recovery room, nurses were over suctioning and our daughter was very upset. We were able to calm her, get her to cough productively and avoid the need for potentially damaging aggressive suctioning to clear her airway.”

Parents of children with developmental and other chronic conditions supplied example upon example of how crucial they felt their presence was in helping both their children and the staff understand one another. Here’s one parent’s account: “My son (J) is blind and very developmentally delayed. He gets very uptight when in new places. When he went into the OR to have his shunt replaced, I was able to be with him. I was able to translate to the doctors what he was trying to communicate. J loves music so I was able to sing to him his favourite song, Zip a dee doo dah, until he fell asleep fully relaxed. The problem was the staff could not get the song out of their heads all though the surgery. They were all singing in the OR and continued to sing it all day ... But J was OK.”

Finally, the vividness of most of the parents’ accounts implicitly testified to the lasting effect of those brief but intense experiences in or around the operating room. Sometimes the experience was paradoxically wonderful, as it was for a mother who recalled carrying her already sedated child into the operating suite, laying him on the table, and continuing to hold him while the anaesthesiologist inserted the needle in his hand before her child drifted off to sleep: “Very peaceful. This image sustained me while we went through the roller coaster ride of the ICU and beyond until he was fully recovered.” Another mother, in sharp contrast, reflects as follows on her daughter’s death: “The one thing that still haunts me is turning her over to the nurse on the day of her surgery. First of all, I had expected to be with her until she slept as this was repeatedly told to us. We were prepped for this the day before and we were looking forward to this as it gave us a sense of comfort, especially knowing our child. When we were told to hand her over as opposed to taking her ourselves, I was surprised and dismayed and my first instinct was to refuse. However the pressure of knowing that she needed this procedure made the decision, to not protest, for me.”

The Youth Survey
The 32 youth who responded to the survey designed for them—first piloted with a few youth and then amended in response to their suggestions—did so with their colleagues at youth council meetings. All but three (two of whom were 11-years old and one 12-years old) were teenagers.

Just over half said they wanted a parent present with them at induction and in recovery because it made them—or would have made them--feel safer, more comfortable and less alone. One said “If my parents had of been in the room, I think that I would have felt a lot more secure and confident in what was about to happen. I found that being alone made it frightening (more so when I was eight).”

This sense that parental presence at induction and recovery was more important when they were younger was quite common. As one youth remarked, “When I was younger, it would have made me more comfortable with surgery; however, now I am used to it. I do not prefer anyone with me now because I think I would become emotional.” One even said he would prefer not to have a parent in the recovery room with him because he was concerned how seeing him in a post-operative state would make his parents feel.

Several of the teenagers expressed a preference to be asked whether they wanted a parent to be present during induction and in recovery and to have their choices respected.

The Hospital Survey
The 16 hospitals that responded to the survey varied considerably in their practices, in their reasons for providing or not providing PPI and/or PPR, and in their dispositions toward the issue.
While one hospital said it “always” gives parents the option to be present at induction, five said they “usually” do, eight said they “occasionally” do, and two (both community hospitals) said they “never” do. Seven responded to the question of why they at least sometimes provided such opportunities. Some cited the desire to be more family-centred while others said they did so to reduce patient or parent anxiety or to increase patient and family satisfaction. Very similar rates and reasons were given in response to questions about PPR.
The two hospitals that do not allow PPI or PPR both identified “research doesn’t show evidence of benefits or positive outcomes” as a reason and noted resistance from some staff, something that was also noted by some of the hospitals that do allow PPI and PPR at least occasionally. A few of the community hospitals expressed a wish for “more consensus from across Canada,” more evidence, more guidelines, etc.
When asked if they had ever surveyed parents or families about PPI or PPR, five of the 16 said they had done so formally and the same number said they had done so informally—all reporting that parents were supportive, sometimes “overwhelmingly” so, of the practice. Six hospitals said they had either never surveyed families or did not know if they had.

The hospital with the most detailed answers reported the most success. It cited defining PPI as “a quality improvement initiative,” inviting both “champions” and “naysayers” to participate on a working group to investigate the issue and design a pilot project, conducting an extensive literature search and a “peer best practice review,” devising an education program for departments, staff, and families, and carefully evaluating and responding to the results of an extended pilot project as keys to what both the hospital and families regard—thus far—as a highly successful initiative.

Research and Evidence
The working group did not do an extensive literature search about PPI or PPR, but it was clear that there has indeed been a good deal of relevant research in the past twenty years or more. A consensus, based on the results of measuring heart rates, blood pressure and visual and behavioural indications of anxiety, seems to have developed that parental presence at induction does not, in fact, reduce anxiety in either the parent or the child. Sometimes, when, for instance, the parent is visibly distressed, it even increases anxiety, and sometimes, when, for instance the parent is quite calm, it reduces it. Overall, there seems to be general agreement that PPI and PPR are usually helpful when the child has a mental health or developmental condition or is undergoing repeated surgeries/procedures. The hospital survey responses suggest, though, that PPI and PPR are unavailable in some hospitals even in these instances.

Many of the studies seem entirely focused on the particular event—what happened in and around the OR at a given time on a given day—but there are studies that look at the surgical experience within a wider frame. One recent study (Kain ZN et al. 2007) looked at the effects of “a family-oriented behavioural preparation program” and concluded that it reduced “perioperative anxiety and postoperative analgesic requirements” and improved “postoperative outcomes in children and their parents.” And an even more recent study conducted in Alberta (Lardner, Dick, and Crawford 2010) found that while “parental presence in the PACU did not affect crying in the PACU ... 2 weeks postoperatively children who had a parent in the PACU had less negative behaviour change.”

Perhaps assessing behaviour, especially in a family’s home, is harder than measuring pulse rates in an OR. The former, however, is probably the more important measure of parental presence—for the child and the parents. It certainly recognizes the reality that the surgical experience is not a discreet event in the life of a child and family but one that lives on and has consequences within the intertwined lives of everyone in the family.

One of the hospitals commented in its response to the survey that it is important to remember that the child and not the parent is the patient and the patient must remain the focus of attention. A careful reading of all 121 of the parent responses, however, will not uncover a single request or suggestion that hospitals focus more attention on parents. Almost to a person however, the parents do assert, sometimes explicitly, an important connection, in some cases an intimate one, between their child’s well-being and their own. “Subjective parent self-reports” of their children’s surgical experiences and of their own involvement—or lack of involvement—in those experiences may not tell the whole story, but to label them as “biased representations” risks obscuring their very real value. The same applies, of course, to patients’ “self-reports.” They may complicate the research picture, but they offer essential evidence.


[Clarification from a report author: "The Coalition Steering Committee has yet to approve of the recommendations because some feel they need to check first with the organizations they represent, because some want to have an implementation plan in place before they vote to approve the recommendations  and because one of the recommendations--about youth 13 and over--needs to aligned with existing laws, policies, and practices related to consent. The Steering Committee encouraged us to share what we learned  from our surveys and the informal literature review." Frank Gavin]

1. That each hospital where children and youth undergo surgery consider the benefits of parental presence identified in this report when deciding whether to allow or expand parental presence at induction and in the recovery room and actively seek to learn about the experiences of other hospitals that have established programs that facilitate parental presence.
2. That CAPHC make information about member hospitals’ policies, practices, and evaluations related to parental presence at induction and in recovery available on its website.
3. That each hospital where children undergo surgery inform parents when elective surgeries are scheduled whether a parent can be present at induction and recovery, what preparation the hospital offers and/or requires, and, if parental presence is sometimes offered and sometimes not, why parental presence at induction and recovery is not always possible.
4. That in hospitals that allow parents the choice to be present at induction those hospitals offer, and parents be required to participate in, a preparation session, program, process, or meeting that not only informs them about what they need to know and do (e.g. wear gowns, wash with special soap, etc) but empowers them in their role of supporting their children during their surgical experience and afterwards.
5. That youth 13-years old and older be offered the choice to decide at what point, if any, during the surgery experience they might like to have a parent present to support them.
6. That researchers investigating topics related to the experience of children, youth, and families in the healthcare system involve children, youth, and families in all phases of their research, including the formulation of research questions and the evaluation, dissemination, and application of their research findings.

Members of the Working Group

Frank Gavin (Past Chair, CFAN)
Sue Robins (Chair, CFAN)

Melissa Clulow (CCYHC Coordinator)
Pat Elliott-Miller (Vice-President, Patient Services and Chief Nursing Executive, CHEO)
Diane Hart (Supervisor, Child Life Department, BC Children’s Hospital)
Lisa Hawthornthwaite (Family-Centred Care Specialist, Children’s Hospital, LHSC and Vice-Chair, CFAN)
Tamara Krbavac (Child Life Specialist, McMaster Children’s Hospital)
Cathy Laycock (Parent, Lloydminster, Alberta)
Elaine Orrbine (CEO, CAPHC)

Michelle Wilband (Coordinator, Child Life Department, Children’s Hospital, LHSC)
Sherri Wuetherick (Steering Committee, CFAN)

Crystal Chin (Youth Advisory Council, Holland Bloorview Kids Rehab)
Hannah Badcock (Youth Advisory Council, Children’s Hospital, LHSC)
Amber Pelzer, deceased (Youth Advisory Council, McMaster Children’s)
Jacqueline Wigle (Youth Advisory Council, IWK)

Life in the City with Mat Krepicz - Trends in Diversity, Housing, Aging & Living

The Toronto Central Palliative Care Network hosts Mat Krepicz, Toronto social policy research analyst, on citywide demographic changes in "Life in the City: Trends in Diversity, Housing, Aging & Living"

In partnership with the City of Toronto, the Toronto Central Palliative Care Network is pleased to present an intimate session where Mr. Mat Krepicz (Senior Analyst, Department of Social Policy & Research, City of Toronto) will provide us with an introduction to the demographics of the City of Toronto with an emphasis on recent trends and possible future developments. These include changes in ethnic composition, language mix, aging, income distribution, and crime. A brief overview of monitoring systems such as Neighbourhood Wellbing Indices will also be provided.

This session is open to the entire network, their staff, board members, partners, and friends.We welcome and encourage all to come!

Sunnybrook NICU seeks parent support coordinator

As covered in Healthzone's "Hospital want-ad targets parents" and Marketwire's "Calling All Moms and Dads: Sunnybrook is searching for the perfect parent to join its Neonatal Intensive Care Team", Sunnybrook's NICU at Women's College recently posted Canada's first job posting for a paid, temporary, part-time Neonatal Intensive Care Unit parent coordinator.

The job posting at Sunnybrook Health Science Centre reads:

We have a temporary part time opportunity for a Parent Coordinator to work in the Neonatal Intensive Care Unit at our Women's College site in downtown Toronto.  Reporting to the Patient Care Manager of the NICU, the Parent Coordinator is a liaison between staff and parents whose baby(s) are currently in the Sunnybrook Neonatal Intensive Care Unit. The Parent Coordinator works to ensure that parents are active members of the health care team. In order to fulfill this role the Parent Coordinator must be the parent of a graduate from the NICU at Sunnybrook. The role includes (but is not limited to) the following:
  • Acts as a liaison between NICU families and all members of the health care team
  • Develops and coordinates support to families in the NICU and Neonatal Fellow Clinic
  • Is the co-chair of the Sunnybrook NICU Family Advisory Council
  • Provides individualized support to current NICU families as desired. This is an optional partnership and families may chose not to be involved with the Parent Coordinator
  • Provides information to families about community resources that are available and updates this information as needed
  • Participates in the design, implementation and evaluation of services, programs or systems that enhance services to infants and families
  • Participates in improving organizational performance through recommending areas or approaches for improvement activities
  • Provides education for families and staff based on input from families using strategies that facilitate learning and open communication
  • Provides education to all new staff, students and trainees on principles of Patient & Family Centred Care
  • Participates in NICU committees (Unit Coordinating Team, Neonatal Intensive Care Quality Improvement Project, Quality Assurance, Transition committee, others as the PCM determines to be relevant)
Skills and Qualifications:
  • Applicant must be a parent who have had a baby in the Sunnybrook Neonatal Intensive Care Unit who was born at < 32 weeks gestation &/or any parent who had a baby in the Sunnybrook NICU for > 1 month and who's graduate child is now older than 1 year.
  • Must have completed Secondary School education
  • Demonstrated computer skills in MS Office and Outlook
  • Excellent oral and written communication skills

Today, most hospitals in the United States have at least one paid family role. Kudos to Sunnybrook NICU!

Remembrance, celebration, siblings and work around Sasha's month

June 6 is Sasha's birthday and June 20 is the day of her death at age 2. This anniversary was particularly poignant for me because we have started talking about Sasha with her sisters. I was surprised that Eve, aged 2, was the first to ask about Sasha. Sitting on my lap, watching family videos, she pointed to a picture of Sasha and asked me to play it. Afterward she asked, 'Where is Sasha?' Pleasantly startled I took a few seconds to think about my reply and then I touched my heart and said 'Sasha is in our hearts, she is everywhere when we think of her.' At the moment it was the best I could do. She seemed ok with the answer and jumped off my lap and went to play with toys. A few months later in May, Mia, almost 4, asked why we were going to the cemetery. I told her that Sasha is buried at the cemetery and we were going to visit her. She asked why Sasha is in the cemetery. I explained not for the first time that Sasha had died because she was born with a body that did not work well and we tried to help her but her body stopped working. I remembered reading that it is not good to say she was sick, so they are not afraid when they are sick. The other big event in June is Mia's birthday one day after Sasha's death which was a very fun time at an indoor playground. We are still working out how to celebrate Sasha with our kids so young - hopefully next year we will feel bold enough to light a cupcake candle with Mia and Eve for Sasha on her birthday. As you all know, work at SickKids is a way to give back to amazing staff and families and to honor Sasha's memory. The last few months have been very busy; here are a few highlights.

Palliative physician Christine Newman receives Robert Salter Humanitarian Award

Congratulations to SickKids palliative care physician Dr Christine Newman on receiving the Robert Salter Humanitarian Award from SickKids Foundation, among the most prestigious family-centred awards at Hospital for Sick Children. Chris, along with Maria Rugg, Laura Beaune and Maru Barrera, in addition to all their care practise, have been constant guides and mentors to parents wishing to assist the palliative and bereavement service at SickKids. The humanitarian award nomination letter for Chris by staff and families is an inspiring and emotional read about Chris's work with families and other staff. When Catherine Fenton describes the home care of her daughter Carmen she sums up in one sentence the essential power and challenge of the palliative intervention: "Chris sees the dignity and beauty in dying and death, and coaxes people to stretch and meet her there.” This award recognizes the excellence of Dr Christine Newman and honors SickKids palliative care service widely.

Bereavement Committee retreat

The work of SickKids Bereavement Committee was shared at a June 29 retreat. The Bereavement committee has since the summer of 2009 reviewed all procedures relating to death at SickKids Hospital. The need, as identified by the committee, is for a hospital wide culture of support for healthy grieving, palliation and end-of-life care. Thanks to parents Mitch Blum and Catherine Fenton for working with a dozen or so staff over almost a year to review palliative and bereavement policy and procedures, hospital education, resource development, clinical practice and research. Margaret Keatings hopes to publish recommendations of the Bereavement Committee by September 2010.

NICU family care committee works on communication and parent to parent support

Three subcommittees have started on the NICU Family Care Committee to explore parent peer support, technologies and use of walls and space. The technology group met over a conference call and will work on proposals to setup webcams on isoletes so parents can see their children when they are not in the NICU and offering email communication with some doctors (happens informally now) to understand the type of questions asked and the benefit of this additional communication tool. We are also building a website to share projects, resources and generally expand the visibility of the advisory group. The parent peer support group also had their first meeting to share examples of successful programs, principally in other Canadian NICU settings.

2010 Patient Safety Symposium: Furthering Parent Involvement in Patient Safety

June 10th I spoke with parents Denise Clayton and Jane Ford at the 6th Annual Patient Safety Symposium about expanding parent participation in patient safety. I was asked to join the Partners in Patient Safety Committee which has an outstanding record of joint staff and parent work on safety initiatives. One of my particular interests is the Required Organizational Practise of Accreditation Canada related to "Client and Family Role In Safety" (see page 9 of the ROP document), specifically, that "Staff uses written and verbal approaches to inform and educate clients about their role in promoting safety".

CFAN Winnipeg workshop 2010

I will attend the annual Canadian Family Advisory Network Workshop on October 17 in Winnipeg and am very honored that CFAN member Ruth Hartanto invited me to speak during "Sydney's Talk", named after her daughter Sydney. I earlier linked to Ruth's beautiful sharing of Sydney's life and death in the Globe and Mail in April. This year's CFAN workshop theme is "Branding and Blogs: the power of using media tools in family centred care", which is most topical. This workshop will be an incredible opportunity to meet and share ideas with veteran parents working with staff in hospitals across Canada.

2010 Sasha Bella Fund awards: CCCU nurse Elena Nikolsky and social worker Ruta Niedra

In April, two recipients were selected by peers and myself for Sasha Bella Fund awards for exemplary family-centered practice in the Labatt Family Heart Centre. On May 11 at the yearly Nursing Excellence Awards, CCCU nurse Elena Nikolsky received the Sasha Bella Award for Excellence in Family Centered Care for extending her clinical nursing practice to a Registered Nurses Association of Ontario research fellowship focused on parent supports in the ICU, specifically nurse sensitivity to the diversity of family coping styles. On June 10, as part of the Dr. Beverley Antle Legacy of Hope Award Ceremony, social worker Ruta Niedra was chosen to receive the first Sasha Bella Fund award given to an allied professional for Excellence in Family Centered Interprofessional Care. Ruta has served families and supported and mentored staff at SickKids for almost 25 years in a very special way, as attested to by an unprecedented nine letters of supports (see extracts). Currently on Cardiac Transplant, Ruta was instrumental in setting up the Labatt Family Heart Centre weekly parent coffee hour and a first LFHC Family Education Day held in 2009.

Neonatology 2.0, Medicine Meets Myspace - Dr Niraj Mistry

Dr Niraj Mistry is a third year Neonatology resident at SickKids Hospital who has over the last two years explored doctor and patient use of social media and recently presented on how social media can support families in their bonding with baby, team communication with families and family to family sharing. Neonatology 2.0: medicine meets MySpace is the most detailed review of web 2.0 impacts on families in hospital that I have seen. Beside showing evidence for family supports, the many slides demystifies technologies like Facebook for senior medical staff who may not use these technologies.

After recently presenting this review at the NICU Family Care Committee, Dr Nistry sat in on our meeting and we were excited and surprised by his imprompto decision to join the staff-family group to help impliment new e-communication strategies with families. I have quoted liberally from this presentation below as the full PDF is over 15 Mb and 84 slides. Dr Mistry's contact information is placed at the end of this entry should you wish to get the presentation.

Neonatology 2.0 begins with a literature review to answer 2 questions:

(a) What are the needs of parents who have infants in the NICU?
(b) What behaviors support parents with an infant in the NICU?

Six Primary Needs of Parents in the NICU:

(a) Accurate information and inclusion in the infant’s care and decision making
(b) Vigilant watching-over and protecting the infant
(c) Contact with the infant
(d) Being positively perceived by the nursery staff
(e) Individualized care
(f) Reassurance and a therapeutic relationship with the nursing staff

Four Supportive Behaviours To Meet These Needs:

(a) Emotional Support
(b) Parent Empowerment
(c) A welcoming environment with supportive unit policies
(d) Parent education with an opportunity to practice new skills through guided participation

Information & Communication Needs

• Most important needs are information and communication, which stem from a need to get control over the situation, inducing an active search for information
• Information seeking is a way of engaging in the care of their infant
• Knowledge supports the adaptation and coping process
• However, many parents hope to meet their information needs from the HCPs, many studies conclude that their needs are not met (eg. high time demands)
• Parents use other information sources to meet their information needs
A literature review to assess how NICU parent use of information sources changed depending on their infants illness trajectory looked at 78 articles from 1990 to March 2008 to conclude:

Learning Curve
• Changing pattern in information use
• Learn the specific needs and responses of their child
• Complicated medical terminology becomes more ‘‘common’’ language, even for parents without post-school formal education
• Empowering parents to become more active participants

Adapted Information Strategies
• Having mastered the medical language, receive more extensive
explanations from the NICU staff
• Develop strategies and learn along the hospitalization time how to
best obtain information eg. being present during rounds and identify
who to approach for the best information

Communication styles
• One-way -> Two-way
• Asymmetrical -> Symmetrical

The placing of a webcam for viewing the new borne is seen as successful in promoting maternal bonding where parents are separated:

• Improves postpartum recuperation
• Decreases maternal anxiety/depression
• Improved reassurance
• Increased opportunities for family discussion
• Created a sense of involvement
• Fostered family tranquility

Webcams such as the Angel Eye webcam featured help anxious parents separated from their newborns and help reduce abuse:

• Premature and sick babies face a higher risk for child
abuse and pediatric depressive disorders vs. healthy
• Abuse is thought to stem from the failure to establish a
maternal-infant bond in the sensitive postpartum period
• Webcams allows remote viewing of NICU, enabling a
parent to be “virtually” present, which can reduce
parental anxiety and promote bonding

The presentation then reviewed several studies on Baby CareLink, one of the first parent and staff portals, which concluded that "families from populations that are considered vulnerable, have poorer health outcomes and consequently have more to gain, will use and benefit from collaborative
tools that keep them informed and involved in the care of their children" and another study that found:
• ...parents reported better communication, higher levels of satisfaction with care and tended to take their children home earlier
• Internet portals will be used by both Medicaid and non-Medicaid parents with children in NICUs to meet educational needs
• Suggests an unmet need with substantial clinical benefits if such collaborative technology could be widely deployed

The second half of the 84 slide presentation looked at the proliferation of social media and focuses on the explosion of Facebook groups, including many SickKids groups. The positives are seen to be:

• Efficient method to keep friends and family up dated with patient’s health and progress
• Receive encouragement and support
• Share personal experiences and disseminate beliefs
• Express gratitude towards providers and institution

The negatives are:

• Persistence: Ownership of information and data mining
• Searchability & Replicability
• Invisible audience & Disinhibition
• High levels of self disclosure

This section included graphic pictures of intubated and wired babies and concern about the appropriateness of families posting such images (Dr Mistry relayed that some parents on a SickKids facebook group asked other parents to take certain pictures down and they did).

Neonatology 2.0 concludes:

While gains in healthcare knowledge and medical technologies
have improved health outcomes, the effective use of information
technology holds the potential to further enhance care and meet the
information, communication and collaboration needs of our families
• Better outcomes, lower costs, and higher patient and provider
satisfaction will be the likely result
• Social Media are used regularly by patients, their families and
healthcare professionals and are here to stay
• There are many benefits to using Social Media to communicate, but
also inherent risks, that may not be as easily perceived
• Thus, we must be vigilant in reinforcing ethical principals and must
educate our patients and families to protect them from these risks
• We must also be mindful of our role as professionals and our responsibility to maintain appropriate boundaries