Barbara Muskat appointed Clinical Director of Social Work at SickKids

I am pleased to announce the appointment of Dr. Barbara Muskat, PhD to the position of Clinical Director, Social Work reporting directly to me.

Barb is an accomplished leader and academic, having held numerous roles in child and family health including Director of Community Consultation at Integra, Toronto; Social Worker, Metropolitan Toronto Social Services; and most recently at SickKids as an Academic and Clinical Specialist with a focus on research.

Barb is an Assistant Professor at the University of Toronto and is the recipient of a 2011 grant to support her research on the “Experiences of Parents of Paediatric Patients with ALL, Two Months After Completion of Treatment”. Additionally she received a 2010 New Investigators Grant from the National Grants Program from SickKids Foundation.

Barb has published extensively and brings a wealth of clinical social work skills to her broad research expertise.

Wishing her much success as she takes on the operational and academic responsibilities for the social work program at SickKids.

Please join me in welcoming Barb to her new role.

Karen Karen Kinnear, RN BScN MBA
Executive Director, Clinical Labatt Family Heart Centre and Critical Care Services
The Hospital for Sick Children
In addition to all the achievements mentioned above, Barb is also the current staff co-chair of the Family Centered Care Advisory Council and so her appointment doubles up the support and the opportunity for SickKids patient and family-centered care research and practice.

Margaret Keatings, Chief of Interprofessional Practice and Chief Nurse Executive, announces retirement

Margaret Keatings, our Chief of Interprofessional Practice and Chief Nurse Executive, has announced her retirement. Margaret has dedicated her entire career to the nursing profession, including nursing practice, research and education. She joined the Executive Team at SickKids in 2004 after having served in senior leadership and clinical roles at both University Health Network and Hamilton Health Sciences. Margaret has had an impressive impact on SickKids; there has been a steady increase in nursing engagement scores across the organization, RN Council was expanded and Advanced Practice Nursing roles have grown.

In addition to her deep commitment to the nursing profession, Margaret has been a passionate champion for inter-professional practice and education at SickKids where she has both developed and executed an integrated strategy. She is presently working on a strategy to advance the academic mandate of health disciplines.

Family-centred care has also been an important priority for Margaret. She has played a key leadership role in advancing family-centred care at SickKids, where she has enhanced the family advisory committee model and increased the number of families and patients represented on hospital committees and re-designed the patient representative program.

Margaret has led a number of innovative initiatives, including a pilot of nurse practitioner-led clinics for paediatrics and a project with Citizenship and Immigration Canada which has resulted extensive cultural competence training and translation of educational materials for patients and families. This work is now being shared with the broader healthcare community to advance cultural competence across the province.

Academically, Margaret is a recognized leader in nursing and ethics having co-authored the third edition of Ethical and Legal Issues in Nursing during her tenure at SickKids. She is appointed at both the University of Toronto and McMaster University. During her time at SickKids she chaired the CAHO CNE sub-committee during which time they were instrumental in successfully advocating for the New Graduate Guarantee. Margaret also championed the development of RNAO Healthy Work Environment Best Practice Guidelines.

In her retirement, Margaret plans on travelling, renovating her homes and continuing to contribute to advancing nursing and health care both here and abroad.

Formal recognition of Margaret’s many contributions to SickKids will be held in the coming months. I invite you to please join me in congratulating and thanking Margaret as she enters the next chapter of her life.

Kind regards,
Mary Jo

Mary Jo Haddad, CM, MHSc, LLD, BScN
President and CEO The Hospital for Sick Children

National Meeting on Grief and Loss funded by Canadian Institutes of Health Research (CIHR)

The second Grief and Loss Meeting will be held at the The York University Psychology Clinic on Friday February 10th, 2012.

With funding from the Canadian Institutes of Health Research this meeting  continues a cross-national and interdisciplinary conversation on grief and loss including theory, research and practice at York University in Toronto, The Graduate Center and City University of New York.

The intention is to bring together a diverse group of people across professions who normally do not talk to each other to share resources, hear and converse on community and cultural responses to grief and loss and continue a budding cross-national exchange program launched in 2011.

Preliminary Agenda:

Screening of GriefWalker and discussion with Stephen Jenkinson. Griefwalker is a National Film Board of Canada documentary featuring Stephen Jenkinson’s work with dying people. Griefwalker shows Jenkinson in teaching sessions with doctors and nurses, in counselling sessions with dying people and their families. Questions to be explored include: Where does our culture’s death phobia come from? Is there such a thing as good dying? How is it that grief could be a skill instead of an affliction? How can seeing your life’s end be the beginning of your deep love of being alive? See

Panel on cultural and community responses to grief and loss will include talks by:

Kate Kenny from South Riverdale Community Health Centre speaking about the Grief and Loss Education and Action Project focusing on women’s experiences of grief and loss following custody loss.

Lynn Lavallee from Ryerson University speaking on the Normalization of Death and Dying: A Story of the Generational Impacts of a Métis Family.

Mary Ellen Macdonald from McGill University speaking on Grief Online: How virtual memorialization may be changing concepts of childhood death and parental bereavement.

Registration costs $30. Spaces are limited and people will be enrolled on a first come first serve basis. You must register in advance in order to attend the meeting. RSVP to griefandlossproject AT

Bioethics week Nov 7-11 - flyer of events

There are some very interesting presentations at SickKids Bio-Ethics week running Nov 7-11.

Please check out the flyer of events for more details.

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

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.

Palliative Research Symposium with Dr Joanne Wolfe - October 5, 2011

The third annual Paediatric Palliative Care Symposium focused on early integration of palliative care and family participation in palliative research and included a focus group, a participatory exercise to prioritize research priorities and a Cafe Scientifica of current TRAC-PG studies.

Grand Rounds keynote
The Grand Rounds keynote and special guest was Joanne Wolfe, MD, MPH and Director of the Pediatric Palliative Care at Children's Hospital Boston and Division Chief of the Pediatric Palliative Care Service Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute. Dr Wolfe's research focus on palliative care uses clinical trials to evaluate care approaches that preserve hope and optimize quality of life and comfort. The symposium was supported by CDP, SickKids Foundation and the Sasha Bella Fund at  the foundation. Thanks to Frank Gavin for sharing notes on Dr Wolfe's Grand Rounds presentation.  
  • One of the studies she referenced showed, as did one of the studies mentioned in last year's Grand Rounds presentation, that there is little or no real difference in what parents in different countries value and are concerned about in relation to palliative care.
  • Another study showed that questions/issues related to communication are the ones that parents care most about while the professionals were more focused on such matters as the timing or appropriateness of interventions. She also mentioned that parents, unlike the professionals, were not much concerned with privacy/confidentiality. The factors parents listed to rate good care included relationships, information, communication and preparation for death, compared to physicians who listed pain, length of hospitalization. These issues were verified in our small group discussion with parents.
  • One study she mentioned asked a number of children with life-threatening conditions about how frequently they experienced pain and (I think) how severe the pain was and found that none of those who said they had experienced pain had received treatment for pain. She stressed how unacceptable this was.
  • She mentioned the study that found that a particular group of adults who received palliative care actually lived longer than a comparable group who did not receive palliative care, but she cautioned that "it's just one study."
  • She interwove a number of stories of particular patients and families--with pictures--into her presentation. What stood out was the uniqueness of each situation, the impossibility of generalizing about what are the "right decisions," and the unreliability of many of the predictions that were made by doctors about how long the child would live, what the child's life would be like, etc. 
Valerie McDonald, bereaved mom and SickKids staff educator and volunteer added her highlights.
  • Suffering: she equated it with a threat to the integrity of a patient’s life and is different for everyone.
  • Decision-making: it is important to help with decision-making. In one study of pediatric cancer patients with 30% chance of success the majority opted for cancer therapy and most regretted it later. For young people making decisions about End of Life care, relationships with others are key.
  • Planning location of death led to more deaths at home, fewer in ICU and families felt better prepared.
  • Dr Wolfe's Pediquest Study collected symptoms and quality of life reports from families electronically, including children, and these reports helped children speak with doctors, helped parents understand how children were feeling, helped providers understand psychosocial aspects and helped them talk to families.
  • Name: Boston Children’s calls their palliative care team the Pediatric Enhanced Care Team; debate ensued…
  • 5 Cardinal Questions for PedPall providers: 1. Tell us about the child as a person 2. What is your understanding of the illness 3. What it most important to you, your child 4. What are your hopes? 5. What are your worries?
  • One question I was left with at the end (it was debated somewhat) was—is it better to have a separate palliative care team or should palliative care be integrated as a treatment modality?
The keynote was followed by a focus group that included a bereaved mom and dad. Then the lead researcher on current TRAC-PG study reviewed their teams work. Several of these studies were partly funded by the Innovation Fund for pediatric palliative research supported by the Sasha Bella Fund including a study that I am participating on for the first time about Father's Experiences with Parenting and Grief. Here are slides Laura Beaune presented. Laura and Dr Christine Newman, when asked how the fund could most help palliative care delivery at SickKids suggested the research support focus.

Building Conscensus on Research Priorities
Participants then broke into groups to brainstorm research priorities and a parent group was facilitated by Valerie with Joanne writing our ideas on flip chart paper and having an opportunity to meet and share stories. From the questions, the strongest themes were:
  • Peer support: its role in palliative and bereavement care; what are barriers and best practices? 
  • Communication: who talks to families, who most trusted/experienced, when, how; communicating with conflicted families and extended families 
  • Provider education: what role can families play in hospital education? 
  • Financial impact of chronic illness and lengthy hospital visits
  • Integrating supports across the continuum of care: quality support in urban and rural centers and homes 
Dr Wolfe was surprised that pain control and suffering wasn't on the SickKids' parent list though it often features in family accounts.

Poster Presentations & Café Scientifica

Welcome and introductions by Dr. Christine Newman (Palliative Care physician, SickKids)

1) Laura Beaune, David Nicholas, Maru Barrera, Mark Belletrutti,, Jonathan Blumberg, Stanley Ing, and Mathew Milen.  Fathers’ Experiences with Parenting & Grief: Unique Considerations in Caring and Research in Palliative Care

2) A Thompson, K Miller, J Crossenbacher, Maru Barrera, B Compas, B Davies, D Fairclough, MJ Guilmer, N Hogan, K Vannatta, & C Gerhardt.  Multiple Perspectives of Bereaved Children’s Emotional and Behavioral Adjustment after a Sibling Death from Cancer

3) Kimberley A. Widger,  Ann E. Tourangeau, Room for Improvement: Mothers’ Perspectives on Children’s End-of-life Care

4) Ceilidh Eaton Russell, Kimberley Widger, Maru Barrera, Laura Beaune, Susan Cadell, Adam Rapoport Maria Rugg, Rose Steele, "Sibling’s Perspectives: Toward a Better Understanding of their Involvement with a Dying Child"

5) Barbara Muskat, Samantha Anthony, Laura Beaune, David Brownstone, Pam Hubley, Dr. Christine Newman, Dr. Adam Rapoport. “Experiences and perceptions of paediatric health-care professionals providing end-of-life and palliative care”

6) Susan Cadell, Bluthardt, C., Betty Davies., Hemsworth, D., Stephen Liben., Hal Siden,  Rose Steele. & Lynn  Straatman.  “Elation” and “Grief”: Illustrating how the Positive and the Negatives Co-exist for Parents of a Child with a Life-Limiting Illness.

7) Rose Steele, Hal Siden, Rollin Brant, Susan Cadell, Betty Davies, Lynn Straatman, Adam Rapoport & Gail Andrews . “Charting the Territory: Symptoms in children with degenerative, life-threatening conditions”

8) Adam Rapoport, S. Lawrence Librach, Giovanna Sirianni, Amna Husain. “Not just little adults: Palliative care physician attitudes towards providing care for pediatric patients.”

9) Deborah Tomlinson, Pamela  Hinds, Ute Bartels, E, Hendershot , Lillian Sung. “Parents can Sensitively Report Determinants of Quality of Life for Children with Cancer Receiving Palliative Care”.

10) Laura Beaune, David Nicholas, Susan Cadell, Cindy Bruce-Barrett.  Pandemic Planning: Developing Consensus towards a National Planning Guide for Hospital Based Pediatric Palliative Care programs”.

11) Adam Rapoport, Rose Steele, Maria Rugg, Christine Newman. “Parental perceptions of forgoing artificial delivery of nutrition and hydration during end-of-life care for their children.”

Authors who are members of TRAC-PG: Laura Beaune, David Nicholas, Maru Barrera, Kimberley A. Widger, Ceilidh Eaton Russell, Susan Cadell, Adam Rapoport Maria Rugg, Rose Steele, Deborah Tomlinson, Lillian Sung

Suddenly "I" Was "Them" - when the baby of a bioethics director is admitted to the NICU by Felicia Cohn

Suddenly, I was a “them.” The moment that should have been the most joyous in my life became the most tragic. In the shift from health care professional to mother of a critically ill newborn, I learned things that redefined both my life and my professional identity. Never before had the “us vs them” divide been so clear. I had worked in the “us” role for years and was comfortable and confident in my ability to understand “them.” I knew that health care professionals were supposed to be powerful, authoritative, and knowledgeable. Families, I knew, were supposed to be vulnerable, dependent, and fragile. I thought that I was able to bridge that divide pretty well. With the birth of my child, Amanda, I became a “them.” In that moment, I was thrust into the role of the NICU mother. I had long sympathized with and supported such mothers. I could now truly empathize with those parents whom I had witnessed standing helplessly next to the small bassinets in the most technological of settings, crying many tears and uttering daily prayers of healing and thankfulness for modern medicine. When it was my own baby, I tried to draw on all that I had learned and taught in my role as a bioethicist. My experience provided little solace. My knowledge base failed me. From this experience, I have come to understand the world of the patient and the limits of empathy. I continue to struggle with three questions that my daughter’s illness occasioned all too personally: the nature of the questions physicians pose to our patients/families; the reliability of the informed consent process; and the just allocation of health care resources.
Read full article (PDF). Thanks to Janis for sharing with NICU's Family Centered Care Committee at SickKids.

Are you still sad? By Valerie McDonald

Here is a lovely reflection on bereavement rituals or, as the author describes them, memory traditions.
Someone asked me recently if I am still sad about the death of my daughter, Natalie. I was surprised by the question and even a little offended. Of course I’m still sad, but when I stopped to reflect, I realized that the sadness has changed in the nearly 12 years since she died.

Natalie was our middle child—the organizer, instigator and peace-maker between her two sisters. She died when she was 9 years old after being treated for leukemia for two and a half years. We had no idea how to carry on without her lively spirit in our family. When she died, we not only lost Natalie, we also abruptly lost the support of most of the health care providers who had cared for her and for us over many years. It was other parents who taught us most about how to cope with that shattering sorrow.

From our friends, we learned to celebrate our lively girl and include her in our lives. Every year, on her birthday, we invite her cousins and best friends to share her favourite meal of Fettuccine Alfredo and rhubarb cake. We can’t give gifts to Natalie, so we give them to our guests instead. At Christmas, Santa still fills her stocking along with those of the rest of the family. On her “Death Day” (inspired by Nearly Headless Nick, Natalie’s favourite Harry Potter ghost), we have a tradition of talking about how we can each do something to make our family better without Natalie.

During the first few years, each of these occasions was an unbearably sad reminder of her death. But gradually, we began to look forward to these remembering-Natalie-traditions. But the first time her best friend couldn’t attend a birthday party, I was devastated. It felt as though some part of Natalie had died all over again.

Then another wise friend reminded me that a 16 year old would likely not have had a family birthday party and might even have outgrown Fettuccine Alfredo. I realized that our remembering-Natalie-traditions could also grow and change, just as she would have done.

On the first Death Day that our family could not be together, we decided that each of us would draw a picture in honour of Natalie, who was a talented and prolific artist. The forced change in tradition encouraged us to explore her passion ourselves and to try something that she loved. Death Day was once the saddest day of the year. But now it is a day of art and creativity.

This past March, we celebrated her would-have-been twenty-first birthday. After living for nearly 12 years without her, yes, I am still sad. But after nearly 12 years, there is space to remember and celebrate the gifts she gave us that continue to enrich our lives.

Valerie McDonald is a former chair of SickKids family advisory council who also volunteers time to speak on palliative support and policies and assist with the research selection committee of TRACPG which the Sasha Bella Fund supports. This reflection is reprinted from the TRACPG's summer 2011 newsletter.

SickKids 2011 Paediatric Palliative Care Research Symposium

On October 5 2001, the national Team for Research in Adolescent and Childhood Palliation and Grief hosts SickKids third annual pediatric palliative research symposium.

The keynote and Special Grand Rounds Guest Speaker is Dr. Joanne Wolfe, Division Chief of Pediatric Palliative Care in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and Director of Palliative Care at Children's Hospital Boston.

The symposium themes include promoting palliative care at diagnosis of a life threatening illness among the circle of care and family engagement in research.

The full agenda includes Grand Rounds, expert panel, workshop, poster session and parent breakout, Café Scientifica — a workshop of 5 minute presentations on the current state of (exciting) research in pediatric palliative care - and a break out session for parents to connect and a town hall event.

Parent registrations are complimentary and here is the symposium summary from the temporary event website:

This third annual Paediatric Palliative Care Symposium will focus on themes related to: addressing the issues of early integration into palliative care, how to approach parents to participate in research in palliative care, and more.

Highlights will include our Grand Rounds key note speaker, Joanne Wolfe, from Boston Children's Hospital, oral and poster presentations by TRAC-PG scientists and clinicians, an expert panel debate regarding the successes and challenges to providing hospital based palliative care to children and a workshop/panel discussion with parents and health care providers.

This symposium is open to parents, family members, SickKids and community clinicians and researchers, volunteers and decision makers. Parents will have the opportunity to participate in this symposium with other parents who have shared interests in networking, supporting each other, research, volunteering, and philanthropy.

Optimizing Patient Safety Through IT Solutions: A Case Study

David Mosher presented to SickKids Patient Safety Symposium a personal case study titled "Optimizing Patient Safety through IT Solutions" based on his experience as the father of a child with complex care needs and a parent volunteer on SickKids family council and as a health care expert tasked with large scale mobile health care initiatives.

David describes his daughter as complex medically both in needs and in treatment concerns.

She also has an extremely wide circle of care extending to more than 10 sites at more than 5 different institutions.

As a father and IT professional, David then offers research and thoughts as to how technology adoption will improve the quality of information at the heart of patient safety.

Quality Information is Critical to Patient Safety

• “The majority of the key informants believed that the fundamental issue in patient safety and primary care is patient care information.”
(Kinston-Reichers et al., Cdn Patient Safety Institute)

• “During 32% of ER visits, missing information delays care”
(Stiell et al., 2004)

Increased Patient Safety Risk Factors

Can my wife and I get the answers right when under extreme stress?

What if we’re not there?

Very complex medical history/rare condition

My child cannot provide verbal feedback

Outbursts increase clinician stress, distracts and interrupts communication

Electronic Health Records are part of the solution

An E.H.R. provides a cross-provider, trusted healthcare record


• Is the info accessible at the point of care?
• Does it slow down the treatment process in E.R.?
• Is the information used to its potential?

Next Generation Mobile Devices Overcome the Access Barrier

- Light
- 10 hour battery life
- Intuitive user interface
- High resolution
- Built in cameras
- WiFi and 3G/4G
- Secure (no patient data on the device)
- Fast application deployment

Mobile Device Adoption is an unstoppable force in Healthcare

Clinical adoption of mobile devices is rising

• 72% of US Physicians use smartphones (Manhattan Research 2010)
• 52% look up patient information several times a day (Manhattan Research 2010)
• 50% of US physicians will have iPads by 2012 (Chilmark Research)
• 70% of Healthcare respondents plan to buy an iPad or similar device in the next year (HIMSS/BoxTone 2010 CompTIA 2010)
• 86% of Physicians with smartphones are interested in accessing EMR data by them (PwC 2010)


• The right information being available at the right time is crucial to patient safety

• E.H.R.s must be combined with mobile devices to have a meaningful impact

• IT can reduce the likelihood of errors that outside factors could introduce

David, thanks for sharing your presentation with us and for contributing to patient safety and family centered care at SickKids.

SickKids free family wireless goes live Mon June 20

On Friday, an Information Management and Technology director confirmed the imminent public launch of SickKidsWifi.

I am pleased to announce that free wireless access to the Internet for patients, families and visitors using their own mobile devices will be launched on Monday June 20th – a service that has been much sought after by those who come to SickKids.

You will now be able to connect to SickKidsWiFi via any wifi enabled device such as laptop, smartphone, iPad, iPod, PlayBook etc. The entire hospital is not covered however there will be coverage most importantly in patient rooms, the Atrium and the Gerard street food court, along with the Main Floor of Black, Burton and Hill wings and the first floor Library and North Conference Room.

There will be announcements this week in Daily News, This Week and Dear Parent Letters will be distributed to the units with a one page handout for our families.

Looking forward to deactivating my roaming mobile connection and turning on SickKids wifi next visit!

2011 Sasha Bella awards for Family Centred Care Excellence

The 2011 recipients of the Sasha Bella Fund awards for Excellence in Family Centered Care in the Labatt Family Heart Centre are occupational therapist Lisa Hoffman and nurse practitioner Judith Wilson. Judith and Lisa are the most experienced staff to be nominated and as long serving heart center staff were anchors in Sasha's care from 2004-2006.

Lisa's home visits during Sasha's first year and a half helped her with every step of skills development from rollover to sit, crawl, walking hand over hand, first unaided steps and, a biggie, eating. Sasha's success with these basics were our good times and a huge confidence boost that Sasha could develop and we could help her and all live and love together for an unknown amount of time.

Judith was nurse practitioner during Sasha's catheterization visits and her final five month stay and the combination of her gentle way and calm communication and extreme nursing competence were integral to us staying positive and focused and learning to feel we could care for Sasha even though she had an extreme heart and liver condition.

The hard work of health care professionals like Judith and Lisa make family centered care appear effortless. Not surprisingly, both visited our home after Sasha died, among about a dozen 4D staff who did so. Sasha touched hundreds of staff at SickKids but these were stars among her closest circle of care and I was so happy to see them recognized.

Judith's nomination letter described her as "assertive, expedient and accurate during clinical crises and her 'straight shooter' style and positive, forward thinking are to be admired" and that she engages in "truly loving and kind acts" such as the support of a seven year old Japanese heart patient and her family. With the child immobile and in precarious health and the family dependent on an interpreter, the highlight of her day was a visit to Tim Hortons with Judith for an iced expresso. Judith took her with multiple IVs on a wheelchair to see Santa at the Eaton Centre and then a stop at Nathan Phillips Square to watch skaters. A several hour winter transport with a child in precarious health is typically not done for fun and this was a unique family experience that took great nursing skill.

As a lovely first, Lisa Hoffman's nomination was from a nursing colleague for care of her child and family and Carrie's words as a mom and nurse educator resonate strongly as we celebrate family centered care.
"When our family reflects on what Lisa did for us, we see that she really listened, she trusted us, she helped ease the burden of uncertainty and she developed a plan of care that was doable and that worked for my daughter and our family. Lisa was the first and only health care professional who presented the big picture to us in a meaningful way."
Carrie credits "meltable-solids" as allowing her daughter to eat finger foods today and "tearless tolerable exercises which mimicked playtime" as life changers for her child and family.

Lisa and Judith, thanks for what you do so well each day for sick kids.

Also a big thanks to the many staff who have made time over five years for work to circulate, nominate, select, contact recipients and confirm nursing award day arrangements.

Judith received a rose from Nursing and a framed award from the Sasha Bella Fund after Nursing Excellence Awards on May 7 and Lisa's award will be at a future event of her and Rehab's choosing.

Exciting Patient Safety Symposium - June 9, 2011

SickKids 7th Annual Patient Safety Symposium on June 9, 2011 offers an exciting lineup. Here is a taste of the day from the titles of the presentations: adverse events in hospitalized children in Canada, UK Paediatric Trigger Tool, teamwork and communication, system wide learning from critical events and improving parent provider communication. Breakout sessions are on trigger tools, simulation, targeting zero and family council (FCCAC) parent David Mosher with Drs Niraj Mistry and Stephen Porter on 'Optimizing Patient Safety Through IT Solutions'.

The number and quality of SickKids patient safety presenters speaks to the energy and committment of staff across the hospital to tackle safety and include parents in this critical initiative. Here is the symposium's online agenda.

A testimony from the CCCU

During a break in the liver family day I bumped into the clinical director of the Critical Care Unit in the Atrium. He was one of two of Sasha's most senior helpers in CCCU and we had our most challenging conversation about Sasha and care with him about a week into her ICU stay. He sent me this note which I have lightly edited as to the positive impact of the ICU's family communication program which the Sasha Bella Fund For Family-Centered Care supported in 2010 and also to the continued relevance of family supports.
I recently dealt with a very challenging case with team/communication issues, some errors and a complex ICU stay.  The child died and I have been helping the mother get through the post death trauma. I stressed the things that are in place to deal with mitigating error, reporting and review of error and how we create an environment of no blame and encourage individuals to self report in a constructive way. I told her of our experience with getting members of our staff trained in Crucial Confrontations and, further, being trained as trainers. I  am one of 2 physicians here who have done this. After I told her that another family had been instrumental in this happening, she asked me to recognize that family. So here it is.

Canadian Family Advisory Network is at CAPHC October 2011

If you volunteer or work at a pediatric care facility and are passionate about family and staff partnership in children's health then you want to attend the CFAN workshop on October 17, 2011 in Ottawa. Here are the main bits of the co-chair's most recent update on the workshop and CAPHC conference - note the last item about new, monthly professional development tele-sessions for family-centered care workers.

CFAN at the Canadian Association of Paediatric Health Centres Conference (CAPHC) in Ottawa - Saturday October 15th and Sunday October 16th, 2011

We are very excited to announce that Dr. Karen Wayman, Endowed Director of Family Centered Care at Lucile Packard Children's Hospital at Stanford will be our keynote speaker and afternoon workshop facilitator. Karen's attendance has been made possible through the generous support of CAPHC and Children's Health Foundation.

The CFAN Workshop Planning Committee is collaborating with Christine Kouri, Patient/Family Representative and Coordinator for Patient/Family Centred Care and the Family Forum at CHEO, to plan this one and a half day event. CFAN members who have suggestions or ideas about topics you would like us to consider please send an email by the end of April. We will use past evaluation along with our discussions with Karen to inform our agenda.

Important Registration Information: Family Advisors who do not have a budget to attend the CFAN workshop will be granted a complimentary registration. Members will need to obtain a code that will be given to them by contacting the CFAN Chairs. CAPHC is also offering a reduced Family Rate for the entire conference. Please continue to check the CAPHC website for up to date conference registration processes. Contact Lisa.Hawthornthwiate AT or Sherri.wuetherick AT for the complimentary registration code.

CAPHC Conference: October 17th - 19th, 2011

Plans for October's CAPHC Conference in Ottawa are falling quickly into place. After last year's focus on "What's working now?" this year's theme is "Exploring the future of children's health care: What can we expect? How do we prepare?"

Among the highlights: Dr. Michael Evans, a wonderfully good-humored and forward-thinking family doctor, teacher and researcher, will give the keynote and Dr. Brian Goldman of "White Coat, Black Art" fame will lead a participatory session exploring how best to respond to and shape the changes ahead. The next day (Tuesday) will feature a performance of "Ed's Story" from Halifax and concurrent sessions on the future of primary care and impact of social media on everyone involved in child and youth health, a session CFAN will take a particularly active role in helping to plan.

There will be lots of time and space for posters--please think about submitting one yourself--and opportunities throughout for useful and enjoyable networking.

Visit CAPHC for conference information and updates from CFAN.

Patient and Family Centred Care Leaders Collaborative

With support from CFAN and CAPHC a new group has been formed for Leaders who are tasked with leading FCC change at their organizations. Monthly professional development topics with a supportive peer to peer atmosphere is offered for Leaders working in these unique roles. Please contact CFAN Director, robin.england AT for more information about these telesession opportunities.

For information or to register please email CFAN co-chairs Lisa.Hawthornthwiate AT or Sherri.wuetherick AT

Recognize a Heart Centre nurse or professional for family-centered excellence

Parents and staff, please  nominating a Labatt Family Heart Centre nurse or allied professional (social workers, respiratory therapists, physiotherapists, occupational therapists etc) who moved you with their family centered care practices for the 2011 Sasha Bella Award for Excellence in Family-Centred Care.

The award is intended for staff who demonstrate exemplary interprofessional family-centred practice and who has cared for a child and family whose hospital course involved multi-organ, multi-service and palliative challenges.

This award is now in its fifth year and is a way for families to give back to staff for their outstanding professionalism and humanity.

Any staff member or parent may nominate by providing a brief letter outlining the suitability of the nominee through an email to Patricia Sutton (patricia.sutton AT

Nominations are being accepted for only one more week so please spread the word.

Health of Families of Children with Disabilities - National Roundtable Report

CanChild, the Centre for Disability Research, recently published Health of Families of Children with Disabilities: National Roundtable Report which highlights care for the caregiver as a critical and increasingly vulnerable element of child health and safety in a family centered care model.

Executive Summary
A surprising number of Canadian children grow up with chronic mental or physical health problems, although estimates of prevalence vary dramatically across the many available definitions. The number of Canadian children aged 0-19 years who have a physical disability is estimated to be between 7-8%, while 10-12% of children have some degree of cognitive deficit or learning disability. While different definitions of childhood health problems will continue to be applied for different purposes, it is clear that a substantial proportion of Canadian children and their families must cope with chronic childhood health problems.

Caregivers play a central role in the lives of children, and the well-being of each is inextricably linked to the other’s well-being. Caring for a child involves considerable demands on time, energy, and finances. Such demands can, however, be much greater for parents of children with disabilities. Clearly documented demands include increased time (everyday care, medical appointments), higher medical costs ranging from 2.5 to 20 times typical amounts, greater childcare challenges (respite care, accommodation in regular programs), more employment constraints (work schedule, choice of occupation), lower income, as well as greater stress,
anxiety about the future, and lack of sleep. While many families cope well with these challenges, these additional personal and financial pressures can amount to a significant burden.

A growing body of literature is now revealing that challenges shouldered by families of children with disabilities can be associated with an increase in a wide variety of both physical and psychological health concerns. Caregivers of children with disabilities have been shown to report a greater number of chronic physical conditions as well as exhibit poorer psychological health, including greater stress, distress, emotional problems, and depression compared to caregivers of children without disabilities. These findings are consistent in showing that there is an important relationship between child disability and caregiver health.

On November 5th, 2010, the Ottawa Hospital Research Institute (OHRI) hosted an invitational roundtable on the health of caregivers of children with disabilities funded by the Canadian Institutes of Health Research (CIHR) and Health Canada. The purpose of this roundtable was to engage parents, researchers, clinicians, policy makers, and representatives of non-government organizations in a process designed to facilitate the development of tools and approaches to support families of children with disabilities.

The roundtable agenda was developed around four key objectives that were successfully achieved: (1) Discuss the findings of recent CIHR-funded studies focused on the health of Canadian caregivers of children with disabilities. (2) Consult with stakeholders and decision makers about what issues need to be informed by future research. (3) Initiate the development of practical, research-based knowledge tools and approaches that will 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.

Participants first engaged in an activity individually and in groups to focus on “What needs to be done?” They then identified seven priority areas to support families of children with disabilities. Next, they brainstormed and discussed “What action can we take?” in each of the priority areas.

Several key messages and recommendations emerged from these discussions, and these can be summarized as follows:
1. Increase caregiver capacity to navigate effectively through the health care system.
2. Reduce caregivers’ feelings of powerlessness.
3. Embed caregiver health into existing policy frameworks.
4. Identify key messages for dissemination.
5. Provide caregiver relief / respite.
6. Promote system change to improve support for caregivers.
7. Develop a theme template to organize information on existing programs and policies across the nation.
[emphasis added]

This meeting report includes the discussions and group work of these seven priority areas.

View text of The National Roundtable Report.

SickKids Bereavement Report

The Report of the Bereavement Care Task Force into bereavement practices at SickKids identifies practises, policies, inconsistencies and program needs. It supports long time parent requests such as a yearly memorial, a celebration wall (much as we celebrate organ donors) and peer support programs and to make all this and more happen, the report recommends hiring a bereavement coordinator. The report focuses on bereavement care; hopefully palliative care will be the subject of a future report.

Executive Summary
A review of bereavement care at SickKids was initiated in 2009 with the creation of the Bereavement Task Force. The aim of the review has been to conduct a thorough examination of current bereavement practices at the hospital, to undertake an external survey of best practices in bereavement care, and to make recommendations for enhancements to existing practices where appropriate.

This report details key findings of the Task Force, including existing best practices and areas where enhancements will result in improved patient and family care outcomes. Recommendations put forward in the report are informed by the findings of the review. They seek to address some of the identified gaps and to ensure that the standard of bereavement care is consistent across the hospital and with best practices.

The review undertaken by the Bereavement Care Task Force included a comprehensive examination of existing practices and resources at the hospital, as well as an external survey of best practices and a literature review. Staff from across the hospital and across disciplines were interviewed, including: doctors, nurses, social workers, psychologists, bereavement coordinators, members of the palliative and bereavement care team, chaplains, members of the protection and transport services, child life specialists, members of the division of pathology, and representatives from the Coroner’s Office. Staff were interviewed about current bereavement practices, standards, policies, and protocols.

Staff were also asked to identify families who had experienced the death of a child to be interviewed. Ten families from varying programs and clinical areas across the hospital were interviewed. Six of the interviews were conducted in person; four were conducted by telephone. All of the families interviewed had experienced the death of a child within the past three years, and the ages of the children at time of death ranged from three weeks to 16 years. The families came from diverse backgrounds, and one family required interpreter services to complete the interview. Families were asked to share their experience of bereavement care at the hospital. The interviews were guided by pre-established questions and prompts.

This report describes the work and findings of the Bereavement Care Task Force with regard to the current state of bereavement care at SickKids, as well as current thinking and evidence on bereavement care best practices. Both the strengths and gaps, with respect to the bereavement care being provided at the hospital, have been investigated and documented.

The report recognizes that families value many of the existing bereavement practices, such as legacy creation, follow-up, active support, and timely and compassionate communication. It also indicates that there are considerable and
problematic inconsistencies in the quality of bereavement care being provide to children and families. Additionally, other insights, such as the need for support for staff who are impacted when a child dies, have surfaced as a result of the work.

Based on these findings, the report offers a number of recommendations that seek to build on successes and strengths, while addressing identified gaps and inconsistencies. Where possible, the Task Force has already begun implementing
recommendations, such as building closer working relationship with the Coroner’s Office. A key recommendation of the Task Force is the creation of a hospital-wide, comprehensive bereavement program. The Task Force members are committed to continue working with stakeholders and partners within and outside of the hospital to develop and promote best practices in bereavement care at SickKids and beyond.

The interviews with staff and families, as well as the literature review, revealed both strengths and gaps in terms of existing bereavement care practices at SickKids. Based on the data gathered, the Task Force has put forward recommendations
that address a number of areas, including: enhancements to staff education and resources in the area of bereavement care; the need to challenge existing beliefs and attitudes about death as a care outcome and the potential for a dignified death to support a positive bereavement process; and the development of policies and procedures where needed to ensure consistency of bereavement care across the hospital.

1. Develop a strategy to ensure consistent bereavement care is delivered at all times, in all settings.
a. Integrate existing policies into one comprehensive guideline, while making explicit those parts of the guideline that are legislated and/or mandated aspects of care (i.e., Coroner’s cases).
b. Implement and evaluate a triage model to identify families at high risk for post-traumatic stress following the death of a child.
c. Develop a system for staff to refer families who require support following the death of their child (i.e., a bereavement clinic).
d. Develop, implement and evaluate bereavement care plans for every family whose child has died.
e. Ensure the utilization of interpreter services for families with limited English proficiency who experience the death of their child.

2. Create a hospital-wide bereavement program that integrates education, policy, research, clinical care, and evaluation. Consideration should be given to include this resource within the current Palliative Care and Bereavement Service.
a. Centralize all present and future hospital bereavement resources under the leadership of one director to ensure consistent bereavement care throughout the organization.
b. Ensure this program is responsible for the implementation and evaluation of all recommendations put forth by the Task Force.
c. This program is to assume accountability for implementing best practice guidelines throughout the hospital.
d. The Bereavement Task Force is to be reconstituted to become an advisory to the Bereavement Program.
e. Utilize TRAC-PG (Team for Research in Adolescence and Children in Palliation and Grief) as an overseeing body for
research development and implementation in the area of palliative and bereavement care.
f. Integrate bereavement work with other hospital initiatives, such as the New Immigrant Support Network (NISN) and interprofessional practice initiatives.
g. Examination of the bereavement experiences of families from diverse cultural and religious backgrounds is to be considered a priority for further research.

3. Develop new resources to promote best practices in bereavement care including bereavement care across cultures, such as:
a. A parent information package.
b. Parent-to-parent support program.
c. A bereavement website that indicates available internal and external (provincial, national and international) support
and resources.
d. A mechanism through which staff may continue to stay apprised of current literature and evidence-influenced practice.

4. Link with available community resources to optimize their use, foster existing relationships, and create opportunities to develop new partnerships.
a. Work specifically with the Coroner’s Office to improve relationships and care.
b. Work to develop relationships with appropriate external agencies (e.g., hospices, Bereaved Families of Ontario).
c. Work with external agencies with which SickKids is already engaged to make bereavement care a priority in our continued work and collaboration.

5. Provide education about the principles of grief, death, dying and bereavement to all hospital personnel and, where possible, to community partners.
a. Utilize a tiered approach to education that tailors content to various roles and responsibilities.
b. Revise Mock Codes to incorporate after death care, resiliency training/education, and incident debriefing.
c. Develop a hospital-wide support program for staff who work in units/areas which experience a high number of deaths.

6. Implement a standardized follow-up process after the death of a child.
a. Create guidelines that support staff in setting boundaries around continued involvement and contact with bereaved families.

7. Adopt and implement a quality of care measurement system, for example, a tool similar to the Picker for pain (an indicator to monitor quality of care).

8. As is appropriate, continue to engage our bereaved families:
a. Through the implementation of hospital-wide memorial services.
b. Through considering the creation of a recognition wall for the children who have died.
9. Implement facility upgrades to the hospital’s morgue and quiet room.
10. Finalize and approve the draft paper: The Hospital For Sick Children Bereavement Care: An Interdisciplinary Framework for Practice.
11. Create a model of care that accurately conceptualizes the Task Force’s vision for quality paediatric bereavement care that is individualized, family-centred and evidence-based.

Bereavement Care Review Task Force Members:

Margaret Keatings (Executive Sponsor), Jackie Hubbert (Project Manager), Mayola Matthew, Maru Barrera, Marie Pinard, Chris Newman, Pam Hubley, Adam Rapoport, Trisha Sutton, Maria Rugg, Ted McNeill, Stephanie Lappan-Gracon, David Brownstone, Susan Cromwell, Michael Marshall, Karima Karmali, Catherine Fenton [parent], and Mitchel Blum [parent].

View the Report of the Bereavement Care Task Force (2.5MB PDF).

One more day to SickKids Parent Education Day!

The February 19th parent education day promoted on SickKids homepage content slider.

We have almost 80 registrants so far and there is still time over the next 24 hours to register and learn about supports, develop strategies and meet other parents and staff.

The event is free and includes refreshments and light lunch. We start at 8.45am and end at 2pm and no one will mind if you pop in for a few sessions of interest if you cannot make the full day.    

Margaret Keatings, the staff sponsor of the event, will welcome everyone and hopefully share news on exciting family centered care initiatives underway and in preparation.

Family advisory council member Jody Yielding will then bring you within their family story with Jack in Turning Lemons Into Lemonade. 

A wide range of workshops follow in two series: sibling support, patient safety, family legal health program and school rights; and helping your child cope, dealing with the school system and transitions to adult care.

Then after lunch, two presentations will first ask you to help define child and family service excellence and then consider the importance of care for the caregiver (i.e you).

There will be door prizes, students of therapeutic massage offering neck and back rubs and representatives of committees where parents volunteer to help the hospital will be around to talk about opportunities to participate.  

Here is the full agenda and online registration.

If you can think of someone who might benefit, please forward or give this wings with the share buttons.

SickKids hospital news twitter account @sickkidsnews (started June 2009) publicizes education day.  

Larsen Grace Purvis

In April 2008 I shared a link to Larsen Grace from Tennessee who was like Sasha's Alagile sister in their rare combination of liver and heart defect. I hoped Larsen would live long and defy the odds and each email notification of a new carepage was a special delivery. Her mother Tamara posted on her Carepage details of a life full of love and hope and challenge and travel and family and all kinds of supports. Almost every carepage ended with prayers for children they knew with Alagille syndrome. Her posts on the Alagile Syndrome Alliance bulletin board shared ups and downs and reached out with thoughts and support.

Larsen grew into a beautiful, golden skinned girl who loved her little sister Courtlyn. She rebounded from numerous proceedures but at age 2 she broke a leg and more recently she fell from her bed one night and needed surgery to stem a bleed in her brain. After a catheterization, Larsen's family prayed daily that the tiny collateral arteries to her lungs would expand. As we are learning, the collateral arteries in these children do not grow. At three and a half years of age, Larsen's care team declined further intervention and so did another team. On Dec 31 a carepage update celebrated that a specialist in Cincinnati would stent and balloon some arteries on January 25.

My son Bram was born January 21 and the days flew by. On January 25, Tamara posted that Larsen was in surgery. I know how the moments pass for families during surgery, and this was high risk. A few hours later the update was "Larsen has passed." My heart raced and I felt dizzy.

A few days later Tamara shared what had happened, starting with a quick run through of her life and then the wonderful day pre-surgery at the hotel pool and out on the town. When Tamara told Larsen that morning that the doctor was going to try fix her heart, she said "Ok, that sounds like a good idea." Amazing - at one and a half years and then a diminished 2 years we could never have a conversation like that with Sasha. The surgeon saw a tiny tear but wasn't too worried and then she hemoraged and had a cardiac arrest. The team worked for some time to revive her and the surgeon was shocked and emotional. The family's faith is strong and Larsen is with her God.

Larsen you touched and live on in many hearts and you chose a great family to love and care for you and to love in return. Like Sasha, you were more fragile than we realized. May your memory be a blessing to your family who gave you so much love. My heart goes out to the Purvis and Gremillion families who packed so much life into Larsen's three and a half years.

You can read about Larsen's life at her carepage. You can learn more about research and family supports at the Alagille Syndrome Alliance and their bulletin board which has become the primary virtual support for families of children living with Alagile Syndrome.

Canadian Paediatric Trigger Tool

The just published "Description of the development and validation of the Canadian Paediatric Trigger Tool" is a ground breaking contribution to pediatric patient safety co-written by Dr Anne Matlow, Medical Director of Patient Safety and Infection Prevention and Control at SickKids Hospital and member of the CAPHC Patient Safety Collaborative.
The CPTT is the first valid and reliable TT [trigger tool] for detecting harm in children and youth of all ages hospitalised in acute care. This 35-trigger tool is reliable and robust, and can be used in quality-improvement initiatives and for more rigorous research agendas. Future research should focus on improving the efficiency of the CPTT and investigating the differences between nurse and physician assessments of AEs [adverse events]... Such studies will enhance current efforts to raise the profile of paediatric patient safety issues. AE was defined as an unintended injury or complication that results in disability at the time of discharge, death, prolonged hospital stay or subsequent hospitalisation, and is caused by healthcare management.... ‘Healthcare management’ included the actions of individual hospital staff, as well as the broader systems and care processes, and included acts of omission and commission.

Additional resources:

AbilityOnline invites you to celebrate the launch of their new and improved web portal

Come celebrate Abilities, Possibilities and Families with the Board of Ability Online.

Since 1997 we've had a presence on the world-wide-web and have provided a unique online community to enrich the lives of children and youth with all kinds of disabilities or chronic illnesses. Within this secure and monitored environment our members meet, learn, develop skills, and enjoy the company of others who have faced similar challenges.

However, our aging technology was making the site  difficult to navigate for most and inaccessible for many. Along comes Momentum with a complete site rebuild - a complex and daunting challenge.

When our kids feel good about themselves, they start to imagine their potential and look beyond their disabilities. Now they will be able to do this and more in a state of the art website which will be unveiled by the Lieutenant Governor of Ontario, the Honourable David C. Onley.

The event will be hosted by Colleen Rusholme from Boom 97.3.

Special guest appearances by:

Singing superstar, Justin Hines

Rising musical star Maddy Rodriguez

Please join us:

Date:     February 15, 2011
Time:     3:00 to 4:00 p.m.
Music Room, Hart House, University of Toronto
7 Hart House Circle, Toronto

RSVP: Michelle McClure,, 416-650-6207 

Since meeting Michelle McClure in October 2008 I have been a big fan of AbilityOnline, a website for children and parents to connect and get support. Its a resource long advertised on the SickKids website. Two years later and the revamped portal is ready for launch! Congratulations to Michelle and AbilityOnline and a special thanks to Momentum for their massive donation of time and energy and skill. If you cannot make this exciting launch, please check in over the next few weeks and consider signing up to use AbilityOnline.

Bram Solomon Stein-Blumberg is born

Our first son was born at 8am on January 21, 2011 weighing 8 lbs at Mount Sinai Hospital in Toronto, where Sasha, Mia and Eve were also born. Pamela made it look easy and the team worked like clockwork, pushing us along with minimum discussion: we hung out in the family room from 6pm to midnight wondering when she would be induced. A waiting granny who went to camp with our doctor was Mia's supply teacher last week. Small world. She was waiting for a daughter who is a good friend of a close neighbour. Smaller world. Induction at 2am, scary epidural went well at 3am, painless onset of contractions and three big pushes approaching 8am.
This is our last child and first boy and we wonder what we have gotten ourselves into after finding a groove with Mia and Eve. He had his fingers in his mouth in a few minutes and the birth was so quick he wasn't hungry. He seemed very content and happy to latch. The past is everywhere as I walk around, a momentarily open NICU door filled with isolettes, posters for a palliative support study supervised by SickKids NICU nurse Lori Ives-Baine, and a dusty blackboard listing family centred research projects for 2007. The breadth of birth support is truly staggering.
Earlier, we went for dinner on Elm at the Queen and Beaver and the lamb kidney's were a bit rich in retrospect. We walked under the CCCCU windows on the way home but decided not to walk through SickKids as we did while Pam was in labour with Sasha. After we were transferred to a room on the 10th floor, Bran fed and we unwound as a parade of nurses and doctors visited the next bed. As we brought Mia and Eve to visit and our bed turned into a temporary carnival of love, 2 feet away a mom and her twins were all struggling. But we were home within 36 hours and while the difficult bits (eating, sleeping, parenting 2 older sisters) seemed to slip into place over the next 3 days it took almost a week to choose a name. Bram is named in loving memory of Pamela's cousin Brandon Grajycer

Website survey on Patient Representative includes Declaration of Values

The latest SickKids website pop-up survey focuses on visitor knowledge of and experience with The Patient Representative who helps patients and families navigate the hospital and privately deal with grievances. Slide 6 however starts with questions about customer service experiences as Ontario hospitals who do not have one are required to complete a user Declaration of Values (DOV) by June 8 2011. As described in 1.2 of the "Guidance Document for Declaration of Values ECFAA requirement":
"The Excellent Care for All Act (ECFAA) requires all hospitals to have a publicly available patient declaration of values produced after consultation with the public."

The role of the representative is very important in navigating families to resources and addressing grievances. Some parents fear that family and staff disagreement may impact their child's care. Here is how the website describes the Patient Representative ambit of work:
Respect and Support

At SickKids, we understand that a family feels a lot of stress when their child is injured or ill. We will do our best to help you through the process in a way which is respectful of you and of the hospital staff. Families sometimes worry that they will make things worse for their child or for themselves, if they express that they are concerned or dissatisfied with any aspect of care or service, which they are receiving. We understand these fears. Supporting and helping you is what we are here to do. The hospital offers this service because responding to families’ concerns is an important part of family-centred care.

The Patient Rep

* Provides a private place where patients and their families can confidentially discuss their experiences at SickKids.
* Can work with you to address concerns.
* Can help you find the information or assistance you need.
* Can help families and staff communicate more effectively with each other.
* Observes trends and makes recommendations for positive change.
* Passes on your compliments and feedback to hospital staff.
* We will tell you when we cannot do what you are asking.

Here for You

The Patient Representative Service is here to act in the best interests of the patient.

We are here to respond to your family’s needs or concerns.

While the words "patient advocate" or "advocasy" do not appear, the patient rep is the closest SickKids has to a family advocate. In our case, Sasha's mom was upset when a medical fellow joked during the consent discussion for a proceedure and she asked if the doctor could be moved off Sasha's team. This occurred with no fuss and continued for most of the remainder of the stay except when we moved up to his floor and this fellow did a quick consultation on Sasha's arrival and again appeared at a final family meeting to plan Sasha's return home.

Here are the six survey slides which elicit feedback on the Patient Representative and the Declaration of Values.

Family Education Day: Caring for Your Child; Empowering Yourself

SickKids 2011 Family Education Day will be held February 19th (the family day weekend) at the hospital.

Please pass these event details on if you know someone who might be interested.

This education day will be an opportunity for parents/caregivers of children and teens who are patients at SickKids to:
  • Network with other parents/caregivers in a relaxed and welcoming atmosphere
  • Feel empowered in their role as members of the healthcare team
  • Participate in a variety of topics that are relevant and of interest to their families (e.g. sibling support, patient safety, transitioning)
  • Collaborate with other parents/caregivers and healthcare providers at SickKids

The event is free and is designed to support families of kids with any sort of health issue and all inpatient and outpatient families are welcome.

The event is designed for parents and there is very limited child care available. Topic wise there is something on offer for all parents or care-givers and several sessions will include staff and parents co-presenting.

The event is coordinated by the Family Centered Care Advisory Council (FCCAC) with input from the Children's Council. FCCAC members will be on hand as well as staff to talk about parent volunteering and other family support services.

You can register online here.

8:45 - 9:15 Registrations, Breakfast and Networking
9:15 - 10:00 Welcome FCCAC, Conference Committee and Mary Jo Haddad
9:30 - 10:00 Turning Lemons into Lemonade: A parent's journey of living with a sick child Jodi Yeilding
10:00 - 11:00 Concurrent Session 1 Support for Siblings Dr. Maru Barrera
10:00 - 11:00 Concurrent Session 2 Families as Partners in Patient Safety Jonathan Blumberg and Rita Damignani
10:00 - 11:00 Concurrent Session 3 Family Legal Health Program and Tangible Supports Lee Ann Chapman, Lawyer, Family Legal Health Program
11:00 - 12:00 Concurrent Session 1 Helping Your Child Cope with Illness and Hospitalization Childlife Service
11:00 - 12:00 Concurrent Session 2 Helping Parents Deal with the School System Speaker TBA
11:00 - 12:00 Concurrent Session 3 Transition from Paediatric to Adult Care Lindsay Yeo, Kariym Joachim and Good to Go staff member Genevieve Kilman BA, CCLS
12:00 - 1:00Lunch and Networking
1:00 - 1:20 Child and Family Relations: Moving Forward with Service Excellence Marie Pinard and Cindy Bruce-Barrett
1:20 - 2:00PM Caring for Yourself as a Caregiver Irene Elliott and Janice Mulligan