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 sickkids.ca).

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.

Recommendations
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.

...an 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:

• Reducing Harm in Paediatric Care: Learning about Adverse Events using a Validated Canadian Paediatric Trigger Tool (Matlow: 2007) 
• Incidence and Types of Adverse Events in Children in Large Community Hospitals (Matlow: 2008)
• Development, Testing, and Findings of a Pediatric-Focused Trigger Tool to Identify Medication-Related Harm in US Children's Hospitals (Takata: 2008) 
• video of trigger tool in use 
• trigger tool resources from the CAPHC Patient Safety Collaborative:
  "We know that we cannot prevent all Adverse Events, but if we eliminate or mitigate the harm from those that are preventable, we will greatly increase the safety of our healthcare delivery.  In order to do so, however, we must first be able to identify these events, a process that has been hampered to date by the lack of an appropriate paediatric tool."
• Adverse Events in the Neonatal Intensive Care Unit: Development, Testing, and Findings of an NICU-Focused Trigger Tool to Identify Harm in North American NICUs (Sharek: 2006)
• Adverse events and comparison of systematic and voluntary reporting from a paediatric intensive care unit (Silas: 2010) 

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 www.justinhines.com

Rising musical star Maddy Rodriguez  www.maddyrodriguez.com

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, mmability@yahoo.ca, 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.