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."