2009 Innovation Fund palliative research grant applications

The 2009 grants focus on the staff experience, research foundations, perinatal care and fathers.

Experiences and perceptions of paediatric health professionals providing end of life and palliative care.
Barbara Muskat, PhD, MSW, RSW, Samantha Anthony, MSW, RSW, Res.Dip.SW, Laura Beaune, MSW, Res Dip. SW, David Brownstone, MSW, RSW, Pam Hubley, RN, MSc, ACNP, Christine Newman, MD FRCP(C), Adam Rapoport, MD, FRCPC, MHSc, The Hospital for Sick Children

A systematic review of bereavement after the death of a child: A meta-synthesis of literature on family bereavement experiences and interventions
Mary Ellen Macdonald, PhD, Stephen Liben, MD, Montreal Children’s Hospital; Susan Cadell, PhD, Wilfrid Laurier University; Ms. Lorie Kloda, Life Sciences Librarian, McGill University

Perinatal Palliative Care: Measuring the Impact of Manitoba’s Pediatric Symptom Management and Palliative Care Service (PPCS)
Simone Stenekes RN, MN, CHPCN(c), Mike Harlos MD, CCFP, FCFP, Winnipeg Regional Health Authority (WRHA); Carla Ens PhD, Manitoba FASD Centre; Devon Brown RN, BN, Harvey Max Chochinov MD, PhD, FRSC, University of Manitoba; Susan Kuling, Royal University Hospital, Saskatoon Health Region

Understanding the experiences and support needs of fathers of children with life-limiting illnesses
Dr. David Nicholas, PhD, University of Alberta; Laura Beaune, MSW, Res. Dip. SW, Dr. Maru Barrera, PhD, The Hospital for Sick Children; Jonathan Blumberg, The Sasha Bella Fund

When The Sasha Bella Fund asked the Palliative Care Service about their priorities going on three years ago, a key request was to help fund research by the new research interest group TRAC-PG. Supporting a new national network of committed paediatric palliative reseachers was naturally very appealing and lead to a modest palliative research Innovation Fund. In November 2008, two of four study applicants were supported - this year four of twelve applicants were supported My second year on the selection committee again left me amazed at the knowledge of research and clinical practise and the attention to detail and constructiveness of feedback. Here is a  list of TRAC-PG completed and in progress studies showing it's wide ark over 5 years.

2009 Sasha Bella Fun Day PICTURES

Photo: Bryan McBurney


We want to thank the families who came out and donated for making the 2009 fun day such an amazing time! Families, performers and volunteers - you were all so wonderful!

We feel lucky that such generous and talented people helped SickKids and Bloorview Kids Rhab and celebrated Sasha on such a beautiful sunny Sunday. Many people told us they felt the love in the room.

Warmest regards and a big THANK YOU! Between web and on the day donations we together raised almost $20,000 for SickKids and Bloorview.
Pamela and Jonathan

p.s the 2009 event website is still open - NO percentage of a dollar donated to The Sasha Bella Fund goes to administrative overhead, it all goes to family centred and interprofessional projects.

Photo: Bryan McBurney

Dr. Jonathan Hellmann, Clinical Director of SickKids Neonatal Intensive Care Unit, talks about staff working with families in a new Family Centred Care Family Care Committee that The Sasha Bella Fund helped birth with other SickKids families. Photo: Bryan McBurney

Charlie and Little Fingers Music take their bat energy to the floor and get kids and parents alike on their feet and claws, clapping their clackers. Photo: Bryan McBurney

Photo: Bryan McBurney

Mia stares up at the performers. Photo: Bryan McBurney

Volunteer Jonathan Gould channels earlier clowning and juggles for son and dad. Photo: Bryan McBurney

The photographer's son. Photo: Bryan McBurney

Tom Davis and Rachel brought us delicious smoked brisket sandwiches, smoked ribs and all beef steamed hotdogs from The Stockyards. Photo: Bryan McBurney

Sasha loved her Raggedy Annes. Did you know? Raggedy's creator made her for his dying daughter and it was later taken up as a symbol of the anti-vaccination movement. (Sasha had all her vaccines regularly)Photo: Bryan McBurney

Photo: Bryan McBurney

Bloorview Kids Rehab therapeutic clowns Helen and Janet. Photo: Bryan McBurney

Golden voiced Deborah Maes brings folky kids songs to the families. Photo: Bryan McBurney

With the help of our McNulty neighbours, The Young Choung Taekwondo Academy demonstrates taekwondo in group and solo breaking of the boards. Photo: Bryan McBurney

Michaela breaks her board. Michaela knew Sasha and last year organized a lemonade and cookie stand at her home for The Sasha Bella Fund.
Photo: Bryan McBurney

Sho Mo + The Monkey Bunch gave us their super tight, high energy kids music as our fun day finale.
Photo: Bryan McBurney

Photo: Bryan McBurney

SickKids inaugural palliative research symposium - keynotes by Dr Adam Rapoport and Kim Widger

SickKids inaugural paediatric palliative research symposium began with keynotes from palliative care doctor Dr Adam Rapoport and palliative researcher Kim Widger.

Adam showing exciting growth in palliative research over a decade from a Pub Med search showing 10 results for "paediatric palliative care" in 1990 and 80 in 2008; "paediatric oncology" however displays 1500 studies. Palliative studies are still largely descriptive and observational and there is a "need to design quantitative studies."

An ethical challenge to palliative research posed by Research Ethics Boards (REBs) is their view that palliative children are "particularly vulnerable". Three criteria hold sway: in so far as research posed a "minimal risk" to the subjects, REBs continue to have grave concerns about negatively impacting parents psychologically and adding to their traumatic experience. In terms of the "benefit" to the subjects, since there is little medical benefit, research can be seen to satisfy altruistic needs, help create meaning and legacy building and be both challenging and rewarding. The third, generation of "generalizeable knowledge", offers the strongest argument however the REB wants to see only a "minor increase over minimal risk" to subjects.

REBs try to protect children and families from "unreasonable risk" and may presume that (ethical) risks to palliative children in a proposed study are the same as non-palliative children. REBs may deny choice to palliative parents and children to participate.

REBs are extremely concerned about parental informed consent and lack of child autonomy to refuse to join a study. Also some parents do not wish that their child know they are dying. It is important that parents know they can decline or drop out at any time with no consequences. Pamela Hinds shows parents were as comfortable declining palliative research as non-palliative research.

Kim Widger started with the virtual impossibility of fully randomized controlled trials, the gold standard of medical research. Getting the minimum 40 participants group in a new model and old model cohort would be logistically difficult and ethically problematic for the relationship based discipline to deny half the group advanced palliative care. More feasible may be not randomized but quasi- experimental using two hospitals with different care models. They also are descriptive or use expert opinion about standards and norms of practise.

As to what research can measure, we look beyond health status (as all eventually die) to quality of death, quality of life, family health status, location of death and patient and family satisfaction: sometimes families describe horrible deaths but are satisfied with the care.

With children, the planning of care appears more important to families than the location of death.

Research creatively uses children drawing and mapping with a color pain scale and use of parents as proxy for their children based on the amount of time spent with them.

Research is complicated by the small numbers traversing a large number of disease groupings. Researchers must consider the best time and manner to communicate with parents and allow it to be easy to withdraw, which can compromise a study or instrument development's validity. Parents want choice as to whether they participate and the manner and they want reassurance their feedback gets back to caregivers.

Kim concluded by calling for sharing of evidence we do have, working as a team with parents, seeing the joys and rewards that come from the effort and addressing the "appalling representation" ethnographically due to expense and difficulty of finding research assistants, also pointing to a need for more international teams.


Adam Rapoport joined the Max and Beatrice Wolfe Children’s Centre, a part of the Temmy Latner Centre for Palliative Care, as the pediatric palliative care consultant in June 2009. He also works as a general pediatric hospitalist at the Hospital for Sick Children in Toronto, where he spends most of his time providing care to children with chronic complex conditions. After completing his final year of pediatric residency as Chief Resident, Adam entered into an Academic General Pediatric Fellowship. During his fellowship he obtained a Masters of Health Sciences in Bioethics at the University of Toronto and pursued further clinical training in the field of pediatric palliative care. His academic work focuses on the intersection of his 3 primary interests: pediatrics, palliative care and ethics. Adam and his wife Mia are kept very busy by their 2 daughters, Lilah (22 months) and Chloe (5 months)…and they love every minute of it!

Kimberley Widger began her PhD studies in September 2006 at the Lawrence S. Bloomberg Faculty of Nursing, University of Toronto. She is supported in her studies with a Fellowship from the Canadian Institutes for Health Research. Prior to moving to Toronto, Kimberley was as a Clinical Nurse Specialist with the Pediatric Palliative Care Service at the IWK Health Centre and an Adjunct Professor at the Dalhousie University School of Nursing in Halifax, NS. She is a member of the Canadian Hospice Palliative Care Nursing Examination Committee and is on the executive of the Canadian Network of Palliative Care for Children. In her doctoral research she is developing an instrument to measure the quality of care provided to dying children and their families from the perspective of bereaved parents. Kim and her husband Mike are also kept busy with their two children, Rebecca (6 years) and Ryan (4 years).

Palliative expert panel - myths surrounding paediatric palliative research

"What are the biggest myths surrounding research?" was the expert panel focus, moderated by Maria Rugg, former SickKids Advanced Practise Nurse to the Palliative and Bereavement Service, now seconded to the Office of the Chief Coroner of Ontario. The panel comprised of:

Elizabeth Peeters, b.r.a.i.n child president, member of SickKids Research Ethics Board, grieving mother and sibling

Dr Christine Newman, SickKids Palliative and Bereavement Care Service

Dr Adam Rapoport, Palliative Care Consultant, Max and Beatrice Wolfe Children's Centre

Randy Zlotnik Shaul, SickKids bioethicist

Maria: "Is it fair to ask families to participate in research?"

Zlotkin Shaul: It is "fair and reasonable to offer parents the opportunity."

Rapoport: It is "unfair not to".

Newman: Asking families "should be mandatory...I see five families here who have helped me."

Elizabeth: "To not get chance for research is taking away our choice. We don't have a lot of choices."

Maria: "What are the biggest myths surrounding research?"

Rapoport: "That there is nothing to be gained by the (palliative) individual."

Newman: "That families are too vulnerable... They are often the strongest patients."

Elizabeth: "That families have too much on their plate; let us make the decision!"

Maria: "When is the right time to speak"

Rapoport: "When we chose 3 months it was more for the REB; we want to capture info as closely as possible."

Newman: "Waiting equals protectionism, you are never over it. We want real time info. Parents can decide."

Zlotkin Shaul "Problem perhaps in that REBs not part of the wider conversation. Help educate REBs so you are on the same page; if you have better data please share with them."

Maria: "Its important to see that it's not 'them', it's all of us."

Maria: "What are the next steps?"

Elizabeth: how death effects the wider family

Newman: more work on siblings, push back during the palliative phase, include the voice of the child, starting to see inutero palliative care, look at myths to debunk, work with REBs on the time barrier to enter a study after the child's death

Rapoport: descriptive studies ok, now need more experimental designs and head to head trials otherwise we are researching hospital silos

Zlotkin Shaul: an interesting model was a summer camp with senior researchers on pregnant women who took a week to meet and brainstorm challenges with research and with REBs

Nurse comment: expand to rural areas too!

Jonathan: not being asked about Sasha's death afterward felt bizarre