"a healthy dose of social networking just in time..."

The headline "SickKids receives a healthy dose of social networking just in time for the holidays" made me very happy, not the least because the arrival of Upopolis was a complete surprise. I first saw the news in a short Metro article and Zach made me smile - "“You hear nurses using words, words like febrile, so with this I can look it up" and get homework assignments, setup blogs, email and instant message. Zach again:

“It’s really user-friendly. It’s a bit more than Facebook. You can connect with other patients and friends as well, so you can keep up with them. You’re able to feel as normal as you can.”

Upopolis tags itself as "a healthy space for kids to connect" and the factsheet describes it as software as a service from the private foundation Kids' Health Links Foundation hosted by Telus on a private network at several Canadian hospitals since 2007 - it is specifically for kids to communicate with family, friends, teachers and classmates and access medical information and hospital events and resources. There is no public registration so I expect referrals are initiated with hospital and care centre staff. Techvibes writes about Christina Papaevangelou and her father Basile working to find "ways to help kids in care stay connected" and developing a partnership wtih McMaster Children’s Hospital and TELUS. Kudos to all who made it happen!

Readers of the blog may remember an earlier post about the large international forum AbilityOnline which I joined just over a year ago. So far no news of the planned upgrade and the website has news from 2007. It is sad to see such important communities trapped in hard to update one-off web platforms.

Two years ago when I spoke to SickKids technical services about family-staff web communication it was confirmed the hospital was seeking a social media platform. I am pleased they chose a patient inspired software made in Canada and along with Care Pages, SickKids now supports patient to patient and family to public communication. The tools cry out for hospital wide wireless, a service rolling out in other Canadian paediatric hospitals. Expect computers in family resources areas and on the floors to be saturated. Free wireless supports hospital family diversity since families with means have a Rogers or Bell wireless stick.

CFAN needs your help for survey on parental/caregiver presence during induction and recovery. Please circulate.

From Sue Robins of  The Canadian Family Advisory Network

Dear Friends and Colleagues:

We are writing to ask for your help in circulating a survey link for parents and caregivers about parental/caregiver presence at anesthesia induction and post-anesthesia recovery.

The survey is part of the Child and Family in the Healthcare System project of the Canadian Child and Youth Health Coalition (CCYHC). Some of you know about the project; some of you know about the Coalition, and some of you know about both, but please allow us to provide the essential background for those who don't. (Much of this information is also included in the attached PDF to be forwarded to parents and caregivers as well as on the last page of the online survey).

Background

The Canadian Child and Youth Health Coalition (CCYHC) is a collaboration of ten major national organizational and program members working together with a common vision to advance the cause of child and youth health care in Canada. We represent The Canadian Family Advisory Network (CFAN) on the Coalition's Steering Committee. You can find out more about the Coalition and its members at www.ccyhc.org<http://www.ccyhc.org/>

CCYHC has established the Child and Family in the Healthcare System Working Group to explore the ways in which children, youth, and their families are supported and included within the healthcare system, a task that entails, among other things, identifying differences in practice at various hospitals.

The Survey

The Working Group's first project is the investigation of hospital practices related to parental presence at anesthesia induction and post-anesthesia recovery. Different hospitals have different practices as to if, when, and how parents/caregivers can accompany children into the operating room until the children are asleep and in the recovery room when the children are waking up from anesthesia.

Please note that though the issue is generally called "parental presence ..." we are keen to hear from other caregivers (grandparents, foster parents, aunts, etc.) who may have been present-or who perhaps wish they could have been present-with a child or youth during induction or recovery.

We would appreciate your help in distributing the link to the survey to all parents or caregivers on your advisory council or, for those of you who work with families in a different capacity, to those parents and caregivers you think would, because of their experience with a child or youth who has had one or more surgeries, be interested in contributing.  The survey is submitted automatically electronically online, so there's no need to collect surveys - it is all paperless.

Please cut and paste the text (including the survey website link) at the bottom of this page and forward to your contacts.  (We have already sent another survey to all of the academic health centers that have paediatric surgical programs and to a number of community hospitals across Canada, and we will soon send another survey to members of youth and children's councils.) The survey takes about 20 minutes to complete.

We hope most of the parents and caregivers can complete the survey by December 15, 2009.

Survey Results

The names of all responders and the name of the hospital where their children's surgery or surgeries were performed will be kept confidential. Any reports, publications, or presentations resulting from the surgery results will contain only summary data that will not identify the parents/caregivers or the hospital. We will be happy to share the results with all those who contributed and with all the Coalition members. Working with the survey results, the Working Group, in consultation with CCYHC, will determine best practices and develop recommendations that will be shared with all the hospitals.

On behalf of our Working Group, thank you for your interest and participation. If you have any questions, please contact us by calling Melissa Clulow (CCYHC National Coordinator) at 514-656-1268 or by emailing mclulowATcheo.on.ca

Respectfully yours

Frank Gavin and Sue Robins

Co-Chairs, Child and Family in the Healthcare System Working Group

--------------------------------------

For you to cut and paste to your family contacts:

Subject:    Survey: Parent/Caregiver Presence at Surgical Induction and Recovery

Dear Friends and Families -

We are writing to ask for your help in completing a survey for parents and caregivers about parental/caregiver presence at anesthesia induction and post-anesthesia recovery.  The survey is part of the Child and Family in the Healthcare System project of the Canadian Child and Youth Health Coalition (CCYHC).

Please click on the link below to complete the online survey which asks about your experiences going with your child into surgery and the recovery room.

http://www.surveymonkey.com/s.aspx?sm=MVutJ_2b_2fdIyge6SLxx4tdgw_3d_3d

A full description of the survey is attached. This description also appears on the last page of the online survey.

The survey should take approximately 20 minutes to complete.

Please submit your responses by December 15, 2009.

Thank you very much for your time and attention - your input is important to us!

Holiday Toy Drive for SickKids

From Nov 15 - Dec 15 please join the families of Wyatt, Phoenix, Sasha, Owen and Sawyer for a holiday toy drive for children at SickKids Hospital.

All of us know first hand how tough it is to have a child we love dearly in the hospital over the holidays and the smiles these toys bring and the warmth created for the kids and families.

Toys must be new for infection control and unwrapped and will be distributed by Child Life throughout the hospital. A list of needs by age group is below with a priority request for newborns and teens. Gift cards from major retailers are welcome too. Please email wyatts-warriors@hotmail.com - to get the address to mail a gift card, for assistance if you wish to help but cannot get to a drop-off or if your business is interested in donating or being a drop off location - please let us know!

Thanks to our participating businesses and to 99.9 Virgin Radio and Talk radio 1010 for the daily public service announcements promoting the Toy Drive!

Thank you and please spread the word!

With love,

The families of Wyatt, Owen, Sasha, Phoenix and Sawyer


DROP-OFF LOCATIONS FOR NEW UNWRAPPED TOYS  

Stuff a Truck at Nurse Chevrolet Cadillac - 1530 Dundas St E, Whitby, Ontario

Stuff a Cooper at BMW / MINI Durham - 100 Achilles Rd, Ajax

The Medicine Shoppe Pharmacy - 1288 Ritson Rd N, Oshawa

Blumberg Segal LLP Barristers and Solicitors - 390 Bay St Suite 1202, Toronto

Finnish Credit Union - 191 Eglinton Ave E, Toronto

Alcona Chiropractic & Natural Health, Dr Mark Kohut - 896 Innisfil Beach Rd, Innisfil

Fenelon Falls Real Estate - 20 May St, Fenelon Falls

Dockside Restaurant - 12 Water St, Fenelon Falls

Edgetown Ford - Hwy #36, Bobcaygeon

Aimee Alabster, Wedding and Event Planning Services - 58 Boundbrook Drive, Brampton

LIST OF TOY SUGGESTIONS FOR KIDS AT SICKKIDS:

INFANTS (HIGH PRIORITY) • Rattles • Soothers • Musical toys • Blankets • Cuddly toys • Books • Infant CDs

TODDLERS / PRESCHOOL • Duplo • Building Blocks • “Little People” sets (Fisher Price®) • Board Books, Lift the flap books • Dolls • Trucks • Cuddly Toys • Make believe sets i.e., kitchen utensils, plastic food etc. • Crayons • Paper • Colouring books • Magnadoodles • Play dough (individual containers)

SCHOOL AGE • Board Games i.e., Guess Who, Candyland, Hi-Ho Cherry O, Snakes and Ladders, Connect Four etc. • Decks of Cards i.e., plain, UNO, Skip-Bo, Go Fish etc. • Cuddly toys • Books – early readers and chapter books • Markers/Crayons/Pencil Crayons • Paper/Colouring Books/Activity Books • Crayola Model Magic • Crayola Window Writers • Craft Kits (Klutz books) • Small hand held electronic games i.e., Gameboys with games

TEENS (HIGH PRIORITY) • Gift Cards (HMV, Best Buy, EB Games, Indigo) • Electronics (Xbox 360, Playstation 3, handheld gaming systems, ipods, mp3 players) • Writing Journals • Music, DVDs, video games • Word Searches/Crossword Puzzles/Sudoku • Board Games • Decks of cards • Toiletries • Sports items i.e., balls, sports cards etc…

GIFT CARDS ARE AN AWESOME WAY TO HELP AND CAN BE MAILED

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

Hello!

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.

KEYNOTE SPEAKERS

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