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.
Thursday, October 29, 2009
Thursday, October 22, 2009
2009 Sasha Bella Fun Day - a big thanks!
Photo: Bryan McBurney
Hello!
We want to thank all of you for making Sunday's fun day such an amazing time! Families, performers and volunteer - you were all so wonderful!
We feel lucky that such a generous and talented bunch of people helped us celebrate Sasha and help SickKids and Bloorview on such a beautiful day. Many people have told us they felt the love in the room and all of you played a big, big part in that.
Warmest regards and a BIG thank you,
Pamela and Jonathan
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
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
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
Not unexpectedly there has been a big dip in donations this year however its a shocker to see we are running less than half. The event website is still open for donations if you can spare something - every little bit counts. Here is the secure link to support patient and family centred projects at SickKids and Bloorview Kids Rehab!
Wednesday, October 14, 2009
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 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.
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).
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
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
Tuesday, September 29, 2009
CCCU adopts Vital Smarts communication training
SickKids CCCU have started a new communication program based on Vital Smarts (Health Care) training for Crucial Conversations and Crucial Confrontations, started from a study aiming to "create cultures of safety" in partnership with the American Association of Critical Care Nurses and leading to their their joint publication, "Silence Kills: The Seven Crucial Conversations for Heathcare".
By providing your info you can download an occupational questionaire that identifies key team and communication barriers.
- 84% of doctors have seen co-workers taking shortcuts that could be dangerous to patients
- 88% of doctors work with co-workers who show poor clinical judgement
-fewer than 10% of physicians, nurses and other clinical staff directly confront their colleagues about their concerns
By providing your info you can download an occupational questionaire that identifies key team and communication barriers.
Thursday, September 24, 2009
Dispelling Myths: Benefits and Challenges in Palliative Research with Children and Families
PEDIATRIC PALLIATIVE CARE INAUGURAL FULL DAY RESEARCH SYMPOSIUM
DISPELLING MYTHS: BENEFITS AND CHALLENGES IN RESEARCH WITH CHILDREN & FAMILIES
Grand Rounds • Panel Discussion • Café Scientifica • Parent & Researcher Workshops • Evening Social
Open to family members, researchers, clinicians, and volunteers.
WEDNESDAY OCTOBER 14, 2009 at SickKids
FREE REGISTRATION:
Laura Beaune: laura.beauneATsickkids.ca
More information tracpg.ca
Team for Research with Adolescents and Children in Palliation and Grief
Sponsored by:
SickKids Foundation
Sasha Bella Fund for Family-Centred Care
Friday, September 04, 2009
October 18, 2009 fun-day program and sponsor update
Fund-Raising Website launched
Please register, setup a pledge page and invite friends and family and co-workers to help you, or use the donate option.
With the SickKids Foundation web tools, fund-raising doesn't get any easier than this! In a few minutes you can setup a page, customize the picture and text or use existing content and send emails from the website or share the event page or your sponsor page via your Facebook, Twitter or LinkedIn accounts.
Be a part of family-centred care innovation at SickKids and Bloorview Kids Rehab. Help families and staff communicate and collaborate better during a family's scariest time.
Register for the October 19, 2009 Fun Day and join us on the day
Setup pledge page and invite friends and family to sponsor you as pledges made up the bulk of last year's donations
Sponsor a friend or family member who has setup a pledge page
Donate to The Sasha Bella Fund for Family Centred Care
Update on Program Highlights
One of the clowns will tell you more about their amazing program during the Opening welcome.
Did you know that the Bloorview clowns are included in team family rounds at Bloorview? See the therapeutic clowns in action on a CBC program that also looks at children's fear of clowns.
Exciting entertainment
Sho Mo + The Monkey Bunch: a huge crowd favorite at the 2008 fundraiser returns again!
Charlie of Little Fingers Music: kid's musician, teacher and composer engages us in song and performance
Rhythmic by Nature: interactive drumming with Terri Segal
Toronto Dance Vibe: dance performance
Deb Maes: phenomenal kids musician with a golden voice mixes up kids songs and folk favorites
Noah Klar: Sasha's uncle who performed at her first birthday party will sing songs from his upcoming album
Yummy Nut Free Food and Snacks
RaviSoups returns with a delicious soup like only Ravi and Ratha make.
The Stockyards Tom Davis will fill his smoker for us with brisket, chicken and ribs, along with all beef dogs and great fries. Checkout pictures of the amazing fare at The Stockyards.
Mildred's Temple Kitchen: phenomenal deserts by legendary Toronto fine dining establishment formerly called Mildred Pierce
Salads, juices, fresh popcorn and other yummy snacks.
Games and Events
Carnival games: Hockey Slapshot (clinic and high score prize), Golf Putt, High Striker, young-uns duckpond
Young Choung Taekwando Academy demo
Caricaturist
Facepainters
Arts and crafts
Silent Auction
Flight and 4 nights for two in Vegas's Circus Circus Casino and Hotel courtesy of Pacesetter Travel
One day golf package for four donated by Muskoka Bay Club, one of the best new golf courses in Canada
Old Timers from the hall of fame hockey game, Nov 8.
Theatre tickets and season's passes.
Kids toys and clothes.
Fitness and spa classes.
Professional photo sessions.
Gift baskets.
Software and computer games
To support the silent auction, or get a solicitation letter to help you, please email fundATsashabellafund.com - all sponsors receive a gift in kind receipt from SickKids Foundation.
The 2009 committee
A big thanks to our amazing committee!
Alison Goldman, Evette Wade, Jonathan Blumberg, Lisa Singer, Lisa Leung, Pamela Stein, Rachel Moses, RonniLyn Pustil
Major Sponsors & Silent Auction Donors
Blumberg Segal LLP
Innovative Financial Partners Ltd
Microsoft Canada
Mildred Pierce Group
Muskoka Bay Club
Pacesetter Travel
Ravi Soups
Sho Mo + The Monkey Bunch
SpinMaster
The Stockyards
Sponsors
Beverley Daniels Photography, Blue Banana Market, Cadbury, Canada's Accident Rehab Institute, Capital C Communications, Deborah Maes, Delta Art and Mirror, Earth Child, Elmwood Spa, JordanPrussky.com, Kosoy & Bouchard, Little Fingers Music, Nautical Mind, Nightwood Theatre, Mongrel Meda, My Monkey's Uncle (Noah Klar), Parpar, Playful Minds, Pilates Room, Red Thread Design, Rhythmic by Nature, Sandylion Sticker Designs, Satori Urban Wellness, SavvyMom Media, Spynga, Starbucks, Supermarket, Theatre Passe Muraille, TheWire.ca, Young Choung Taekwando Academy
We will update this page until our next update.
Friday, July 24, 2009
Please help with silent auction and event promotion outreach
Over 600 individuals and corporations helped us last year. It was a boom year however and the economic climate has definately chilled. So far we have had some great responses for silent auction requests however we can use more. So if you can provide any item or service, or you know someone else who can, we would love to hear from you!
Favorite items include signed sports memorabilia, restaurant vouchers, tickets to cultural events or locations, health and beauty services, toys and games. The sky is the limit and no item is too small.
We are also looking for food sponsors. If you have a favorite easy to eat on your feet food or a relationship with a chef, distributor or shop we would love them to know about our event!
You can reach us at fundATsashabellafund.com (replace the AT with @) and we will be happy to followup with the person or company directly.
All contributors will be listed on our day of event promotion and the website.
Thanks very much for your consideration!
Favorite items include signed sports memorabilia, restaurant vouchers, tickets to cultural events or locations, health and beauty services, toys and games. The sky is the limit and no item is too small.
We are also looking for food sponsors. If you have a favorite easy to eat on your feet food or a relationship with a chef, distributor or shop we would love them to know about our event!
You can reach us at fundATsashabellafund.com (replace the AT with @) and we will be happy to followup with the person or company directly.
All contributors will be listed on our day of event promotion and the website.
Thanks very much for your consideration!
Calling all performers and event specialists!
We are firming up the entertainment lineup for our October 18, 2009 fundraiser for Sickkids and wish to hear from any skilled kid's performers.
* MUSICIANS
* ARTS & CRAFTS SPECIALISTS
* OTHER PERFORMERS
Please email us at:
fundATsashabellafund.com (replace AT with @)
We offer honorariums up to $125 per person.
The event will be 10am to 3pm at the beautiful new Wychwood Artscape Barns on Christie just south of St Clair.
If you know someone special, please pass on this post for us. Thanks!
* MUSICIANS
* ARTS & CRAFTS SPECIALISTS
* OTHER PERFORMERS
Please email us at:
fundATsashabellafund.com (replace AT with @)
We offer honorariums up to $125 per person.
The event will be 10am to 3pm at the beautiful new Wychwood Artscape Barns on Christie just south of St Clair.
If you know someone special, please pass on this post for us. Thanks!
Wednesday, July 22, 2009
CHD Education Day for Families
The first Labatt Family Heart Centre family day will be held Saturday September 12, 2009 and is called Healthy today, healthy tomorrow: An information day for children and families with congenital heart disease at the 525 Bay Marriott close to Sickkids.
AGENDA Saturday, September 12, 2009
8:00 AM - 8:40 AM Registration and breakfast
8:40 AM - 8:50 AM Welcome and introduction
8:50 AM - 9:10 AM Innovations in heart health
9:15 AM - 10:30 AM Physical activity and exercise
10:30 AM - 11:00 AM Refreshment break
11:00 AM - 12:00 PM Healthy Eating
12:00 PM - 1:00 PM Lunch
1:00 PM - 2:00 PM Relationships, independence, self-esteem and having a say in your health
2:00 PM - 2:45 PM Moving towards adult care
2:45 PM - 3:00 PM Refreshment break
3:00 PM - 3:30 PM Sharing lived experiences with congenital heart disease
3:30 PM - 4:15 PM Networking with others
Input was received from 70+ parents sampled during several months of clinic visits. Hopefully future days will include the young child and children who are palliative.
Register online for free
"This day aims to provide children and their families with up to date information on congenital heart disease and health related research. Sessions are catered to the learning needs of children and their families 5 years of age and up."
AGENDA Saturday, September 12, 2009
8:00 AM - 8:40 AM Registration and breakfast
8:40 AM - 8:50 AM Welcome and introduction
8:50 AM - 9:10 AM Innovations in heart health
9:15 AM - 10:30 AM Physical activity and exercise
10:30 AM - 11:00 AM Refreshment break
11:00 AM - 12:00 PM Healthy Eating
12:00 PM - 1:00 PM Lunch
1:00 PM - 2:00 PM Relationships, independence, self-esteem and having a say in your health
2:00 PM - 2:45 PM Moving towards adult care
2:45 PM - 3:00 PM Refreshment break
3:00 PM - 3:30 PM Sharing lived experiences with congenital heart disease
3:30 PM - 4:15 PM Networking with others
Input was received from 70+ parents sampled during several months of clinic visits. Hopefully future days will include the young child and children who are palliative.
Register online for free
Saturday, July 04, 2009
Journal of the Association for Research on Mothering - request for editorial participation for issue on "MOTHERING, BEREAVEMENT, LOSS AND GRIEF"
[This is a post of an emailed request for participation from JARM]
Dear ARM Members and Friends,
The Journal of the Association for Research on Mothering has planned to publish JARM Vol. 12.2 (fall/winter 2010) on the topic of
"MOTHERING, BEREAVEMENT, LOSS AND GRIEF."
We are seeking 3 guest editorial board members: 2 faculty and 1 graduate student for the editorial board of this issue.
Duties include preparing over email the call for papers beginning immediately July 2009 (2-3 hours) and then10-20 hours devoted to reading all article submissions and making decisions re: what should be included journal issue (May/June 2010), as well as a 4 hour meeting in Toronto in June/July 2010 to finalize article selection in conjunction with other ARM Journal Vol 12.2 board members.
Please note ARM is unable to pay travel costs for volunteer board members...but we are happy to send a letter of invitation you can forward along to your university/college when seeking funding. One must be a member of ARM to sit on a guest editorial board: http://www.yorku.ca/arm/armmembership.html
PLEASE EMAIL aoreilly@yorku.ca asap with a short note/bio about yourself and your expertise/work/interest in this area if you would like to be considered for the Journal Advisory Board for Vol 12.2.
PLEASE NOTE: Please only volunteer if you are certain you can assist with all duties listed above.
We've had some issues with recent committees/ have not been able to locate some committee members at the crucial times outlined above
(leaving much of the work to ARM Director and Staff).
Please only volunteer if you can truly commit the time.
Thank you in advance,
Andrea O'Reilly
Association for Research on Mothering (ARM)
Demeter Press
726 Atkinson, York University
4700 Keele Street
Toronto, ON,
Canada, M3J 1P3
416-736-2100 x60366 (fax) 416-736-5766
arm@yorku.ca
www.yorku.ca/arm
Dear ARM Members and Friends,
The Journal of the Association for Research on Mothering has planned to publish JARM Vol. 12.2 (fall/winter 2010) on the topic of
"MOTHERING, BEREAVEMENT, LOSS AND GRIEF."
We are seeking 3 guest editorial board members: 2 faculty and 1 graduate student for the editorial board of this issue.
Duties include preparing over email the call for papers beginning immediately July 2009 (2-3 hours) and then10-20 hours devoted to reading all article submissions and making decisions re: what should be included journal issue (May/June 2010), as well as a 4 hour meeting in Toronto in June/July 2010 to finalize article selection in conjunction with other ARM Journal Vol 12.2 board members.
Please note ARM is unable to pay travel costs for volunteer board members...but we are happy to send a letter of invitation you can forward along to your university/college when seeking funding. One must be a member of ARM to sit on a guest editorial board: http://www.yorku.ca/arm/armmembership.html
PLEASE EMAIL aoreilly@yorku.ca asap with a short note/bio about yourself and your expertise/work/interest in this area if you would like to be considered for the Journal Advisory Board for Vol 12.2.
PLEASE NOTE: Please only volunteer if you are certain you can assist with all duties listed above.
We've had some issues with recent committees/ have not been able to locate some committee members at the crucial times outlined above
(leaving much of the work to ARM Director and Staff).
Please only volunteer if you can truly commit the time.
Thank you in advance,
Andrea O'Reilly
Association for Research on Mothering (ARM)
Demeter Press
726 Atkinson, York University
4700 Keele Street
Toronto, ON,
Canada, M3J 1P3
416-736-2100 x60366 (fax) 416-736-5766
arm@yorku.ca
www.yorku.ca/arm
Tuesday, June 16, 2009
An Imaginative Partnership: Parents and the doctors who care for their children - Frank Gavin
Frank Gavin's contribution to the May/June 2009 Paediatrics and Child's Health is a must-read for staff and families. He draws on parent/patient feedback and two decades of hospital and health care involvement to tease out themes that resonate with parents when it comes to staff engagement, identifies core barriers to parent partnership and offers vivid, at times surprising reflections:
Thanks Frank for this rich and beautiful exploration of staff-parent partnership in hospital and at home. The focus on the mom's map I think is an inspired valuation of work that some parents already do informally. The question "How do staff help parent's and children better navigate?" is a constant refrain in hospitals and yet parent's are often doodling and inking the links in care for themselves. Staff and families could create these maps together as a component of that imagining relationship. Should a parent wish to create a map for themselves to show staff, or work on it jointly, these maps could be a super tool and point of reference for a clinic visit and an excellent accompaniment to family white boards, journals and binders. They could start as hand-drawn sketches and then move to PowerPoint templated files. Maybe one-day a clever developer with a small budget could create a website mapping tool available anywhere and anytime online or on the network. Read the full article here.
One quality I expected this mother or some other parent to identify as essential in a paediatrician was never mentioned: empathy. Instead, what she and others seemed to be hoping for was something best called imagination... a need not for the doctors to be feeling what they were feeling but to comprehend the contours of their lives, at least once, from the inside.He also includes a parent 'map' with almost 30 circles of care and supports created by the mom of a child with cerebral palsy that dramatically shows the complexity of the family's life:
She created an earlier version to help herself and others get an overview of what she called the elements of her son's care and the people involved in that care. More particularly, she had come to realise and to worry profoundly, given life's uncertainties, that no one else possessed anything close to her knowledge of all those elements that made her son's life the wonderful but difficult life it was and is.
Thanks Frank for this rich and beautiful exploration of staff-parent partnership in hospital and at home. The focus on the mom's map I think is an inspired valuation of work that some parents already do informally. The question "How do staff help parent's and children better navigate?" is a constant refrain in hospitals and yet parent's are often doodling and inking the links in care for themselves. Staff and families could create these maps together as a component of that imagining relationship. Should a parent wish to create a map for themselves to show staff, or work on it jointly, these maps could be a super tool and point of reference for a clinic visit and an excellent accompaniment to family white boards, journals and binders. They could start as hand-drawn sketches and then move to PowerPoint templated files. Maybe one-day a clever developer with a small budget could create a website mapping tool available anywhere and anytime online or on the network. Read the full article here.
Saturday, June 06, 2009
happy birthday Sash
Here's sister Eve looking at you Peach.
June 6 was Sasha's birthday, June 20 her death-day and June 21 her sister Mia's birthday. Needless to say, June is one helluva month for our family. Pamela pushed the walk to October so we could take it easy, and it has been a month of playing in the garden, planting, bicycling, wagon rides, dancing, bbques. Mia and Eve know Sasha's name and can recognize her in a picture. I expect anytime Mia will ask where Sasha is. Maybe we will have cake and candles on Sasha's birthday after Mia knows more.
She is very much in our hearts. I have to remind myself she is more than the sum of my questions about her care and our work at Sickkids. She was an incredible girl and I feel blessed for the brief time we were physically together. When I recall exact moments of care I am transported by waves of love and grief to heights and depths not imagined.
Thursday, May 28, 2009
A new Patient Safety Centre links Sickkids, Sunnybrook and U of T Faculty of Medicine
University of Toronto Faculty of Medicine has partnered with Sunnybrook Health Sciences Centre and the Hospital for Sick Children to create a new University of Toronto Patient Safety Centre that will "foster novel research and education projects aimed at improving patient safety both locally and internationally" and "provide a focus for collaboration across the Toronto Academic Health Science Network including all the affiliated hospitals and all of the health science and related programs at the University." (my emphasis).
This is exciting news because Patient Safety work positively aligns families and staff collaboration efforts. Patient safety is a top level shared focus. Patient Safety research also squarely focuses on the communication problems that account for as much as 60% of sentinel (death and serious injury) events and continuously improved communication is at the heart of family centred interprofessional practise. Patient Safety began as a parent movement advocating new proceedures to learn from and eliminate error and grew with academic research, education, hospital quality and risk management reports and changes to practise, from surgery checklists to hand wash campaigns to involving patients and parents at Rounds and with medications to new thinking on medical error disclosure.
Patient Safety may very well be the communication glue and 'bridge' linking the family-centred bubble around the patient and the interprofessional bubble around the team(s).
Joining Director Dr. Kaveh Shojania as co-lead is Dr. Anne Matlow, Medical Director of Patient Safety and the Director of the Infection Prevention and Control at SickKids Hospital in Toronto.
This is exciting news because Patient Safety work positively aligns families and staff collaboration efforts. Patient safety is a top level shared focus. Patient Safety research also squarely focuses on the communication problems that account for as much as 60% of sentinel (death and serious injury) events and continuously improved communication is at the heart of family centred interprofessional practise. Patient Safety began as a parent movement advocating new proceedures to learn from and eliminate error and grew with academic research, education, hospital quality and risk management reports and changes to practise, from surgery checklists to hand wash campaigns to involving patients and parents at Rounds and with medications to new thinking on medical error disclosure.
Patient Safety may very well be the communication glue and 'bridge' linking the family-centred bubble around the patient and the interprofessional bubble around the team(s).
Joining Director Dr. Kaveh Shojania as co-lead is Dr. Anne Matlow, Medical Director of Patient Safety and the Director of the Infection Prevention and Control at SickKids Hospital in Toronto.
Saturday, May 16, 2009
Go well Brave Warrior
Today Wyatt said goodbye to his mom and the Celsie family and entered the hearts of all those who met or heard of him. He touched so many in his incredibly brave life and was so lucky to have such a devoted mom beside him every day on his difficult journey. Lisa I hope you can take some comfort in knowing the world is a better place for Wyatt and that we are better for knowing your son. Hamba gahle Wyatt.
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This is a tribute to Sasha and all parents who learn their baby has complex medical complications and must decide how, when and if to intervene. Sasha was a little miracle who touched many over 744 days. Here we celebrate her and try help families and staff navigate large care setting. The blog begins on return home, expecting Sasha's death within days, and begins five weeks at home. When her soul took flight June 20, 2006, sister Mia was born 11 hours later, followed by sister Eve in November 2007.