This Saturday night, The ParentChild Mother Goose Program® presents Talking You In , a story created and told by Dan Yashinsky with music composed and performed by Brian Katz. This is the story of a family’s journey as they make their way through the neo-natal intensive care unit, hoping that the sound of their voices telling stories, rhymes and songs will connect them with their fragile “starchild” and possibly help with his healing and theirs. It is a performance not to be missed by a very gifted storyteller and musician.
And the night also celebrates the publication of It Was Midnight on the Ocean, The Neonatal Intensive Care Unit Book of Rhymes and Stories inspired by Dan Yashinsky’s experience when his child was in the NICU, edited by Celia Lottridge of The Parent‐Child Mother Goose Program, published by The Hospital For Sick Children to be given to parents with babies in the NICU, and funded by the Neonatology Department and the Sasha Bella Fund for Family Centred Care at SickKids Foundation.
Saturday, October 30, 2010 at 8:00 pm
Doors open at 7:30
Refreshments and Reception to follow
The Hollywood Theatre at The Hospital for Sick Children
Enter at 170 Elizabeth Street and go to the Black Wing
Tickets $25
Donations in addition to this amount will receive a tax receipt. All money raised will go to support The ParentChild Mother Goose Program® which also helps parents connect with their babies and young children through rhyme and story.
To purchase tickets, phone 416 588 5234 x10, email pcmgp@bellnet.ca or order online.
Comments on "A Shattered Trust" - "Actions speak louder than words."
BLOOM blog recently published an anonymous article called "A Shattered Trust" by the mom of a young child who is on their 4rth care manager. Please read and share with colleagues. How do professionals remain accountable to all families? Who will go to bat for the family that has been struck by lightning repeatedly? Who ultimately repairs the breach in a parent's belief that some staff do not care?
I have heard many stories of care successes and challenges over four years and some of the details are mind-boggling. We can spin off easy suggestions. Shop around for a better, more understanding pediatrician, and get the foundation of care off to a good start. Go to the new coordinated complex care teams designed to help exactly these families. Go to patient reps. Speak to parents who volunteer in the hospital for ideas. We can in theory enlist any number of new supports. I would suspect this family has tried some of these routes as well if they logged 30 contacts with one unit about one proceedure. Yet for many families, care is a minefield, and this seems to particularly occur when the syndrome is not well understood or straddles several disciplines. When a parent feels they are the only true advocate for a child and are scared to bring that complex child into the institution because nothing seems to go right we all need to look long and hard at the miss and then act.
For almost a year I’ve made over 30 calls and worked with six hospital departments to find a way to better handle my daughter’s g-tube changes. My daughter is petrified of the procedure. Her hips are strapped down but I have to hold her arms while she screams, twists her upper body and turns bright red. The first time it happened I had flashbacks to when I had to restrain her for procedures in the NICU. So I've spent months trying to come up with an alternative. I’ve asked for sedation, but been given conflicting information about whether it's safe. I've asked for a child-life specialist to provide support. I've sat outside the procedure room, listening to my daughter (with my husband) scream inside. I've asked if the ‘comfort kit’ is in the room with them, only to be told it’s sitting behind me in the waiting room. I’ve asked if I can take the kit to the room and been told "No." We’ve left in a g-tube that should be changed every six months for 15 months because we can't find a solution to managing our daughter’s pain and anxiety....I hesitate to ask for help because I’ve become more disillusioned with each failure. Our professionals don't work together to solve problems and give conflicting information. And because actions speak louder than words, increasingly I’m convinced that the bigger problem is that they don't care.
I have heard many stories of care successes and challenges over four years and some of the details are mind-boggling. We can spin off easy suggestions. Shop around for a better, more understanding pediatrician, and get the foundation of care off to a good start. Go to the new coordinated complex care teams designed to help exactly these families. Go to patient reps. Speak to parents who volunteer in the hospital for ideas. We can in theory enlist any number of new supports. I would suspect this family has tried some of these routes as well if they logged 30 contacts with one unit about one proceedure. Yet for many families, care is a minefield, and this seems to particularly occur when the syndrome is not well understood or straddles several disciplines. When a parent feels they are the only true advocate for a child and are scared to bring that complex child into the institution because nothing seems to go right we all need to look long and hard at the miss and then act.
Family Centered roundup - Nursing education, Palliative Research, FCCAC, Liver, Bio-bank, Baby Book for little angels, CCCU, CFAN
Mid September I had the privilege of speaking to about 50 nurses (including just 2 male nurses), most new to SickKids, returning for extra education after 3 months of practice. I introduced Sasha, offered highlights of our nursing experience and shared a tip sheet of suggestions. We generated a good discussion particularly on ways that staff and families can work together on patient safety (e.g involve parents in medicine reconciliation and empower parents to speak up if they have any concerns). The nurse who organized the sessions remembered Sasha from 4D.
The 2010 TRAC-PG Pediatric Palliative Care Research Symposium, titled Listening to the voices of dying children: raising awareness and emerging research, was held September 29 and featured renowned anthropologist Myra Bluebond-Langner as keynote. I promise a report shortly when we get the links to the videos. Posters are being uploaded at Trac-PG.
The Family Centred Care Advisory Council engaged in a facilitated brainstorm and values clarification exercise in June and have established Education and Communication sub-committees to focus initiatives. The committee is also looking for new family and staff participants and if you are interested in working with other families and staff to help improve the child and family's experience, please read more about FCC-AC. There will be two family positions on the New Immigrant Support Network's "Champions of Cultural Competence". SickKids has also received a generous donation to the Family Resource Center and is exploring a new space to combine the reading room, About Kids Health, family centered care and research in one area for families. I also volunteered to review the Bereavement Committee final draft report and got that this week; it is an important call to action to develop a more consistent and integrated practice and to increase resources for bereaved family support. We also have the SickKids Family Education Day fast approaching in February, more on that soon.
A first Liver Program Family Education Day is being organized by Dr Binita Kamath and clinical nurse specialist Constance O'Connor to be held March 2011. Biliary Atresia and Alagille Syndrome have been picked as the foci and Binita and Connie invited The Sasha Bella Fund to participate. We are excited to be working with the Liver Program for the first time to help other children with Sasha's primary diagnosis, Alagille Syndrome. Binita and Connie are also interested in a family committee and helping with online supports for patients and their families.
Parent voice at the Labatt Family Heart Centre Bio-Bank conference was provided by Laura Celsie. Laura celebrated her nephew Wyatt, recounted his complex and very difficult life including his 11 month CCCU intensive care journey and offered feedback to staff about helpful and stressful conduct. Watch her presentation on Youtube especially the final third video for Laura's list of 11 things that doctors should know, starting with "Please don't ask me to leave my child's side" and "I need to be a part of my child's care team". Kudos to LFHC staff for responding to this difficult story with a standing ovation.
And a beautiful palliative story I have been meaning to share for many months. Four years after the death of her first born Tyler, Michelle Murray has produced a baby book for still born and palliative babies called I Will Hold You In My Heart Forever: A baby book for little angels. It is a heart-warming story. She received permission from Robert Munsch to reprint some paragraphs from "I Will Love You Forever". Thanks to a request from NICU palliative care nurse Lori Ives-Baine, the book is stocked at the 5-55 Shop at Sickkids. The book has generated great buzz. Comments from the over 1700 fans on the Facebook group shows the book is a rare resource to give a friend whose baby was still-born or died very young and it is of particular interest to midwives. The baby angel book was a labor of love and a family affair; Michelle took a loan to make the book a reality, her sister-in-law Stephanie of Trapdoor Design designed the beautifully illustrated binder and insert pages, her dad serves as bookkeeper and shipper and her brother helps with marketing. Based on the very positive feedback, Michelle is adding sections for older palliative children. You can buy the book on the Forever Heart website or in the 5Fifty5 gift shop at SickKids. There is also a video presentation of the book and a television news interview.
The Cardiac Critical Care Unit "Vital Smarts" communication training continued last week to help staff support parents, resolve issues and be accountable to families and other staff. After the training of a handful of staff earlier in the year, training was rolled out to another 50 staff. Dr Steven Schwartz confirmed there is no family council or parents currently on committees but hopes the ground work laid by this communication training will lead to new forms of staff-parent collaboration.
On October 17, the annual Canadian Family Advisory Network (CFAN) daylong workshop, that traditionally starts the annual conference of the Canadian Association of Pediatric Health Centres (CAPHC), was held in Winnipeg. I was asked to present and spoke about three related topics: a celebration of Sasha that linked her highs and lows to the hospital priorities for her family fund; initiatives we have undertaken and how they have done; and new technologies starting with this blog that assist family advisory in an age of potential mass collaboration. As families need a secure, accessible platform to manage their child's health care, we also need a platform to work with staff and other families on family centered initiatives. There were many takeaways and I am working with three other FCCAC members on a report to share. It was clear that the growth of family advisory has been challenging across the board and also that family and patient centered care advocacy and delivery is growing beyond councils and committees toward networks of linked teams and groups that need to be integrated into hospital leadership, learning and practice in a very focused way. This was my first health care conference, first keynote and first time meeting other family members outside SickKids who work within pediatric hospitals so naturally it was an amazing learning and networking experience and I promise a fuller report. It was really fantastic to spend some quality time with Kariym, Jodi and Venetia from FCCAC and Janis from NICU FCC.
The 2010 TRAC-PG Pediatric Palliative Care Research Symposium, titled Listening to the voices of dying children: raising awareness and emerging research, was held September 29 and featured renowned anthropologist Myra Bluebond-Langner as keynote. I promise a report shortly when we get the links to the videos. Posters are being uploaded at Trac-PG.
The Family Centred Care Advisory Council engaged in a facilitated brainstorm and values clarification exercise in June and have established Education and Communication sub-committees to focus initiatives. The committee is also looking for new family and staff participants and if you are interested in working with other families and staff to help improve the child and family's experience, please read more about FCC-AC. There will be two family positions on the New Immigrant Support Network's "Champions of Cultural Competence". SickKids has also received a generous donation to the Family Resource Center and is exploring a new space to combine the reading room, About Kids Health, family centered care and research in one area for families. I also volunteered to review the Bereavement Committee final draft report and got that this week; it is an important call to action to develop a more consistent and integrated practice and to increase resources for bereaved family support. We also have the SickKids Family Education Day fast approaching in February, more on that soon.
A first Liver Program Family Education Day is being organized by Dr Binita Kamath and clinical nurse specialist Constance O'Connor to be held March 2011. Biliary Atresia and Alagille Syndrome have been picked as the foci and Binita and Connie invited The Sasha Bella Fund to participate. We are excited to be working with the Liver Program for the first time to help other children with Sasha's primary diagnosis, Alagille Syndrome. Binita and Connie are also interested in a family committee and helping with online supports for patients and their families.
Parent voice at the Labatt Family Heart Centre Bio-Bank conference was provided by Laura Celsie. Laura celebrated her nephew Wyatt, recounted his complex and very difficult life including his 11 month CCCU intensive care journey and offered feedback to staff about helpful and stressful conduct. Watch her presentation on Youtube especially the final third video for Laura's list of 11 things that doctors should know, starting with "Please don't ask me to leave my child's side" and "I need to be a part of my child's care team". Kudos to LFHC staff for responding to this difficult story with a standing ovation.
And a beautiful palliative story I have been meaning to share for many months. Four years after the death of her first born Tyler, Michelle Murray has produced a baby book for still born and palliative babies called I Will Hold You In My Heart Forever: A baby book for little angels. It is a heart-warming story. She received permission from Robert Munsch to reprint some paragraphs from "I Will Love You Forever". Thanks to a request from NICU palliative care nurse Lori Ives-Baine, the book is stocked at the 5-55 Shop at Sickkids. The book has generated great buzz. Comments from the over 1700 fans on the Facebook group shows the book is a rare resource to give a friend whose baby was still-born or died very young and it is of particular interest to midwives. The baby angel book was a labor of love and a family affair; Michelle took a loan to make the book a reality, her sister-in-law Stephanie of Trapdoor Design designed the beautifully illustrated binder and insert pages, her dad serves as bookkeeper and shipper and her brother helps with marketing. Based on the very positive feedback, Michelle is adding sections for older palliative children. You can buy the book on the Forever Heart website or in the 5Fifty5 gift shop at SickKids. There is also a video presentation of the book and a television news interview.
The Cardiac Critical Care Unit "Vital Smarts" communication training continued last week to help staff support parents, resolve issues and be accountable to families and other staff. After the training of a handful of staff earlier in the year, training was rolled out to another 50 staff. Dr Steven Schwartz confirmed there is no family council or parents currently on committees but hopes the ground work laid by this communication training will lead to new forms of staff-parent collaboration.
On October 17, the annual Canadian Family Advisory Network (CFAN) daylong workshop, that traditionally starts the annual conference of the Canadian Association of Pediatric Health Centres (CAPHC), was held in Winnipeg. I was asked to present and spoke about three related topics: a celebration of Sasha that linked her highs and lows to the hospital priorities for her family fund; initiatives we have undertaken and how they have done; and new technologies starting with this blog that assist family advisory in an age of potential mass collaboration. As families need a secure, accessible platform to manage their child's health care, we also need a platform to work with staff and other families on family centered initiatives. There were many takeaways and I am working with three other FCCAC members on a report to share. It was clear that the growth of family advisory has been challenging across the board and also that family and patient centered care advocacy and delivery is growing beyond councils and committees toward networks of linked teams and groups that need to be integrated into hospital leadership, learning and practice in a very focused way. This was my first health care conference, first keynote and first time meeting other family members outside SickKids who work within pediatric hospitals so naturally it was an amazing learning and networking experience and I promise a fuller report. It was really fantastic to spend some quality time with Kariym, Jodi and Venetia from FCCAC and Janis from NICU FCC.
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