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

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:

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.

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.

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.

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.

Physical therapy benefits ICU patients

A recent controlled trial of 104 patients on ventilators in an intensive care unit confirms that "Co-ordinating the efforts of doctors, physical and occupational therapists and nurses can achieve better outcomes in terms of the survival and mental and physical recovery of critically ill patients receiving mechanical ventilation."

"Among the 49 patients who were assigned to early exercise and mobilization — bathing, dressing, eating, grooming, transferring from bed to chair, and using the toilet — 59 per cent were able to walk unaided and carry out these tasks of daily living after discharge.

In comparison, 35 per cent of the 55 patients in the control group who received standard care were able to achieve the same "independent functional status" over four weeks of followup.

People who received the early physical therapy intervention also suffered half as many days of delirium in the ICU (2.0 days) as those in the control group (4.0 days).

Intervention patients also needed a ventilator for fewer days while in ICU (23.5 days versus 21.1 days for control), the researchers found.

"A strategy for whole-body rehabilitation — consisting of interruption of sedation and physical and occupational therapy in the earliest days of critical illness — was safe and well tolerated, and resulted in better functional outcomes at hospital discharge, a shorter duration of delirium, and more ventilator-free days compared with standard care," the study's authors concluded."

As a family-centred care support, the integrated Rehab team can also help interested parents learn how to safely touch their sedated or ventilated child. What about helping parents interested in doing more than read to their child and stroke their hair - is there a place for physical therapists to show interested parents basic forms of therapeutic touch or tiny tot massage? There is debate about the exact therapeutic benefits of touch. Would parents feel less stress or higher satisfaction ratings? Can parental touch in the ICU contribute to healing?

Here is the CBC article on research into physical therapy benefits for ICU patients.

Palliative researcher Kim Widger seeks to interview families

A 2007 Canadian study estimates that between 5% and 12% of dying children and their families receive specialized palliative care and counselling from a dedicated palliative care program. There is also no consistent followup by the health care system with families after the child's death. To help remedy this reality, Kim Widger, one of the above study researchers, has begun research to develop a survey that can be sent to every family who experiences the death of a child so the health care system can improve palliative care and support. Kim's study has been supported by the Innovation Fund Into Palliative Care Research that the Sasha Bella Fund contributes to. If you know a family whose child has died, who might want to share their experience, whether they were supported by palliative care services or not, we would be very grateful if you can forward them the detailed research description and call for family participation which includes Kim's contact information. The focus group interviews will be held in Toronto and Hamilton over the coming weeks.

To participate or ask any questions about the study please contact Kim Widger at 416-
978-2859 or by email at kim.widgerATutoronto.ca

Measuring the Quality of Children's End-Of-Life Care: Summary Of Research Project by Kim Widger

A child’s death has a widespread and long-lasting impact on parents, siblings, extended family, the community and those who care for the child. Therefore it is important that the care be of the highest quality.

In this research we are developing and testing a survey which asks bereaved parents to report on various aspects of care provided to their child and family before, at the time of, and following the death of their child. Through a review of existing research with parents we have identified care needed in five areas by parents from health professionals in order to have high quality care. The areas are: connect with families, involve parents, alleviate suffering, share information, and provide bereavement care. The research has three phases. In Phase I will have focus groups with parents. I will ask parents what they believe is important to quality end-of-life care for children and their families. Phase 2 will involve creating the survey questions about quality care. The questions will be based on what parents said was important during the focus groups. When all the questions are created, we will ask health professionals and parents to review the questions to make sure they are clear and easy to understand. We will also ask if the questions seem to be about quality care and if anything is missing. Between 5 and 10 parents will take part in Phase 2 of the study. Phase 3 of the study will involve about 100 mothers. These mothers will answer all of the questions so we can learn about the quality of care that they received. We will also see how well the questions work to measure the quality of children’s end-of-life care. Part of the study will also look at the best way to ask parents about the care they received and to make sure that these type of questions do not cause a burden to parents.

The survey developed in this study will provide a way for health professionals, health systems, and policy makers to improve care provided to families facing the death of a child. My hope is that once the survey is developed and is shown to work well to measure the quality of care, it will be used in hospitals across Canada to give bereaved parents the chance to give feedback about all of the good and not so good things they experienced so health professionals are always listening to parents and working to give the highest quality care to families.

"One tiny soul, one big forest" is an amazing sharing

It is so rare to read an article on sick children and experience a sense of calm reflection so I was very moved by how Andee Pelan shares the story of her daughter Sadie Sioux who died at age 4 months waiting for a heart transplant. "Any decision you make is the right decision because it's based on the information you have at the time. You have the best intentions – don't bother with regrets, with `if onlys.' There is no sense in that" says Andee. At the same time, "Answers are a dime a dozen. It's questions that are important." Andee reminds us to cherish each moment with our youngsters, be present for the living and ask constructive questions. Thanks to Andee for sharing Sadie with us and to Diane Flacks for connecting readers with her and Geri's beautiful Mother's Day memorial. You can read the article here.

Exciting CCCU family centred initiatives

Here are some initiatives, pilots and family related news from The Cardiac Critical Care Unit, the ICU for the Labatt Family Heart Centre.

Renovation of Room 53 for long stay patients

Arguably the biggest structural change to the CCCU in years will be the complete renovation of the large room 53 facing out onto the Atrium as a long stay location. Improvements include all new decorations to make the room more attractive, more privacy for individual patients and families, new lighting that can be dimmed for each bedside and the turning of the storage room into a play and therapy room. This renovation has been in the planning for almost two years and apparently the work is now imminent.

'My Child's Day' program piloted

Alison Hassall, a Physiotherapy Academic and Clinicial Specialist, and her PT colleagues have been working diligently on 'My Childs Day', a binder that will give parents instructions, diagrams and care plans from all services helping the family. Alison has spent over a year developing the program, consulting with all services in the CCCU and stakeholders concerned that care data was stored outside the computer system, and then piloting the project. This Rehab championed family centred pilot sprang from a staff sense that patient care was becoming increasingly represented by data separated by discipline into separate spreadsheets and that this data was neither accessible nor particularly comprehensible to parents. Nor can the SIMs computer system import other file types like Word documents, pictures etc. Families also want both cutting edge medical support and continuing and expanded relationships with PTs, OTs, dieticians, respiratory therapists and other allied professionals. We are very excited about this family centred initiative and plan to hold a design contest to create an extremely functional 'binder' that could be used by other teams in the hospital. We will be able to share more over the coming months.

New APN in the CCCU assists families and staff

If there is one missing patient support that sums up the difference between a ward and an ICU it is the lack of Nurse Practitioners. These highly trained nurses really get to know your child and feed this textured patient and family information to medical staff. Nursing staff are very excited that Linda Fazari has been rotated from 4 into the ICU as a new Adanced Practise Nurse role in the CCCU to float where needed; staff joke that Linda is now "taking patients" as she regularly follows several patients and families. The experience, knowledge of 4, non-rotating presence and ability to assist both families and other staff was hailed by fellow nurses who shared this exciting initiative.

Parent coffee group extends from 4D to CCCU

I was very happy to hear the 4D parent coffee group, started by social worker Ruta Niedra and colleagues in 2006 will now be extended to the CCCU. Yeah!! Currently about 5-8 parents participate each Friday afternoon and a social worker organizing the groups described the parent ability to air concerns and share information as nipping problems in the bud. Parents are given a feedback sheet to fill out before they leave. It is fantastic news that CCCU parents can talk with other parents in a staff supported environment.


Other Initiatives:

* CCCU is exploring having a nurse who initially meets the family continue to checkin on the patient and family to offer communication and contact consistency. This Contact Nurse will be of particular help to long stay patients and patients facing great uncertainty and their families assimilating lots of new information and getting comfortable with a new team.

* the CCCU welcome binder is to be updated and staff are updating cardiac articles at AboutKidsHealth.

* the Labatt Family Heart Centre "Family Day" will be held in September

* a Transition Day event to support patients approaching adult care will be held in May

Happy Second Birthday Wyatt!!

April 27 is the second birthday of a very special little man named Wyatt. I first heard of Wyatt in November and I was very moved to actually meet him and his mom just a few weeks ago. Wyatt has spent the last 11 months in the Cardiac Critical Care Unit. He has spent all but one night of his brave life at Sickkids Hospital. His mom, Lisa Celsie, has been by his side throughout, loving him, helping care for him, working with staff and riding a rollercoaster of hope, incredible medical challenge and personal sacrifice. Aunt Laura Celsie and the family have held toy drives and a golf fundraiser and are now working with a director of CCCU on a new program that will help staff support long stay children in the CCCU. Today is a huge milestone for Wyatt and his aunt Laura will surprise him with a birthday cake of his favorite movie, Madagascar.

Laura Celsie describes Wyatt as "an amazingly strong and brave little boy who has a smile that would light up any room, and has taught us more about life, love and strength than anyone else I have ever met in my life... Now we are just enjoying life with him, and teaching him new things, and trying to get them home. He enjoys pudding, both eating it and painting with it, and loves cheesecake. He plays with a bedfull of balls, and just this week got to go outside for the first time in over a year,” says Celsie. He blows kisses. “These are really little things, but when you see what we’ve been through, they’re big things."

In February, Lisa was told there were no more medical options for Wyatt and so they are working with CCCU to bring Wyatt home. This week he has been fighting pneumonia and has been uncomfortable as he is weaned from IV to oral morphine. Bloorview has been working on a trolley for his ventilator, oxygen, feeding pump, suction machine and oximeter and now he can spend up to 9 hours on a trach mask with a flexible oxygen hookup.

The family has been busy getting his story out and raising awareness about congenital heart defects (CHDs). You can see Wyatt in Metro and on the front cover in Durham. Here is a link to his totsites journal. Wyatt's story has also been on TV: here is news about the toy drive (see at 8 min 45 seconds) and interviews with Laura and Dr Steven Schwartz, CCCU Head (see at 24 mins).

Wyatt's Warriors are in the full swing of preparations for the Golf Tournament to raise funds for a new training program in the CCCU and I have posted Laura's invitation as well below. This families journey deeply moves me. If you are a golfer, please consider joining them in June for a day on the links and hopefully some details of the CCCU program. The Sasha Bella Fund is very excited by this ICU initiative and grateful for the opportunity to tell you about Wyatt.

Happy second birthday Wyatt!

Wyatt's Warriors 2nd Annual Charity Golf Tournament!!!

(A letter from Laura Celsie of Wyatt's Warriors, a Sickkids family fund setup in honor of Wyatt to support the Cardiac Critical Care Unit)

Hello everyone!

We are now getting ready for our 2nd Annual Wyatt's Warriors charity Golf Tournament! The weather is (hopefully) warming up now, and spring is in the air, and it is time to polish your clubs and shine your shoes!

Come out and join us for a great day of fun, while supporting an amazing cause. Our little Wyatt continues to show us what an amazing little boy he is every single day, and we need to continue to show him and his friends our support. The money raised this time will be going to a new special long term project in the Cardiac Critical Care Unit that is focusing on the care of long term patients in the CCCU. Wyatt is an inspiration for this.

Please remember to spread the word. Anyone at all is welcome to come to the golf tournament, and the more the merrier. Let's fill the course this year! 4 people per team, but singles or doubles are also welcome, we can pair you up!

We need to spread awareness of Congenital Heart Defects. 1 in 70 Canadian newborns will be born with 1 of the 35 known types. CHD's are the #1 birth defect, and the #1 cause of death from a birth defect. CHD's kill more children every year than ALL childhood cancers combined. Only 1 in 800 babies are born with Down Syndrome, yet there is routine prenatal screening done for downs, and not for CHD's. We need to change this, and one day, with your continued support, we will.

Here is the info for the upcoming golf tournament!

Saturday June 6th, 2009
Newcastle Golf and Country Club
Shotgun start at 12:30pm

$130 per person includes golf, cart, and a delicious steak dinner (vegetarian options are available)
Non golfers $30 per person for dinner

Silent auction, raffles, door prizes and more! We are already accumulating some great prize and auction items, so come on out and have an awesome fun day for a great cause.

Contact me at wyatts-warriors@hotmail.co­m or at 289 404 1021 for any questions or to register.

PLEASE PASS THIS ALONG TO EVERYONE YOU KNOW!!!!!

Wyatt and so many others, thank you.

For anyone unfamiliar with Wyatt or his story please visit the following links...
http://www.totsites.com/tot/wyatts/

http://www.metronews.ca/toronto/Live/article/201758

Laura Celsie
Wyatt's Warriors

Please save Sunday October 18 for the Sasha Bella Fund 2009 fundraiser for Sickkids

We are very excited that the Wychwood Green Barns have donated their beautiful new space for for our 3rd fundraiser for Sickkids family centred care initiatives. Wychwood Barns are located two blocks west of Bathurst and St. Clair, one block south on Wychwood. The day will start with a symbolic walk in Sasha's neighbourhood followed by fun events, delicious food and a silent auction. The event committee has met since February and with your support our goal is to raise $75,000 in 2009 for programs helping Sickkids patients and families. If you would like to help with a performance, auction item, event sponsorship or help on the day please email walk @ sashabellafund.com. Thanks for helping Sickkids families! We will post a link to the 2009 registration site in the next few weeks so you can create your own fundraising page.

Wordles - build imaginative care word clouds on the fly

Wordle.net lets you create word clouds for your child and family's care experience. You can easily customize layouts, colors and fonts. The left screenshot is a partial wordle of Sasha's life built by entering words in a text box. You can also create wordles from feeds on websites (try CBC.ca for example). Here is a wordle generated by Sasha Bella Forever blog feed (here is another) . Wordles from feeds can pull esoteric items and favor homepage content. At Wordle you can create a word cloud that allows others to imagine what you experience. It would be fantastic if it also could link words like in Powerpoint, determine their order and allow edits after publishing.

Dad bonds with his baby in NICU with words and songs

Dan Yashinsky shares his story telling in the NICU for baby Jacob on Tapestry. Starts at 1 minute 30 seconds.

"I had this very strong feeling that this may be the only time I would ever get to sing to this son of ours. I just said 'look, I know I am probably not supposed to, and I will be real gentle, but I am not letting my son leave until he has heard a lullaby and he's been rocked'. So I reached in ... maybe a half millimeter each way and just rocked him a tiny bit, and I sang lullabies. I sang 'Dance to your daddy, my little laddie, dance to your daddy, my little boy'.... It was the song I sang to his older brother. He made it through the first night. And I still remember the doctor, a dark haired Irish woman, was explaining this and explaining that to me and I just keeled over. I fainted."

Dan bonded with his son with family stories, songs, lullabies, rhymes and even hours of Chaucer that he had once memorized. "I felt like I was trying to persuade him not to die." He offers a simple aid to parents and especially Dads struggling with hope and fear at the isolette or bedside in those confusing first days when staff seem to do all the care. Share your voice. Offer your baby words and songs as an alternate soundtrack to the beeps and ICU noises. The Sickkids NICU has books to read to your kids, ask a nurse or social worker.