Kim Dionne - "Everyday Hero"

Kim Dionne, co-chair of the NICU Family Care Group, and researcher and mentor on collaboration with families was featured as an "Everyday Hero" on Global TV last Friday. All the short clips can be accessed at "Everyday Heroes" and then select "Kim Dionne". The spot also features photos of the the innovative cart that Janis and Diane and NICU created to allow Jonathan Purdy-Flacks to first see sunlight.

Dr Simone Honikman : Perinatal Mental Health Project

Come and listen to Dr Simone Honikman of the Perinatal Mental Health Project talk about her work with young mothers in the communities around Cape Town.

Date: Saturday 7 March 2009
Time: 10.00 am
Venue: Novotel Toronto North York Hotel, 3 Park Home Avenue (off Yonge Street)
Visit www.novotelnorthyork.com for directions.
Price: $25 per person (Cheques made out to "UCT Foundation")
Contact: Diane Stafford 416 637 7981

The Perinatal Mental Health Project (PMHP) addresses the crucial public health problem of mental distress among women living in adversity in South Africa. More than 1 in 3 women in Khayelitsha, Cape Town, experience postnatal depression. Mental health care is a neglected area – even more so in "healthy" pregnant and postnatal women. The focus on the physical to the detriment of the emotional is particularly felt now against the backdrop of HIV and AIDS. The public health service has been unable to address the mental health needs of women from poorer communities - neither within maternity services nor within mental health services. This is despite a wide body of evidence showing that distress in the mother may have long-lasting physical, cognitive and emotional effects on her children.

Dr Honikman will be in Toronto to present two papers at the conference entitled, "Expanding our Horizons: Moving Mental Health and Wellness Promotion in to the Mainstream" .

Through the PMHP, operating from the Mowbray Maternity Hospital since 2002, to date almost 6000 pregnant women have had access to mental health care, free of charge. The alumni breakfast will present the opportunity for Dr Honikman to discuss the advances made within the PMHP over the past few years. Describing her work with empathy and compassion, Dr Honkiman presents a very compelling case in support of her work.

We look forward to seeing you there!
Kind regards

Di Stafford
Regional Director: Alumni Relations & Development
University of Cape Town Foundation (Canada)
Email:distafford@uctfoundation.ca

New Palliative Care sign a sign of the times

Several weeks ago I noticed the new sign to the Palliative Care Service as you exit the basement elevator in Black Wing. I had often thought how hard it was to find the office and at a meeting I attended last year one staff got lost. So the sign jumped out at me and feels symbolic of the team's wider work to make palliative support more visible to doctors and patients. The hospital's new Interprofessional Practise video starts with a little girl kept alive on a ventilator with her family and several staff interacting; later on the video, a nurse cries as a doctor recounts her end of life at the team meeting. The service is advocating to the Ministry that palliative care be a mandatory rotation for medical students and not an elective. The Team for Research with Adolescents and Children in Palliation and Grief (Trac-PG.ca) is enrolling families, networking with other researchers and undertaking country wide research studies. Parents of children supported by the team have set up a program to support sibling grief, a research innovation fund and a new hospital wide award so the service can recognize staff interprofessional excellence.

News from Sickkids NICU - developmental care room pilot goes ahead

Sickkids Neonatal Intensive Care Unit will build the pilot developmental care room over the next few days. The six bed room will be home during the entire course of stay for babies under 1500 grams or those very susceptible to neural stimulation such as changes in sound and light. Dr Jonathan Hellmann explained that the idea that controlling environmental stimuli is positive for preemies makes common sense and research shows parents are happier and more involved and feeding is more successful; however the full effect on the babies has yet to be thoroughly researched.

Renovating a busy intensive care facility home to very fragile infants is difficult as babies are transferred to other rooms and efforts have to be made to reduce the banging on two walls and its effects on infants in adjoining rooms. Sickkids NICU has been very busy running at capacity for several weeks and have recently gotten busier with the Ministry's addition of three new beds. Three beds doesn't sound like a lot however, in this unit, doing the work it does, just three beds feels like it pulls out the very last bit of flex.

The renovation follows almost exactly a year after the Toronto Star wrote about a pilot developmental care room to be launched by the end of 2008 and focused on NICU parent input: a NICU dad explained their baby started to feed, digest, add weight and sleep better in an isolated and quiet room but after moving to a brighter, noisier bed by a nurses station the baby immediately struggled to thrive. The renovated room provides a central location for a new developmental care program with specialized staff, environmental controls and new continuous monitoring equipment already started elsewhere on the unit. The room was artly supported by two NICU parents' fundraising in July 2007.

Big, brave medicine and powerful little acts : 'they go the extra step and that's huge'

Just after seven each morning I get an email from Daily Good. Each begins with a quote, shares a story and ends with a thought on our little acts. Recently it seems there has been an uptick in articles relating to health care challenges, here are the last three from the past week.

Twelve people at multiple medical centres in several different cities swap organs in a domino donor transplant never before attempted on this scale so that five people can receive compatible transplants and a chance at life.

From a 9 year old's school assignment titled 'If I Had Three Wishes' comes Tyler's Totes: "The Smiths didn't have any grand plans, just Tanner's guiding principle: to make kids with cancer laugh. Kathy contacted a sorority sister who worked in an Atlanta-area hospital for advice. She learned that little kids received plenty of support from outside groups, but preteens and teenagers were sort of the forgotten demographic. Buoyed by the idea of helping kids the same age as Tanner, the family decided to gather things to brighten hospital rooms, and toys that would fill an otherwise lonely day. The Smiths put everything in tote bags so kids could carry their wares from treatment to treatment."

And this morning the power of little acts of kindness, an ironworkers tribute that has kids and parents at Dana Farber smiling as they look over at the beams of the Yawkey Centre:

"It has become a beloved ritual at Dana-Farber's Cancer Institute, where they are building a new facility. Every day, children who come to the clinic write their names on sheets of paper and tape them to the windows of the walkway for ironworkers to see. And, every day, the ironworkers paint the names onto I-beams and hoist them into place as they add floors to the new 14-story Yawkey Center for Cancer Care. "It's fabulous," said 18-month-old Kristen Hoenshell's mother, Elizabeth, as she held her daughter and marveled at the rainbow of names. "It's just a simple little act that means so much....They don't have to do this, the guys. They could just do their job and do a good job at it and give us a building that we can get treatment at, but they go the extra step and that's huge."

Narrative Medicine - Dr Rita Charon at Columbia

Several nurse educators at Sickkids have been very helpful to me in better understanding how nurses relate to and support patients and parents. One item particularly struck me in a binder of training materials and that was a powerpoint presentation focused on the importance of really listening to the patient/family and helping them recount their story or narrative to medical staff. Similarly, parent involvement at the hospital is always grounded in the story of care experienced by the family. However, no matter how empathetic your core nurses are, some of the most lasting impressions of care will be created by the doctors that help families chart options, make decisions, and report on the outcomes of proceedures and next steps. So I found an interview with Dr Rita Charon, Director of the Narrative Medicine Program, College of Physicians and Surgeons of Columbia University, quite fascinating. Here she describes how she started writing down her patient stories and then sharing them with the patients and advocates creation of a "Parallel Chart" where staff stories can be recorded (and this would similarly be great for parents).

"With the encouragement of literary scholars Joanne Trautmann Banks and Kathryn Montgomery, I found myself writing about my patients in order to understand what they were telling me, because I learned that thoughts and sensations have to achieve the status of language before they can be useful to anybody. I then found myself showing my patients what I had written about them so as to make sure I had heard them correctly. "This is what I think you told me in the office last month. Did I get it straight?" And I found that patients were grateful for my having done this writing, not only as a sign that I tried to understand them but also for the chance to say, after reading my little summaries, "Well, we left something out."

At the same time, I coached my medical students and colleagues in writing reflectively about their practices to more accurately understand what their patients go through and also what they themselves endure in the care of the sick. I asked students and residents to keep what I called "Parallel Charts" on the patients in their care. We all know what gets written in the hospital chart or the office chart. However, there are critically important aspects of the care of patients that do not belong in the hospital chart, but that, I submit, have to be written somewhere. In the Parallel Chart, students and doctors write about their own anguish in caring for patients as well as their victory when things go well, their rage and mourning and dread, their fear of mistakes, their inability to know what to do, their sense of loss as patients sicken, no matter what they do. And when students or doctors read to one another what they have written in the Parallel Chart, they take heart that they are not alone in their sadness and their dread, their sense of isolation among sick and dying persons diminishes, and they feel accompanied by their colleagues on their journeys."

Dr Charon's vision of narrative medicine can support staff who feel they need to develop an emotional distance as a coping mechanism to work closely with patients who frequently die.

"Narrative medicine brings a useful set of skills, tools, and perspectives to all doctors. Not only does it propose an ideal of medical care -- attentive, attuned, reflective, altruistic, loyal, able to witness others’ suffering and honor their narratives -- that can inspire us all to better medicine, it also donates the methods by which to grow toward those ideals. Any doctor and any medical student can improve his or her capacity for empathy, reflection, and professionalism through serious narrative training. More and more medical schools and medical centers are adopting narrative methods of study in reading, writing, reflecting, and bearing witness to one another’s ordeals. It is hoped that the research to understand the outcomes of these practices will keep pace with their growth. Ultimately, narrative medicine may offer promise as a means to bridge the current divides between doctors and patients, between doctors and doctors, between doctors and themselves, illuminating the common journeys upon which we all are embarked."

You can read the whole interview here including a list of Dr Charon's published work and read about The Program in Narrative Medicine at Columbia University which has introduced a Masters in Science in 2009. The mission statement of the Department is as follows: "Narrative Medicine fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness. Through narrative training, the Program in Narrative Medicine helps doctors, nurses, social workers, and therapists to improve the effectiveness of care by developing the capacity for attention, reflection, representation, and affiliation with patients and colleagues. Our research and outreach missions are conceptualizing, evaluating, and spear-heading these ideas and practices nationally and internationally."

Thanks to Toronto story teller Dan Yashinsky for pointing me to Dr Rita Charon's exciting work.

New parent amenities at Sickkids

There is now a laundry for parents opposite Marnie's lounge.

The Parent Resource Centre has turned on wireless for parents with their own wireless enabled laptops. You can pickup the signal on the seats outside the Centre after the Centre closes. The Centre is located opposite Shoppers Drug Mart.Kim Meighen, the Centre's coordinator, is an excellent resource for parents seeking information on hospital services.

It is also rumoured that the number on the back of a Starbucks card gives you 2 free hours access to the hotspot advertised at Starbucks. If you give it a whirl and it works let us know.