Jack Johnson, Please Play A Set At Sickkids In August

Jack, when your 2008 summer tour brings you to Oro just outside Toronto in August, please drop in at Sickkids and play a set in Canada's largest pediatric hospital. We celebrate your passion for green energy, this visit would get the red going in a place where there is a lot of blue, a lot of little miracles, where a beautiful child dies almost every day. Where children and parents surf the scariest waves life will ever blow their way. We first heard your music when one of Sasha's core nurses loaned us Curious George and we got silly and played it every bed time for 6 months. And everything was upside down and we wanted to share this love with everyone and we didn't want this feeling to go away. Now, almost two years after our little Sasha went to the Valhala of surgical heroes at age two you again reach in deep with go on. We watched Sasha fade slowly to a place we couldn't go, bound by blood and love from the moment we play you to our children. Your songs lay their fingers on our souls.

"Does that sound strange?"

Diane Flacks checked in with us a year and a half after Catherine Dunphy visited in August 2006. I was happy that Diane focused on Pamela's story and that between candid moments you can see how parents grieve differently. We can argue about almost anything, including shopping lists, and I was about to say I don't remember any arguments between us over Sasha or her care but that isn't true. Small conversations bubble to the surface of my memory about whether to talk more with so and so, or for me not to take off an evening and go for beers with friends. Pamela's strength and presence let me checkout in some respects, at times. Each night she handed me a reminder list as she left around 11pm to endure sleepless night, pregnant and alone in our house before returning for another full long day at Sickkids. Weathering The Unimaginable was published in Saturday's Toronto Star.

2008 Labatt Heart Centre Nurse Award

In preparation for Nursing Centre Awards of Excellence this Tuesday May 13, the fund and Sickkids staff selected two nurses who demonstrated excellence in their family-centred care practise. A big thanks to the 2008 committee comprising Lori Burton, Christine Clark, Misty Earle, Linda Fazari, Carrie Heffernan, Tessie Koonthanam, Kathleen Johnston, Dr Jennifer Russell and Sherry Reestevens. It was an amazing collection of specialized paediatric expertise; almost all had cared for Sasha at one time. Tessie and Cecilia Hyslop promoted the award in CCU and 4, Trisha Sutton wrote two nomination letters and Cecilia wrote a nomination and organized the certificate printing and framing so that these awards look like all the other nursing centre award certificates.

2008 Patient Safety Symposium - Communication is Key

Sickkids Hospital's 4rth Annual Partners in Pediatric Patient Safety Symposium organized by Dr Anne Matlow and Polly Stevens on June 11 offers much to anyone interested in effective patient and family and staff partnership. The Sasha Bella Fund is thrilled to support the collective work of the patient safety committees. Registration deadline is May 16, cost is $150 (some bursaries available) and here is the exciting list of speakers.

COMMUNICATION IS KEY!

7:15 am Registration & Breakfast

8:00 am WELCOME Mary Jo Haddad, CEO The Hospital for Sick Children

8:05 am HEALTHIER CHILDREN. A BETTER WORLD: USING COMMUNICATIONS TO IMPROVE THE HEALTH OF CHILDREN IN THE THIRD WORLD Gord Martineau CityTV, Toronto

9:00 am COMMUNICATION FOR INFECTION CONTROL: THE WORDS WE USE Anne Matlow, MD SickKids

9:45 am Break

COMMUNICATING BETTER WITH OTHER PROVIDERS

10:15 am THE IMPACT ON TEAMWORK Lorelei Lingard, PhD SickKids Learning Institute

11:15 am THE IMPACT OF USING STANDARDIZED COMMUNICATION TOOLS (SBAR) FOR PATIENT SAFETY Karima Velji, RN, PhD Toronto Rehabilitation Institute

12:00 pm Lunch

1:00 pm WE NEED TO TALK: SAFETY AND COMMUNICATION Robert Buckman, MB, PhD Princess Margaret Hospital, Toronto. Toronto Book author, “How to Break Bad News”

2:00 pm I AM THE VOICE OF MY CHILD Elaine Tal-El, MA A.V. Israel

2:30 pm “WHO” ARE WE? LEARNING FROM THE LIVED EXPERIENCE Katarina Stanisic, RN, BN Toronto Rehabilitation Institute WHO, World Alliance for Patient Safety

3:00pm QUALITY / PATIENT SAFETY ACHIEVEMENT AWARD AND PRESENTATION

3:15 pm FAMILIES AS PARTNERS IN PATIENT SAFETY AWARD AND PRESENTATION

3:30 pm WRAP-UP AND CONCLUDING REMARKS

Speaker Biographies:

Robert Buckman, MB, PhD, FRCPC Professor, Department of Medicine, University of Toronto Oncologist, Princess Margaret Hospital, Toronto Book author, “How to Break Bad News”

Lorelei Lingard, PhD Associate Professor & Scientist, University of Toronto SickKids Learning Institute, The Hospital for Sick Children, Toronto

Gord Martineau Anchor, "CityNews at Six", CityTV 2007 Gemini Award, Best News Anchor; 2007 Radio and Television News Directors' Lifetime Achievement Award

Anne Matlow, MD, FRCPC Director, Infection Prevention and Control Medical Director, Patient Safety The Hospital for Sick Children, Toronto

Katarina Stanisic, RN, BN Patient Safety Officer Toronto Rehabilitation Institute, Toronto World Health Organization, World Alliance for Patient Safety, Patient Safety Champion

Elaine Tal-El, MA Chief Executive, Auditory-Verbal Israel, Jerusalem, Israel Parent

Karima Velji, RN, PhD Vice President, Patient Care and Chief Nursing Executive Toronto Rehabilitation Institute, Toronto

Download or View 2008 Sickkids Hospital Patient Safety Symposium Brochure (PDF, 107KB)

The Parents as Partners in Safety Committee

Read about The Parents as Partners in Safety Committee at Sickkids Hospital as a model for partnership between parents and staff and an essential underpinning of patient and family centred care.

Educational Documentaries on family centred care and interprofessional practise

The educational video effort organized by the IPP team is now in day 16 of filming and I was invited to talk about family centred care. For a few hours the director's focus changed from hand held camera to a fixed setup in the Atrium boardroom. I entered the room to find it taken over by crew and gear and was ushered to the makeup chair where Ava turned by ruddy complexion skin shade and I practiced some talking points with Marc. It was my first full make up and professional filming and I found the preparation fascinating in its adjustment of light tones, hairs and incredible concern about skin shine. I had only seen husband and wife director team Marc and Marcy Stone at the IPP retreat where they were continually lobbed pointed questions about the challenge of separating IPP and FCC into two movies so it was good to see them in their element, relaxed, focused and professional. It's a tall order to answer questions and present heart felt bullet points about family centred care in 20 minutes but I was very happy for the opportunity (though tight time slots are great practice for focusing on essentials). Unsure if anything I said was crisp enough to make two 30 minute videos I was relieved to hear that social worker David Nicholas has arranged for all footage to be used for further research.

2008 Sasha Bella Walk for Sickkids Family Centred Care

It is exactly two months to the 2008 Sasha Bella Walk and we are getting excited! In the next few days Pamela will email out the link to the Sickkids Foundation registration, donation and sponsorship web tools and post them here. I am ecstatic that Sickkids has been rolling out the powerful fundraising tools from Artez which allows you to create your own page with picture and target thermometer and get friends to sponsor you. The ease with which a network can be mobilized online now is just breathtaking. In the mists of the long winter that just passed, Pamela got to work with friends since highschool Alison Goldman and Evette Goldhar and two sisters, Raina Stein and sister in law Lisa Singer and imagined a carnival for kids and the kids in all of us in beautiful Cedarvale Ravine. As we anticipate the energy of hundreds of people raising funds and awareness about Family Centred Care at Sickkids Hospital, enjoy some pictures of the first low key walk with its drum circle holding back the rain. How special it was to see Pamela strolling Mia with neighbours, family, nurses and friends.

Meet Larsen Grace Purvis

Sasha had three families, her biological family, her Sickkids family and her Alagille family. Through a random genetic hiccup, Sasha is as much Mia and Eve's sister as she is the sister of Larsen Grace Purvis of Tenessee who was born in August 2007. I am so happy to read Larsen just enjoyed a road trip down to New Orleans to meet more of her family. Larsen, like Sasha, has Alagille Syndrome and pulmonary atresia and her care journal is already full of medical interventions and the heart breaking rollercoaster of big dips and rebounds. Our open hearts and most positive wishes extend down to Larsen and her mom and dad Tamara and Frank, their family and friends and the team at Vanderbilt Children's Hospital who are helping Larsen. They are about to go to Children's Hospital of Philadelphia for a second opinion. I was saddened to see that catheterizations, like with Sasha, have so far not induced blood vessel growth: "For most of the weekend, we were suspended from reality. Earlier that week, we had taken Larsen to the cardiologist for an echocardiogram to see if her vessels had grown since the cath she had back in January. Dr. Parra reported that there were no changes. His demeanor was neutral and our reaction was about the same. Usually, I cry when we visit the doctor but that day I was numb. He indicated that probably over the summer they will attempt another cath and maybe stent placement. He doesn't talk about the future anymore and neither do we." Reading this brings back the memories of our clinic visits and hopes for stents and dredging of Sasha's tiny collateral arteries. Only yesterday Pamela and I were remembering our Sasha time as one of living day by day. I am so happy Larsen went on a holiday and wish her many more road trips to come.

Causal Attribution, Bias, Social Exchange Theory and parent - staff interactions

While searching for references on a 25/500 rule of neonatal resuscitation, I reconnected with the sociology problem of how people attribute behaviour (to dispositional or internal aspects like 'personality', intelligence etc or to situational/external variables like working conditions or work culture) and dived into an area that seems most useful as I process the huge cast that was Sasha's life, particularly my relations with my daughter, wife, hospital staff and other families over the whole course of care. As I wasn't finding links that authoritatively detailed 25/500, I clicked on the search result titled"An American Medic in Britain: Neonatal Opioid Withrdawal" and noticed he was in Fife where I lived awhile and looking around more I noticed a stats service called healthcare100.net (listing the American Medic blog at 660) offering up (among many) badscience.net which lead to an article about the UK deciding to discontinue statistics the author argued proved success where the policy makers decided they were redundant or misconceived ("the government’s desire to cough over the unflattering death stats may represent an entirely new category of bad science: being too dumb to know when you’ve done well.") The author ends with reference to a favorite study: "Unskilled and Unaware of It: How Difficulties in Recognizing One’s Own Incompetence Lead to Inflated Self-Assessments" and this returned me to a paper by NICU nurses on the Guarded Alliance description of partnership which require that when parents and hospital staff engage each other it is based on parent estimation of their own and staff's competence, which creates different degrees of trust, in turn allowing different degrees of parent-staff partnership. I then clicked on a commentor's reference to the fundamental attribution error (also called "correspondance bias") defined as "the tendency for people to over-emphasize dispositional, or personality-based, explanations for behaviors observed in others while under-emphasizing situational explanations. In other words, people have an unjustified tendency to assume that a person's actions depend on what "kind" of person that person is rather than on the social and environmental forces influencing the person. Overattribution is less likely, perhaps even inverted, when people explain their own behavior; this discrepancy is called the actor-observer bias." The article goes on to look at theories of the cause of the error, ways to reduce the error and the findings that this error is more likely to occur when a person is in cognitive overload and in a society that emphasises individualistic over collectivist impulses. This is sociology 101. Another link considered "how individuals "attribute" causes to events and how this cognitive perception affects their usefulness" and this lead to a reference that "the covariation model was developed by Harold Kelley in 1967. It uses three scales to explain the system that people use in order to make an internal or external attribution to a person in a given situation." Since I was born in 1967, I was immediately sensing a connection with Harold Kelly who co-developed social exchange theory with a focus on the processes and manner that we use to attribute causality and was more intrigued to read that his real world application was to view how young couples negotiate and attempt to resolve conflict, leading to two pioneering works on personal relationships, which "encouraged the examination of topics long ignored in social psychology such as attraction, love, commitment, power and conflict in relationships, etc." It makes sense to me to view family and hospital staff interactions with the lens of social exchange theory as defined as follows. "Social exchange theory is a social psychological and sociological perspective that explains social change and stability as a process of negotiated exchanges between parties. Social exchange theory posits that all human relationships are formed by the use of a subjective cost-benefit analysis and the comparison of alternatives. For example, when a person perceives the costs of a relationship as outweighing the perceived benefits, then the theory predicts that the person will choose to leave the relationship. The theory has roots in economics, psychology and sociology. For social exchange theorists, when the costs and benefits are equal in a relationship, then that relationship is defined as equitable. The notion of equity is a core part of social exchange theory. Social exchange theory is tied to rational choice theory and on the other hand to structuralism, and features many of their main assumptions." The article notes interesting critiques of the model (assumption of intimacy, birth during an individualistic 1970s era and lack of utility for cultures based on collectivist mores etc) however it really does seem very useful for investigating parent-staff dynamics by hospital educators. Then I explored the reference to "cognitive overload" and read that "Cognitive Load is a term that refers to the load on working memory during problem solving, thinking and reasoning (including perception, memory, language, etc.) Most would agree that people learn better when they can build on what they already understand (known as a schema). But the more a person has to learn in a shorter amount of time, the more difficult it is to process that information in working memory. Consider the difference between having to study a subject in one's native language versus trying to study a subject in a foreign language. The cognitive load is much higher in the second instance because the brain must work to translate the language while simultaneously trying to understand the new information. Another aspect of cognitive load theory involves understanding how many discrete units of information can be retained in short term memory before information loss occurs. An example that seems to be commonly cited of this principle is the use of 7-digit phone numbers, based on the theory that most people can only retain seven "chunks" of information in their short term memory." This seems very applicable to parent hospital interactions since 1) parents likely either don't have a schema for a situation that is unique in their lives or their schema may be biased or naive in important ways 2) parents have an extremely steep learning curve with hospital staff upon discovering their child has a serious health issue and this learning curve is greatly compounded for any family whose first language is different than hospital staff and 3) the possibility that there could be situations where there was too much information to process quickly. I experienced a type of brain freeze that I always put down to fatigue, or being asked questions when half asleep or waking up etc. However here is another cause. This topic in turn touches on many discussions I have had with parents and staff about what they were told about diagnosis and options and when; the parent default position seems to be: we want you to tell us all, all the time. This tell all approach rubs up against the medical staff dilemma (stated or not) as to whether to share information with parents when it is concrete or to share competing viewpoints or hypotheses etc transparently as they come up. Perhaps sharing all will increase parent trust of the staff who communicate transparently; however the higher information flow may force earlier shut down in the processing by parents due to load; this could leave parents trusting and more dependent on staff guidance; however in the end patient/parent responses to options can clarify for staff what is the best courses of action.

Please share your thoughts on patient/parent and staff biases in attributing causes to care events and their negotiation of the care partnership.

Capturing A Short Life

The documentary Capturing A Short Life has been completed and will have advance screenings in April before general release. The documentation of infant loss uses photographs of families in the NICU as taken by Heather Rivlin. Heather visited Sasha on her first morning home.

Mount Sinai NICU invites Sickkids NICU parents to join buddy training

A butterfly claps its wings and wonderful doors open. Ina spoke to social worker Frida Ardal, one of two staff volunteers making the Mount Sinai parent buddy program work, and Frida has opened up 2 spots for Sickkids parents to join parent buddy program training at the end of April. This mentorship is a wonderful first step toward building a Sickkids NICU parent buddy program.