SavvyMom Sickkids Crib Campaign

The new fundraising campaign for Sickkids Hospital focuses on mattresses. Very strategic, very close to baby's skin, very savvy. Sarah and Minnow write "We were shocked to learn that The Hospital for Sick Children needs $2.5 million to replace most of its beds, cribs, mattresses and stretchers. Parts for aging equipment can no longer be found, and the hospital is spending funds to rent specialty mattresses because the older-style mattresses contribute to skin breakdown, a condition suffered by many of the tiny patients. We hope the SavvyMom community can come together to reach our goal of $20,000 to buy 50 crib mattresses for SickKids." You can read more at Please consider a small contribution; you can donate here.

“Designer Babies” and the Governance of Life: The Case of Pre-Implantation Genetic Diagnosis (PGD)

“Designer Babies” and the Governance of Life: The Case of Pre-Implantation Genetic Diagnosis (PGD)

Ann Robertson, DrPH, Professor, Dalla Lana School of Public Health, University of Toronto

26 November 2008, 4:10 – 5:00 pm, Joint Centre for Bioethics, Great Hall, 88 College St.

Abstract: Emerging biotechnologies associated with the “new genetics” raise new possibilities for the enduring quest for biological mutability/human perfectibility. Using a Foucauldian perspective, this presentation considers the social, ethical and political implications of one of these biotechnologies – pre-implantation genetic diagnosis (PGD). These implications are discussed further in terms of the notion of “biological citizenship” in the context of a prevailing neo-liberal political rationality. The presentation concludes with a reflection on what social theory has to offer to a consideration of the ethical question “who may live?”

The University of Toronto Joint Centre for Bioethics Seminar Series is an accredited continuing education activity under CFPC and RCPSC programs. This bioethics seminar will be webcast at

Sickkids Interprofessional Practise Award in Paediatric Hospice Palliative Care 2008

The 2008 award was presented to the Outpatient Metabolics Team in the Division of Clinical and Metabolics Genetics. The team comprises Dr. Julian Raiman, Dr. Annette Feigenbaum, Dr. Andreas Schulze, Dr. Joe Clarke, Dawn Cordeiro RN, Lindsay Lockyer RN, Doreen Anderson RN, Patty Martinez SW, Helen Phillips RD, Valerie Austin RD, Kara Hitchman GC, Margaret Mackrell RN. Congratulations to each of you on your outstanding interprofessional support of families.

The team were given a paediatric palliative care textbook for their library and individual copies of Getting to Maybe and Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers (Ceilidh Eaton Russell, Max and Beatrice Wolfe Centre for Children's Grief and Palliative Care). The team, in the important tradition of care for the caregiver will go together for treatment and lunch at the Elmwood Spa near Sickkids Hospital. This award was supported by the Sickkids family funds Melanie's Transition Group, The Paige Berry Memorial Fund, The Mitchell Duckman Fund and The Sasha Bella Fund for Family-Centred Care.

Here is video of the award ceremony at Sickkids Hospital Interprofessional Practise Symposium on November 18, 2008 presented by advanced practise nurse Maria Rugg who has provided palliative and bereavement services to Sickkids families for almost 20 years. (apologies to Maria for the poor visibility in the video)

Innovation Fund in Children’s Palliative Care Research 2008 recipients

On November 17, Laura Beaune SW, Samantha Anthony SW, Gurjit Sangha RN, Dr Karen Spalding and myself reviewed four research grant applications. Special thanks to each for the detailed, engaged and constructive review and to Karen for joining us from Ryerson University Nursing Department. We selected two to support this year and one to followup with for future support. The two research initiatives are:

Better Understanding How Couples Cope with a Child’s Life-Threatening Illness, principal researcher Susan Cadell, PhD, MSW - Associate Professor Director, Manulife Centre for Healthy Living Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University.

Development and Testing Of An Instrument To Measure Parents’ Perspectives Of The Quality Of Children’s End-Of-Life Care, principal researcher Kimberley A. Widger, The Lawrence S. Bloomberg Faculty of Nursing, University of Toronto.

Here is Laura Beaune announcing the grant recipients at Sickkids Interprofessional Practise Symposium on November 18, 2008, with a break to appreciate the winners of the Interprofessional Practise Award also given by the Palliative and Bereavement Care Service at Sickkid.

To contribute to this Innovation Fund please contact

David Nicholas: Needs of Professionals Within An Interprofessional Environment: Emergent Findings from Sickkids Based Research

David Nicholas began with a definition of Interprofessional Practise from the Sickkids publication Advancing Interprofessional Practise (2004):
"Inter-professional practice (IPP) in a paediatric health-care setting refers to the continuous interaction of two or more professions, organized into a common effort to solve or explore common issues with the best possible participation of the child and family." (emphasis in original)
He listed some noteworthy interprofessional formations including the Multi-Disciplinary Urogential Team (MUG team) that combines multiple clinics in one spot so families can see many specialists during one visit to Sickkids and the Health Leadership Forum held in August where dozens of Sickkids staff lived and worked for a week and explored professional initiatives together, in several cases deciding to continue working together on team and family related inititatives.

He then summarized the findings of SCRIPT which can be found in the SCRIPT Annual Report Year 2 (April 2006 - March 2007).

David's main focus was sharing data on the 13 focus groups held by Sickkids to date that combine professionals, trainees and parents. The 84 participants so far average about 6.5 persons per focus group. The groups were asked about both formal communication (referrals, health care records, rounds) and informal communication (face to face discussions, telephone calls, pages and emails). While communication sometimes went well, he stated that he was pulling from the data specifically the challenges):

* communication with off-service staff was difficult and disjointed and confusion arose about who to contact leading to phone tag and communication delays

* the complexity of patient care intersects with staff turn-over, time limitations, high workload and lack of awareness or knowledge about every profession's role

Parents are concerned about: fragmentation between services, specialists who do not coordinate among themselves, how complicated it can be as a parent to navigate, and that the right hand must know what the left hand is doing.

"Parents overwhelmingly felt that the more areas that their child was seen in, the less coordinated the care and communication."

The findings speak to the need for:

* greater consideration of the breadth of health needs
* coordination of multiple services
* awareness of who else is involved
* flexibility of communication along with structures that support integrative case planning
* ways to reach off-service resources

Staff spoke to misunderstandings as to scope of practise boundaries and interprofessional boundaries (roles and responsibilities) that leads to 'slippage' with patients and families. Many felt that not recognizing boundaries was a source of stress and frustration while some felt that IPP overlap at times offered a protective factor.

The development of personal and collegial relationships which can foster respect can be supported by social and teambuilding events. Shared time is essential to get know one another and develop some bonds. Respect grows with time and experience.

David highlighted that IPP is not "rationing specialised care into a watered down mutuality" and is about "optimizing coordination, interactions, humaness and effectiveness of care." He sees the data suggesting the need for staff to experience: more IP education; more IP structures for communication (shared rounds, overlap between staff shift changes, proactive care to reduce reactive responses); more coordination between departments and the importance of social and team building events.

He introduced the family presence in IPP by reading a long quote by an adult transitioned patient who was being considered for surgery and happened to stop in at one doctors office when another doctor was there and shared how "It really helped when they were actually talking with each other in my presence." In short staff can help patients understand some of "our processes".

The key role of families in providing insight into a care plan requires effective coordination of multiple services and professionals, consistency of messaging to children and families, flexibility in communication with structures that support integrative case planning, more inclusion of families in core planning and support of parents in terms of finding their role as part of the IPP team. Inviting families to comment on care requires that staff assist families with specialised care language. He concluded by noting and supporting Dr Joshua Tepper's opening call to include the child and family integrally with the team.

"Structuring communication relationships for interprofessional teamwork (SCRIPT): a cluster randomized controlled trial" (Zwarenstein et al 2007)

RNAO Best Practice Spotlight, Supporting and Strengthening Families through Expected and Unexpected Life Events, gap analysis - summary: Partnerships with families are important but inconsistent across the hospital; An assessment of the family should be done in conjunction with the assessment of the child; While Family Centered Care(FCC) is initially discussed during staff orientation, there is a lack of ongoing educational opportunities to support family centered practice; For staff to practice FCC, they need to have the resources and support when dealing with challenging situations (e.g. adequate staffing, knowledge of conflict resolution)

LFHC Family Education Day

The Labatt Family Heart Centre are planning a family education day in March 2009 at the downtown Marriott Hotel close to Sickkids Hospital. SW Ruta Niedra and Heather Telfer surveyed patients and families to draw up a list of topics of interest and confirm the events would be organized as a group and also by age groups. The meeting was chaired by Ruta and included Judith Wilson, Kathryn Timberlake and Christine Clark from the Centre and three adult heart patients as well. One topic families were interested in is anti-bullying strategies - I came across a company that offers a child anti-bullying lesson using actors and would also love to see young musicians take to a stage and entertain the families and staff.

Paediatric Hospice Palliative Care Course

Presented on our experience to a group attending day 1 of a Paediatric Hospice Palliative Care course offered by Sickkids staff Maria Rugg and Dr Christine Newman. I looked at how we differed as a couple in our desire to speak to palliative care and how we ultimately deflected palliative care for several months as Sasha was slowly diminishing. Staff may need to give some parents permission to consider that their child is dying as they certainly give parent's permission to hope for better health. I described palliative care as the elephant in the interprofessional room - Sickkids funded research suggests only 8-12% of children who would benefit from palliative care get such support. The participants included mostly nurses and students, there was only one doctor in attendance - her medical credentials from Switzerland have not been recognised.

Ability Online: free, monitored, online child and parent support community

In October I had several conversations with Michelle McClure, director of and am excited to hear they are retooling their online community. Here are blurbs from their website:

Ability Online is a free and monitored online support community that links kids with disabilities or illness to other kids and adults who care. In a password-protected environment, we offer monitored topical discussion threads, email and chat facilities, and games and activities where kids can come together and just be kids. Then, when they are ready, health information, peer support, and opportunities for skill development are just a mouse click away. Ability Online also offers private e-communities to off-line support groups which can benefit from the extended access of an online facility. This is particularly helpful for organizations whose outpatients are restricted by geographical barriers.

Ability Online is an extraordinary and absolutely free Internet community. Here, young people with disabilities and illnesses connect with all kinds of possibilities that address their needs as curious, growing citizens of the planet. They meet and chat with other people like them in a virtual world that transcends boundaries and barriers. They make friends, get tips from mentors, and freely participate in an atmosphere of collaboration, companionship and support. And this remarkable community also provides many benefits to parents, family members and others who want to make a difference in enabling and enriching the lives of those they know and love. What Ability Online is not is a highly trafficked, public online area, where anyone can come and go and chat and boast and bully… and engage in all those dubious behaviors the Internet is accused of breeding. Ability Online is available 24 hours a day and is monitored by caring, responsible volunteers who share in the dream of a place where worries are set aside, heartaches are healed, and good things happen to those with hardship in their lives.

The over nine year old website technology will be overhauled in December and the bulletin board and chat tools greatly expanded and streamlined with the help of a substantial programming contribution by Momentum Advanced Solutions Inc. I suggested adding the ability to tag or label content so that users can search for specific threads, such as for particular hospitals, deceases etc and that users have a profile area where they can share more about themselves if they wish to. Similarly over the next month or so they plan to setup a Family Advisory that Michelle invited input to. I see a natural connection between parents and children connecting via the web and family presence and advisory initiatives and knowledge exchange in hospitals. For further information and to contribute to Ability Online networking or fundraising, please contact: Michelle McClure, Director of Program Development and Member Services, Ability Online, Tel.
416-650-6207, email:

Scary health news

Hope you all had a safe and fun Halloween. In the scary news department, the heart attack our economy is going through has lead provincial bean counters to defer much needed investment in nurses and community care teams and delay the hiring of 9,000 nurses to save $50 million and delay the addition of 50 family health teams of doctors, nurses and other health professionals who deliver comprehensive medical care in one location to save $3 million. Seems like just the wrong medicine for a planet expecting a new pandemic. Perhaps even scarier is yesterday's report that hospital privacy curtains are breeding grounds for drug resistant bugs who are spread when hospital staff touch the contaminated veils and there just don't seem to be clear hospital policies about cleaning the screens. This was followed by reports today that c.diff testing is often wrong.