"Paradoxical Lives" by Frank Gavin

When many years ago our son, Peter, was in Sick Kids with an acute kidney and blood infection, my wife and I took turns staying with him night and day. I remember leaving the hospital on Easter Sunday and looking up at the window of his room on the seventh floor and realizing that that room was now our family’s home. And opening the front door of our house twenty minutes later felt more than a little like entering a hotel.

     No doubt the experience would have been different and even more complicated had there been another child at home. Still, my experience since then with other parent volunteers at SickKids and elsewhere suggests that what struck me that Easter—that we were now living in the realm of paradox where contradictions and seemingly incompatible realities sat side by side—has marked the lives of most of us. We had unexpectedly found ourselves in a place where we were, among all the various people and professions at the hospital, both least at home and most truly at home.

     Peter was never a patient in the NICU, but I can easily imagine that the paradoxical situations in which we found ourselves, e.g. wanting to move him just a bit to find a more comfortable resting position but fearing that this might cause him only pain or disconnect him from something to which he absolutely needed to be connected, must be even more common and acute in the NICU. I wanted very much to be a competent father—and I could see and feel that Peter wanted me to be just such a father—but initially I didn’t even know I could unplug the IV pole and thus carry him, squirming in pain, much more safely to the washroom where I could perform the one task I had been assigned: collect and measure his “outputs” every hour or so through the night. For the first few nights I was next to useless.

     Paradoxes abound for families, both in and out of hospital. We simultaneously feel full of hope and close to despair and are alternately resilient and exhausted. Capable of absorbing and applying lots of complex new information one day, we are barely able to make sense of simple instructions the next. Parents and children often labeled as and then expected to be “heroes” find themselves acting or thinking in ways far from heroic. For many, the impossible dream is to live utterly ordinary lives.

     Perhaps the hardest paradox to come to terms with is that wonderfully rich, sometimes enduring, and even humour-tinged relationships—with nurses, doctors, therapeutic clowns, respiratory therapists, and, not least,  other parents—often grow, directly or indirectly, out of our own and, more to the point, our children’s most painful experiences. Sometimes one parent of a child seeks out or simply finds himself or herself in such relationships while the other parent does not. Another paradox? Or maybe just the simple or not-so-simple consequence of differences in personality.

     There are, of course, grimmer, more profound, and more intractable paradoxes than the ones I have described and referred to, paradoxes certainly familiar to all who have spent time in level three NICUs. They elude understanding and even, perhaps, imagination. Still, all of us—healthcare professionals included--would do well to recognize and attend to the paradoxes we and those around us live with and through. We’ll judge (ourselves and others) less and understand more.


Frank Gavin teaches English at Centennial College in Toronto and serves as one of two public members on the Canadian Drug Expert Committee of The Canadian Agency for Drugs and Technology in Health, a body that recommends to public drug plans which drugs should be listed. This essay was written in response to a request from the editor of the Linden Fund newsletter to write about paradox, a topic Frank touched on in his presentation to parents from three Toronto NICU groups in November 2011. Frank was a co-chair of the Family Advisory Committee at SickKids and the founder and chair of the Canadian Family Advisory Network. He received the Volunteer Humanitarian Award at SickKids in 2002 and the Contribution to Child Health Award from the Canadian Association of Paediatric Health Centres in 2008.

Father's palliative parenting grief research poster

The poster for "Fathers' Experiences with Parenting & Grief: Unique Considerations in Caring and Research in Palliative Care" has been accepted at the Hospice Palliative Care Ontario 2012 conference.

Thanks to the skills and big hearts of Sickkids' Laura Beaune, Dr Maru Barrera, David Brownstone and Stanley Ing and Stollery's David Nicholas, Dr Mark Beletrutti and Mathew Milen for embracing the challenge of including a parent from SickKids Family Centered Care Advisory Council in the research.

Learning how a parent can participate in family centered care research has been an experience we also hope to document. This poster presents preliminary findings and emphasized a desire for peer support.

SickKids and social media: an interview with Janice Nicholson

In November, Ashley Weinhandl with the Ontario Hospital Association and health writer Colleen Young interviewed Janice Nicholson, Senior Manager of Strategic Communications at SickKids. Janice has taken on the exploration and launch of social media at SickKids over the last few years and here are a few snippets related to social media. See the full interview where Janice talks about  what channels the hospital chose and why and describes the Upopulis platform. In a nutshell, social media use at SickKids is about providing trusted and consistent information, receiving feedback and listening to the conversation.

Ashley: Tell us about your experience. What unique learnings have you encountered?

Janice: I’ve learned that it’s important to manage expectations about social media. It is not the solution to all of our communications challenges; it is simply another tool in our tool kit. I also have come to believe that to have a real effect in the social network, we need to have a coordinated approach. We have a strong brand and to maximize our voice and reach our audience on channels like Twitter, we need to maintain one brand. By having too many voices out there we end up splintering off into smaller channels. If we maintain master accounts, we can share the messages of all of our SickKids family through one voice and reach a wider audience. The key is to target those messages using keywords and hashtags. There is a lot of interest in embracing social media at SickKids, but we must manage expectations of who is using social media at SickKids and how they will represent our brand. We are taking a phased approach and now that we have taken the time to listen and are beginning to establish a voice, we are on to the next phase. We plan to continue to build as we start to engage our staff and stakeholders and help engage them in the conversation.
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Ashley: What one piece of advice would you give other institutions for community building?

Janice:
Get involved with social media as fast as you can because if you’re not there they will still be talking about you. Being there allows you to know what is being said so you can respond accordingly. Since it’s free, it is a great tool for not-for-profit and publicly funded institutions. The important thing to remember is that you are entering a channel that moves at a crazy speed and you need to be extremely responsive. So while it is free to use, it requires resources and an investment of time and strategy. There are resources required and you have to take it seriously and have a plan.

FREE WEBINAR "Improving Patient Outcomes and Experience: How to Include the Patient and Family"

If you are interested in patient and family engagement in safety or other areas of health care, this looks like just the webinar and it is free registration.

Improving Patient Outcomes and Experience: How to Include the Patient and Family

The Agency for Healthcare Research and Quality tells patients that "The best way you can help to prevent errors is to be an active member of your health care team. That means taking part in every decision about your health care. Research shows that patients who are more involved with their care tend to get better results.” The Joint Commission encourages patients to be active participants through its SPEAK UP Campaign.

Unfortunately, the public mostly learns about patient safety through negative media stories. This thought-provoking presentation will teach you how it can be celebrated and how to encourage the patient's family takes some of the responsibility for safe care. Through storytelling and comparisons, Ms. Corina will leave you eager to include your patients and their families in patient safety.

But what exactly can the family do to be part of the team? How can they better understand their role in the patient's safety such as reducing falls, medication errors and hospital-acquired infections? Attend this webinar to learn how to communicate with families to make their presence work for you.

Participants will learn how to:

• Talk about patient safety with patients and their families to help ensure the best outcomes
• Teach patients’ guests about safety including falls, infections, medication safety, surgery safety and health literacy
• Reduce readmissions and injuries through clear, critical communication
• Get tips to develop a Patient Safety Advisory Council in your facility and learn how to choose the best representatives

Presenter

Ilene Corina, President and Founder of PULSE of New York

Selected as one of Modern Healthcare’s 100 Most Powerful People in Healthcare of 2009 and a Fellow of the AHA’s Patient Safety Leadership Training, Ilene Corina is a nationally recognized advocate for patient safety. She is the president and founder of PULSE of New York, a grassroots patient safety advocacy group that was formed in 1997. She runs support groups for survivors of medical injuries and develops patient safety programs for medical professionals and consumers of healthcare.

Ms. Corina has appeared as a patient-safety expert on CNN, Fox News and other television and radio news shows, and is a popular lecturer and author. She discusses the patient’s role in patient safety and the changing culture to form partnerships to improve outcomes. She also helps healthcare professionals work with patients and their families after a medical injury or death has occurred, and has developed curriculum on disclosure of medical errors.

Ms. Corina is a board member of the Joint Commission and the National Patient Safety Foundation, and has won numerous awards, including the 2010 MITSS HOPE award, presented by RL Solutions.