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Shit Happens: an iKT project in HD
The purpose of this project is to partner families within the Hirschsprung’s Disease (HD) social media community with clinicians and researchers in a joint effort to address the most important information needs related to caring for a child with HD. Involving all relevant stakeholders to guide research of best practice is referred to as “Integrated Knowledge Translation,” a pillar of this project.
Caregivers are asking great questions. This project will help find the answers.
How did this all come about? In July 2011, Liz, a mother of a child with HD created an online Hirschsprung’s Community utilizing Twitter, Facebook and her personal blog “Roo’s Journey” to support families living with HD. http://roosjourney.wordpress.com.
Collectively, this social media campaign is called “Shit Happens.” The title was chosen in Liz’s words because “of its relevance, (but) primarily to break the barriers of an otherwise socially awkward topic. For a child and family the idea of ‘Shit happening’ tends to bring feelings of joy and relief. Many HD children suffer from chronic constipation and occasional bowel obstruction. When bowel movement finally occurs it is not for the faint of heart…hence the name. Laugh or cry…may as well laugh!”
In 2012, our research group partnered with Liz and her team to do a preliminary evaluation of this campaign. At that point, the HD social media campaign had already reached over 28 countries and had a potential audience of over 100,000 people. There were several topic areas that parents commonly had questions to, including extreme diaper rash and long-term outcomes after surgery. Other parents and caregivers would offer support and advice, but what was notably absent was input from researchers or clinicians to provide the latest evidence to help address concerns.
Hence this project started. The partnership between Liz and the research team had already been formed, and now the next logical steps include 1) making sure we understand what information related to HD parents want and need, and 2) helping to identify that information, summarize it and present it to caregivers in a way that can help them in their day to day life.
What have we done? Caregivers who use the HD social media sites were invited to participate in an online survey this past November. They were asked to identify issues that they want more information on, their confidence to currently manage these issues, satisfaction with existing resources, and how they would like to receive information to help guide their caregiving decisions in the future. 89 caregivers or individuals with HD completed the survey, providing us with valuable information!
At the same time, we surveyed pediatric surgeons across Canada to identify what they believe are the main issues for families. The results of both surveys have been compared to what is frequently talked about on the Facebook site and a list of the top information needs of caregivers has been made. Our team has prioritized this list, and our search for evidence has begun!
Results summarized thus far:
How will we find evidence? We are looking at published literature that addresses the identified issues, as well we have asked experts across Canada to reveal what guides their practice and for any resources they may be able to share. Using standardized approaches, this evidence will be reviewed, evaluated and summarized to share with caregivers AND back to the surgeons. What if there is not enough evidence on the issue? Then we have identified a gap – a great place to start a new research project to help build the evidence.
Caregivers will be kept informed of where we are in this project. There are times we will be asking for feedback and opinions. It is important that we hear from caregivers, as more input will create a more valuable end product.
If you are a caregiver or professional that is considering participating, please do! If you have already participated, we sincerely thank you for your help in the journey to provide the necessary answers.
Any comments or questions? We would love to hear from you.