Teens Taking Charge Transplant Website Launched December 1

Over the next few months, CAPHC Conversations will be featuring articles and resources from the AboutKidsHealth website.  For more information on AboutKidsHealth, check out their website, or contact Sean Schurr at sean.schurr@sickkids.ca.

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A new self-management website for transplant patients ages 12 - 18 has been developed by the Transplant and Regenerative Medicine Centre (TRMC) at The Hospital for Sick Children (SickKids). The impetus for Teens Taking Charge emerged from a needs assessment with teen patients and parents at SickKids. Discussions with these teens illustrated that there is a need for a range of tailored resources about their medical condition. Teen patients articulated factors such as pain, issues with body image, and wanting to be normal as common health-related stressors in their lives. These patients also described the need for resources about their health condition that can be accessed gradually overtime to compliment one-on-one time with health-care team members.

The website responds to these needs by helping teens learn how their peers have successfully coped with difficult issues and how they can manage their own long-term health. By providing a range of resources and advice, it offers hope to teens that they too can live successfully with a transplant. As teenage kidney and liver transplant patients navigate the transplant journey with their families, the website provides accessible education and support. This user friendly website, validated through usability testing, aims to engage families in the health education process. The website will also provide a tool for use by healthcare providers when communicating with transplanted teenaged-patients and their families.

The website features a number of interactive modules, including:

  • video clips of peers talking about medications, lifestyle changes and their transition to adult care
  • step-by- step animations showing what happens before, during and after transplant surgery
  • a range of tips and guidelines about how best to prepare for and manage their transplant
  • downloadable tools such as a health journal, medication schedules, diet sheets and more.

The content for Teens Taking Charge was developed by an interdisciplinary team of health-care professionals comprised of nurses, physicians, dieticians, social workers and surgeons, working with medical illustrators and medical content developers. Developed through a partnership between the TRMC and AboutKidsHealth, funding for the project was provided by Astellas Foundation and the Kidney Foundation of Canada and the needs assessment was funded by the Evelyn Simpson Reeves fund.  

Teen patients reviewed and tested the website during its different stages of development. Feedback was generated about what aspects of the website needed revisions, or could be improved and if any content was missing. This input was used to improve key features of the website, including navigation, content, and design. Additionally, the teenaged patients were clear about what aspects make the website attractive for teens to use.

At the end of the usability testing on the website, teenaged patients gave verbal feedback, including:

“[The website is] pretty easy to navigate, if you’re looking for something specific then you can find it pretty easily”

“[I] like the video because kids who don’t know very much can see other people’s point of view. And it’s helpful; it makes you learn a little”

A section for parents on the Teens Taking Charge website aims to help strategize what skills their child needs to be more independent and how to help them develop those skills. It also includes suggestions for successfully transitioning health-care responsibilities from parent to child before and after the transplant period.

Please bookmark teens.aboutkidshealth.ca/transplant and share the link with your colleagues. If you have any feedback or would like further information, please contact transplantandregenerativemedicine.centre@sickkids.ca.

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The CAPHC team is always interested in learning more about what is happening in the paediatric health care community. If you have a program, event, website, or initiative that you would like to share with the country, email info@caphc.org for more information.