Sandpiper Presch
In a single week, children living with Down syndrome can have anywhere between 5 - 10 medical and therapy appointments. With increased age and evidence of stable health, the frequency of appointments may decrease—however, there exists a long-established disparity in access to necessary care, which is known to worsen into adulthood (McGrath et al.,2011).
I was honoured to be part of an inspiring team of physicians, researchers and designers to develop Down Syndrome Care Hub—a first-of-its-kind online resource, dedicated to improving care for children and adults living with Down syndrome.
Background
Lived Experience:
Real Insights
In 2015, a survey was developed through the collaborative efforts of the Down Syndrome Resource Foundation, the University of British Columbia, and physicians from B.C. Children’s Hospital.
The objective of the survey was to highlight the medical and care-based needs of children and adults living with Down syndrome. By design, the survey also aimed to uncover critical gaps in the quality and access to medical care that is essential for individuals with Down syndrome.
Those asked to participate in the survey were the parents and caregivers of children and adults with Down syndrome. As a result of their lived experience, the participating parents and caregivers were able to provide invaluable insights relating to the needs (medical, care, and otherwise) of individuals with Down syndrome at varying ages and stages of life.
A Different Perspective
In 2016, a second, entirely new survey was conducted. This survey, distinct in its objectives and design, relied solely on the participation of Canadian physicians and resident doctors. By seeking the perspective of medical professionals who are responsible for Down syndrome care, the purpose of this survey was to reveal any knowledge and informational gaps, which have impacted the quality and coordination of care for individuals with Down syndrome.
Insights
Survey Discoveries
Both the Parent & Caregiver Survey, and the Physician & Resident Doctor Survey yielded valuable results respective to their goals. They effectively identified knowledge gaps within Down syndrome care, and were successful in highlighting the primary needs of individuals living with Down syndrome. Moreover, the survey results underscored the necessity for a comprehensive Down syndrome resource to support parents, caregivers, and health care professionals.
Parent & Caregiver Results
The results from the Down Syndrome Survey for Parents & Caregivers (2015) provided key insights into the experiences and specific care needs of individuals with Down syndrome. Notably, over half of the caregivers who participated in the survey reported that they used online Down syndrome resources, which included Facebook groups, and websites for Canadian Down syndrome societies. Of the individuals with Down syndrome represented in the survey, an overwhelming 91% were found to reside at home with their families, reflecting the central role that strong familial support plays in their lives. These survey findings emphasize the necessity of care coordination for individuals with Down syndrome. In addition to their families and/or caregivers, individuals with Down syndrome typically receive care from both a primary and secondary physician, often accompanied by the use of community services. When multiple parties are involved, as with Down syndrome care, it is essential that relevant information is made easily accessible for all groups—each responsible for specific care needs (Down Syndrome Survey, 2015).
Online Resources
60% of the parents and caregivers who participated in the survey use online Down syndrome resources.
Prevalence of Surgery
72% of the individuals with Down syndrome represented in the survey have needed at least one surgery.
Medication Usage
81% of the individuals with Down syndrome represented in the survey are currently taking medications and/or supplements.
Physician & Resident Results
The results from the Down Syndrome Survey for Physicians, Health Care Professionals & Residents (2016) revealed a consensus, among participants, regarding the need for further Down syndrome knowledge. Almost all participating physicians and resident doctors reported having some level of experience with Down syndrome care: ranging from moderate to frequent involvement with patients. Some key areas of inquiry, as commented by physicians, included community support, puberty and adolescence, and behavioural management. These survey findings highlight the importance of added educational resources—to empower medical professionals with the information necessary to provide comprehensive care for individuals with Down syndrome (Down Syndrome Survey, 2016).
Need for Information
60% of the resident doctors who participated in the survey agree that they require further information concerning Down syndrome.
Friends and Family
30% of the resident doctors who participated in the survey have friends or family members with Down syndrome.
DS Experience
94% of the physicians who participated in the survey have experience, of some degree, caring for individuals with Down syndrome.
Challenge
All in One Place
In response to the needs identified in the 2015 and 2016 surveys, our team sought to create an online “hub” that would translate years’ worth of complex medical and care information, into a single comprehensive Down syndrome resource. From the outset, it was clear that the success of this project would depend on our ability, as a team, to deliver an information rich resource that would be engaging, and easy to navigate, for the parents, caregivers, and
health care providers of individuals with Down syndrome.
High Level Goals
1.
Provide information on the care, over a life-time,
for individuals with Down syndrome.
2.
Create a resource that is easy to use,
and encourages content engagement.
3.
Address the gaps in Down syndrome knowledge,
as identified by the target user group.
My Role
I worked as a UX/UI designer on the Down Syndrome Care Hub project—in collaboration with a team of physicians, researchers, and a fellow designer. Additionally, alongside physicians and researchers, I worked to manage the content integration for the website.
Insights
Questions, Research, and
Analysis
When gathering information for a project—I believe that asking the right questions is one of the most important steps towards obtaining quality insights. These initial inquiries help to set the foundation for a successful and purpose-driven outcome; clarifying objectives, identifying potential challenges, and aligning the project with its intended goals. In the early stages of this project, I created a list of questions that would help to guide our design decisions as the website developed.
How might we distinguish our website from other Down syndrome resources, in order to ensure its successful adoption as a professional resource?
How might we design pictographs in order to effectively convey the nuances of Down syndrome related behaviours?
How might we present age specific information relating to Down syndrome, in order to elevate the content engagement of our site?
How might we present survey results on the website, in order to provide helpful insights for families and physicians?
Seen above, a small selection of the early-stage questions, which helped to inform the design direction of the Down syndrome Care Hub website.
Design Details
Welcome to
Down Syndrome Care Hub
Between appointments with general practitioners or paediatricians, specialists, and community services—just to name a few, it’s safe to say that coordination of care and easy access to information is of the utmost importance when it comes to Down syndrome care. Down Syndrome Care Hub was created in response to these challenges, as a comprehensive resource, designed to support the physicians, families and caregivers of individuals with Down syndrome. Whether you’re looking to learn about a specific topic, review care requirements, read up on medical guidelines, listen to stories and experiences, or find additional support—it can all be done through Down Syndrome Care Hub.
The Home page of Down Syndrome Care Hub. Organized according to age ranges with distinct care needs.
1 month to 1 year page: providing specific care and medical information for individuals with Down syndrome at this age.
Relevant medical information is accessed by selecting the icon, which represents the topic or physical area in question.
13 years to 21 years page: providing specific care and medical information for individuals with Down syndrome within this age range. Medical needs change through each stage of life with Down syndrome, some stages (as shown above) require a larger number of "guidelines" to address all relevant topics.
Checklists page, which offers downloadable PDF checklists for Down syndrome care at each stage of life.
Contact page where families, caregivers, and physicians can provide feedback and share their experiences.
Design Details
Driven by Knowledge
Designed for Accessibility
The foundation of Down Syndrome Care Hub is supported by years’ worth of research, medical expertise, patient interactions, survey data, and lived experiences. Through the collaborative efforts of our team, an extensive volume of Down syndrome information has been brought together and organized in a manner that is engaging, and that allows users to locate relevant materials with ease.
Information at the Ready
Our team did the work of collecting information so that users don’t have to! Down Syndrome Care Hub offers a host of medical guidelines, articles, and community support resources—that are easy to find, and all in one place.
Project Results
Positive Impact &
Steps for the Future
The creation of Down Syndrome Care Hub has proven helpful to both physicians and families—as they seek important information, guidelines, and additional resources relating to life and care for individuals with Down syndrome.
After completing the preliminary version of the Down Syndrome Care Hub website, participants from the original two surveys were contacted and encouraged to review the site, and provide their feedback. Through this process, our team hoped to gain a better understanding of how effectively the Down Syndrome Care Hub website was able to fulfill the specific needs expressed by physicians, families and caregivers.
Overall feedback on the website was extremely positive. The focused effort
and attention to detail within our team, which was necessary to create a comprehensive Down syndrome resource, was widely recognized by participants from both survey groups, who later reviewed the site.
Early Feedback & Additions
Early on, our team received a specific piece of feedback from one of the participants in the physician and resident survey. After reviewing the website, this participant suggested that Down Syndrome Care Hub might benefit from the inclusion of a space with links, entertainment, and videos dedicated for kids—a so-called ‘Kids Corner’. By appealing to the needs of parents, the ‘Kids Corner’ was imagined as a place where children could watch, learn and listen—while their families and caregivers utilized the website. Our team was quick to listen and incorporate this feedback; the ‘Kids Corner’ can now be easily accessed from the main navigation of Down Syndrome Care Hub.
"I love the kids corner, I think it suddenly makes the website feel like it's aimed at parents and families."
References
McCabe, L. L., Hickey, F., & McCabe, E. R. B. (2011). Down syndrome: Addressing the gaps. The Journal of Pediatrics, 159(4), 525–526. https://doi.org/10.1016/j.jpeds.2011.06.026
McKenna, D., Hanbury, P., Ipsiroglu, Dr. O., Stockler, Dr. S., Armstrong, Dr. L., Beyzaei, N., Chan, M., Marwaha, A., Tse, E., Fawcett, S., & Derry, K. (n.d.). (rep.). Down Syndrome Survey for Parents & Caregivers Summary Report 2015. Down Syndrome Research Foundation, BC Children’s Hospital, University of British Columbia.
Stockler, Dr. S., Bleier, M., McKenna, D., Hanbury, P., Ipsiroglu, Dr. O., Beyzaei, N., & Chan, M. (n.d.). (rep.). Down Syndrome Survey for Physicians, Health Care Professionals & Residents Summary Report 2016. UBC Teaching and Learning Enhancement Fund (TLEF) and in collaboration with the Down Syndrome Research Foundation and the Sleep Network team.