Providing a support network for parents navigating the complexities of Down syndrome

Platforms

iOS, Android

Deliverables

UX Research, Product Strategy, UX Design

Fostering a safe space and active community

The Down Syndrome Diagnosis Network (DSDN) addresses a critical gap in online support communities by providing a tailored platform for parents of children diagnosed with Down syndrome. Recognizing the shortcomings of existing social media groups, particularly in navigating Facebook Groups’ algorithms and additional privacy concerns, we worked with the DSDN team to put together a user-centric approach to developing a new social platform while strategizing how to effectively transition over 20,000 existing users from their existing Facebook Groups network.

Through client workshops and user surveys, we gained insights into the specific needs and challenges faced by parents seeking support in this community by directly reaching out to DSDN’s network. This informed the creation of a platform designed to offer a safer and more communicative space for parents to connect and share experiences without the obstacles present in traditional social media groups.

To ensure alignment with our client’s vision and goals for DSDN, we conducted in-depth workshops focused on understanding the platform’s objectives, users, and user journeys. Central to these discussions were the challenges parents encounter when broaching sensitive topics, the importance of feeling heard and valued within the community, and the value of the community serving as an active resource for parents navigating the complexities of Down syndrome.

Additionally, our workshops delved into the role of moderators in fostering a positive user experience. We explored the responsibilities and challenges faced by moderators in addressing user concerns, enforcing community guidelines, and maintaining a respectful and inclusive atmosphere. By understanding the unique needs and perspectives of both parents and moderators, we devised strategies to empower all users with the tools and support necessary to effectively manage and nurture the DSDN community.

Uncovering the strengths of DSDN’s community

In tandem with stakeholder workshops, we conducted extensive user surveys within DSDN’s existing communities to glean firsthand insights into the challenges and pain points experienced by parents and moderators alike within their current DSDN Facebook Groups. Through this data-driven approach, we unearthed a large net of nuanced needs and concerns.

For parents, the primary focus revolved around the need for a comfortable, safe space to share experiences and seek support. Many expressed frustration with the lack of visibility and opportunities to feel heard within the noisy landscape of Facebook Groups. A recurring need emerged for a genuine sense of community and the desire to forge personal connections with others facing similar journeys. Moreover, accessibility to resources was another critical concern, with parents expressing the need for centralized and easily accessible information about Down syndrome.

Moderators voiced their needs shaped by their role in facilitating community engagement and ensuring a positive user experience. The first of these was a sense of immediacy in moderating content to address emerging issues promptly and efficiently. Maintaining user engagement was another key requirement, with moderators seeking to sustain vibrant and active communities. Amidst these responsibilities, moderators also emphasized the importance of feeling valued and recognized for their contributions to fostering supportive environments within their communities.

Piecing together the pillars of DSDN

From the insights gathered, we distilled the project’s needs and objectives into three overarching pillars of value for DSDN: community, safety, and accessibility. These pillars encapsulated the collective aspirations of parents, moderators, and of the platform itself, identified through our workshops and research.

Drawing from our understanding of the most pressing challenges faced by parents and moderators, we prioritized features that would deliver the highest impact in enhancing user experience and achieving platform goals with considerations to the three values we identified. This involved creating a robust information architecture and identifying key features on a value and effort matrix to effectively identify the following phases of design and release. By distilling our insights into actionable design decisions, we laid the groundwork for a platform that is not only intuitive and user-friendly, but also deeply resonant with the entirety of the DSDN community.

Ensuring a seamless migration of 20,000+ users

One primary challenge we addressed during ideation was how to effectively tackle the challenge of migrating over 20,000 existing users from Facebook Groups to DSDN while also opening up the community to new prospective members of the community. In order to do so, we worked with the DSDN team and used our insights to put together a series of structured onboarding questions that would seamlessly sort users into their appropriate groups. We wanted to make sure that we were enabling quick access for existing members to their current groups’ counterpart from Facebook Groups, and helping new users feel welcome within these communities as well.

With the onboarding questions in place, our next focus shifted to devising a migration plan for existing Facebook users. Collaborating closely with DSDN moderators, we crafted a phased approach. This approach involved issuing unique passcodes to each Facebook Group, distributed as a follow-up to the previously answered surveys. Additionally, we selected specific groups to enter the DSDN communities in an initial round of live user testing. This strategic selection allowed us to gather valuable feedback and assess the current usability of the app firsthand, ensuring that any necessary adjustments could be made before scaling up the migration process.

Opening up to the rest of the community

Following the completion and approval of our designs with the clients, our development team swiftly transitioned into building the platform for iOS and Android, with English and Spanish translations. This transition was facilitated by the use of annotations implemented throughout the design process. With the designs thoroughly documented, our development team laid the groundwork for the app’s testing phase and eventual rollout to users.

Our team and the DSDN team eagerly anticipate the app’s full release following the ongoing initial rollout with a select number of user groups. Collaborating closely with the DSDN team, our efforts are driven towards optimizing usability and functionality through active involvement. As we continue to gather feedback, we are both excited to see the DSDN platform’s release, and opening up the community to provide a safe, inclusive space for even more loving parents.