The what: 

• A focus group and individual in-depth interviews with fathers of children with a rare disease to better understand their own support needs and help a non-profit build better solutions to support them.

The why: 

• The Sturge-Weber Foundation (SWF) is a non-profit developed to serve the needs of families of children with Sturge-Weber Syndrome, a widely variable but serious genetic condition. The SWF identified that while many of the mothers of the children were actively engaged in their social media community, the fathers were not. I partnered with the organization to help identify what fathers’ experiences were like and to develop resources that fit their needs. 

The who: 

• Stakeholders: The SWF, a small, American-based non-profit that serves patients and families of children/adults with Sturge-Weber Syndrome around the world. 

The how: 

• Focus group with 4 fathers at the SWF conference, and in-depth interviews with 20 more fathers.

• Interviews were approximately 1 hour long, conducted remotely via phone or VC at the participants’ convenience.

• Participants were located in 7 countries (the US, Italy, Holland, New Zealand, Australia, Canada, and Montenegro).

• My interview guide asked each father to explain their experiences with living with a child with Sturge-Weber, how they asked for/received social support, and where their pain points were with current support processes offered by SWF.  

The impact:

• Insights: Fathers wanted more privacy than most social media solutions could offer, and operated better in 1:1 conversations with other fathers whose children showed similar symptoms.

• Next Steps: I worked with leaders to better understand their constituents’ needs across genders and determine paths forward given limited resources of the SWF. I then presented findings at a SWF conference and hosted a brainstorm for fathers to empower them to develop the findings into a workable solution based on the needs for privacy, complementarity, and active support identified in the study.