Supporting families facing life-limiting illness
A non-profit organization that provides resources to families of children with serious illnesses had previously conducted surveys with parents and clinicians in their network. While these surveys offered a useful benchmark of satisfaction and perceived value of the organization, senior leadership was interested in fielding a version of the survey that probed more deeply on the experiences, needs, and perceptions of these audiences, and engaged City Square Associates to conduct the next iteration of the research.
We initiated the study with a facilitated working session that provided the client with a more structured opportunity to reevaluate and improve the previously-used questionnaire. The session also proved to be a valuable opportunity for the client to clarify the broader goals of the research, and how the findings would ultimately be applied in their own work across marketing, communications, and content development. This collaboration resulted in a newly iterated survey instrument that kept some degree of similarity with the previous version for tracking purposes, whilst exploring other aspects of the parent and clinician experience: What needs do they have with respect to children with serious illnesses? What are the perceived strengths of the organization in meeting these needs? What kinds of tools, resources, and platforms are they looking for and what is the organization best positioned to offer?
The survey findings have since informed efforts around how the organization can better position its value to both parents and clinicians, and highlighted the kinds of resources that the organization should be investing in going forward. One major learning from the research was the extent to which clinicians especially find value in these resources, driven by their desire for a more granular understanding the emotional journey and needs of their patients and their families. The study helped refocus the priorities of the organization more closely to the needs of clinicians, understanding that it is often through them that parents and caregivers find the support they need to navigate all the stages of a child’s life-limiting illness.