Thanks to a grant from OHSU’s Knight Cancer Institute Community Partnership Program, Ukandu spent the last 14 months performing primary research to identify potential gaps in services available to families impacted by a childhood cancer diagnosis. Through focus groups, surveys, and a series of interviews, this project engaged hundreds of families with a childhood cancer experience. What we found was a clear indication and desire for increased programs and services available to these families.

Our findings indicate three major gaps in services: mental health, community/connection outside of the hospital, and continuing care/services for those transitioning into survivorship/post-treatment.

Participants specifically reported seeking connection to a community where their “abnormal” is recognized and understood as (a new) normal. Such a community would allow for unvarnished, authentic, interactions among community members in casual conversation, engagement, and socialization. Access to a ‘knowing community’ of peers are offered by various interactions and various organizations at intermittent times throughout the year, but respondents clearly indicated that more opportunities to relate among a group of peers is critical to their emotional and mental health.

“The mental health struggles for the whole family were significant and largely unaddressed.” - Caregiver

Based on this information, and anecdotal evidence over the past 37 years, Ukandu is now pursuing additional programming and services that reflect this data and address these needs. With this new information, we are excited to continue to strengthen our existing programs while developing and growing new ones.