The Case for Parent Programs
We have long believed that a childhood cancer diagnosis impacts the entire family. And while the impulse is, understandably, to focus attention on the patient or survivor, parents and siblings face their own hardships that are often ignored or misunderstood. Ukandu has always, in one way or another, included the entire family (patients/survivors, siblings, and caregivers) in our programs and we have repeatedly seen the benefit of doing so with our newest program, Ukandu Family Camp, perhaps serving as the best example of why whole family inclusion is not only beneficial, but vital.
2023 saw our second year of Ukandu Family Camp Program and first full week of the program. We had 72 campers represented by 20 families - that’s almost double from the year before! We also doubled our volunteer force with 35 volunteers helping with everything from beach outings to ice cream socials and outdoor movie nights.
The biggest change from year one included a much more robust Parent Lounge (or as we call it - the ‘Lounguary’. This parent’s-only space included multiple comfortable sitting areas, snacks, coffee and tea, activities, and most importantly, the opportunity for parents to connect with each other while knowing their children were being taken care of by dedicated volunteers.
Led and informed by two experts, Dr. Amy King and Dr. Michael Schwartz, we created (voluntary, opt-in) intentional programs and structures specifically for parent and caregiver participants. Throughout the week of camp, the Parent Lounge hosted daily ‘Coffee Talks’, led by Dr. Amy, parent-only art classes, massage therapists, crochet lessons, and a parent dinner. Overwhelmingly, parents reported the immense benefits they received from having separate, ‘parent-only’, time.
“It was really profound to discuss deeply personal issues with folks who share those issues, and Dr. Amy was great, respectful, articulate, and fully in tune with the nature of cancer kid parents. It was extremely beneficial” - Caregiver
92.3%of caregivers reported ‘greatly enjoying’ the Parent Lounge | 53.8% of caregivers reported the Coffee Chats to be their favorite part of UKANDU Family Camp |
All of this makes one thing abundantly clear, just like kids benefit from age-appropriate interaction and experiences with their peers - parents benefit from similar types of specific and intentional engagement.
“the Parent Lounge is a place where adults can just be” - Caregiver