Experiences and perceptions of referrals to a community-based physical activity program for cancer survivors: a qualitative exploration

Abstract

Background: Physical activity rates in cancer survivors continue to be low despite the known benefits and availability of evidence-based programs. LIVESTRONG at the Y is a national community-based physical activity program offered cost-free to cancer survivors, though is underutilized. We explored perceptions and experiences of staff and participating survivors to better understand program awareness, referrals and participation. Methods: LIVESTRONG at the Y program staff [directors (n = 16), instructors (n = 4)] and survivors (n = 8) from 8 United States YMCAs took part in 30-min semi-structured phone interviews between March–May 2019. Interviews were digitally recorded, transcribed, and evaluated using a thematic analysis approach. Results: Program staff themes included: 1) Program awareness should be further developed for both the general public and medical providers; 2) Strong relationships with medical providers increased program referrals; 3) Electronic referral systems between providers and LIVESTRONG would help to streamline the referral process; and 4) Bi-directional communication between program staff and medical providers is key to providing patient progress updates. Survivor themes included: 1) Survivors trust their medical team and the information they provide about physical activity; 2) Providers need to incorporate an action plan and referrals for survivors to be active once treatments are completed; and 3) Personal experiences of those who participated in LIVESTRONG resonate with survivors and increase participation. Conclusions: LIVESTRONG staff reported the need for an integrated electronic referral system and bi-directional communication with providers about participant progress. Survivors want physical activity education, electronic referrals and follow-up from their healthcare team, coupled with peer support from other survivors. Cancer care provider knowledge and electronic referrals during and after treatment may expedite and increase participation in this community-based program.