Abstract
Addressing family needs for social/emotional support is part of the duty of oncology care teams. This research presents a (2020) scoping review and a (2019) focus group initiated to explore pediatric neuro-oncology parent experience of social/emotional support in conjunction with developing an online peer application to address family needs. Currently, the value of online support is in the forefront of clinical conversation. The focus group queried eight parents whose children were under neuro-oncology treatment in the Northwest USA. Thematic findings include—parents want supportive peers who have (1) a personal and deep understanding of parenting a child with serious illness (they “get it”); (2) particular characteristics and skills that promote and sustain relationships, including—(a) good social skills, (b) ability to engage in “balanced” (cancer/non-cancer) conversations, (c) individual similarities (beliefs, age of children, cancer diagnosis/treatment), (d) logistic commonalities (location, availability), (e) pro-social personal characteristics (i.e. sense of humor, emotional/social flexibility), and an (f) ability to navigate and maintain social/emotional boundaries. Parents also initiated discussion about “the burden of supportive relationships” and supporting families doing “normal” activities without worrying about treatment side effects and contagions. The literature review supports finding (1) above; reveals the paucity of evidence-based supports available to this population; underscores the critical need for practitioners and researchers to develop more evidence-based supports and interventions for families of children experiencing cancer; and supports practitioners’ consistently assessing parent and sibling social and emotional needs and then consistently referring or intervening when needs are identified.
SWK-12. PEDIATRIC NEURO-ONCOLOGY PARENT PERSPECTIVE ON ASPECTS OF SOCIAL AND EMOTIONAL SUPPORT FOR ONLINE APPLICATION