Development of a preliminary model of connectedness with healthcare providers for adolescents and young adults with cancer.

Abstract

92 Background: Adolescents and young adults with cancer (AYA) have poorer outcomes than younger or older cancer patients. AYA survivorship outcomes are complicated by psychosocial late effects and engagement in risky lifestyle behaviors that may increase secondary cancers and other chronic illnesses. Earlier identification and enhancement of protective factors that foster healthy lifestyle behaviors is an NIH/NCI priority. Early connectedness with healthcare providers (HCPs) may diminish risk-taking behaviors and foster healthcare self-management in AYA survivors .The purpose of this presentation is to describe the processes of developing a preliminary model of connectedness with HCPs for AYA. Methods: A preliminary model of connectedness was initially derived from a concept analysis that systematically critiqued 28 peer-reviewed sources. The preliminary model of connectedness was then validated and expanded by results of a phenomenological study of AYA cancer survivors (n = 9) regarding their experience of connectedness with HCPs. Results: The concept analysis identified 7 critical attributes of connectedness: intimacy, belonging, empathy, caring, trust, respect, and reciprocity. Outcomes included: greater self-esteem, enhanced interpersonal skills, enhanced emotional adjustment, and greater identify exploration. Results of the phenomenological study uncovered two additional attributes of connectedness specific to AYA experiences of connecting with HCPs: a sense of gratitude and disconnectedness. The disconnectedness attribute indicated there are processes that can occur that either lead to an outcomes of sustained connectedness or disconnectedness. If AYA felt more connected (vs. disconnected) to their HCPs as a whole, then they continued to engage in long-term follow-up. On the other hand, if AYA felt more disconnected to their HCPs, it led to unwillingness to participate in long-term follow-up. Conclusions: A preliminary model of connectedness with HCPs for AYA was derived from two studies. This model can be used to help guide the development of interventions aimed at enhancing early connectedness and fostering long-term follow-up practices of AYA.