Connecting with healthcare providers at diagnosis: adolescent/young adult cancer survivors’ perspectives

Abstract

Adolescents and young adults (AYAs) with cancer are a vulnerable and underserved population. AYAs’ cancer survivorship is complicated by physical and psychosocial late effects which requires long-term follow-up. Connectedness with healthcare providers (HCPs) is a protective factor that may improve long-term follow-up behaviours of AYAs. However, little is known about AYAs’ experiences connecting with HCPs. The purpose of this study was to describe AYA cancer survivors’ experiences connecting with HCPs. This empirical phenomenological study interviewed nine AYA cancer survivors diagnosed during adolescence. Individual interviews were conducted and analysed using an adapted Colaizzi approach. The essential structure reveals that AYAs begin their experience of connectedness with a sense of disconnectedness prior to treatment. The diagnosis is a period of confusion and emotional turmoil that interfere with the AYAs’ ability to connect. When AYAs come to accept their illness and gain familiarity with the environment, they then put forth an effort to connect with HCPs. Although it takes time for AYAs to reciprocate efforts to connect, HCPs should be aware that AYAs carefully assess and make judgments about whether or not HCPs can be trusted. Findings raise awareness of the actions and behaviours of HCPs that hinder connectedness, and targeted in future research.

How Can Health Care Professionals Communicate Effectively with Adolescent and Young Adults Who Have Completed Cancer Treatment? A Systematic Review

“…as an individual, not just a ''number,'' and be perceived as more than just their illness. [8][9][10][11] Young people expressed a desire to stay connected with their ''normal'' life and want support from HCPs to do this and mitigate the impact of their cancer on their life. 8,10,11 To that end, AYAs wanted HCPs to invest time in genuinely getting to know the AYA as a person.…”

“…8,10,11 To that end, AYAs wanted HCPs to invest time in genuinely getting to know the AYA as a person. 9 AYAs expressed the importance of their personal schedules and needs which, in their minds, take precedence. Thus, AYAs wanted their time to be well managed by HCPs.…”

“…Moreover, AYAs may actively screen HCPs for the qualities of this ideal standard and even test the trust they place in HCPs. 9 Throughout, there were recurring themes of a desire for HCPs who are empathic/thoughtful, acknowledging the gravity of the situation AYAs found them in and its impact on their life. 8,10,11,13 Furthermore, HCPs who interact with AYAs should have professional competence specifically in AYA care, take AYAs seriously, and treat them like an adult.…”

“…10,13 The desire for professional competence was balanced by the desire to have HCPs who adopt ''a human approach'' showing genuine interest in the AYA. [8][9][10][11]13 Humor was raised as a communication tool to help foster the relationship between AYAs and HCPs. 9,10 AYAs were also forthcoming about the qualities of HCPs, which negatively affected the relationship.…”

Using Cocreation in the Process of Designing a Smartphone App for Adolescents and Young Adults With Cancer: Prototype Development Study (Preprint)

“…Throughout this time period, an adolescent typically re-negotiates relationships with his or her parents or caretaker for increased independence, however, a challenging illness burden like cancer limits his or her capability to do so [37][38] [39]. Healthcare providers were minimally engaged for the same reasons as previously stated, as healthcare providers too may have a restricting role on AYA independence [40] [41].…”