Social support among chronically ill adolescent and young adult patients using a hospital-based online health community as part of a palliative care program: A qualitative study.

Abstract

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial support/palliative care, increasing their risk for negative psychosocial outcomes. Online health communities (OHCs) have been recommended for AYAs as part of palliative care support programs; however, we lack research investigating palliative care programs targeting AYAs' psychosocial support needs that are delivered virtually and able to engage with patients both during and beyond inpatient admissions. Streetlight is a palliative care program designed for chronically ill AYAs. Developed as a complementary component that extends beyond the hospital setting, Streetlight Gaming and Online Team (SGOT) is an OHC aimed at facilitating social support to influence psychosocial outcomes. We investigated the existence and enactment of social support among chronically ill AYAs using SGOT and compared this to existing online social support categories to determine which support types are present within SGOT. This was a qualitative phenomenological study. We performed deductive thematic analysis based on existing online social support categories. Nine semi-structured interviews were conducted with SGOT participants. Social companionship/belonging, esteem/emotional, and informational support were most prevalent within SGOT. Thirteen subthemes emerged representing how social support impacted AYAs' psychosocial wellbeing. Notably, coping with/managing illness, sense of community and normalcy, recommendations and advice, and shared interests unrelated to illnesses were subthemes that resonated with AYAs and added value to their experiences. SGOT is an impactful OHC used to meet AYAs' social support needs. What makes SGOT especially unique is its virtual delivery, wherein AYAs can conveniently maintain beneficial relationships with other chronically ill same-aged peers. AYAs need spaces where they can feel normal and access continuous support, both within and beyond inpatient admissions. This study enhances our understanding of online AYA psychosocial support programs. Findings can be used by healthcare professionals to implement similar palliative care and psychosocial support programs.