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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

Published online by Cambridge University Press:  07 March 2024

Kelsea LeBeau Open the ORCID record for Kelsea LeBeau [Opens in a new window] ,
Jayne-Marie Raponi ,
Drew Walker ,
Anna Swygert  and
Emily Marchi
Kelsea LeBeau*
Affiliation:
College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA U.S. Department of Veterans Affairs, VA North Florida/South Georgia Veterans Health System, Gainesville, FL, USA
Jayne-Marie Raponi
Affiliation:
College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
Drew Walker
Affiliation:
Department of Behavioral, Social and Health Education Sciences, Rollins School of Public Health, Emory University, Atlanta, GA, USA
Anna Swygert
Affiliation:
Department of Pediatrics, University of Florida Health, Gainesville, FL, USA
Emily Marchi
Affiliation:
Department of Pediatrics, University of Florida Health, Gainesville, FL, USA
*
Corresponding author: Kelsea LeBeau; Email: kelsea.lebeau@va.gov
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Abstract

Objectives

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.

Methods

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.

Results

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.

Significance of results

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.

Keywords

palliative careadolescents and young adultspsychosocial supportonline health communitypeer support
Type
Original Article
Information
Palliative & Supportive Care , First View , pp. 1 - 10
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Copyright
© The Author(s), 2024. Published by Cambridge University Press.

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