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Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients

Published online by Cambridge University Press:  27 February 2023

Kelsea LeBeau Open the ORCID record for Kelsea LeBeau [Opens in a new window] ,
Sarah Collins ,
Gaia Zori ,
Drew Walker ,
Emily Marchi ,
Jamie L. Pomeranz  and
Mark Hart
Kelsea LeBeau*
Affiliation:
Department of Health Services Research, Management & Policy, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA U.S. Department of Veterans Affairs, Veterans Rural Health Resource Center, North Florida/South Georgia Veterans Health System, Gainesville, FL, USA
Sarah Collins
Affiliation:
Social and Behavioral Sciences, College of Public Health and Health Professions, University of Florida, Gainesville, FL, USA
Gaia Zori
Affiliation:
Social and Behavioral Sciences, 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
Emily Marchi
Affiliation:
Department of Pediatrics, University of Florida Health, Gainesville, FL, USA
Jamie L. Pomeranz
Affiliation:
Department of Occupational Therapy, College of Public Health and Health Professions University of Florida, Gainesville, FL, USA
Mark Hart
Affiliation:
Central Administration Office, Sanford School of Public Policy, Duke University, Durham, NC, USA
*
Author for correspondence: Kelsea LeBeau, U.S. Department of Veterans Affairs, Veterans Rural Health Resource Center, North Florida/South Georgia Veterans Health System, 235 S Main Street, Gainesville, FL 32601, USA. Email: kelsea.lebeau@va.gov
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Abstract

Objectives

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research investigating age-appropriate programs targeting AYAs’ psychosocial needs that are delivered virtually and extend beyond the hospital setting. Streetlight is a palliative care program designed for chronically ill AYAs that offers the Streetlight Gaming League (SGL), an online health community (OHC) combining peer-based support, online gaming, and community events. We evaluated the usefulness, acceptability, and potential effectiveness of SGL through an assessment of chronically ill AYAs’ lived experiences.

Methods

We used a qualitative evaluation approach grounded in hermeneutic phenomenology. Questionnaires and interviews were conducted with 9 chronically ill AYAs to elicit in-depth accounts of their lived experiences of using SGL. Descriptive statistical analysis was performed on questionnaire data. Phenomenological data analysis, informed by hermeneutic analysis, was used to analyze interviews.

Results

AYAs reported positive experiences with SGL and valued the ability to engage in various content while having few participation expectations. They also described psychosocial benefits, including reprieve from illness, sense of community, and solidarity through mutual understandings and shared experiences.

Significance of the results

Findings highlight the usefulness and acceptability of a virtual palliative psychosocial care program for chronically ill AYAs. Findings also suggest the effectiveness of SGL and support using an OHC to meet the psychosocial needs of AYAs. This study can guide future programming and implementation of online palliative psychosocial care programs in other hospital settings, resulting in similar beneficial and meaningful experiences.

Keywords

Palliative careAdolescents and young adultsPsychosocial supportOnline platforms
Type
Original Article
Information
Palliative & Supportive Care , First View , pp. 1 - 12
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Copyright
© The Author(s), 2023. Published by Cambridge University Press.

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