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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: [email protected]
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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 , Volume 22 , Issue 3 , June 2024 , pp. 432 - 443
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Copyright
© The Author(s), 2023. Published by Cambridge University Press.

Introduction

Adolescents and young adults (AYAs) with chronic and life-limiting illnesses are a distinct patient population with complex needs. This population continues to grow as survival rates improve for conditions that were previously fatal, such as cancer, cystic fibrosis, and sickle cell disease (Dunbar et al. Reference Dunbar, Hall and Gay2019; Sawyer et al. Reference Sawyer, Drew and Yeo2007). Managing the complexities of living with chronic illnesses in conjunction with the psychosocial dynamics of adolescence and young adulthood presents unique challenges for AYAs (Avutu et al. Reference Avutu, Lynch and Barnett2022; Barnett et al. Reference Barnett, McDonnell and DeRosa2016; Sawyer et al. Reference Sawyer, Drew and Yeo2007). Lack of adequate psychosocial support can make it difficult for AYAs to adjust to life with chronic illness and puts them at high risk for poor psychosocial functioning (Rosenberg et al. Reference Rosenberg, Bradford and McCauley2018, Reference Rosenberg, Zhou and Bradford2021; Zebrack and Isaacson Reference Zebrack and Isaacson2012), highlighting the importance of providing age-appropriate programs and services that are tailored to the needs of this population as a standard of care (Clark and Fasciano Reference Clark and Fasciano2015; Weaver et al. Reference Weaver, Heinze and Bell2016).

Palliative care programs, which address physical, emotional, psychosocial, and spiritual dimensions of illness and are often introduced early in the disease trajectory (Abdelaal et al. Reference Abdelaal, Mosher and Gupta2021; Pritchard et al. Reference Pritchard, Cuvelier and Harlos2011; Rosenberg and Wolfe Reference Rosenberg and Wolfe2013; Wiener et al. Reference Wiener, Weaver and Bell2015), are an important aspect of care for chronically ill AYAs as they provide many benefits to patients’ health and well-being (Clark and Fasciano Reference Clark and Fasciano2015; Rosenberg and Wolfe Reference Rosenberg and Wolfe2013; Wiener et al. Reference Wiener, Weaver and Bell2015). However, it is common for palliative care to only be designed for pediatric or adult patients, with AYAs then inappropriately lumped into one of these 2 groups. This has created a gap in care as palliative approaches utilized for pediatric or adult populations are not adequate for AYAs (Clarke Reference Clarke2015; Rosenberg and Wolfe Reference Rosenberg and Wolfe2013). AYA research supports using developmentally appropriate programs to provide palliative care that addresses the multifaceted psychosocial needs of AYAs (Avutu et al. Reference Avutu, Lynch and Barnett2022; Barnett et al. Reference Barnett, McDonnell and DeRosa2016; D’Agostino et al. Reference D’Agostino, Penney and Zebrack2011; Holland et al. Reference Holland, Walker and Henney2021; Pennant et al. Reference Pennant, Lee and Holm2020; Pinkerton et al. Reference Pinkerton, Donovan and Herbert2018). Among AYAs, psychosocial palliative care programs integrating aspects of social support, peer relationships, and technology have been recommended (Avutu et al. Reference Avutu, Lynch and Barnett2022; Lea et al. Reference Lea, Martins and Morgan2018; Sawyer et al. Reference Sawyer, Drew and Yeo2007; Zebrack and Isaacson Reference Zebrack and Isaacson2012) and can therefore serve as central focuses of these programs, such as online health communities (OHCs).

OHCs have been recommended for chronically ill AYAs and are often desirable because they can connect AYAs to same-age peers with similar illnesses, and they foster normalcy, relatability, and support (Kaal et al. Reference Kaal, Husson and Van Dartel2018; Lea et al. Reference Lea, Martins and Morgan2018; McCann et al. Reference McCann, McMillan and Pugh2019; Pritchard et al. Reference Pritchard, Cuvelier and Harlos2011). Illness-related barriers preventing AYAs from accessing peer relationships and psychosocial support can be overcome by using online platforms, with the potential to develop supportive and meaningful relationships that can improve health outcomes and psychosocial well-being (Helms et al. Reference Helms, Dellon and Prinstein2015; Kaal et al. Reference Kaal, Husson and Van Dartel2018; Poku et al. Reference Poku, Caress and Kirk2018; Pritchard et al. Reference Pritchard, Cuvelier and Harlos2011; Waldron et al. Reference Waldron, Malpus and Shearing2017; Zebrack Reference Zebrack2011; Zebrack and Isaacson Reference Zebrack and Isaacson2012). Further, utilizing OHCs for program delivery can be developmentally appropriate and appealing to AYAs (Ho et al. Reference Ho, O’Connor and Mulvaney2014; Kohut et al. Reference Kohut, LeBlanc and O’Leary2018; Solberg Reference Solberg2014; Willis and Royne Reference Willis and Royne2017; Zebrack Reference Zebrack2009). Though the benefits of OHCs have been demonstrated among AYA populations, research on using these programs for delivering AYA psychosocial palliative care remains sparse.

Streetlight program

Streetlight, located at the University of Florida (UF) Health Shands Children’s Hospital in Gainesville, Florida, is an innovative psychosocial palliative care peer support program for hospitalized AYAs with chronic and life-limiting illnesses that helps AYAs navigate their course of their illness and is introduced early in their disease trajectory (Streetlight 2021; Walker et al. Reference Walker, Marchi and Puig2022a, Reference Walker, Rujimora and Swygert2022b). Streetlight provides inpatient and outpatient volunteer visitation services to AYAs aged 13–25 with cancer, cystic fibrosis, sickle cell disease, patients awaiting organ transplantation, and other rare diseases. Volunteer in-patient visitation is designed to foster long-term meaningful relationships, normalize hospital experiences, and enhance quality of life among an especially vulnerable population (Barakat et al. Reference Barakat, Galtieri and Szalda2016; Barnett et al. Reference Barnett, McDonnell and DeRosa2016; Clark and Fasciano Reference Clark and Fasciano2015; Walker et al. Reference Walker, Rujimora and Swygert2022b). Unique to Streetlight, volunteers dedicate a minimum of 2 years of service and receive 8-to-10 hours of program orientation and 60+ hours of ongoing psychosocial palliative care education. More information on program protocol, services, and procedures and patient volume/reach can be found on Streetlight’s program website and in previous literature related to the program (Puig et al. Reference Puig, Lenes and Ardelt2015; Walker et al. Reference Walker, Marchi and Puig2022a, Reference Walker, Rujimora and Swygert2022b).

Streetlight gaming league program

The Streetlight Gaming League (SGL) is an OHC established as a complementary component of Streetlight that offers a virtual source of peer-based social support, online gaming, and community events for patients in Streetlight (Streetlight Gaming League 2021; Walker et al. Reference Walker, Marchi and Puig2022a). Housed within the Streetlight program, SGL focuses on addressing psychosocial aspects of palliative care and aims to encourage authentic relationships, enable continuity of relationships made during in-patient admissions, and reduce isolation through virtual support via a private Discord (Discord n.d.) server when in-person support might not be feasible.

Patients are invited to join SGL during hospital admissions and outpatient appointments. Patients consent or assent (with legal guardian) to a behavioral code of conduct outlining community behavior standards and Discord terms of service. While hospitalized, patients also have access to current-generation gaming consoles, online subscriptions, secure internet access, and a library of downloaded games. In Discord, patients can participate in select events and channels related to topics of interest. During hospitalization and following discharge, patients can stay in Discord and participate, however, desired, ranging from active contribution to passive observation. Streetlight staff and volunteers moderate the server and facilitate patient-centered events.

Objectives

Current understanding of programs targeting AYAs’ psychosocial needs through online platforms is underdeveloped, despite AYAs’ continued experience of unmet needs (Abdelaal et al. Reference Abdelaal, Mosher and Gupta2021; Barakat et al. Reference Barakat, Galtieri and Szalda2016; Holland et al. Reference Holland, Walker and Henney2021; Pennant et al. Reference Pennant, Lee and Holm2020; Smith et al. Reference Smith, Parsons and Kent2013). We aimed to evaluate the usefulness, acceptability, and potential effectiveness of SGL (Table 1) through an assessment of chronically ill AYAs’ lived experiences participating in the SGL program. A secondary objective was to explore whether participation style influenced participants’ experiences. There is value in understanding how AYAs participate in SGL, given research suggesting that how individuals participate with a platform could impact their experiences (Gerson et al. Reference Gerson, Plagnol and Corr2017; Li Reference Li2016; Malinen Reference Malinen2015; van Mierlo Reference van Mierlo2014). Exploring participation style could also inform implementation of SGL.

Table 1. Operationalizations of evaluation aspects assessed in the study

Methods

The well-being of AYAs was at the forefront of our study, ensuring it was conducted in a manner that emphasized participants’ voices (Kent et al. Reference Kent, Parry and Montoya2012; Rosenberg and Wolfe Reference Rosenberg and Wolfe2013). Given our objective of evaluating the usefulness, acceptability, and potential effectiveness of the SGL through the lived experiences of participating AYAs, we utilized a qualitative evaluation approach grounded in hermeneutic phenomenology, an interpretive research paradigm. Hermeneutic phenomenology was selected because it aligned with our inquiry about lived experiences of members of a community interacting with others in a shared online environment, allowing for an in-depth exploration and interpretation of chronically ill AYA patient experiences and how experiences manifest for different individuals using SGL (Bynum and Varpio Reference Bynum and Varpio2018; Flood Reference Flood2010; Lopez and Willis Reference Lopez and Willis2004; Neubauer et al. Reference Neubauer, Witkop and Varpio2019). Phenomenological studies have expanded to include individuals using online spaces, providing further support for this approach (Aarts et al. Reference Aarts, Vennik and Nelen2015; Bush et al. Reference Bush, Singh and Kooienga2019; Osler Reference Osler2020). Our study was guided by the consolidated criteria for reporting qualitative research checklist to improve rigor, trustworthiness, and credibility (Tong et al. Reference Tong, Sainsbury and Craig2007). Approval was obtained from the UF Institutional Review Board (No. 202000235). This study is part of ongoing research efforts to evaluate and manualize the Streetlight program (Walker et al. Reference Walker, Marchi and Puig2022a).

Participant recruitment

Based on recommendations for phenomenological studies, we aimed to conduct at least 8 interviews (Mason Reference Mason2010; Vasileiou et al. Reference Vasileiou, Barnett and Thorpe2018). Participants were recruited using purposeful and snowball sampling, ensuring selection of information-rich cases. To be included, participants were current Streetlight patients; currently participating or had previously participated in the SGL; between ages 13–25 (the age group served by Streetlight); able to speak, read, and write in English; and cognitively able to participate. Inclusion criteria were verified by Streetlight staff (Director and Assistant Director). Streetlight staff posted a recruitment flyer to the Discord’s general chat and directly messaged users reiterating the recruitment post and inviting individuals to participate. Interested participants provided electronic informed consent (adults) or consent with assent (minors) via research electronic data capture (REDCap), a secure, web-based platform designed to support data capture (Harris et al. Reference Harris, Taylor and Thielke2009).

Data collection

Data collection materials were developed using extensive, iterative vetting procedures with quantitative and qualitative experts and Streetlight staff. The questionnaires and interview guide were first shared with experts for feedback and revised. We then sent them back for another round of feedback. This process continued until all materials had been fully discussed, revised, and improved. Later, materials were shared with the Streetlight staff to receive their expert opinion as people who work directly with AYA patients and SGL members. Both individuals reviewed materials and provided feedback on their suitability and whether phrasing of content was appropriate. All materials were revised according to the feedback received.

Questions and subscales from psychosocial, palliative care, and online participation style research informed development of our data collection materials (Escobar-Viera et al. Reference Escobar-Viera, Shensa and Bowman2018; Hanley et al. Reference Hanley, Watt and Coventry2019; Kulandaivelu et al. Reference Kulandaivelu, Lalloo and Ward2018; Li Reference Li2016; Pennant et al. Reference Pennant, Lee and Holm2020; Walker et al. Reference Walker, Lewis and Lin2019). The participation style questionnaire was informed by research conducted on active/passive participation among platforms similar to SGL (e.g., social media, online communities, and social networking sites) and active/passive subscales from research (Escobar-Viera et al. Reference Escobar-Viera, Shensa and Bowman2018; Gerson et al. Reference Gerson, Plagnol and Corr2017; Hanley et al. Reference Hanley, Watt and Coventry2019; Li Reference Li2016; Malinen Reference Malinen2015; Verduyn et al. Reference Verduyn, Ybarra and Résibois2017). Elements were adapted to fit the context of this study. Research in the areas of psychosocial and palliative care for chronically ill AYAs guided development of interview questions, including the wording, use of balanced questions, introduction segment, and appropriate number of questions (Kulandaivelu et al. Reference Kulandaivelu, Lalloo and Ward2018; Pennant et al. Reference Pennant, Lee and Holm2020; Walker et al. Reference Walker, Lewis and Lin2019). The evaluative aspects and phenomenological underpinnings of our study were considered when drafting questions to ensure experiences of this unique population were being investigated and evaluation questions were being assessed. Literacy levels were assessed using the WebFX readability test tool (WebFX n.d.) and were considered satisfactory if they were between 6th and 8th grade literacy levels (Clinton-McHarg et al. Reference Clinton-McHarg, Carey and Sanson-Fisher2010). Data were collected between September 2020 and January 2021.

Participants were sent 2 electronic questionnaires via REDCap. The demographic questionnaire asked were about age, gender, length of Streetlight and SGL membership, and prior video game experience. The participation style questionnaire collected data to provide descriptors about how participants engaged with SGL (actively or passively). Active participation is when users are more engaged with content and content creation (posting, replying, and facilitating exchanges) (Li Reference Li2016). Passive participation is when users are more inclined to content consumption or monitoring content (browsing, viewing, and lurking) (Escobar-Viera et al. Reference Escobar-Viera, Shensa and Bowman2018; Verduyn et al. Reference Verduyn, Ybarra and Résibois2017). Participation style scoring (Figure 1) was used as a stratification tool to generally explore similarities and differences in how experiences manifest for individuals using SGL. After completing questionnaires, participants completed a 1:1 interview with a trained team member. Interviews were conducted online and recorded using Zoom© technology, lasting between 30 and 60 minutes. Participants were sent a $25 gift card after interview completion. Sessions were transcribed using Otter.ai© software and reviewed for accuracy.

Fig. 1. Scoring process for active and passive participation styles used to stratify study participants into 2 groups (active or passive) based on their overall participation style score. Participants stratified into the active participation style group had a positive overall participation style score. Participants stratified into the passive participation style group had a negative overall participation style score.

Data analysis

Descriptive analyses were performed using SAS Software (version 9.4), which included participation style scoring. Interviews were stratified by participation style scores prior to qualitative analysis to explore whether participation style influenced participant experiences. Qualitative analyses were performed by 3 trained researchers using NVivo 12 software. Data analysis was guided by phenomenological and hermeneutic principles described in the literature (Ajjawi and Higgs Reference Ajjawi and Higgs2007; Bynum and Varpio Reference Bynum and Varpio2018; Crist and Tanner Reference Crist and Tanner2003; Flood Reference Flood2010) and consisted of 4 stages: immersion, identifying meaning units, developing final meaning units, and establishing final themes and subthemes. Data analysis was completed independently for the first 2 stages, including immersion and identification of meaning units and collaboratively via weekly meetings for the final 2 stages of analysis. Researchers engaged with the hermeneutic circle throughout the analysis.

Results

Table 2 presents participant characteristics. Nine AYAs participated in the study. Explanations for not completing interviews included illness-related and COVID-19-related reasons that impacted the ability to participate. Six AYAs were identified as male and 3 as female. A majority (n = 7) of participants were between the ages of 18 and 25. Of the participants, 5 had active participation styles and 4 had passive participation styles.

Table 2. Demographic characteristics and descriptive statistics of AYA participants (n = 9)

Shared experiences and perceptions

Analysis revealed similarities among AYAs’ experiences and perceptions of SGL. Seven themes were shared among active and passive participants: (1) uniqueness of AYA patients, (2) acceptability of SGL, (3) user choice in content, (4) freedom from participation expectations, (5) reprieve from illness, (6) solidarity in chronic illness, and (7) sense of community. Themes and subthemes are shown in Table 3. Supporting quotes are provided in Table 4.

Table 3. Themes and subthemes among AYA participants with accompanying definitions and subtheme operationalizations

(A) indicates active participant theme/subtheme; (P) indicates passive participant theme/subtheme.

Table 4. Themes, quote numbers, and exemplary quotes

(A) indicates active participant theme/subtheme; (P) indicates passive participant theme/subtheme.

Uniqueness of AYA patients

Several participants discussed their unique experiences with being chronically ill at a young age. This was described as separate from pediatric or adult patient needs, due to the distinct phenomena associated with experiencing a period of developmental transitions while simultaneously receiving care. Some participants explained that being an AYA patient was like being in a gray area with a noticeable gap in care (quote 1). Further, participants felt out of place in hospital settings because they lacked designated age-appropriate programs and appropriate bedside manner. Participants further mentioned that SGL is one of the first programs in their experience to address the AYA care gap.

Acceptability of SGL

Participants were overwhelmingly positive when describing SGL. Most participants perceived the SGL as a beneficial program for those who use it because it provided social interactions, tailored care for AYAs, comfort when hospitalized, and a more normal teen experience, emphasizing its positive impact on chronically ill AYAs (quotes 2–3). When asked to discuss negative aspects of the program, few were identified by participants. However, some limitations of the social groups were noted, including group composition, frequency of engagement, and anxiety upon joining. One participant noted the lack of female participants as a drawback (quote 4). Others expressed they would like more people to actively participate. Passive participant uniquely noted that initial integration into the Discord could be anxiety-provoking, but this was soon overcome with the benefits of both peer and content engagement.

Passive participants provided perceptions about SGL delivery, explaining that the online format provided an alternative mechanism for engagement and allowed for increased accessibility, helping to overcome geographic barriers (quotes 5–6). One participant directly explained they could only participate because of the online format. Some also mentioned the online format was helpful during COVID-19 lockdowns when in-person interactions were not available. Additionally, many participants endorsed expanding Streetlight and SGL to other hospitals, explaining similar AYA-specific programs would be valuable and likely provide other AYAs with similar benefits (quotes 7–8).

User choice in content

Participants expressed autonomy over modes of engagement within the SGL platform, such as gameplay, chatting via the Discord server, or keeping up with the topic-based Discord channels. Most participants agreed that SGL appeals to multiple interests and has become a multifaceted platform with something for everyone, even if gaming is not a top interest (quotes 9–10). Although SGL was intended to bring AYAs together through gaming, participants felt it had evolved into something more “involved” and “inclusive,” bringing people together with a variety of interests. SGL also exposed patients to new things, allowing them to try activities outside of normal engagement (quote 11).

Freedom from participation expectations

The SGL environment was described as low pressure with few participation expectations or requirements, allowing participants to decide how to engage with the platform and its users. Many participants mentioned flexibility of participation as a programmatic strength. Participants appreciated the ability to engage as much or as little as they wanted and to be social on their own terms (quote 12). Some also appreciated the freedom to discuss topics or disclose information only if desired, especially topics related to being sick or personal illness experiences (quote 13). Moreover, several passive participants mentioned that regardless of participation frequency, the platform is always “there for you when you need it,” explaining SGL holds space for all types of participants and is always available, without expectations (quotes 14–15).

Reprieve from illness

All participants expressed that SGL provided much-needed relief from the negative effects associated with living with chronic illnesses, offering a source of distraction and acting as an outlet for AYAs to take their minds off their illnesses, treatments, and illness-related issues (quotes 16–18). Participants also mentioned SGL gave them something positive to look forward to when readmitted to the hospital. Being rehospitalized can be difficult, but the guarantee of SGL access helped make tough days better and improved the mood of users (quotes 19–21), providing participants with a positive outlook on at least one aspect of their hospital visit. Additionally, several mentioned the SGL enhanced their in-hospital experiences, providing an escape from the rough parts of being in the hospital (i.e., boredom, isolation, and loneliness) through entertainment and social interactions (quotes 22–23).

Solidarity in chronic illness

Participants found comfort in knowing that SGL users had the common experience of being sick at a young age, allowing users to relate to and support one another as they collectively navigated living with chronic illness. This feeling of solidarity was attributed to participants’ mutual understandings that came from their shared experiences. These similar experiences allowed participants to comprehend and empathize with what other users were going through (quotes 24–25). Moreover, some participants felt relieved that they did not have to explain their experiences of being sick; rather, there was an unspoken understanding about what it was like to be an AYA patient. Having mutual understandings provided a common ground to build relationships, connect, and interact with each other like typical people their age, allowing the focal point of social interactions to center around traditional AYA interests.

One benefit mentioned by passive participants was regaining a sense of normalcy into their everyday lives. Participants explained how SGL helped them feel normal by reducing feelings of isolation and loneliness (quotes 26–28). Rather than feeling like a patient with a chronic illness, SGL helped them feel like typical AYAs who get to hang out, play games, and act their age, adding to their experience of solidarity.

Sense of community

Many participants expressed a feeling of belongingness and genuine camaraderie, resulting in a sense of community. SGL facilitated social connection and communication by providing opportunities for positive social engagement among same-age peers, including during the COVID-19 strict lockdown protocols (quote 29–30). Social connection and communication also allowed for continuity of relationships beyond hospitalizations. One participant excitedly mentioned their upcoming trip to meet a fellow user in person (quote 31). Participants also mentioned that the SGL offered social support, adding to an overall sense of community. They described feeling generally supported by others, similar to being in a support group (quotes 32–34).

Specifically, among active participants, the mention of close friendships was common. They explained that the friendships were one of the best aspects of SGL and expressed feeling a mutual, close-knit bond between participants. Active participants also talked about how they use the platform to hang out with and share things with friends they made through SGL. It seemed many of them experienced a strong bond and strong appreciation for these friendships (quote 35).

Differing experiences and perceptions

There was one differing theme specific to active participants’ experiences: mental health benefits (Table 3). Active participants described experiencing cognitive and emotional advantages from SGL participation. Several explained the SGL was a mechanism for their healing process, wherein participation promoted therapeutic benefits to mental and emotional challenges associated with chronic illness. One participant explained how SGL engagement helped with their depression and anxiety (quotes 36–38). Active participants also mentioned interactions and connections impacted their demeanor and improved their overall mood, helping with their mental health. This included feeling happier and making day-to-day life better, especially days when they were not feeling well (quotes 39–40).

Discussion

This study evaluated the usefulness, acceptability, and potential effectiveness of a psychosocial palliative care online support program for chronically ill AYAs by assessing patients’ lived experiences with the SGL. SGL is a novel and innovative program aimed at addressing an existing care gap by incorporating AYAs’ preferences for online interventions into its delivery.

Overwhelmingly, AYAs had positive experiences, viewing SGL as a beneficial program, including during COVID-19. One salient aspect was the freedom to engage as desired without participation requirements and flexibility to elicit what worked best for their needs. When compared to more formal support groups involving stricter participation requirements, AYAs enjoyed the absence of interaction obligations. The ability to engage on their own terms allowed for a low-pressure environment and an AYA-centric space in which users continued to engage. This suggests that providing more choice in how AYAs utilize psychosocial support programs might be beneficial, potentially leading to increased engagement (Wiener et al. Reference Wiener, Weaver and Bell2015).

Additionally, though advertised as a “gaming” league, a key aspect contributing to positive experiences was AYAs’ autonomy to choose how they engaged, including but not limited to gaming. SGL appeals to multiple interests and allows users to try new activities and experience new content. As such, the SGL has evolved to continually meet patients’ psychosocial needs. Real-time patient feedback encouraged Streetlight to change the program name from Streetlight Gaming League to Streetlight Gaming and Online Team (Streetlight GO) as a programmatic adjustment to better reach patients who may benefit from Discord communication but are less interested in gaming.

This program also provided participants a reprieve from illness. Notably, SGL served as a distraction from everyday complexities of being sick by providing an outlet to temporarily focus on something other than their illnesses. This aligns with AYA research, suggesting the importance of online platforms as a distraction from illness-related issues and boredom while hospitalized (Kohut et al. Reference Kohut, LeBlanc and O’Leary2018; Lea et al. Reference Lea, Martins and Morgan2018). AYAs were relieved to have a space to escape while spending virtual time with people their own age. AYAs eagerly anticipated engaging with SGL when they were readmitted, knowing it would provide social interactions and an escape from the difficult parts of hospitalization. Moreover, SGL provided online interactions during COVID-19 when in-person visitors were not permitted, which may demonstrate an opportunity to engage AYAs with illnesses that require isolation or limited in-person exposure (Cheung and Zebrack Reference Cheung and Zebrack2017; Helms et al. Reference Helms, Dellon and Prinstein2015; Lea et al. Reference Lea, Martins and Morgan2018; Pritchard et al. Reference Pritchard, Cuvelier and Harlos2011; Zebrack and Isaacson Reference Zebrack and Isaacson2012).

Another salient aspect of SGL was the solidarity that emerged from the shared experience of being sick at a young age. AYAs’ shared experiences allowed for mutual understanding between users, fostered participants’ ability to empathize, and validated patients’ experiences. Because of patients’ mutual understanding, no one felt their chronic illnesses needed to dominate every conversation or be the only way they could relate. Rather, this solace allowed AYAs to transcend their patient status and become a group of AYAs who feel normal and get to forget their illnesses for a while. These findings align with a study that found having shared experiences led to reduced isolation and feeling more deeply understood (Waite-Jones and Swallow Reference Waite-Jones and Swallow2018). Participants’ expressions of solidarity also contributed to a sense of community wherein connecting with AYAs through shared experiences and mutual understandings resulted in an online community where people were supportive and helped improve their lived experiences. This study also provides further evidence that solidarity developed from understanding through shared experiences can serve as a mechanism of support for AYA peers (Breuer et al. Reference Breuer, Sender and Daneck2017; Pennant et al. Reference Pennant, Lee and Holm2020).

While experiences mostly overlapped across participation styles, there were some differences. Active participants discussed mental health benefits and emphasized close friendships made through SGL. In contrast, passive participants noted the sense of normalcy experienced in SGL and were less likely to describe their relationships as friendships. Still, passive participants appreciated SGL’s online delivery because it made engagement more accessible, providing unlimited access to same-age peers and support. These differences indicate that participation style may influence an AYA’s experience and, therefore, diverse needs and preferences should be considered when developing palliative care programs. Efforts should be made to present a holistic program that engages all participation styles to equitably serve each patient and provide a wide breadth of opportunities for engagement (Devine et al. Reference Devine, Viola and Coups2018; Hanley et al. Reference Hanley, Watt and Coventry2019; Treadgold and Kuperberg Reference Treadgold and Kuperberg2010).

Our study demonstrates that having access to and connecting with same-aged AYA peers can result in a sense of community and psychosocial benefits, aligning with existing literature (Breuer et al. Reference Breuer, Sender and Daneck2017; Cheung and Zebrack Reference Cheung and Zebrack2017; Pennant et al. Reference Pennant, Lee and Holm2020; Treadgold and Kuperberg Reference Treadgold and Kuperberg2010; Zebrack et al. Reference Zebrack, Bleyer and Albritton2006). Our findings parallel research by Cheung and Zebrack (Reference Cheung and Zebrack2017) that found facilitating peer interactions among AYAs help address psychosocial needs and is a critical component of AYA care. Results from the current study further support the importance of peer interactions for AYAs, how these interactions can be facilitated online, and the accompanying benefits of such interactions. AYAs need opportunities to engage in age-appropriate activities with same-age peers to aid healthy development and shift the focus away from illness-related factors (Pennant et al. Reference Pennant, Lee and Holm2020; Waite-Jones and Swallow Reference Waite-Jones and Swallow2018; Zebrack et al. Reference Zebrack, Santacroce, Patterson, Abram, Muriel and Wiener2016). Lastly, this study highlights the importance of further investigating the role OHCs and online platforms play in promoting social support within palliative and chronic care models.

Programs addressing the multifaceted nature of AYA illnesses are crucial and should be complemented with programs that provide a reprieve from illness, sense of community, participation autonomy, and meaningfulness. SGL is a good example of this as it is housed within the larger Streetlight program. Streetlight offers in-person palliative care and psychosocial services to patients through its in-hospital volunteer program and other in-hospital services (Walker et al. Reference Walker, Marchi and Puig2022a, Reference Walker, Rujimora and Swygert2022b). To complement the volunteer-based focus of Streetlight, SGL provides a platform that facilitates relationships between AYA peers with similar illnesses. While these programs may not be directly applicable to all settings, the platform (mode of delivery) could be implemented by hospitals serving AYAs, resulting in similar beneficial and meaningful experiences. Future research could undertake larger studies to determine the potential of such a program for wider dissemination across hospital settings.

Limitations

Our study describes a specific sample of AYA patients, so findings cannot be generalized to all AYA populations. Selection bias may have occurred as AYAs were a self-selecting group who chose to participate. Findings mostly highlighted perspectives of older AYAs, with the youngest being 17 years old. Perspectives of younger AYAs may differ from our findings. All participants reported having prior video game experience before SGL participation. While this aligns with reports that young people play video games at high rates (Perrin Reference Perrin2018), it could have biased findings. Lastly, historical context must be considered as this study occurred during COVID-19, which likely impacted data collected from participants.

Conclusion

This study expands the body of knowledge surrounding online palliative psychosocial care programs for chronically ill AYAs, bringing us closer to filling the AYA care gap. Utilizing a staff-moderated Discord server can be effective, developmentally appropriate, and appealing to AYAs. Findings can guide future programming and implementation of similar programs. Though program context might differ, we provide insight into a technological tool that could be used in other settings and adapted to fit the needs of different AYA patient populations.

Conflicts of interest

The authors declare no conflicts of interest.

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Figure 0

Table 1. Operationalizations of evaluation aspects assessed in the study

Figure 1

Fig. 1. Scoring process for active and passive participation styles used to stratify study participants into 2 groups (active or passive) based on their overall participation style score. Participants stratified into the active participation style group had a positive overall participation style score. Participants stratified into the passive participation style group had a negative overall participation style score.

Figure 2

Table 2. Demographic characteristics and descriptive statistics of AYA participants (n = 9)

Figure 3

Table 3. Themes and subthemes among AYA participants with accompanying definitions and subtheme operationalizations

Figure 4

Table 4. Themes, quote numbers, and exemplary quotes