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.

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.

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

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.

Growth curve modeling of virtual events and online engagement in a palliative care peer support online health community for adolescents and young adults.

OBJECTIVE: Online health communities (OHCs) have been identified as important outlets for social support and community connection for adolescents and young adults (AYAs) living with chronic illnesses. Despite evident benefits, there remains a gap in research on methods to maximize sustained patient engagement within OHCs. This study assessed per-patient daily commenting rates over time, as well as associations with program staff and volunteer-facilitated events and engagement. MATERIALS AND METHODS: We utilized data from 662 daily patient, volunteer, and staff comment totals within a Discord server hosted through the Streetlight at UF Health Streetlight Gaming and Online Team, between January 2019 and January 2022. Multilevel models were used to assess per-patient daily commenting rates and examine associations with OHC-level predictors of staff and volunteer-facilitated daily and seasonal events, as well as the number of daily active users. RESULTS: Per-patient comment rates showed an overall negative slope with time in most models. Unadjusted and adjusted growth curve models showed that daily events (ß = .21), seasonal events (ß = .18), and total daily active users (ß = .09) were all significantly associated with increases in per-patient daily comment rates. DISCUSSION: Results suggest that social event facilitation strategies can be applied to increase AYA patient engagement in OHCs. Seasonal events and staff and volunteer engagement may be the effective means of maintaining engagement among long-term patients. CONCLUSION: Our findings highlight the importance of staff and volunteer presence in OHCs in driving long-term patient engagement and in considering patient needs and perspectives in developing OHC features.

A Novel Palliative Care Peer Support Program for Adolescents and Young Adults: Survey and Factor Analytic Study.

Background: Palliative care literature indicates a dearth of programs addressing the psychosocial needs of adolescents and young adults (AYAs). Objectives: This study assessed patient-reported experiences of a palliative care peer support program, analyzed psychometric qualities of the program evaluation, and examined associations with quality-of-life scores to assess validity and potential impact on aspects of AYA quality of life. Design: This retrospective, cross-sectional study described self-reported Streetlight program evaluation and quality of life of AYA patients, exploratory factor analysis of survey responses, and analysis of associations with quality of life. Setting/Subjects: AYA participants (13-30) enrolled in the Streetlight program for at least six months were recruited during hospital admissions and clinic visits at UF Health Shands Hospital. Results: Participants' (n = 69) scores were high for Youth Quality of Life Instrument-Short Form (YQOL-SF) (82.6 of 100), and Streetlight evaluations (4.47 of 5). Patients endorsed themes of: high-quality friendships with volunteers, transformative impacts to wellbeing, and benefits to mental health and coping in open-ended responses. Analyses identified three factors explaining 61% of variance in Streetlight program evaluation responses: "Friendships and Support" (26%); "Coping, Family, and Providers" (20%); and "Diversion and Respect" (15%). Significant positive associations were found between Streetlight evaluation scores and YQOL-SF Belief in Self and Family factor scores, as well as between Streetlight evaluation Friendships and Support factor scores, and YQOL-SF total and factor-specific scores. Conclusions: Results suggest that the Streetlight program is a viable model to facilitate positive experiences, opportunities for socialization, and meaningful peer support for AYA patients.

"It Becomes a Family I'm a Part of We Get to Carry Each Other": Themes from Qualitative Interview of Patients Enrolled in an Inpatient Palliative Care Support Program for Adolescents and Young Adults.

Background: The pediatric palliative care literature provides little evidence regarding the lived experiences of adolescents and young adults (AYAs). Objectives: We sought to evaluate the aspects of a palliative care peer support program, which were most helpful to patients, and identify areas for improvement to better address their psychosocial needs. Design: This was a retrospective, cross-sectional study, which described self-reported Streetlight program evaluation using thematic analysis of interviews with AYAs. A total of 10 interviews was completed. Setting/Subjects: Thirty-three current and former Streetlight participants (13-30), enrolled in the Streetlight program for at least six months, were recruited during hospital admissions and clinic visits at UF Health Shands Hospital in the United States. Of the 33, 2 participants died before interviews could be conducted. A total of 10 interviews were conducted. Results: Thematic analysis of the 10 individuals identified 5 themes. They were (1) normalization of life in hospital, (2) mental health and instillation of hope, (3) companionship and connection, (4) diversity of volunteers, and (5) gratitude. Conclusions: Results suggest that AYAs who participated in a peer support, palliative care program benefitted from their exposure to volunteer social support. Addressing the need for continued study of this population provides opportunities to expand peer support, pediatric palliative care programs to other hospitals and care facilities.

Volunteer-Based Social Support Structures and Program Exposure Outcomes in an Adolescent Young Adult Palliative Care Peer Support Program.

Objective: To conduct a social network analysis (SNA) of patient-volunteer networks and assess the impact of patient characteristics on network measures. Background: Volunteers play a critical role in providing peer support to adolescent and young adult (AYA) palliative care patients. Streetlight at UF Health is a peer support palliative care program for hospitalized AYAs that aims at forming positive peer relationships through volunteer visits, events, and a virtual online health community. Methods: Data were collected on patient characteristics, hospitalizations, average length of stays (LOS), and volunteer visitation records. Egocentric SNAs were conducted on each patient to calculate network outcomes. Study participants were AYA patients (N = 69), enrolled in the US-based Streetlight program at UF Health Shands Hospital. Results: The LOS was significantly associated with network size (B = 0.583; 95% confidence interval; CI [0.463 to 0.702]). Autoimmune patients had smaller network sizes when controlling for LOS. Total hospital admissions predicted - 0.172 ([- 0.263 to - 0.080]) lower average repeat visits. Higher average repeat visits were predicted for patients who had cancer (B = 0.246 [0.046 to 0.447]) and awaiting organ transplantation (B = 0.370 [0.082 to 0.658]). Although cystic fibrosis patients received more visits (B = 0.364 [0.003 to 0.724]) compared with other illness populations, the network density was lower (B = - 0.580 [1.01 to - 0.155]). Cancer patients had networks with a higher diversity in volunteer repeat visits (B = 0.714 [0.312 to 0.920]). Conclusions: Significant relationships between patient characteristics and network outcomes highlight the differences in social support service delivery among diverse populations. These analyses can be utilized in practice to guide program delivery for high-need patients.