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 (2024)
This study is a companion to the quantitative analysis of our Streetlight Gaming and Online (GO) Team (at time of analysis, named Streetlight Gaming League) to evaluate AYA patient experiences with the SGOT program and its effectiveness as a psychosocial intervention. This qualitative analysis conducted deductive thematic analyses on semi-structured interviews with participants in SGOT. Social companionship/belonging, esteem/emotional, and informational support were major themes of patient experiences, along with subthemes of coping, sense of community and normalcy, recommendations and advice, and shared interests unrelated to illness. These finding support the need for online AYA psychosocial support programs for AYAs to maintain beneficial relationships with other chronically ill same-aged peers and to access spaces where they can feel normal and access continuous support.
For more information, contact Kelsea LeBeau at klebeau@phhp.ufl.edu
LeBeau, K., Raponi, J.-M., Walker, D., Swygert, A., & Marchi, E. (2024). 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. Palliative and Supportive Care, 1–10. https://doi.org/10.1017/S1478951524000208
Evaluating an innovative virtual hospital-based gaming program to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients (2023)
This study analyzed our Streetlight Gaming and Online (GO) Team (at time of analysis, named Streetlight Gaming League) to evaluate AYA patient experiences with the SGL program and its effectiveness as a psychosocial intervention. Quantitative and qualitative methods were used in the form of questionnaires and semi-structured interviews to examine experiences and perspectives among nine SGL participants. Participants reported experiencing positive impacts and psychosocial benefits through participating in the SGL, such as a sense of camaraderie, continuity of relationships, mental health support, and connection. These findings highlight the relevance and meaningfulness of psychosocial support to chronically ill AYA patients. Evaluation results demonstrate the effectiveness of the SGL and provide evidence for the use of an online gaming platform as a psychosocial intervention.
For more information, contact Kelsea LeBeau at klebeau@phhp.ufl.edu
LeBeau, K., Collins, S., Zori, G., Marchi, E., Walker, A.., Hart, M., & Pomeranz, J. (2023) Evaluating an innovative virtual hospital-based gaming program to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients. Palliative and Supportive Care. https://doi.org/10.1017/S1478951523000147
Growth curve modeling of virtual events and online engagement in a palliative care peer support online health community for adolescents and young adults (2022)
This study assessed per-patient daily commenting rates over time, as well as associations with program staff and volunteer-facilitated events and engagement, within a Discord server hosted through the Streetlight at UF Health Streetlight Gaming and Online Team. We utilized data from 662 daily patient, volunteer, and staff comment totals between January 2019 and January 2022. Per-patient daily commenting rates were examined for associations with OHC-level predictors of staff and volunteer-facilitated daily and seasonal events, as well as the number of daily active users. Daily events, seasonal events, and total daily active users were all significantly associated with increases in per-patient daily comment rates.
Full manuscript can be found here.
For more information, contact Drew Walker at andrew.walker@peds.ufl.edu
Walker, A. L., Swygert, A., Marchi, E., LeBeau, K., Haardörfer, R., & Livingston, M. D. (2022). Growth curve modeling of virtual events and online engagement in a palliative care peer support online health community for adolescents and young adults. Journal of the American Medical Informatics Association. https://doi.org/10.1093/jamia/ocac252