“It becomes a family I’m a part of…we get to carry each other.” Themes from qualitative interviews of patients enrolled in an inpatient palliative care peer support program for adolescents and young adults (2023)
This study featured a qualitative analysis of data collected from semi-structured interviews with adolescent and young adult patients of the Streetlight program. This qualitative analysis complements the survey and factor quantitative analysis published in 2022 by lifting up patient voices detailing their experience of chronic illness and Streetlight support.
Results of the thematic analysis revealed patient emphases of normalization of life in the hospital, mental health and instillation of hope, companionship and connection, diversity of volunteers, and gratitude.
For more information, contact Anna Swygert at anna.swygert@peds.ufl.edu
Full manuscript can be found here.
A Novel Palliative Care Peer Support Program for Adolescents and Young Adults: Survey and Factor Analytic Study (2022)
The purpose of this study was to evaluate the social, psychological, spiritual, cultural, and physical wellbeing of patients who use the Streetlight Program at UF Health Shands Hospital, UF Health Shands Children’s Hospital, and/or UF Health Shands Cancer Hospital. Study protocol was approved by University of Florida IRB in Gainesville, Florida (IRB201600568). Participants enrolled in the study answered the Youth Quality of Life Instrument-Short Form (YQOL-SF) Version 4.0 and the Streetlight Program Evaluation survey developed for the study.
Results of the mixed-methods study showed high scores on the Streetlight Program Evaluation, indicating higher patient satisfaction and positive endorsement of the program. Patients endorsed having happy memories in the Streetlight program and “real” friendships with program volunteers that helped them endure through difficult parts of their treatment. There was a significant association between Streetlight evaluation total survey average scores and average scores among items in the YQOL-SF Belief in Self and Family factor, indicating that the “Friendship and Support” factor and Streetlight’s emphasis on supportive relationships could impact patients’ overall quality of life.
For more information, contact Drew Walker at andrew.walker@peds.ufl.edu
Full manuscript can be found here.
Walker, A. L., Rujimora, J., Swygert, A., McNiece, Z., Yoon, E., Machado, M., Myers, K., Richardson, E., Lenes, E., Hebert, L., Marchi, E., Arthurson-McColl, Z., Lagmay, J., & Puig, A. (2022). A Novel Palliative Care Peer Support Program for Adolescents and Young Adults: Survey and Factor Analytic Study. Journal of Palliative Medicine. https://doi.org/10.1089/jpm.2022.0299
Volunteer-Based Social Support Structures and Program Exposure Outcomes in an Adolescent Young Adult Palliative Care Peer Support Program (2022)
Social support is crucial for adolescents and young adult (AYAs) patients with life-threatening and chronic illnesses. This study conducted social network analyses (SNA) to provide a quantitative analysis of interactions and connections between patients and Streetlight members. Using data 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.
Results of this study showed differences across measures of LOS, hospitalizations and disease population. LOS was significantly associated with network size, indicating longer lengths of stays correlated with denser network size, but total hospital admissions predicted lower average repeat visits. Higher average repeat visits were predicted for patients who had cancer and awaiting organ transplantation, while autoimmune patients had smaller network sizes when controlling for LOS. Although cystic fibrosis patients received more visits compared with other illness populations, the network density was lower. Cancer patients had networks with a higher diversity in volunteer repeat visits.
For more information, contact Drew Walker at andrew.walker@peds.ufl.edu
Walker, A. L., Marchi, E., Puig, A., Slayton, W., Dodd, V., McVay, M. A., & Livingston, M. D. (2022). Volunteer-Based Social Support Structures and Program Exposure Outcomes in an Adolescent Young Adult Palliative Care Peer Support Program. Journal of Palliative Medicine. https://doi.org/10.1089/jpm.2021.0426