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.

What does community resilience mean in the context of trauma-informed communities? A scoping review.

Several communities are implementing trauma-informed, community-level approaches focused on addressing/preventing adverse childhood experiences (ACEs), yet most community resilience definitions from published articles are based on acute traumas. This scoping review aims to determine how community resilience is defined and operationalized within the context of chronic/complex traumas. METHODS: We performed a rigorous, comprehensive literature search using multiple databases. RESULTS: The 38 included articles addressed multiple types of chronic traumas, including historical trauma, poverty, minority stress, mass incarceration, and ACEs. A variety of definitions of community resilience were cited, several of which stressed the ability to thrive despite risk factors and the safety and wellbeing of residents. Few articles operationalized community resilience within the context of ACEs, suggesting significant gaps in the literature. CONCLUSION: This review can serve as an important building block to develop expanded definitions of community resilience for chronic traumas and assist communities in promoting community-wide responses to ACEs.