Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients
chronic patient; palliative therapy; psychosocial care; Adolescent; adult; article; Chronic Disease; clinical article; controlled study; data analysis; expectation; female; human; interview; male; personal experience; phenomenology; qualitative analysis; questionnaire; solidarity; young adult
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. <br/>METHOD(S): 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. <br/>RESULT(S): 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.
LeBeau K; Collins S; Zori G; Walker D; Marchi E; Pomeranz JL; Hart M
Palliative and Supportive Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/S1478951523000147" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000147</a>
Strategies to accelerate diagnosis of primary brain tumors at the primary-secondary care interface in children and adults
oncology
SUMMARY This article presents a shared view from practitioners with special interests in diagnosing and managing primary brain tumors in both primary and secondary care, in adult and pediatric disciplines; it examines the complexity of identifying whether it would be of benefit and feasible to try to identify those with brain tumors earlier, how this could be achieved and what evidence exists to justify such an approach. The experience of the HeadSmart Campaign in childhood brain tumor, using awareness as a method for driving service change, is used to illustrate how diagnostic practice can be changed across the primary and secondary care interface. This article highlights the importance of focusing upon the needs of patients with primary brain tumors as they represent a significant set of life-threatening and disabling diseases with significant implications for cancer and palliative services.
2013-09
Walker D; Hamilton W; Walter FM; Watts Colin
CNS Oncology
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.2217/cns.13.36" target="_blank" rel="noreferrer">10.2217/cns.13.36</a>