Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients.
Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients.
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评估一个基于医院的新型在线健康社区，以解决慢性病青少年和年轻成年患者的姑息治疗和社会心理护理因素。
DOI：
10.1017/s1478951523000147
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发表时间：
2023
影响因子：
2.2
通讯作者：
Hart,Mark
中科院分区：
文献类型：
--
作者：
LeBeau,Kelsea;Collins,Sarah;Zori,Gaia;Walker,Drew;Marchi,Emily;Pomeranz,JamieL;Hart,Mark
慢性疾病青少年和青壮年(AYA)患者在获得心理社会护理方面遇到障碍。接受姑息和心理社会护理的阿亚斯人从这些服务中获得了许多好处。然而，我们仍然缺乏针对AYA心理社会需求的适合年龄的项目的研究，这些项目是虚拟交付的，并延伸到医院环境之外。Streetlight是一个为慢性病AYA设计的姑息治疗计划，提供Streetlight游戏联盟(SGL)，一个结合了基于同伴的支持、在线游戏和社区活动的在线健康社区(OHC)。我们通过评估慢性病患者的生活经验来评估SGL的有用性、可接受性和潜在的有效性。方法我们采用基于解释学现象学的定性评估方法。对9名长期患病的AYA进行了问卷调查和访谈，以获得他们使用SGL的生活经历的深入描述。对问卷数据进行描述性统计分析。访谈采用现象学数据分析，辅以解释学分析。结果AYAS报告了积极的SGL体验，并重视参与各种内容的能力，而参与期望很少。他们还描述了心理社会的好处，包括通过相互理解和分享经验缓解疾病、社区意识和团结。结果的重要意义强调了针对慢性病AYA的虚拟姑息心理社会护理计划的有效性和可接受性。研究结果还表明，SGL和支持使用OHC来满足AYA的心理社会需求是有效的。这项研究可以指导未来在其他医院环境下在线姑息心理社会护理项目的规划和实施，从而产生类似的有益和有意义的经验。
ObjectivesChronically 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.MethodsWe 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.ResultsAYAs 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 resultsFindings 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.