Interactions Among Adolescents with a Parent in Hospice and the Hospice Care Team

项目摘要/摘要 尽管以家庭为中心的临终关怀受到了很大的关注，但很少有研究 审查了临终关怀团队如何与青少年家庭成员沟通，以解决 这一年龄段的独特需求。父母在临终关怀中心的青少年构成了弱势群体 有情感、实际、信息和社会支持需求的人群，并可能遭受 挥之不去的抑郁、焦虑、社会孤立、孤独和 当他们生病的父母在临终关怀时，这些需求是否得不到满足是不确定的。复利 这些情绪是一些青少年承担的照顾角色和渴望 在学校和友谊中保持一种平常感。 针对患病父母的需求，临终关怀团队往往忽视了 处于发展十字路口的青少年，可能会感到不堪重负 悬而未决的问题。临终关怀团队的成员可能不会发起Will Will的对话 父母向孩子提供必要的支持，可能只有很少的支持，甚至没有 与青少年家庭成员的互动。然而，至关重要的是临终关怀 团队，包括临终关怀志愿者，与 为有效的应对策略提供至关重要的支持，并改善青少年的长期生活质量 期限结果。 使用我们之前的研究开发的一种新的循证筛查工具，应对 和沟通问卷(CCQ)，这项研究将集中在临终关怀志愿者如何作为 临终关怀团队的成员可以帮助青少年进行更有效的沟通 解决父母在临终关怀中的青少年的信息、情感和支持需求。通过 确定与沟通生病的父母有关的青少年不适的领域， 照顾责任和对社会支持的需求，临终关怀志愿者可以鼓励开放 并为青少年提供一个可以获得信息的支持性环境 并提出问题，将痛苦降至最低，提高应对技能。 这项研究的目标是改善青少年与临终关怀团队的沟通，并 建立一个概念框架，鼓励临终关怀机构之间有意义的对话 志愿者和青少年在家访期间。使用混合方法的前瞻性方法， 研究人员将三角测量来自三组利益相关者的数据-青少年、临终关怀 志愿者和临终关怀团队-更深入地了解如何最好地提供帮助 青少年在患病父母生命的最后几个月。研究结果将具有临床意义 加强青少年与临终关怀之间有效沟通的启示 在这段困难时期，我们需要一个团队来提供青少年所需的支持。

Project Summary/Abstract Although much attention has been paid to family-centered hospice care, scant research has examined how hospice care teams communicate with adolescent family members to address the distinct needs of this age group. Adolescents with a parent in hospice comprise a vulnerable population with emotional, practical, informational and social support needs and may suffer from lingering and unresolved feelings of depression, anxiety, social isolation, loneliness and uncertainty if these needs are not met while their ill parent is in hospice care. Compounding these emotions is the caregiving role undertaken by some adolescents and the desire to maintain a sense of normalcy with school and friendships. Directed at the needs of the ill parent, the hospice care team often overlooks the needs of adolescents who are at a developmental crossroads and may feel overwhelmed with many unanswered questions. Members of the hospice care team may not initiate conversations will ill parents about providing needed support to their children and may have minimal or no interactions with adolescent family members. However, it is essential that the hospice care team, including hospice volunteers, engages in clear and honest communication with adolescents to provide vital support for effective coping strategies and to improve their long- term outcomes. Using a new evidence-based screening tool developed from our previous research, the Coping and Communications Questionnaire (CCQ), this study will focus on how hospice volunteers, as members of the hospice care team, may assist adolescents with more effective communication to address the informational, emotional, and support needs of teens with a parent in hospice. By identifying areas of adolescent discomfort related to communication about the ill parent, caregiving responsibilities, and need for social support, hospice volunteers can encourage open communication and provide a supportive environment in which teens may receive information and ask questions, serving to minimize distress and improve coping skills. The goal of this study is to improve adolescents’ communication with the hospice care team and to develop a conceptual framework that encourages meaningful conversations between hospice volunteers and adolescents during home visits. Using a mixed methods prospective approach, researchers will triangulate data from three groups of stakeholders—adolescents, hospice volunteers, and the hospice care team—to gain a deeper understanding of how to best help adolescents during the ill parent’s final months of life. Research findings will have clinical implications for enhancing effective communication between adolescents and the hospice care team to achieve the support adolescents need during this difficult time.