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

临终关怀中心青少年与家长以及临终关怀团队的互动

• 批准号: 9979111
• 负责人: Denice Colette Sheehan
• 金额: $ 19.45万
• 依托单位: KENT STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-05-01 至 2022-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9979111
• 关键词: Address; Admission activity; Adolescent; Anxiety; Area; Attention; Caring; Cessation of life; Child; Clinical; Communication; Communication Barriers; Coping Skills; Data; Development; Distress; Emotional; Emotions; Empathy; Family; Family member; Feeling; Friends; Friendships; Goals; Grief reaction; Home visitation; Hospice Care; Intervention; Life; Loneliness; Mental Depression; Methods; Modeling; Normalcy; Outcome; Outcome Study; Parents; Practice Guidelines; Psychometrics; Questionnaires; Research; Research Personnel; Role; Schools; Screening procedure; Site; Social isolation; Social support; Teenagers; Testing; Time; Trust; Uncertainty; Vulnerable Populations; Work; age group; base; caregiving; coping; efficacy study; evidence base; experience; family caregiving; hospice environment; improved; meetings; member; novel; prospective; psychologic; response; supportive environment; tool; volunteer

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.

项目总结/摘要 尽管以家庭为中心的临终关怀受到了很多关注，但很少有研究表明， 研究了临终关怀团队如何与青少年家庭成员沟通， 这个年龄段的特殊需求。父母在临终关怀的青少年是一个脆弱的群体， 有情感、实际、信息和社会支持需求，并可能患有 挥之不去的和未解决的情绪抑郁，焦虑，社会孤立，孤独和 如果他们生病的父母在临终关怀期间这些需求得不到满足，他们将面临不确定性。配混 这些情绪是一些青少年承担的责任， 在学校和友谊中保持正常的感觉。 临终关怀团队针对患病父母的需求，往往忽视了他们的需求。 处于发展十字路口的青少年，可能会对许多 没有答案的问题临终关怀团队的成员可能不会主动对话， 父母担心为孩子提供所需的支持，可能只有很少的支持或没有支持。 与青少年家庭成员的互动。然而，临终关怀是至关重要的， 包括临终关怀志愿者在内的团队，与 为有效的应对战略提供重要的支持，并改善他们的长期 长期成果。 使用一种新的基于证据的筛选工具，从我们以前的研究，应对 和沟通问卷（CCQ），本研究将重点放在如何临终关怀志愿者，作为 临终关怀团队的成员，可以帮助青少年更有效的沟通， 以解决信息，情感，和青少年的支持需求与父母在临终关怀。通过 确定青少年与患病父母的沟通有关的不适领域， 临终关怀志愿者承担着责任，需要社会的支持， 沟通，并提供一个支持性的环境，在其中青少年可以接收信息 并提出问题，以尽量减少痛苦和提高应对技能。 本研究的目的是改善青少年与安宁疗护团队的沟通， 建立一个概念框架，鼓励临终关怀机构之间进行有意义的对话， 志愿者和青少年在家访。使用混合方法前瞻性方法， 研究人员将对三组患者的数据进行三角分析，这三组患者分别是青少年、临终关怀患者、 志愿者和临终关怀团队，以更深入地了解如何最好地帮助 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意义 帮助青少年在这个困难时期获得所需的支持。