Strategies to Help Adosecents with a Parent in Hospice

描述（由申请人提供）：父母疾病的最后阶段对青少年来说是非常紧张的。然而，他们是如何度过这段充满压力的时光的，我们不得而知。这个项目的目的是建立一个理论框架，描述青少年及其父母在患病父母生命的最后几个月用来帮助青少年的策略，并确定保健提供者帮助青少年的方式。的具体目标是:1)描述的策略青少年使用,帮助他们管理自己的生活在父母的生命的最后几个月,2)描述的策略使用的父母来帮助他们的青少年儿童,3)描述的策略改变随着时间的推移,4)探索使用医疗服务满足青少年的需要,和5)描述的常用策略青少年和他们的父母来帮助青少年在父母的最后几个月的生命。扎根理论的一个基本原则是，拥有共同文化的群体往往也有共同的社会心理问题和可以识别和描述的过程。本研究将使用扎根的理论，因为我们相信父母在安宁疗护的青少年有一个共同的问题，他们管理生活的方式最好被理解为一系列复杂的互动，随着时间的推移而改变，并受到社会文化背景的影响。将从一个大型城市临终关怀医院招募20个家庭，其中有一位父母住在临终关怀医院，并有一名青少年子女（12-18岁）。父母和他们青春期的孩子都将被邀请参加，因为他们能够就他们在父母生命的最后几个月里用来帮助青少年的策略提供重要的观点。研究助理将在参与者的家中或临终关怀机构的私人房间进行60-90分钟的深度访谈。患病家长的面谈将根据他们的耐力进行修改。将使用恒常比较分析法来分析数据。编码将在每周的团队会议中通过小组讨论、协商或共识来建立。将通过采用同侪汇报来提高可信度。可确认性确保研究结果以数据为基础。PI将保持广泛的审计跟踪，包括所有转录、备忘录和图表，以跟踪与研究中不断变化的条件相关的决策，并记录所有理论决策。一旦理论框架发展起来，从临终关怀和姑息护理协会选出的临终关怀护士小组将检查和评论新兴理论与临床实践的一致性。这项研究将是第一个研究青少年和他们的父母用来帮助青少年处理父母即将死亡的策略。青少年在描述自己的需求方面处于独特的地位。因此，了解青少年的观点是制定有效干预措施的基础。

DESCRIPTION (provided by applicant): The final stages of a parent's illness are exceptionally stressful for adolescents. However, how they manage this stressful time is unknown. The purpose of this project is to develop a theoretical framework to describe strategies adolescents and their parents use to help the adolescent in the final months of the ill parents' life and to identify ways in which health care providers help the adolescent. The specific aims are to: 1) describe the strategies adolescents use to help them manage their lives during the parent's final months of life, 2) describe the strategies used by the parents to help their adolescent children, 3) describe how the strategies change over time, 4) explore use of health care services to meet the needs of the adolescent, and 5) describe the common strategies used by adolescents and their parents to help the adolescent during the final months of the parent's life. A basic principle of grounded theory is that groups who share a culture often also share psychosocial problems and processes that can be identified and described. Grounded theory will be used in this study because we believe adolescents of parents in hospice share a common problem and the ways in which they manage their lives are best understood as a series of complex interactions that change over time and are influenced by socio-cultural context. Twenty families with a parent in hospice and an adolescent child (12-18 years old) will be recruited from a large urban hospice. Both parents and their adolescent children will be invited to participate since they are able to offer important perspectives on the strategies they use to help the adolescent during the final months of the parent's life. The research associate will conduct 60-90 minute in-depth interviews in the participant's home or in a private room at the hospice facility. The ill parent's interview will be modified according to their stamina. Constant comparison analysis will be used to analyze the data. Coding will be established by group discussion, negotiation, or consensus during weekly team meetings. Credibility will be enhanced through the use of peer debriefing. Confirmability ensures the findings are grounded in the data. The PI will maintain an extensive audit trail including all transcriptions, memos, and diagrams to track decisions related to the changing conditions within the research and noting all theoretical decisions. Once the theoretical framework is developed, a panel of hospice nurses selected from the Hospice and Palliative Nurses Association will examine and comment on the emerging theory's congruence with clinical practice. This study will be the first to examine the strategies both adolescents and their parents use to help the adolescent deal with the approaching death of the parent. Adolescents are uniquely positioned to describe what they need for themselves. Understanding adolescents' perspective is thus foundational to developing effective interventions. PUBLIC HEALTH RELEVANCE: The impact of a parent's impending death on the adolescent (ages 12-18) is an emerging public health problem. This problem is related to a number of potential negative effects on the adolescent's health. This study is relevant to public health because it will be the first to examine the strategies both adolescents and parents use to help the adolescent deal with the approaching death of a parent in order to guide efforts to deliver more effective care.