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压力格外大。然而，他们如何管理这段紧张的时间还是个未知数。这一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帮助青少年的策略，并确定保健提供者帮助青少年的方式。具体目的是：1)描述青少年在父母生命的最后几个月中帮助他们管理自己的生活的策略；2)描述父母为帮助处于青春期的孩子而使用的策略；3)描述这些策略如何随着时间的推移而变化；4)探索利用保健服务来满足青少年的需要；以及5)描述青少年及其父母在其生命的最后几个月中帮助青少年所使用的常见策略。扎根理论的一个基本原则是，拥有相同文化的群体通常也有共同的心理社会问题和过程，这些问题和过程可以被识别和描述。这项研究将使用扎根的理论，因为我们认为父母在临终关怀中心的青少年都有共同的问题，他们管理生活的方式最好被理解为一系列复杂的互动，这些互动会随着时间的推移而变化，并受到社会文化背景的影响。20个父母在临终关怀中心和一个青春期孩子(12-18岁)的家庭将从大型城市临终关怀中心招募。父母和他们的青春期子女都将被邀请参加，因为他们能够就他们在父母生命的最后几个月里帮助青少年的战略提出重要的观点。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分钟的深入采访。患病家长的面谈将根据他们的体能进行修改。采用恒定比较分析方法对数据进行分析。编码将在每周团队会议期间通过小组讨论、谈判或协商一致来建立。将通过使用同行汇报来提高可信度。可确认性确保了调查结果以数据为基础。PI将保持广泛的审计跟踪，包括所有记录、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。一旦理论框架被开发出来，一个从临终关怀和姑息护士协会挑选出来的临终关怀护士小组将检查和评论这一新兴理论与临床实践的一致性。这项研究将首次考察青少年和他们的父母在帮助青少年处理父母即将去世的问题上所使用的策略。青少年在描述自己需要什么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。 公共卫生相关性：父母即将死亡对青少年(12-18岁)的影响是一个新出现的公共卫生问题。这一问题与对青少年健康的一些潜在负面影响有关。这项研究与公共卫生有关，因为它将第一次审查青少年和父母都使用哪些策略来帮助青少年处理父母即将去世的问题，以指导提供更有效的护理的努力。

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.