PDF(Pubmed)
Abstract：
OBJECTIVE: The availability of psychosocial support measures has a significant impact on the quality of life of terminally ill and dying patients and the burden experienced by their relatives. To date, no intervention has specifically focused on promoting interaction within the dyads of the following: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. A national Delphi study was conducted to provide appropriate recommendations for dyadic psychosocial support measures.
METHODS: Recommendations were formulated from qualitative interview data on the experiences and wishes of patients and family caregivers within these two dyads. Experts from palliative and hospice care providers rated the relevance and feasibility of 21 recommendations on two 4-point Likert-type scales, respectively. Additional suggestions for improvement were captured via free text fields. Individual items were considered consented when ≥ 80% of participants scored 1 (strongly agree) or 2 (somewhat agree) regarding both relevance and feasibility.
RESULTS: A total of 27 experts (35% response rate) completed two Delphi rounds. Following the first round, 13 recommendations were adjusted according to participants\' comments. After the second round, consensus was achieved for all 21 of the initially presented recommendations.
CONCLUSIONS: The Delphi-consented recommendations for parents and adult children at the end of life provide the first guidance for hands-on dyadic psychosocial support measures for parent-adult child relationships, specifically. The next step could involve the structured implementation of the recommendations, accompanied by scientific research. This study was registered on October 27, 2017, with the German Clinical Trials Register (DRKS00013206).
METHODS: Recommendations were formulated from qualitative interview data on the experiences and wishes of patients and family caregivers within these two dyads. Experts from palliative and hospice care providers rated the relevance and feasibility of 21 recommendations on two 4-point Likert-type scales, respectively. Additional suggestions for improvement were captured via free text fields. Individual items were considered consented when ≥ 80% of participants scored 1 (strongly agree) or 2 (somewhat agree) regarding both relevance and feasibility.
RESULTS: A total of 27 experts (35% response rate) completed two Delphi rounds. Following the first round, 13 recommendations were adjusted according to participants\' comments. After the second round, consensus was achieved for all 21 of the initially presented recommendations.
CONCLUSIONS: The Delphi-consented recommendations for parents and adult children at the end of life provide the first guidance for hands-on dyadic psychosocial support measures for parent-adult child relationships, specifically. The next step could involve the structured implementation of the recommendations, accompanied by scientific research. This study was registered on October 27, 2017, with the German Clinical Trials Register (DRKS00013206).
摘要：
目的：社会心理支持措施的可获得性对绝症和垂死患者的生活质量及其亲属所承受的负担具有重大影响。迄今为止,没有干预措施特别侧重于促进以下群体之间的互动:(1)身患绝症的成年子女及其父母和(2)身患绝症的父母及其成年子女。进行了一项全国性的Delphi研究，以提供有关二元心理社会支持措施的适当建议。
方法：建议是根据定性访谈数据制定的，这些数据是关于这两个二元体系中患者和家庭照顾者的经历和愿望。姑息治疗和临终关怀护理提供者的专家在两个4点Likert型量表上对21项建议的相关性和可行性进行了评估，分别。通过自由文本字段捕获了其他改进建议。当≥80％的参与者在相关性和可行性方面得分为1（强烈同意）或2（有些同意）时，认为单个项目是同意的。
结果：共有27位专家（应答率35％）完成了两轮Delphi。在第一轮之后，根据参与者的意见调整了13项建议。第二轮之后,最初提出的所有21项建议都达成了共识。
结论：Delphi同意的父母和成年子女在生命结束时的建议为亲子关系的动手二进心理社会支持措施提供了第一个指导，具体而言。下一步可能涉及建议的结构化执行，伴随着科学研究。该研究于2017年10月27日在德国临床试验注册中心（DRKS00013206）注册。
方法：建议是根据定性访谈数据制定的，这些数据是关于这两个二元体系中患者和家庭照顾者的经历和愿望。姑息治疗和临终关怀护理提供者的专家在两个4点Likert型量表上对21项建议的相关性和可行性进行了评估，分别。通过自由文本字段捕获了其他改进建议。当≥80％的参与者在相关性和可行性方面得分为1（强烈同意）或2（有些同意）时，认为单个项目是同意的。
结果：共有27位专家（应答率35％）完成了两轮Delphi。在第一轮之后，根据参与者的意见调整了13项建议。第二轮之后,最初提出的所有21项建议都达成了共识。
结论：Delphi同意的父母和成年子女在生命结束时的建议为亲子关系的动手二进心理社会支持措施提供了第一个指导，具体而言。下一步可能涉及建议的结构化执行，伴随着科学研究。该研究于2017年10月27日在德国临床试验注册中心（DRKS00013206）注册。
