Institute for General Practice, Hannover Medical School, Hannover, Germany.
Psychooncology. 2021 Sep;30(9):1535-1543. doi: 10.1002/pon.5728. Epub 2021 May 18.
Patient-family member communication plays a decisive role in coping with an end-of-life situation and is strongly influenced by the dyadic relationship. There is a lack of research exploring and comparing the specifics of communication between (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. The present study aimed at describing and comparing communication specifics within these two dyads.
As part of the research project Dy@EoL on parent-adult child interactions, this mixed-methods study combined qualitative interviews and the Berlin Social Support Scales self-report questionnaire. Participants in both dyads were recruited via 12 inpatient and ambulatory palliative/hospice care providers between February 2018 and September 2019.
Participants included 65 patients (dyad 1: 19; dyad 2: 46) and 42 family members (dyad 1: 13; dyad 2: 29). Qualitative interviews revealed communication changes in the terminal illness situation and provided insight into each dyad partner's perception of openness and avoidance in the dyadic communication. The quantitative results showed that patients in both dyads provided significantly less informational support relative to family members. A strong similarity present in both dyads was the central motivation for limiting information sharing.
Individual preferences for information sharing suggest that the divergent needs of dyad partners must be carefully negotiated to ensure that patients are able to address important topics without putting too great an emotional burden on their family members. Tailored psychosocial support measures are needed to achieve this goal. The study was registered prospectively in the German Clinical Trials Register (registration N° DRKS00013206).
患者-家庭成员之间的沟通在应对临终情况中起着决定性的作用，并且强烈受到双元关系的影响。目前缺乏探索和比较（1）终末期成年子女与其父母以及（2）终末期父母与其成年子女之间沟通特殊性的研究。本研究旨在描述和比较这两个双元关系中的沟通特殊性。
作为 Dy@EoL 父母-成年子女互动研究项目的一部分，本混合方法研究结合了定性访谈和柏林社会支持量表自我报告问卷。两个双元关系中的参与者均通过 12 名住院和门诊姑息/临终关怀提供者招募，招募时间为 2018 年 2 月至 2019 年 9 月。
参与者包括 65 名患者（双元 1：19；双元 2：46）和 42 名家庭成员（双元 1：13；双元 2：29）。定性访谈揭示了在终末期疾病情况下的沟通变化，并深入了解了每个双元关系伙伴对沟通中开放性和回避性的感知。定量结果表明，与家庭成员相比，两个双元关系中的患者提供的信息支持明显较少。两个双元关系中都存在的一个相似点是限制信息共享的核心动机。
对于信息共享的个体偏好表明，双元关系伙伴的不同需求必须仔细协商，以确保患者能够解决重要问题，而不会给其家庭成员带来太大的情感负担。需要制定有针对性的社会心理支持措施来实现这一目标。该研究已在德国临床试验注册处（DRKS00013206）进行了前瞻性注册。
