Abstract

Objectives

The aim of the present study was to report the specific challenges pertaining to the experiences and needs of (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children, regarding their relationship and relationship roles. The study sought to identify similar and differing relationship patterns between the two dyadic types.

Design

This prospective observational study used an exploratory mixed-methods approach.

Participants

Patients and caregivers were recruited (Feb. 2018 – Nov. 2019) via general and specialist palliative care providers in Germany.

Methods

The study combined semi-structured interviews with quantitative questionnaires covering socio-demographic details, attachment style and emotional intimacy.

Findings

A total of 65 patients and 42 family caregivers participated in the study. Interview data indicate that illness situation and dependencies were perceived in both dyads to represent a relationship role reversal contrary to the ‘natural order’. With respect to dyad 1, adult children stressed their need for autonomy, whereas caregiving parents strived for greater intimacy in the relationship. Within dyad 2, terminally ill parents and adult children experienced a new relationship intensity. Questionnaire data showed that emotional intimacy was perceived by patients in both dyads and adult child caregivers as significantly higher in the current illness situation compared to the pre-illness situation.

Conclusions

This was the first study to contribute to an understanding of the different needs of terminally ill adult children/parents and their parent/adult child caregivers, thus contributing to an understanding of the different needs of these parties, both within and between the dyadic forms. The results suggest that the dyads share similar themes, which should be integrated into general support interventions; however, some themes appear more relevant for one dyad, only.

Implications for Psychosocial Providers

For both dyads, we recommend psychological counseling to support open communication and understanding between parties.

中文翻译：

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“妈妈是神圣的，妈妈是不会死的”：对生命尽头的成年子女与父母二元关系的混合方法研究

摘要

目标

本研究的目的是报告与 (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有关他们的关系和关系角色的经历和需求有关的具体挑战。该研究试图确定两种二元类型之间相似和不同的关系模式。

设计

这项前瞻性观察性研究采用了探索性的混合方法。

参与者

通过德国的一般和专科姑息治疗提供者招募患者和护理人员（2018 年 2 月至 2019 年 11 月）。

方法

该研究将半结构化访谈与涵盖社会人口学细节、依恋风格和情感亲密度的定量问卷相结合。

发现

共有 65 名患者和 42 名家庭照顾者参加了研究。访谈数据表明，疾病状况和依赖性在两个人中都被认为代表了一种与“自然秩序”相反的关系角色逆转。关于 dyad 1，成年子女强调他们需要自主权，而照顾孩子的父母则力求在关系中建立更亲密的关系。在 dyad 2 中，身患绝症的父母和成年子女经历了新的关系强度。问卷数据显示，与病前情况相比，二人组和成年儿童看护人的患者在当前疾病情况下的情感亲密程度明显更高。

结论

这是第一项有助于了解绝症成年子女/父母及其父母/成年子女照顾者的不同需求的研究，从而有助于了解这些各方在二元形式内部和之间的不同需求。结果表明，二元组具有相似的主题，应将其纳入一般支持干预措施；然而，一些主题似乎只与一对更相关。

对社会心理提供者的影响

对于双方，我们建议进行心理咨询，以支持双方之间的开放式沟通和理解。