‘Mums are sacred, and mums don’t die’: A mixed-methods study of adult child–parent dyadic relationships at the end of life

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.

Keywords:

• Adult children
• hospice care
• palliative care
• parent–child relations
• parents

Acknowledgements

The authors thank all adult children and parents for their participation, the institutional partners for facilitating recruitment and the scientific advisory board for supporting this project with their expertise. They acknowledge Valerie Appleby’s professional copyediting.

Authorship

Stephanie Stiel (SSt) (female), psychologist working as senior researcher, developed the original study plan and wrote the grant application. Franziska A. Herbst (FAH) (female), medical anthropologist working as senior researcher, led the project. FAH and Laura Gawinski (LG) (female), anthropologist working as researcher, collected and analyzed the data. SSt reviewed the consistency of the qualitative data and supervised the research process. FAH wrote the article. LG, NSch and SSt enhanced the quality of the article by revising it critically. All authors read and approved the final article.

Data sharing

The datasets analyzed in this study are available from the corresponding author upon reasonable request.

Ethics approval

The project was approved by the Ethics Committee of Hannover Medical School: no. 7610, 04/10/2017.

Additional information

Funding

The present study is part of the larger project ‘Dy@EoL – Interaction at the end of life in dyads of parents and adult children’, which is supported by the German Federal Ministry of Education and Research (BMBF) under Grant number 01GY1711.