Communication in dyads of adult children at the end of life with their parents and parents at the end of life with their adult children: Findings from a mixed‐methods study

Abstract

Objective 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. Methods 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. Results 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. Conclusions 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).

Consensus-based recommendations for psychosocial support measures for parents and adult children at the end of life: results of a Delphi study in Germany

“…(I) Three core themes regarding parent-adult child interaction at the end of life emerged from the Dy@EoL qualitative interviews with parents and adult children in dyads 1 and 2 (February 2018 to November 2019): (1) relationship with the dyad partner [29], (2) communication and information [30], and (3) support and relief [31]. Individual hypotheses (N = 22) describing the interaction specifics of parents and adult children at the end of life were derived from these empirical data for the three subject areas.…”