Exploring end-of-life interaction in dyads of parents and adult children: a protocol for a mixed-methods study

Abstract

BackgroundA considerable number of terminally-ill adult children are outlived by at least one parent and receive palliative care prior to their death. At the same time, adult children continue to be confronted with their parents’ terminal illnesses and end-of-life situations. The current study explores the specifics of dyadic interaction at the end of life between a) adult children suffering from a life-threatening disease and their parents, and b) terminally ill parents and their adult children.MethodsThis prospective observational study aims at filling the existing gap on adult child-parent interaction specifics at the end of life using an exploratory mixed-methods framework. The mixed-methods framework combines a qualitative face-to face interview and quantitative self-report questionnaires to study the topic at hand. The qualitative interview will focus on experiences, expectations, and wishes with regard to dyadic communication, information about illness and prognosis, expressed and perceived burden and support as well as caregiving role at the end of life. The questionnaires will cover socio-demographics, loneliness, attachment style, social support, and emotional closeness.DiscussionThe research group is currently adjusting a semi-structured interview guide and questionnaire instructions based on the results of a multiprofessional scientific advisory board meeting (Jan. 2018). In a next step, and prior to qualitative and quantitative data collection, the questionnaires will be piloted on patients and their family members in a palliative care setting. The main expected results are i) a description of the specifics of the interaction within and between both dyads, ii) the development of hypotheses and a theoretical framework on the specifics, similarities, and differences for both study groups, and iii) clinical conclusions on specific psychosocial care needs of both groups.Trial registrationThe study was registered prospectively in the Health Services Research Germany register (Versorgungsforschung Deutschland – Datenbank) (Registration N° VfD_Dy@EoL_17_003897; date of registration: November 22, 2017) and in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00013206; date of registration: October 27, 2017). The study is visible in the International Clinical Trials Registry Platform Search Portal of the World Health Organization under the German Clinical Trials Register number.

Adult Child-Parent Dyadic Interactions at the End of Life: A Scoping Review

“…The present scoping review accentuates the paucity of studies that have been specifically designed to address both patients and their parent/adult child caregivers. The mixed methods study, ‘Dy@EoL—Interaction at the end of life in dyads of parents and adult children’,44 aims at exploring specifics of the interaction between dyads 1 and 2 and represents an important project in filling the aforementioned research gap. The project intends to develop psychosocial support interventions for patients and parent/adult child caregivers of both dyads and includes relatives regardless of their caregiver status 44…”

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

“…Prior to data collection, an interview guide was developed by the project team members (FAH, SSt) and scrutinized in a first meeting of the project's scientific advisory board (January 2018). 24,25 The interview was designed to elicit participants' experiences and needs regarding their relationship and relationship roles within the dyad; it was also designed to encourage participants to freely provide their perspectives. 26,27 Interviews were conducted by a trained researcher (FAH, LG) in the patient's room; in one of the recruitment centers (e.g.…”

“…19,23 The present study focused on these two specific dyadic constellations. It formed part of the larger research project Dy@EoL 24 which aims at developing and providing recommendations for needs-based psychosocial support interventions for both forms of adult child-parent dyads.…”

Exploring the status of and demand for palliative day-care clinics and day hospices in Germany: a protocol for a mixed-methods study

“…Publication of the study protocol represents the first step in this process. In their previous Dy@EoL project [ 23 ], the authors experienced that recruitment partners and scientists studying similar topics were interested in consulting the study protocol to obtain an overview of the project. Furthermore, the processes of establishing and developing institutions and measuring status and demand in palliative day-care clinics and day hospices are not necessarily straightforward.…”