German Clinical Trials Register

Acronym/abbreviation of the study

Dy@EoL

URL of the study

https://www.mhh.de/allpallmed/dyeol

Brief summary in lay language

With an aging society, the number of parents who are confronted with the death of their adult child is rising [1]. In Germany, approximately 16.000 adults die every year before reaching the age of 45 [1]. A considerable percentage of them is being survived by at least one parent and receives 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. According to the World Health Organization definition of palliative care, palliative care seeks to improve the quality of life of both patients and their families facing life-threatening illness [2]. Thus, the present research project focuses on the two dyads of adult children suffering from a life-threatening disease and their parents and terminally ill parents and their adult children. This explorative study (project duration: 01/10/2017 – 30/09/2020) aims at describing specifics of the interaction between dyads of both patient and family member groups in order to develop recommendations for specific psychosocial support interventions. Points of view of both groups are key to understanding support needs. Research questions are: What are the specifics of the interaction between a) adult children suffering from a life-threatening disease at their end of life and their parents and differences in comparison to the specifics of the interaction of b) terminally ill parents and their children? What are the needs of patients and their family members? The proposed investigation uses an exploratory mixed-methods framework. 1) Interviews and questionnaires will be used with patients and relatives to record expectations, motivations, wishes, and difficulties with regard to the dyad’s communication, perceived burden, support, information about illness and prognosis, as well as caregiving role at the end of life. 2) A theoretical concept will be developed on the basis of the analysis of qualitative interviews and quantitative questionnaires to answer the research question. 3) Interview and questionnaire results will then be presented, discussed, and augmented in an expert workshop. The workshop also serves to develop recommendations for psychosocial interventions. 4) Finally, results from the expert workshop will be put into writing and recommendations will be drafted and consented (online) by the scientific advisory group. To ensure high-quality support and care provision for terminally ill and dying patients and their relatives, their specific needs must be taken into account and psychosocial interventions must be made available. Examining with scientific methods the specifics of the interaction between adult children suffering from a life-threatening disease and their parents in comparison to the interaction of terminally ill parents and their children may provide better understanding of the distinct psychosocial needs of both dyads and may decrease the likelihood of developing negative health outcomes while increasing quality of life of patients and their relatives. References: 1. Bundesamt für Statistik, Bevölkerung und Erwerbstätigkeit. Natürliche Bevölkerungsbewegung 2014. (Subject matter series 1 Series 1.1) 2017, Statistisches Bundesamt: Wiesbaden. 2. World Health Organization, WHO Definition of Palliative Care. Available at http://www.who.int/cancer/palliative/definition/en/ [accessed 23/10/2017].

Brief summary in scientific language

Both palliative care patients and their family members face challenges in end-of-life care [1-4]. Relationship status between caregiver and patient may affect interaction at the end of life. Interaction between ill child and their parents may differ from interaction between an ill parent and their children in terms of communication, information about illness, expressed and perceived burden and support as well as caregiving role. Being the parent of a terminally ill adult child may pose different challenges and elicit different support needs than being the healthy adult child who is taking care of a parent who is – rather expectedly – survived by the child. So far, no study has focused on and compared the specific interaction of these two dyads. This study will investigate and describe specifics of the interaction between the dyads parent – terminally ill child vs. child – terminally ill parent using a mixed-methods framework. Interaction among terminally ill adult children and their parents and terminally ill parents and their children will be explored via in-depth face-to-face interviews and self-report questionnaires. This will result in an overview of the similarities and differences in specifics of the interaction between both groups. Recommendations for psychosocial support needs of both groups will be given. The main research question is: What are the specifics of the interaction between a) adult children suffering from a life-threatening disease at their end of life and their parents and differences in comparison to the specifics of the interaction of b) terminally ill parents and their children? The primary goal is to describe specifics of the interaction between dyads of both study groups in order to gain insights into similarities and differences between both groups. The main expected results are i) a description of specifics of the interaction between dyads of both study groups, ii) the development of hypotheses and a theoretical framework on the specifics, similarities, and differences for both groups, and iii) clinical conclusions on specific psychosocial care and support needs of both groups. References: 1. Kehl KA, Kirchhoff KT, Kramer BJ, Hovland-Scafe C 2009. Challenges Facing Families at the End of Life in Three Settings. J Soc Work End Life Palliat Care 5(3 & AMP):144-168. 2. Andershed B 2005. Relatives in end-of-life care – part 1: a systematic review of the literature of the five last years, January 1999-February 2004. J Clin Nurs 15(9):1158-1169. 3. Oechsle K, Goerth K, Bokemeyer C, Mehnert A 2013. Anxiety and depression in caregivers of terminally ill cancer patients: impact on their perspective of the patients' symptom burden. J Palliat Med 16(9):1095-1101. 4. Oechsle K, Goerth K, Bokemeyer C, Mehnert A 2013. Symptom burden in palliative care patients: perspectives of patients, their family caregivers, and their attending physicians. Support Care Cancer 21(7):1955-1962.