gms | German Medical Science

21. Deutscher Kongress für Versorgungsforschung

Deutsches Netzwerk Versorgungsforschung e. V.

05.10. - 07.10.2022, Potsdam

Article

Send article

Emotional burdens of families affected by parental cancer – results of the Family-SCOUT project

Meeting Abstract

Search Medline for

  • Lina Heier - Center for Health Communication and Health Services Research, Department of Psychosomatic Medicine and Psychotherapy, University Hospital Bonn, Deutschland; Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland
  • Johanna Weiß - Center for Health Communication and Health Services Research, Department of Psychosomatic Medicine and Psychotherapy, University Hospital Bonn, Deutschland; Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland
  • Evamarie Brock-Midding - Center for Health Communication and Health Services Research, Department of Psychosomatic Medicine and Psychotherapy, University Hospital Bonn, Deutschland; Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland
  • Rebecca Bremen - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Department of Hematology, Oncology, Hemostaseology and Stem Cell Transplantation, Faculty of Medicine, RWTH Aachen University, Aachen, Deutschland
  • Tim Henrik Brümmendorf - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Department of Hematology, Oncology, Hemostaseology and Stem Cell Transplantation, Faculty of Medicine, RWTH Aachen University, Aachen, Deutschland
  • Manuela Brüne - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Institute of Health Services Research and Health Economics, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Deutschland
  • Marc Dohmen - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Department of Hematology, Oncology, Hemostaseology and Stem Cell Transplantation, Faculty of Medicine, RWTH Aachen University, Aachen, Deutschland
  • Franziska Geiser - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Department of Psychosomatic Medicine and Psychotherapy, University Hospital Bonn, Center for Integrated Oncology Bonn (CIO), Bonn, Deutschland
  • Burkhard Haastert - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; mediStatistica, Wuppertal, Deutschland
  • Christian Heuser - Center for Health Communication and Health Services Research, Department of Psychosomatic Medicine and Psychotherapy, University Hospital Bonn, Deutschland; Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland
  • Steffen Holsteg - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Clinical Institute of Psychosomatic Medicine and Psychotherapy, Heinrich-Heine-University Düsseldorf, Düsseldorf, Deutschland
  • Andrea Icks - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Institute of Health Services Research and Health Economics, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Deutschland
  • André Karger - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Clinical Institute of Psychosomatic Medicine and Psychotherapy, Heinrich-Heine-University Düsseldorf, Düsseldorf, Deutschland
  • Hannah Nakata - Center for Health Communication and Health Services Research, Department of Psychosomatic Medicine and Psychotherapy, University Hospital Bonn, Deutschland; Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland
  • Jens Panse - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Department of Hematology, Oncology, Hemostaseology and Stem Cell Transplantation, Faculty of Medicine, RWTH Aachen University, Aachen, Deutschland
  • Andrea Petermann-Meyer - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Department of Hematology, Oncology, Hemostaseology and Stem Cell Transplantation, Faculty of Medicine, RWTH Aachen University, Aachen, Deutschland
  • Anja Viehmann - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Institute of Health Services Research and Health Economics, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Deutschland
  • Markus Vomhof - Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland; Institute of Health Services Research and Health Economics, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Deutschland
  • Nicole Ernstmann - Center for Health Communication and Health Services Research, Department of Psychosomatic Medicine and Psychotherapy, University Hospital Bonn, Deutschland; Center for Integrated Oncology Aachen, Bonn, Cologne and Düsseldorf (CIO ABCD), Deutschland

21. Deutscher Kongress für Versorgungsforschung (DKVF). Potsdam, 05.-07.10.2022. Düsseldorf: German Medical Science GMS Publishing House; 2022. Doc22dkvf461

doi: 10.3205/22dkvf461, urn:nbn:de:0183-22dkvf4610

Published: September 30, 2022

© 2022 Heier et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 License. See license information at http://creativecommons.org/licenses/by/4.0/.

Outline

Text

Background and status of (inter)national research: Young families with minor children affected by parental cancer are at risk for increased psychological impairment like dysfunctionality in the family or psychological burden on the parents and children. There is still a gap in research regarding knowlegde about the everyday burdens of the families as a system.

Research question and objective: Which emotional burdens do families with minor children affected by parental cancer experience in everyday life?

Method or hypothesis: The study was part of the Familiy Scout project aiming to implement and evaluate a complex psychosocial intervention for these families by providing advice and care on an emotional, psycho-social and communicative level during and after the cancer experience. Semi-structured interviews were conducted with the healthy parent as a surrogate for the families about everyday burdens, resources, and communication patterns. All interviews were audio recorded, transcribed and analyzed using thematic analysis, specifically the technique of template analysis, which follows a structured process of analysis, but has a qualitative analytical flexibility to pick up the data and specifics of a study.

Results: A total of 16 healthy parents (eight women and eight men) in the control group were interviewed as a surrogate for their family. 11 interview partners were interviewed a second time after six to nine months, resulting in 27 interview transcripts being analyzed. With the help of the thematic analysis, nine themes could be generated, which reveal focal points in the emotional burdens of the families. These include finiteness of the disease, burdens in the partnership, grief, excessive demands, loneliness, effects of emotional burden on health, emotional burden from the service provider, emotional burden caused by the social environment and failure to address emotional distress within the family.

Discussion: Results should be interpreted in the light of several limitations. Social desirability bias may have affected our results. The interviews are representing the perceptions of the healthy parent as a surrogate. Therefore, views and experiences of the parent affected by cancer or the children were not included.

Practical implications: Emotional burdens should be specifically addressed and openly communicated by healthcare professionals when accompanying and taking care of the families.

Appeal for practice (science and/or care) in one sentence: A cancer diagnosis affects the whole family, further family-centered health services research is urgently needed to develop and evaluate psychosocial care concepts for all those affected.

Funding: Innovationsfonds/Versorgungsforschung

Outline

References

1.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.
2.
King N. Using templates in the qualitative analysis of text. In: Cassell G, Symon G, editors. Essential guide to qualitative methods in organisational research. London: Sage; 2004. p. 256-70.