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20. Deutscher Kongress für Versorgungsforschung

Deutsches Netzwerk Versorgungsforschung e. V.

06. - 08.10.2021, digital

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Longitudinal qualitative research methodology to cover changes in family patterns over time – lessons learned from the Family-SCOUT project

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  • Lina Heier - UKB Universitätsklinikum Bonn, Forschungsstelle für Gesundheitskommunikation und Versorgungsforschung, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Bonn, Deutschland
  • Evamarie Brock-Midding - UKB Universitätsklinikum Bonn, Forschungsstelle für Gesundheitskommunikation und Versorgungsforschung, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Bonn, Deutschland
  • Daniel Blei - UKB Universitätsklinikum Bonn, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Centrum für Integrierte Onkologie Aachen Bonn Cologne Düsseldorf (CIO ABCD), Bonn, Deutschland
  • Rebecca Bremen - Uniklinik RWTH Aachen, Klinik für Hämatologie, Onkologie, Hämostaseologie und Stammzelltransplantation, Centrum für Integrierte Onkologie Aachen Bonn Cologne Düsseldorf (CIO ABCD), Aachen, Deutschland
  • Tim H. Brümmendorf - Uniklinik RWTH Aachen, Klinik für Hämatologie, Onkologie, Hämostaseologie und Stammzelltransplantation, Centrum für Integrierte Onkologie Aachen Bonn Cologne Düsseldorf (CIO ABCD), Aachen, Deutschland
  • Manuela Brüne - Heinrich-Heine-Universität Düsseldorf, Institut für Versorgungsforschung und Gesundheitsökonomie, Düsseldorf, Deutschland
  • Marc Dohmen - Uniklinik RWTH Aachen, Klinik für Hämatologie, Onkologie, Hämostaseologie und Stammzelltransplantation, Centrum für Integrierte Onkologie Aachen Bonn Cologne Düsseldorf (CIO ABCD), Aachen, Deutschland
  • Franziska Geiser - UKB Universitätsklinikum Bonn, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Centrum für Integrierte Onkologie Aachen Bonn Cologne Düsseldorf (CIO ABCD), Bonn, Deutschland
  • Burkhard Haastert - Heinrich-Heine-Universität Düsseldorf, Institut für Versorgungsforschung und Gesundheitsökonomie, Düsseldorf, Deutschland
  • Christian Heuser - UKB Universitätsklinikum Bonn, Forschungsstelle für Gesundheitskommunikation und Versorgungsforschung, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Bonn, Deutschland
  • Steffen Holsteg - Universitätsklinikum Düsseldorf, Klinisches Institut für Psychosomatische Medizin und Psychotherapie, Düsseldorf, Deutschland
  • Andrea Icks - Heinrich-Heine-Universität Düsseldorf, Institut für Versorgungsforschung und Gesundheitsökonomie, Düsseldorf, Deutschland
  • Andre Karger - Universitätsklinikum Düsseldorf, Klinisches Institut für Psychosomatische Medizin und Psychotherapie, Düsseldorf, Deutschland
  • Hannah Nakata - UKB Universitätsklinikum Bonn, Forschungsstelle für Gesundheitskommunikation und Versorgungsforschung, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Bonn, Deutschland
  • Jens Panse - Uniklinik RWTH Aachen, Klinik für Hämatologie, Onkologie, Hämostaseologie und Stammzelltransplantation, Centrum für Integrierte Onkologie Aachen Bonn Cologne Düsseldorf (CIO ABCD), Aachen, Deutschland
  • Andrea Petermann-Meyer - Uniklinik RWTH Aachen, Klinik für Hämatologie, Onkologie, Hämostaseologie und Stammzelltransplantation, Centrum für Integrierte Onkologie Aachen Bonn Cologne Düsseldorf (CIO ABCD), Aachen, Deutschland
  • Till-Philip Rottmann - UKB Universitätsklinikum Bonn, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Centrum für Integrierte Onkologie Aachen Bonn Cologne Düsseldorf (CIO ABCD), Bonn, Deutschland
  • Kristina Sättler - Universitätsklinikum Düsseldorf, Klinisches Institut für Psychosomatische Medizin und Psychotherapie, Düsseldorf, Deutschland
  • Anja Viehmann - Heinrich-Heine-Universität Düsseldorf, Institut für Versorgungsforschung und Gesundheitsökonomie, Düsseldorf, Deutschland
  • Nicole Ernstmann - UKB Universitätsklinikum Bonn, Forschungsstelle für Gesundheitskommunikation und Versorgungsforschung, Klinik und Poliklinik für Psychosomatische Medizin und Psychotherapie, Bonn, Deutschland

20. Deutscher Kongress für Versorgungsforschung (DKVF). sine loco [digital], 06.-08.10.2021. Düsseldorf: German Medical Science GMS Publishing House; 2021. Doc21dkvf282

doi: 10.3205/21dkvf282, urn:nbn:de:0183-21dkvf2821

Published: September 27, 2021

© 2021 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/Research question/Problem: Families with minor children affected by parental cancer are at risk for increased psychological impairment like dysfunctionality in the family and the psychological burden on the parents, development of psychological symptoms of parents and their children.

In health services research, there is a gap of an in-depth understanding of changes in patterns of families with parental cancer over time. This problem was addressed within the Family-SCOUT project, which is funded by the innovations fund of the Federal Joint Committee in Germany. The aim of the project is 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.

Solutions and suggestions: One way to get an understanding of changes in family patterns regarding burdens, resources, communication can be the use of longitudinal qualitative research (LQR) methodology. This research tries to answer questions about lived experience over time and seemed suitable to gain an in-depth understanding of experiences and changes in families affected by parenteral cancer.

Healthy parents from two study arms were interviewed as surrogates for their families. A total of 32 healthy parents were interviewed once and 18 of them were interviewed for a second time about their daily life, burdens as well as resources and communication patterns. The same semi-structured guideline was used in both interviews and asked specifically about changes in the second interview. There was at least six to nine months between the two interviews, the first interview was face to face, the second interview was conducted by phone due to covid-19 pandemic. Each interview was audio-recorded, transcribed, and coded using qualitative content analysis to contrast two study arms in terms of patterns in burdens, resources, and communication.

Conclusion/Discussion/Lessons learned: The LQR method allowed to achieve a better understanding of changes in families with minor children affected by parental cancer and their experienced burdens, resources and communication.

During data process, several lessons were learned. The LQR method has opened up the possibility of building a relationship between researcher and healthy parent, give them the opportunity to share thoughts and feelings about their family and changes, which were not covered with one single interview.

The time aspect on the other hand was also challenging, due to the circumstances of cancer treatment and adverse events, it was not possible to interview each family after the exact same point of time. Furthermore, the research focus and topic guide evolves over time. Even though the same semi-structured guideline was used, the focus of the second interview particularly changed and draw the attention on new and unexpected subjects which were not mentioned in the first interview. This can lead to challenges in qualitative data analysis, which are currently solved with recoding by different researchers to allow alternative perspectives.