Ressourcen und Grenzen Angehöriger von Menschen mit fortgeschrittener COPD besser verstehen: eine qualitative Studie

Better understanding the resources and limitations of relatives of people with advanced COPD: a qualitative study

by Amos Titus Vogel
Doctoral thesis
Date of Examination:2024-11-14
Date of issue:2024-11-05
Advisor:Prof. Dr. Friedemann Nauck
Referee:Prof. Dr. Friedemann Nauck
Referee:Prof. Dr. Alfred Simon
Persistent Address: http://dx.doi.org/10.53846/goediss-10834

 

 

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Abstract

English

Research question: COPD is a chronic disease that is very stressful both mentally and physically in its advanced stages and is now the third most common cause of death worldwide. People with COPD are reluctant to seek professional support, with their relatives often taking on the role of carer. In this regard, this qualitative study investigated what it means for relatives to accompany a person with advanced COPD and what burdens and needs result for the relatives. Design and method: The data collection took the form of focussed interviews with accompanying relatives (n = 12, age 48 - 79, 8w) of people with advanced COPD (stage III / IV according to GOLD). The interpretative analysis was carried out using the qualitative research method of grounded theory (Strauss 1998; Strauss and Corbin 1996). Results: The central phenomenon was that accompanying relatives experienced a permanent, high level of stress, which meant being confronted with a wide range of demands. Due to the unpredictable course of the illness, one particularly notable manifestation of the persistently high level of stress was severe psychological tension and was characterised by a constant fear of unforeseen events and powerless observation of physical and mental changes. Uncertainties about the need for support and the perceived complexity of organisational aspects of care resulted in challenging disease management, which was the cause of the permanent, high level of stress experienced by the relatives. It also became apparent that relatives felt obliged to provide care due to the extensive support needs of their loved one, as well as in the sense of socially anchored and relationship-immanent expectations, and saw no way out of their situation. They were constantly available, put their own needs aside and took responsibility for their loved one, resulting in a lack of clarity about roles and tasks. Switching between the roles of distanced expert and empathetic relative was an additional burden. By adapting to the restrictions caused by the disease, COPD ultimately became a shared handicap. Anger, conflicts, the reduction of social contacts and the impairment of their own health were possible consequences. Conclusion: Family members accompanying people with advanced COPD are exposed to high physical and psychological stress. The healthcare system has not yet systematically provided the intensified relief required in this regard. As important gatekeepers, GPs could act as continuous contacts for relatives and offer concrete, close-knit support and, if necessary, establish contact with palliative care providers, nursing services and other healthcare providers.
Keywords: COPD