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Stigma-related emotions and their impact on self-management in people with COPD

Research project Chronic obstructive pulmonary disease, COPD, is a disease that is often stigmatized in society and is considered self-inflicted by smoking. Emotions of shame and guilt associated with the stigma may hinder people with COPD in their self-management, which can lead to poorer health. However, there is a lack of knowledge about the association between these emotions and self-management and how people with COPD handle shame and guilt.

The research project investigates how emotions of shame and guilt and self-management are connected in people with COPD. It also explores what drives these patients during behaviour change, and how they deal with shame and guilt and other obstacles. The results from the project are an important basis for developing interventions to reduce the effects of shame and guilt.

Head of project

Sara Lundell
Associate professor, other position

Project overview

Project period:

2021-01-01 2023-12-31

Participating departments and units at Umeå University

Department of Community Medicine and Rehabilitation, Department of Nursing, Department of Sociology

Research area


External funding

Forte, Riksförbundet HjärtLung

Project description

Self-management is important for improving the health and well-being of people with chronic obstructive pulmonary disease (COPD), as well as preventing hospitalizations and healthcare costs. Self-management is about an individual's strategies for dealing with symptoms and other consequences of an illness. Stigma-related emotions of shame and guilt have been identified in this patient group, which may hinder self-management. There is a lack of knowledge about the connection between shame and guilt and self-management in people with COPD and how they deal with these emotions in relation to their self-management.

The aim of the project

The research project aims to investigate how shame and guilt influence self-management in people with COPD and how they deal with these emotions during behaviour change. The project includes a questionnaire study and an interview study.

Questionnaire study

People with COPD in primary care and secondary care will answer questionnaires. The questionnaires deal with perceived shame and guilt, need for self-management support, demographics, disease information, COPD-specific knowledge and confidence in one's own ability. By analysing the answers from the questionnaires, the project can contribute with knowledge about the connection between shame and guilt in people with COPD with self-management or other background information. The questionnaire study also includes testing of how well two of the questionnaires can be used in the patient group.

Interview study

By conducting interviews with people with COPD, the project explores how they have experienced a behavioural change. Behaviour change is an important part of self-care. The interviews aim to explore the opportunities and obstacles that the participants experience have arisen during the behaviour change process and how they have dealt with them. Shame and guilt can be such an obstacle.

The significance of the project

The knowledge from the project is valuable in the development of interventions to reduce the impact of shame and guilt on self-management among people with COPD. The knowledge can also be valuable for other groups where stigma-related emotions can be obstacles to self-management.

External funding

Latest update: 2021-05-24