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. 2024 Jun;20(2):296-308.
doi: 10.1177/17423953231175971. Epub 2023 May 16.

Chronic obstructive pulmonary diseasés impact on the affected person and next of kin: A mixed methods study

Helena Johansson  1   2 , Katarina Berg  2 , Lise-Lotte Jonasson  3 , Carina Berterö  2
Affiliations

Chronic obstructive pulmonary diseasés impact on the affected person and next of kin: A mixed methods study

Helena Johansson et al. Chronic Illn. 2024 Jun.

Abstract

Objectives: Severe chronic obstructive pulmonary disease affects and changes the lives of both affected persons and next of kin. There is a need for support and a sense of coherence to manage the life situation and minimize the symptom and caregiver burden. The aim of this study was to diverge or converge views of symptom burden, caregiver burden, the need for support, and sense of coherence in persons with chronic obstructive pulmonary disease and their next of kin to gain a deeper and broader knowledge and understanding.

Methods: A mixed methods study with data from interviews and four validated questionnaires from persons affected by chronic obstructive pulmonary disease in GOLD stages III and IV and their next of kin.

Results: Questionnaires from 112 persons affected by chronic obstructive pulmonary disease, and 71 next of kin, together with 25 and 21 interviews, show that; there is a difference between estimated symptoms and caregiver burden and experiences expressed in their own words. There is also a defect regarding meaningfulness, comprehensibility, and manageability affecting daily life. Symptoms and caregiver burden, together with the sense of coherence, strengthen the need for support.

Discussion: The complexity of the life situation leads to a need for supportive interventions to strengthen internal and external resources.

Keywords: caregiver burden; chronic obstructive pulmonary disease; sense of coherence; support; symptom burden.

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Conflict of interest statement

Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Flowchart showing the inclusion and participation of affected persons with chronic obstructive pulmonary disease (COPD) and their next of kin.
Figure 2.
Figure 2.
The mixed methods analysis process.
Figure 3.
Figure 3.
The symptom burden was estimated with Received Memorial Symptom Assessments Scale (RMSAS).
See this image and copyright information in PMC

References

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