The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease: A qualitative study

Abstract

Background Chronic obstructive pulmonary disease (COPD) is an inflammatory and irreversible lung disease. For next of kin caregiver burden can be a consequence of the situation of being close to a person affected by a chronic disease and in need of help. When there is an imbalance between stressors and resources to cope with the situation, caregiver burden emerges. Knowledge is sparse about how the caregiver burden is experienced by the next of kin. Therefore, the aim of this study is to identify and describe the caregiver burden experienced by next of kin of persons with severe COPD. Method Qualitative interviews with 21 next of kin were conducted. Thematic analysis was used in accordance with the six steps of Braun and Clarke. Results The next of kin experience caregiver burden as 1) changed roles in daily life 2) putting life on hold 3) to stand aside. The next of kin are in need of support to manage daily life. Conclusions The caregiver burden affect the next of kin physically and emotionally. To prevent advance consequences, person-centered care can be used to support the next of kin in the situation.

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

“…They must put their own life on hold, and it is emotionally stressful to stand aside and observe the breathing problems as the disease and the symptoms worsen. 7 COPD affects both the persons with COPD and their next of kin and there is a changed life situation. 3 , 7 To manage this situation there is a need for comprehensibility, manageability, and meaningfulness of the situation, all of which are dependent on and affected by internal and external resources.…”

“… 7 COPD affects both the persons with COPD and their next of kin and there is a changed life situation. 3 , 7 To manage this situation there is a need for comprehensibility, manageability, and meaningfulness of the situation, all of which are dependent on and affected by internal and external resources. The perception of how understandable the situation is, gives a sense of coherence.…”

“…Such support contributes to making the situation understandable and manageable. 7 A way to develop this support and help the affected persons and their next of kin to manage their daily life and life situation is to plan for a person-centered supportive intervention. Before designing person-centered interventions there is a need for detailed knowledge and understanding about both the affected person's and their next of kins’ life situation both estimated and expressed in the person's own words.…”

Reflecting on the importance of theory-informed qualitative research in people with chronic respiratory disease and their carers

“…Additionally, it can be used alongside other methods to qualitatively explain what is going on; for example, understanding the causal mechanisms that may be 'in play' in a randomised controlled trial. 5 In their paper 'The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease: A Qualitative study', 6 the authors, Johansson et al, did not apply theory. Qualitative interviews were conducted with next of kin and narratives described the fluidity of caregiver roles whilst their own lives were put on hold.…”

“…In their paper ‘The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease: A Qualitative study’, 6 the authors, Johansson et al, did not apply theory. Qualitative interviews were conducted with next of kin and narratives described the fluidity of caregiver roles whilst their own lives were put on hold.…”