To Örebro University

Background: Pulmonary rehabilitation increases functional capacity and quality of life and decrease exacerbations in patients with chronic obstructive pulmonary disease (COPD), but there is little knowledge of how it influences their next of kin.

Aims: To describe the experience of a multidisciplinary programme of pulmonary rehabilitation in primary health care from the perspective of the next of kin.

Methods: A descriptive qualitative study was undertaken as part of a longitudinal study comprising a multidisciplinary programme for patients with COPD where the next of kin were invited to one session. Semi-structured interviews were conducted with 20 next of kin and analysed by qualitative content analysis.

Results: One main theme emerged — Life still remains overshadowed by illness. There were three sub-themes: a sense of deepened understanding; a sense of personal vulerability; and a sense of relief of burden.

Conclusions: The next of kin's life was still overshadowed by illness, despite the multidisciplinary programme. Although experiencing positive outcomes two years after the programme, the next of kin expressed a need for more support. This study has shown that next of kin could benefit from their own participation and/or that of the patient in a multidisciplinary programme of pulmonary rehabilitation. We believe that next of kin should be offered primary health care support for the sake of their own health, but also in order to manage their informal caregiver role. The experiences described here could form a basis for further development of interventions for next of kin of patients with COPD.