Day-to-day living with severe chronic obstructive pulmonary disease: Towards a family-based approach to the illness impacts

Abstract

Objective: This study explores the perspectives of both patients and family members regarding the impact of chronic obstructive pulmonary disease (COPD) in their family life.

Design: An exploratory qualitative study was conducted with patients and their family members in the chronic phase of COPD. Individual interviews were performed to explore participants’ perspectives and submitted to thematic analysis.

Results: Six major themes emerged from patients’ perspective: (1) impact of COPD symptoms on personal and family daily life; (2) (over)protective family support; (3) difficulties in couple communication; (4) sense of identity loss; (5) fear of COPD progression; and (6) coping resources. Five main themes emerged from the family members’ perspective: (1) restrictions in family’s social life; (2) emotional distress related to COPD exacerbations; (3) tension in couple relationship; (4) financial strain of COPD; and (5) coping resources.

Conclusions: The overall findings illustrate the complex interaction between the experience of living with COPD and communication patterns, emotional states, social support and social roles within the family. The results highlight the need to develop family-based interventions to facilitate a functional adjustment to COPD. However, these interventions in COPD remain undeveloped and empirical evidence is needed.

Keywords:

• chronic obstructive pulmonary disease
• family
• impact
• family-systems illness model
• family-based interventions

Acknowledgements

The authors would like to acknowledge all institutions and families involved for their participation in this research. We are also very grateful to Álvaro Mendes for his contribution in the peer debriefing process.

Funding

This work was supported by Portuguese National Funds through FCT – Foundation for Science and Technology [grant number RIPD/CIF/109502/2009].