Patients with severe chronic breathlessness associated with their COPD experience “good days” and “bad days” – but so do their carers.
A qualitative study from South Australia, comprising separate, semi-structured interviews with nine patients and their carers, found a largely shared experience.
Within themes such as a shrinking world, mutual adaptation and co-management, the responses highlighted the significant impact of breathlessness beyond just the patient.
The interviews revealed the carer’s life becomes almost as restricted as the patient’s as they spent more time together but were limited in what they could do physically and socially.
“In some circumstances, carers learned how to slow down to meet the patient level of function,” the study team including senior investigator Professor David Currow said.
Both patients and carers described the “good days” and “bad days” – which were sometimes linked to triggers such as temperature or humidity but were more often unpredictable.
“These findings highlight the natural history of chronic breathlessness, and the need to develop specific interventions that can target daily fluctuations in breathlessness,” the study team said.
They also found carers may be more distressed and have more trouble coping emotionally than the patients.