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.

Intense feelings such as frustration and resentment and, for some, a feeling of being trapped in the carer’s role were also reported.

“Carers were not only involved in dealing with the physical burdens of breathlessness but they also felt responsible for bringing meaning and joy to patient’s lives.”

Both patients and carers felt emotionally challenged by episodes of acute breathlessness (e.g. COPD exacerbations), which were described as “a worry”, “scary” and “awful”.

“In general, the experience of breathlessness seems to be particularly distressing for carers, who are unable to disconnect from the carer’s role, live in a permanent state of hypervigilance and force themselves to keep calm in order not to disturb patients.”

“Thus, it is important to implement psychological interventions that target both the patient and the carer. Importantly, patients and carers have specific emotional vulnerabilities that may require specific, individual approaches.”

The study concluded with some recommendations for clinical practice:

• Functional losses due to breathlessness are devastating for patients and carers and should be proactively investigated in all stages of COPD.
• Understanding the natural history of COPD and its impact on daily fluctuations in chronic breathlessness may assist in tailoring future interventions for chronic breathlessness, especially self-management strategies involving patient and carer.
• Carers are severely affected by the experience of chronic breathlessness and their specific needs need to be assessed in clinical practice. From a service point of view, the carer is both a care recipient and a co-worker with health professionals.
• Both patient and carer are essential in the effective management of chronic breathlessness. Both need to be targeted (together and separately) to optimise clinical outcomes in breathlessness associated with COPD.