As we came to appreciate the effect of the very long disease trajectory of COPD, we used subsequent interviews specifically to explore the patients’ “story” of their condition.Interviews were transcribed and managed with a qualitative data software programme (QSR NVivo version 7; QRS International, Doncaster, Australia).A clinical assessment by a respiratory nurse established eligibility, indicators of severity, and markers known to be associated with poor prognosis.7At each time point, patients nominated for interview an informal carer (for example, a family member, friend, or neighbour), if they had one, and a key health or social care professional whom they regarded as important to their care at that time, thereby creating “interview sets.” The person(s) nominated could differ at different time points.Our previous studies suggested a sample of 16-20 interview sets would be sufficient to reach data saturation.20Informed written consent was obtained from all patients at the beginning of the study and reviewed verbally before each interview.Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD.The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care.Interviews lasted between 40 and 150 minutes and were all audio recorded, with consent. Health and social care professionals were asked about their perception of the patients’ and informal carers’ needs, available services, and barriers to the provision of care.
The interviews with individual patients, informal carers, and professional carers were coded separately and then analysed: () as integrated “patient sets,” “informal carer sets,” and “professional carer sets.” Comparing and contrasting across and within these data sets highlighted emerging themes and, importantly, also divergence of perspectives.20All transcripts were coded by MK (assisted by the study administrator), using a thematic narrative approach,23 reflecting the research questions and themes raised by the participants.
By contrast, chaos narratives appear to be a disjointed series of events within which neither the narrator who is living within the story, nor the listener, can discern a clear purpose or direction.
In this narrative the patient uses the illness experience as an opportunity to embark on a personal quest; for example, to adjust to life with illness or to improve care and support for people with a particular condition.
Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together).
Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a “way of life” rather than an “illness.” Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition.