Understanding the experience of patients with chronic obstructive pulmonary diseasewho access specialist palliative care in Salford

Abstract

The aim of this qualitative study was to gain an understanding of the experience ofpatients with chronic obstructive pulmonary disease (COPD) who access specialistpalliative care services in Salford. Patients who had been accessing any service forgreater than one month (if an outpatient) or one week (if an inpatient) were eligible forinclusion. Digitally recorded semi-structured interviews were carried out using a topicguide. After each interview, a reflective diary was completed. Recordings were thentranscribed verbatim, and analysed using Van Manen's approach to hermeneuticphenomenological interpretation. Data collection and interpretation was concurrent,with emerging themes used to guide future interviews.Results consisted of participants' experiences of living with COPD, together with theirexperiences of specialist palliative care. Findings relating to the experience of livingwith severe COPD echoed those described in previous literature, i.e. breathlessnessreducing exercise tolerance and producing physical restriction, thus impacting on thework, social and family lives of patients with COPD, as well as having a negative effecton their psychological wellbeing. A major difference, however, was an understandingamong these participants of their poor prognosis, contrary to the lack of awarenessdescribed in the literature. This could be a result of specialist palliative careintervention, however it is possible that those people with an appreciation of theirlimited prognosis are more likely to be offered (and accept) a specialist palliative carereferral.Benefits of specialist palliative care described by participants include reduced frequencyof hospital admission, improved physical symptoms, reduced social isolation and abroadened physical environment. The most marked improvements described were inthe area of psychological wellbeing (including increased confidence, increased selfworth,and decreased depression). Instrumental to these perceived benefits were factorssuch as the opportunity for patients to compare themselves to others in a similarsituation; a warm, friendly hospice environment; the listening skills of staff and the timeavailable for them to talk with patients; and a sense that specialist palliative staff go'above and beyond' the call of duty, prompting the patients to experience themselves as'people who matter'. Although the initial suggestion of specialist palliative care referralsometimes caused distress, prior perceived associations between palliative care anddeath changed following engagement with services, and fear of discharge became a newproblem.While there is much within existing specialist palliative care services that works wellfor people with COPD, our findings suggest that it may be desirable to adjust somefeatures of care, for example the discharge policy. Different patterns of serviceprovision should be considered, and models offering a greater emphasis on physicalconditioning may be beneficial. Work must be done to raise awareness of the true natureof hospices and specialist palliative care, as negative associations are likely to form abarrier to access, especially for those with non-malignant disease.

Date of Award	31 Dec 2011
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Ann-Louise Caress (Supervisor) & Peter Coventry (Supervisor)