D Cawley1, J Billings2, D Oliver3, M Kendall4, H Pinnock5. 1. Centre for Professional Practice, University of Kent, Chatham Maritime, Kent, UK. 2. Reader in Applied Health Research, Centre for Health Services Studies, University of Kent, Canterbury, Kent, UK. 3. Honorary Reader / Consultant in Palliative Medicine, Centre for Professional Practice, University of Kent, Chatham Maritime, Kent, UK. 4. Senior research Fellow, Primary Palliative Care Research Group, Centre for Population Health Studies, The University of Edinburgh, Edinburgh, Scotland, UK. 5. Reader, Allergy and Respiratory Research Group, Centre for Population Health Studies, The University of Edinburgh, Chatham Maritime, Kent, UK.
Abstract
OBJECTIVES: This study explores the narrative accounts of chronic obstructive pulmonary disease (COPD) to identify events that potentially could act as triggers for provision of supportive and palliative care. Trigger events must have meaning for the patient/carer, be visible to professionals, and have value in provoking useful actions. METHODS: A purposive sample of people with severe COPD, and their informal and professional carers, was recruited from primary/secondary care in Scotland. Indepth participant-led interviews allowed people to tell their illness story. Events occurring throughout the individual's account of the COPD journey were identified, and analysed thematically with regard to the meaning, visibility and use as potential triggers. RESULTS: Events identified from 92 transcripts (21 patients, 13 family carers, 18 professionals) punctuated the disease trajectory and crossed multiprofessional boundaries of care. These reflected advancing disease (increasing carer burden, becoming housebound, appointment frequency, increasing burden of disease, shifting priorities of care) or were an intervention addressing the consequences of advancing disease (requesting disabled parking, home adaptations, hospital admissions). Despite being meaningful in terms of increasing disability, many were invisible to professionals. Others were isolated events symptomatic of wider, ongoing disability which could potentially have use as triggers. CONCLUSIONS: Meaningful events can be identified within the story of COPD which reflect wider needs, are clearly visible to alert professionals, and be of use in terms of potentially guiding supportive interventions. To achieve this level of usefulness, services will need to promote health and social care integration with clear processes to facilitate holistic assessment when a trigger is detected. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
OBJECTIVES: This study explores the narrative accounts of chronic obstructive pulmonary disease (COPD) to identify events that potentially could act as triggers for provision of supportive and palliative care. Trigger events must have meaning for the patient/carer, be visible to professionals, and have value in provoking useful actions. METHODS: A purposive sample of people with severe COPD, and their informal and professional carers, was recruited from primary/secondary care in Scotland. Indepth participant-led interviews allowed people to tell their illness story. Events occurring throughout the individual's account of the COPD journey were identified, and analysed thematically with regard to the meaning, visibility and use as potential triggers. RESULTS: Events identified from 92 transcripts (21 patients, 13 family carers, 18 professionals) punctuated the disease trajectory and crossed multiprofessional boundaries of care. These reflected advancing disease (increasing carer burden, becoming housebound, appointment frequency, increasing burden of disease, shifting priorities of care) or were an intervention addressing the consequences of advancing disease (requesting disabled parking, home adaptations, hospital admissions). Despite being meaningful in terms of increasing disability, many were invisible to professionals. Others were isolated events symptomatic of wider, ongoing disability which could potentially have use as triggers. CONCLUSIONS: Meaningful events can be identified within the story of COPD which reflect wider needs, are clearly visible to alert professionals, and be of use in terms of potentially guiding supportive interventions. To achieve this level of usefulness, services will need to promote health and social care integration with clear processes to facilitate holistic assessment when a trigger is detected. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Entities:
Keywords:
Chronic Obstructive Pulmonary Disease; Hospice Care; Prognosis; Social Care; Supportive Care; Terminal Care
Authors: Clara J Schroedl; Susan E Yount; Eytan Szmuilowicz; Paul J Hutchison; Sharon R Rosenberg; Ravi Kalhan Journal: Ann Am Thorac Soc Date: 2014-11
Authors: Susan Buckingham; Marilyn Kendall; Susie Ferguson; William MacNee; Aziz Sheikh; Patrick White; Allison Worth; Kirsty Boyd; Scott A Murray; Hilary Pinnock Journal: NPJ Prim Care Respir Med Date: 2015-04-16 Impact factor: 2.871