title: Exploring the concept of need in people with very severe chronic obstructive pulmonary disease: a qualitative study.
abstract: BACKGROUND
  Despite apparent unmet needs, people with chronic obstructive pulmonary disease (COPD) rarely ask for help. We explored the concept of need from the perspective of patients, their family carers and professionals.
  
  
  METHODS
  We recruited inpatients at two National Health Service (NHS) Lothian hospitals to a structured, holistic review of care needs delivered at home by a respiratory nurse 4 weeks postdischarge. Using semistructured interviews and group discussions, review notes and field-notes we explored the views of patients, carers and professionals on perceptions of need and the actions requested. Data were analysed thematically using Bradshaw's classification of need.
  
  
  RESULTS
  14 patients, 3 carers, 28 professionals provided 36 interviews and 2 discussion groups. Few needs were identified by our intervention and few actions planned. Professionals identified 'normative' needs some of which had been addressed during routine discharge planning. Other needs (physical/psychological limitations, social/financial concerns, existential issues) were 'felt' by patients and carers but articulated in response to the researcher's questions rather than actively 'expressed'. Patients often did not wish any action to address the problems, preferring care from family members rather than formal agencies. Many spoke of the over-arching importance of retaining a sense of independence and autonomy, considering themselves as ageing rather than ill.
  
  
  CONCLUSIONS
  In contrast to professionally-defined 'normative' needs, patients rarely perceived themselves as needy, accepting their 'felt' needs as the result of a disability to which they had now adapted. Sensitive approaches that foster independence may enable patients to 'express' needs that are amenable to help without disturbing the adaptive equilibrium they have achieved.
  
  
  BACKGROUND
  NCT01650480.
authors: Primary Palliative Care Research Group, Usher Institute of Medical Informatics and Population Health Sciences, University of Edinburgh, Edinburgh, UK.
authors: Marilyn
authors: M
authors: Kendall
authors: Allergy and Respiratory Research Group, Usher Institute of Medical Informatics and Population Health Sciences, University of Edinburgh. Edinburgh, UK.
authors: Susan
authors: S
authors: Buckingham
authors: Centre for Inflammation Research, Queen's Medical Research Institute, The University of Edinburgh, Edinburgh, UK.
authors: Susie
authors: S
authors: Ferguson
authors: Primary Palliative Care Research Group, Usher Institute of Medical Informatics and Population Health Sciences, University of Edinburgh, Edinburgh, UK.
authors: William
authors: W
authors: MacNee
authors: Allergy and Respiratory Research Group, Usher Institute of Medical Informatics and Population Health Sciences, University of Edinburgh. Edinburgh, UK.
authors: Aziz
authors: A
authors: Sheikh
authors: Department of Primary Care and Public Health Sciences, Division of Health and Social Care Research, King's College, London, UK.
authors: Patrick
authors: P
authors: White
authors: Wellcome Trust Clinical Research Facility, The University of Edinburgh, Edinburgh, UK.
authors: Allison
authors: A
authors: Worth
authors: Primary Palliative Care Research Group, Usher Institute of Medical Informatics and Population Health Sciences, University of Edinburgh, Edinburgh, UK.
authors: Kirsty
authors: K
authors: Boyd
authors: Primary Palliative Care Research Group, Usher Institute of Medical Informatics and Population Health Sciences, University of Edinburgh, Edinburgh, UK.
authors: Scott A
authors: SA
authors: Murray
authors: Allergy and Respiratory Research Group, Usher Institute of Medical Informatics and Population Health Sciences, University of Edinburgh. Edinburgh, UK.
authors: Hilary
authors: H
authors: Pinnock
mesh_terms: D000368:Aged; D017028:Caregivers / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D006282:Health Personnel / Q000523:psychology*; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D029424:Pulmonary Disease, Chronic Obstructive / Q000523:psychology*; D036301:Qualitative Research; D012606:Scotland
keywords: Chronic conditions; Chronic obstructive pulmonary disease; Respiratory conditions; Service evaluation; Supportive care