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HOW PREPARED ARE INFORMAL CARERS OF PATIENTS WITH ADVANCED COPD AND WHAT ARE THEIR SUPPORT NEEDS? BASELINE DATA FROM AN ONGOING LONGITUDINAL STUDY
  1. M Farquhar1,
  2. G Ewing1,
  3. C Moore1,
  4. AC Gardener1,
  5. H Holt Butcher1,
  6. P White2,
  7. G Grande3,
  8. on behalf of the Living with Breathlessness study team
  1. 1University of Cambridge, UK
  2. 2King's College London, UK
  3. 3University of Manchester, UK

    Abstract

    Introduction Advanced chronic obstructive pulmonary disease (COPD), a chronic progressive condition, can lead to high informal carer-burden. We lack good evidence on the needs of carers of patients with advanced non-malignant disease and how best to support them; particularly longitudinal evidence.

    Aim(s) and method(s) To describe preparedness to care and support needs of informal carers of patients with advanced COPD at baseline in an ongoing longitudinal study.

    Mixed method baseline interviews with a cohort of approximately 100 informal carers of patients recruited from a primary care population base (East of England). The cohort forms part of the Living with Breathlessness study: a mixed-method 18-month Longitudinal Interview Study (3-monthly semi-structured interviews; flexible methodology to capture changing patient function, need and service-access, and carer need and support). Quantitative carer measures include Preparedness for Caregiving Tool and Carers Support Needs Assessment Tool analysed using descriptive statistics. Purposively sampled qualitative data analysed using framework approach and multiple-perspective case study methodology.

    Results The results will describe the preparedness of informal carers to care for patients with advanced COPD and the relationship between preparedness and carer support needs.

    Conclusion(s) The Living with Breathlessness study aims to provide new evidence on the trajectories of health and social care needs and service access of patients with advanced COPD and their informal carers to inform a new framework for care and support in advanced non-malignant disease.

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