Background Chronic obstructive pulmonary disease (COPD) is a chronic progressive condition which, when advanced, can lead to high carer-burden. We lack good research evidence on the needs of informal carers of patients with advanced non-malignant disease and how best to support them; in particular the lack of longitudinal carer research has been noted.
Aims To describe the preparedness to care among informal carers of patients with advanced COPD and their support needs at the baseline of an ongoing longitudinal study.
Methods Mixed method baseline interviews with a cohort of approximately 100 informal carers of patients recruited from a primary care population base in the East of England. The cohort forms part of the Living with Breathlessness study and, as such, is being followed over time in a mixed-method 18-month Longitudinal Interview Study involving 3-monthly semi-structured interviews with flexible methodology to capture changing patient function 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 will be analysed using a framework approach and multiple-perspective case study methodology.
Results At the time of abstract submission baseline data collection is ongoing but due for completion by the end of October 2013. The results will describe the preparedness of informal carers to care and the relationship between preparedness and carer support needs when caring for patients with advanced COPD.
Conclusions 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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