Introduction/background Bronchiectasis is a chronic lung condition, causing breathlessness and chronic productive cough, with intermittent infective exacerbations. Patients often have recurrent hospital admissions, poorer quality of life, and significant fatigue. Treatment concordance can be problematic. There is little patient information currently available, yet information and education could support patients to self-manage, improve understanding and optimise engagement with treatment. Previous exploratory interviews with patients suggested that a lack of credible patient information was available and that having information could help patients learn to live with and manage their condition.
To further identify, explore and understand the information needs of patients with bronchiectasis and their carers.
To co-develop, with the user group, a novel patient information resource.
Methods In-depth interviews were conducted with 17 people who have bronchiectasis and 9 carers. Three focus group style workshops were subsequently held with 11 patients and 3 carers in total. All were recruited from respiratory clinics in the North of England. Interviews and workshops were audio-recorded and transcribed and thematic analysis was undertaken to identify common themes.
Results Ages ranged from 33 to 78 years, including both newly diagnosed and longstanding patients. The focus of the interviews was to identify, explore and understand information needs. A core mediating issue emerged, however: what it means to learn to live your life with bronchiectasis. Embedded in this journey are issues around developing support and coping mechanisms, how people learn to connect with information and how they start to take back control and develop new, active, partnerships with the medical team.
Using these qualitative data in the workshops, we co-developed a novel online and paper-based information resource for patients and their families. This resource is currently being piloted in a feasibility study comparing use of the resource to usual care.
Conclusions Understanding patient and carer experiences of living with bronchiectasis, the biographical disruption (s) that it imposes and the ways in which patients and carers connect with health information over time, has enhanced our understanding of their information needs and how these could be met. The outcomes of the feasibility study are expected in March 2016.
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