Understanding and improving healthcare experiences of people with HIV
Research type
Research Study
Full title
Understanding and improving the healthcare service experiences of people living with HIV.
IRAS ID
146436
Contact name
Eileen Nixon
Contact email
Sponsor organisation
Brighton and Sussex University Hospitals NHS Trust
Research summary
The aim of this study is to explore the healthcare experiences of HIV positive patients who have additional illnesses, and to utilise the experiences of patients and healthcare workers to co-design a new approach to HIV healthcare.
This study will use Experience Based Co-Design (EBCD) methodology. Phase 1 will gather experiences of care using non-participant observations, patient diaries and discovery interviews. Non-participant observations of clinical areas and consultations with HIV positive patients will be conducted within HIV services, other secondary care settings and general practice. Patients will be asked to keep written diaries to record their experiences of healthcare across different service areas. Patients attending the Lawson Unit, Brighton will participate in a filmed narrative-based unstructured interview exploring their experiences of care. Healthcare workers will be recruited from HIV and non-HIV services and interviewed about their experience of providing care to HIV positive patients. Data (field notes, diaries and verbatim interview transcripts) will be subjected to thematic analysis to identify positive and negative emotional responses (known as ‘touchpoints’) during the patient pathway.
In Phase 2 (data validation) consent will be sought from individual patients to use footage from their filmed interview in a composite DVD. An edited 35-minute film will be produced and shown to patients and staff in separate feedback events, to identify and prioritise key areas for service improvement. In Phase 3 (co-design), patients and staff will be invited to take part in a joint stakeholder event to discuss their responses to the film and work together in mixed groups to identify shared priorities for service improvement.
The findings will 1) identify aspects of care that require improvement, 2) establish the acceptability of the EBCD methodology for informing the development of HIV services 3) inform the content of a future National Institute for Health Research (NIHR) Programme Grant application.
REC name
London - Queen Square Research Ethics Committee
REC reference
14/LO/1479
Date of REC Opinion
4 Sep 2014
REC opinion
Favourable Opinion