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Perspectives of Healthcare Professionals and people living with HIV in dialogue: on information sharing to improve communication at the consultation

Lookup NU author(s): Dr Caroline ClaisseORCiD, Professor Abi DurrantORCiD


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Introduction/objective(s): The main study objective was to bring into dialogue the perspectives of people with HIV who are recipients of routine clinical care in the UK, and Healthcare Professionals (HCPs), to establish consensus about how communication between HCPs delivering HIV care and their patients could be improved in the context of the consultation. Methods: During the COVID-19 pandemic, a Group Survey (GS) was conducted using the Delphi Technique to generate qualitative evidence about challenges related to tele- or online communications between patients and HCPs. The protocol was developed with HIV clinicians and experts in the lived experience of HIV, and conducted with a peer researcher. The GS was administrated by the REDCap secure web application and took place through three rounds, over 6 months, engaging 12 participants: 4 HIV HCPs (2 HIV Clinicians, 1 Clinical Psychologist, 1 Sexual Health Advisor) who work in the National Health Service (NHS), recruited through a professional network; and 8 people living with HIV (5 women and 3 men, aged 33-64), recruited through a national HIV advocates network. Responses from both parties were anonymously collated, thematically analysed, and shared back with participants in subsequent rounds to support consensus-building on matters of concern and thematic insights. Results: Both parties highlighted: the value of seeing the same HIV clinician over time and how this was not always possible; and communication challenges including mixed feelings towards using tele- and virtual modes. Participants felt that face-to-face consultations should always be available, particularly for clinically vulnerable patients. Participants offered suggestions for building trust remotely, highlighting listening and empathy as important practices. There was consensus on the value of patients sharing psychosocial information (i.e. mood, social histories) with HIV HCPs to support whole-person care; this gained significance during COVID-19 as people with HIV reported greater issues related to their wellbeing. Barriers to sharing psychosocial information were perceived by both parties, including embarrassment or fear of judgment, self-stigma and cultural differences; sharing was more difficult when mediated; participants made suggestions for designing person-centred questionnaires to improve the experience. People with HIV also reported Trust, Identity, Privacy and Security (TIPS) barriers to sharing personal information online or remotely plus concerns about maintaining confidentiality and privacy if information were accessed or shared with non-HIV staff, across departments and during multi-disciplinary team meetings. Discussion/conclusions/implications: UK models of care provision are rapidly changing and this may have a significant impact on the trusted sharing of information between HIV HCPs and their patients. Whilst the sharing of psychosocial information by patients is found valuable for patient-involved and whole-person care, more evidence is needed about how this information may be meaningfully captured, interpreted and processed by HCPs in ways that are trusted by patients who voice TIPS concerns and for whom the process of sharing can be burdensome. Whilst the NHS is moving towards integrated care and consideration of Patient Reported Outcome Measures (PROMs), there remain challenges for designing appropriate tools and communicative mechanisms for collecting and processing patient-generated data to contribute to routine HIV care management.

Publication metadata

Author(s): Claisse C, Durrant AC, Kasadha B

Publication type: Conference Proceedings (inc. Abstract)

Publication status: Published

Conference Name: The 15th AIDSImpact Conference 2023

Year of Conference: 2023

Acceptance date: 12/06/2023


Series Title: Power for action now