Title: A person-centred Needs Informed model of Care for people with HIV (NICHE), to improve wellbeing, mental health and reduce socio-economic disadvantages and stigma.
Funder: Department of Health and Social Care

Abstract: Aims: To improve mental and physical wellbeing in people living with HIV (PLWH), mitigating the effects of social and economic disadvantage and stigma, through developing and evaluating a needs-based model of care with a health coaching and social prescribing intervention. Background: HIV is now a treatable chronic condition with near-normal life expectancy, often requiring only annual specialist monitoring. However, a unique and interlinked set of adverse psychosocial factors including high levels of depression, stigma and socioeconomic disadvantage impact considerably on wellbeing and use of specialist services. A new model of care could better address these issues while being cost-saving or cost-neutral for the NHS. The NHS long term plan lays out a fundamental shift in how the health services works, with increased emphasis on personalised care to improve health and wellbeing, and reduce reliance on clinical services. However, evidence lags behind policy, with significant methodological shortcomings in existing studies, and no UK studies in PLWH, Research plan: This 5-year programme will be delivered through six work packages (WP): WP1 (Year 1-2) We will update a systematic review of psychosocial interventions in PLWH (Study 1.1). We will conduct a nationally representative survey of PLWH to measure psychosocial and health-related factors (mental and physical health and wellbeing; social support; socioeconomic situation; stigma; health service usage) and assess evidence for causal pathways to inform intervention development (Study 1.2). Using qualitative methods, we will explore unmet needs among PLWH and optimal delivery of the intervention. (Study 1.3). We will use a Discrete Choice Experiment (Study 1.4) to elicit preferences for intervention delivery. WP2 (Year 2). Using evidence from WP1 we will co-design, with PLWH and other stakeholders, an intervention based on two principal components of personalised care: health coaching and social prescribing. (Study 2.1). We will also undertake development work for WP3 (Study 2.2). WP3 (Year 2-4). A Randomised Controlled Trial (RCT) will assess whether the intervention designed in WP2 improves health and wellbeing (primary outcome: Positive Outcomes HIV tool) and depressive symptoms (key secondary outcome: PHQ-9), for PLWH with significant needs, identified by clinic-wide psychosocial assessment. A linked observational cohort will assess changes in health and wellbeing over time. (Study 3.1). In-depth process evaluation using quantitative and qualitative methodologies will explore operationalisation (Study 3.2) and experience of the intervention (Study 3.3). WP4 (Year 5) A cost-effectiveness analysis will assess value for money from NHS and other perspectives (Study 4.1) WP5 (Year 5) will appraise the potential to adapt the intervention to other secondary care populations. WP6:(Years 2-5) will undertake dissemination, translational and transferability work with commissioners to enable translation of findings into policy and practice. Impact: This programme aims to improve health and wellbeing for PLWH, reducing inequalities and use of NHS resources PPI: Community demand and discussions with PLWH have driven this proposal. We have strong PPI input including a co-applicant. Patients, public and community HIV groups will be involved in design, delivery and dissemination. Dissemination: Our multi-format dissemination strategy will enable translation of findings into practice.

Lay abstract: Aim: HIV is now a manageable condition. HIV-positive people on treatment can expect to live as long as people without HIV. However, for many people with HIV, poorer mental health, lack of support and experiences of stigma remain a real problem. We aim to see if there is a benefit to providing a more person-centred approach to care. This involves one-to-one sessions with a health and wellbeing coach in which a person can discuss their needs, be supported in making positive changes, and get any additional help they might need. Background: Although HIV can be well controlled by treatment and not itself cause problems, many HIV-positive people are affected by issues like depression, anxiety, stigma, or difficult financial or housing circumstances. Some may be affected by smoking or drug use. These factors can often cause more difficulties than HIV itself, in terms of a person s wellbeing, and their use of NHS services. HIV-positive people in the UK receive excellent care for their HIV in hospital outpatient clinics, but this type of specialist care does not necessarily help with these additional issues. The NHS plan over the next 10 years is to better support people to manage their own health and improve wellbeing. However, the evidence for this approach in people living with HIV is not clear. Our study will fill this gap. Design and Methods: We will talk in depth to HIV-positive people and clinic staff and use data from a national survey to better understand HIV-positive people s needs. Together with HIV-positive people we will develop an intervention that uses health coaching to improve mental health and wellbeing for people with HIV who need it. As well as one-to-one sessions with the individual, the health coach can connect the person to other sources of support if they would like this. This might include community groups, HIV support groups, online or other support and advice (known as social prescribing). We will measure if this approach works and is value for money using a clinical trial. Because these mental health and support issues are also very relevant to people with other long-term health conditions, we will assess if this approach can be adapted for other people receiving hospital care. PPI: We have a long standing, successful research relationship with the HIV community who encouraged us to do this research and have been fully involved in developing the research plan. Alex Sparrowhawk is the PPI member on the research team. Dissemination: Results will be presented using the study website, social media, community presentations, scientific conferences and journals, and through our partners including Terrence Higgins Trust. Our researchers have national policy roles in NHS England which will help get our findings into NHS practice.

Research activity codes: 5.6 PSYCHOLOGICAL AND BEHAVIOURAL;6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: INFECTION;MENTAL HEALTH