The SHIELD Study
Research type
Research Study
Full title
Securing best health outcomes for people living with HIV through optimal engagement with care: Learning from Disruptive change (the SHIELD Study)
IRAS ID
308861
Contact name
Rageshri Dhairyawan
Contact email
Sponsor organisation
Joint Research Management Office, Barts Health NHS Trust
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
Summary of Research
People living with HIV (PLH) can have a normal life expectancy and will not pass on the virus to others if they take treatment every day. However, there is still no cure for HIV and to stay well, they must take treatment and regularly attend clinic for the whole of their lives. This can be difficult for some individuals and is a major challenge to ending the HIV epidemic. In 2018, 2000 PLH in the UK were not attending clinic and a further 8100 were not on effective treatment, representing approximately 10% of PLH in the UK. Disengagement from care is an important, cause of HIV-related death and disability that may be preventable if better understood.Unexpectedly, with the arrival of COVID-19, Barts Health and other HIV clinics across London observed that PLH who had disengaged from care were contacting them spontaneously to restart treatment. This startlingly positive and important finding will be investigated within this proposal.
We propose a study across London to explore factors that influence disengagement and re-engagement from the viewpoint of service users and service providers. We will evaluate our pre-existing policies and specialised services for these service users. We will explore the disruptive change of COVID-19 from the first 6 months and the subsequent 24 months of the pandemic in London HIV clinics. Then, using a questionnaire and interviews we will explore the factors associated with re-engagement and disengagement from HIV care. In particular, we will look at how these factors may overlap in ways that will allow a better understanding of the lived experiences of PLH. We will learn from COVID-19 and develop recommendations for HIV services on how to better support people living with HIV to stay in care and take treatment. These recommendations may be useful for services with other long-term conditions.
Summary of Results
Objectives SHIELD is a London-based study looking at how people engaged with HIV clinical care during and after the COVID-19 pandemic. The study objectives are 1) to describe the characteristics of service-users who either re-engaged or dis-engaged with HIV care during the pandemic; 2) to review clinical outcomes and engagement in care at 24 months follow up; 3) to explore the views of clinic staff involved in supporting people to remain in care; and 4) to understand the perspectives of service-users (patients) on engaging in care.Methods
The study was co-designed and implemented with researchers with HIV lived experience and in consultation with the SHARE Collaborative Community Advisory Board. Using an exploratory mixed methods approach, we had three workstreams.Workstream 1 (Objectives 1 & 2): We identified service-users 18 years at 8 HIV services in London who re-engaged (1/3/20 – 31/8/20) or dis-engaged from clinical care (no contact with service 1/3/20 – 28/2/21). This was done by reviewing past clinical records. We looked at their demographics and clinical data. For people who re-engaged, follow-up data were collected at 24 months and in those who dis-engaged, at a single timepoint (1/3/23).
Workstream 2 (Objective 3): We interviewed clinic staff at 11 HIV services in London for their views on existing clinic policies to support engagement in HIV clinical care; what changed during COVID-19; and their views on dis-engagement and how it could be addressed. We analysed the data thematically.
Workstream 3 (Objective 4): We interviewed the people identified in Workstream 1 who either re-engaged or dis-engaged with care during the COVID-19 pandemic. People were recruited from four London HIV clinics and given a voucher for their time. Interviews were carried out by peer co-researchers and analysed thematically drawing from the lived experiences of researchers and further refined in a workshop with London clinic-based HIV peer mentors.
Results
Workstream 1.
122 people dis-engaged and 89 re-engaged. In those who re-engaged, at 24-month follow-up,71.3% were on HIV medication, 63.6% had an undetectable viral load and 67.9% had a future clinician appointment booked. For people that dis-engaged, by 1/3/23, 21% were on HIV medication and 27% had a future appointment booked.Workstream 2.
A total of 11 clinic staff from 11 London HIV clinics took part in interviews: 6 doctors, 2 specialist nurses, 2 health advisors and 1 clinic manager. Participants discussed interactions at person, service and system levels they regarded as protective or harmful to engagement. Person-level: participants described how social and economic factors, treatment fatigue, competing priorities, stigma and shame, low self-esteem and past trauma negatively affect engagement.
Service-level: protective values included accessibility, flexibility, non-judgemental and personalised approaches, all considered central to building trust and long-lasting patient-centred relationships; processes to identify struggling patients; providing mental health, peer and non-clinical support services.
System-level: participants described harms related to the under-prioritisation of engagement and heightened focus on testing, precarious funding for support services, and a lack of reliable data systems and data sharing across clinics.Workstream 3.
Fourteen service-users from 4 clinic underwent interviews. Twelve participants had re-engaged with care and 2 had disengaged. They included ciswomen (9) and cismen (5); identifying as heterosexual (8), gay and bisexual men who have sex with men (4) and bisexual women (2); age range 30-60 years; self-identifying ethnicity as Black African (6), Black Caribbean (5), White UK (2), Black British (1).We found seven themes:
1) finding out about HIV diagnosis and joining the clinic;
2) the ups and downs of taking antiretroviral therapy;
3) stigma affecting experience of attendance;
4) understanding the role of services on attendance patterns;
5) mental health, attendance and engagement (and judging whether to attend depending on how one feels);
6) social and economic precarity impacting engagement;
7) finding out about HIV diagnosis and joining the clinic.Participants described structural and personal vulnerabilities in their lives that made it difficult to always to engage with clinical care, and the COVID-19 pandemic added to this, for some creating an extra layer of vulnerability which pushed them out of care. Other participants who had clinical teams who anticipated the likely impact of the pandemic and proactively reached out to them, were able to engage with care.
Conclusions
We found that COVID-19 exposed existing vulnerabilities deterring access to HIV clinical care, as well as being itself an additional factor. For some people, the pandemic provided an opportunity to re-engage.We make several recommendations. Continuity of care, a welcoming clinical environment, proactive, timely and consistent communication from clinic staff is key, including texts and ‘check in’ calls. Clinic mobile phones, home delivery, flexible hours and a choice of remote or in person appointment should be offered where feasible. Staff should be non-judgmental, respectful, take their time with patients who require it and offer positive reinforcement as motivation. Clinics should be able to provide access to advice about housing, finances, substance misuse, mental health support, peer support (one to one and in groups). Engagement in care is often cyclical and so non-retention should be anticipated and planned for by service-providers. Service-providers should also ask about ART tolerability and be open to switching where possible. Commissioners must prioritise retaining people in HIV care financially and in policy.
REC name
London - Chelsea Research Ethics Committee
REC reference
22/LO/0486
Date of REC Opinion
27 Jul 2022
REC opinion
Further Information Favourable Opinion