Effects of Covid19 on people living with HIV
Research type
Research Study
Full title
The effects of the Covid19 pandemic on the care and wellbeing of People Living with HIV
IRAS ID
312643
Contact name
Jeffrey Grierson
Contact email
Sponsor organisation
Anglia Ruskin University
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Research Summary - This is a pilot and feasibility study exploring the effects of the Covid19 pandemic on the wellbeing and care of people living with HIV in England. It will use an online questionnaire to explore a number of domains including; Demographics, Health, Treatment and Services, Social world, Home, Work and Money (see included print version of online survey).
Participants will be recruited from one HIV clinical site and from one patient support organisation.
All responses will be anonymised.
Lay Summary - This study was a pilot survey for a planned larger nationwide study. We recruited most people to complete our survey from a single clinic in a major city in England.
The recruitment period ran from July 23 – February 24. We were asking about experiences during the time of ‘lockdowns’ which occurred from March 2020 to Summer 2021. We asked about experiences during the pandemic and about HIV-related care during that time. We were also interested in the type of people who completed our survey, because this would help us refine how we invited people to take part in a larger survey.
Who responded to our survey?
We received 101 eligible responses to our survey. Most respondents were men (90%), and two thirds (66%) were white British or other white ethnicity. This means our sample was not representative of the entire UK population of people living with HIV. In the UK one third of people living with HIV are women and just over half (57%) are white. Our respondents were also slightly older than the total UK population living with HIV, with just over a quarter (27%) saying that they were over the age of 60.
In terms of their HIV care, 99% were looked after by a specialist HIV hospital clinic. Most lived within 60 minutes travel time of the clinic (67%) . The most common way of getting to the clinic was by underground tube train (25%). The next most common were train (22%), bus(16%) and private car (14%).
The length of time diagnosed with HIV ranged from 1 year to 40 years, with most (66%) having been diagnosed with HIV between 10 and 30 years ago. Almost everyone (98%) was on anti-retroviral therapy and most had an undetectable viral load (96%).
Experiences during the Covid Pandemic
Two-thirds (65%) of our respondents told us they had been infected with Covid – 19 which is a little less than the figure for the UK population as a whole (82%). One in twenty (5%) told us they were experiencing long Covid.
Three-quarters (74%) of our respondents told us that they attended a telephone appointment during the period of ‘lockdowns’ from March 2020 to summer 2021, one third (32%) had a face-to-face appointment, one third (30%) had attended for blood tests and four had attended a video appointment. Respondents could select more than one type of appointment.
Nearly 3 in 10 (29%) of people told us that they had missed at least one appointment during the Covid related lockdown period.
Just under four in ten (39%) told us the HIV-related care they had received during lockdown was worse.
Most people (68%) felt that their HIV-related health had not been affected by the changes during lockdown, but a quarter (24%) reported that it had made their HIV -health worse.
In terms of general health, half (54%) of respondents told us their general health was not affected by the pandemic but one third (37%) told us their general health had worsened. One in ten (9%) told us their general health had improved.
Just over half of respondents (58%) reported that their mental health worsened during the pandemic. A third (34%) reported that it was unchanged. A small number (7%) of people told us that their mental health had improved during lockdown.
Just over one in five (23%) of respondents told us they had suffered from depression since Match 2020, and a similar number (22%) told us they had suffered from anxiety. There was a lot of overlap between these two conditions.
About 4 in10 (43%) of our respondents reported that their financial situation had worsened during the pandemic. The same proportion reported it had not changed and a small number (14%) reported that it had improved.
We asked about difficulties accessing online information or services during the pandemic.
About one in ten (12%) reported difficulty with the cost of data and about one in six (18%) reported that they had trouble knowing how to use IT equipment.Factors associated with missing appointments.
We looked at what factors were associated with our respondents missing appointments because we felt this was important if a similar event happened again.
Women were more likely to miss appointments than men.
Those who had been diagnosed with depression were more likely to miss appointments but not those diagnosed with anxiety.
Those whose travel time was greater than one hour were also more likely to report having missed an appointment.
Factors associated with worsened HIV-related health during the pandemic.
Only missing an appointment was associated with worsened HIV-related health but it was not possible to tell which factor was cause and which was effect i.e. we could not tell if people missed appointments because they were unwell or became unwell because they missed appointments.Conclusions
We are pleased that most people did not report a worsening of HIV-related health during lockdown, but a significant minority (24%) did. If a future lockdown or similar circumstances were to occur in the future it will be important to pay attention to the mental health of people living with HIV. It will also be important to look further at why women missed appointments more often than men.
If more care is moved online, it will be important to address difficulties with using internet-based services and the cost of accessing the internet for some people living with HIV.Has the registry been updated to include summary results?: Yes
If yes - please enter the URL to summary results: https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fdoi.org%252F10.17605%252FOSF.IO%252FSZ3GW%2FNBTI%2FxjK3AQ%2FAQ%2F172216cc-52f1-4ed1-b2a8-65aea18aaf82%2F2%2Fpy24xLoxMT&data=05%7C02%7Cbrightonandsussex.rec%40hra.nhs.uk%7C3e4b069a6d9f410eab2d08dcb78e57e6%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638587069189169650%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=BI52YTTR%2Bt6ICoARTUIM38E8mMfZC1TM44vx26UgdgI%3D&reserved=0
If no – why not?:
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Pending
If yes, describe or provide URLs to disseminated materials:
If pending, date when dissemination is expected: 28/02/2025
If no, explain why you didn't follow it:
Have participants been informed of the results of the study?: Pending
If yes, describe and/or provide URLs to materials shared and how they were shared:
If pending, date when feedback is expected: 28/02/2025
If no, explain why they haven't:
Have you enabled sharing of study data with others?: No
If yes, describe or provide URLs to how it has been shared:
If no, explain why sharing hasn't been enabled: No consent was gained from participants for sharing of data
Have you enabled sharing of tissue samples and associated data with others?: No
If yes, describe or provide a URL:
If no, explain why: Not applicableREC name
London - Brighton & Sussex Research Ethics Committee
REC reference
22/LO/0884
Date of REC Opinion
6 Feb 2023
REC opinion
Further Information Favourable Opinion