Alex Sparrowhawk
Research Subjects
Alex Sparrowhawk has a total of 50 co-authors. Here are the top co-authors by number of shared publications:
- Fiona C. Lampe
Affiliation Institute for Global Health, University College London, London, United Kingdom
7 shared publications - Veronique Martin
Blood Safety, Hepatitis, Sexually Transmitted Infections and HIV Division UK Health Security Agency London UK
6 shared publications - Alison E. Brown
UK Health Security Agency, London, United Kingdom
5 shared publications - Alison J. Rodger
University College London, London, UK
5 shared publications - Carole Kelly
UK Health Security Agency, London, United Kingdom
5 shared publications - Hannah Kitt
UK Health Security Agency, London, United Kingdom
5 shared publications
Latest Publications
- Open Access
- 28 October 2026
- Published by National Institute for Health and Care Research in NIHR Open Research
- Vol. 6, 195
Process evaluation of a health coaching and social prescribing intervention to support adults with HIV in England: qualitative analysis of service providers’ perspectives on the implementation of the trial protocol
Background Health and wellbeing coaching supports people to set goals and motivates behaviour change to improve health and quality of life outcomes. The SPHERE trial aimed to test the effectiveness of a health and wellbeing coaching and social prescribing intervention in improving the health and wellbeing of people with HIV with unmet psychosocial need. In this intervention, HIV health care professionals were trained as health and wellbeing coaches. We explore the factors that promoted or inhibited the implementation of trial processes from the perspective of service providers. Methods A process evaluation of SPHERE involving semi-structured interviews with 24 service providers involved in the trial across seven HIV clinics in England. Interviews were conducted in two phases: (i) first three sites open for recruitment (October–December 2024) and (ii) main phase with all sites (April–August 2025). Topic guides were shaped by Normalisation Process Theory (NPT) constructs. Data were analysed using inductive and deductive coding guided by qualitative content analysis, abductive approaches and mapped to NPT constructs. Results Intervention components, strategies and organising logic promoted the implementation of trial processes. Health coaching training and supervision was viewed as a significant enabler for trial feasibility. Inhibitors to implementation centred around trial rules and resources particularly staffing capacity (workforce), workload and workflow. Social prescribing had mixed engagement and was fragmented in terms of communications and delivery. Conclusions Health and wellbeing coaching is a personalised approach which could improve mental and physical health outcomes and address psychosocial needs in people with long term conditions. Existing clinic capacity, resources and staff roles need to be considered when implementing coaching interventions which should also offer flexibility to ensure equitable reach and access. Trial registration ISRCTN47187932 (registered 12 July 2024).
- 28 October 2026
- Published by National Institute for Health and Care Research in NIHR Open Research
- Vol. 6, 195
Open AccessProcess evaluation of a health coaching and social prescribing intervention to support adults with HIV in England: qualitative analysis of service providers’ perspectives on the implementation of the trial protocol
Background Health and wellbeing coaching supports people to set goals and motivates behaviour change to improve health and quality of life outcomes. The SPHERE trial aimed to test the effectiveness of a health and wellbeing coaching and social prescribing intervention in improving the health and wellbeing of people with HIV with unmet psychosocial need. In this intervention, HIV health care professionals were trained as health and wellbeing coaches. We explore the factors that promoted or inhibited the implementation of trial processes from the perspective of service providers. Methods A process evaluation of SPHERE involving semi-structured interviews with 24 service providers involved in the trial across seven HIV clinics in England. Interviews were conducted in two phases: (i) first three sites open for recruitment (October–December 2024) and (ii) main phase with all sites (April–August 2025). Topic guides were shaped by Normalisation Process Theory (NPT) constructs. Data were analysed using inductive and deductive coding guided by qualitative content analysis, abductive approaches and mapped to NPT constructs. Results Intervention components, strategies and organising logic promoted the implementation of trial processes. Health coaching training and supervision was viewed as a significant enabler for trial feasibility. Inhibitors to implementation centred around trial rules and resources particularly staffing capacity (workforce), workload and workflow. Social prescribing had mixed engagement and was fragmented in terms of communications and delivery. Conclusions Health and wellbeing coaching is a personalised approach which could improve mental and physical health outcomes and address psychosocial needs in people with long term conditions. Existing clinic capacity, resources and staff roles need to be considered when implementing coaching interventions which should also offer flexibility to ensure equitable reach and access. Trial registration ISRCTN47187932 (registered 12 July 2024).
- Open Access
- 15 September 2026
- Published by Public Library of Science (PLoS) in PLOS ONE
- Vol. 21 (9) , e0354425
Sociodemographic variations in healthcare service use among people with HIV in the UK
Objectives: People with HIV on effective treatment can expect a normal life expectancy, though they may experience increased prevalence of other chronic health conditions. We assessed among people with HIV, non-HIV health care usage and variation by sociodemographic and lifestyle factors. Methods: Positive Voices 2022 is a national UK questionnaire study of people with HIV (April 2022-March 2023). Participants self-reported on use of a range of health services. Associations of sociodemographic and lifestyle factors with five specific services were assessed using modified Poisson regression. Prevalence ratios(aPRs) adjusted for age, demographic group and year of HIV diagnosis and 95% confidence intervals [95%CIs] are given. Results: Among 4451 people with healthcare use data, 79.0% attended their GP service in the past year, and 54.9%, 46.2%, 21.0%, and 10.0% attended dental, sexual health, accident and emergency (A&E) and mental health services, respectively. Use varied across sociodemographic groups. Older people were less likely to use mental health and sexual health services, but more likely to use GP and dentists. Black African men, other heterosexual men and Black African women were significantly less likely to use mental health services: aPR 0.19 95%CI[0.09–0.43], aPR 0.49 95%CI[0.31–0.78] and aPR 0.48 95%CI[0.34–0.68] respectively, compared to gay/bisexual/other men-who-have-sex-with-men. Participants without money for basic needs were much more likely to use mental health services (aPR 3.41, 95%CI[2.54–4.59] versus enough money) and A&E (aPR 2.00, 95%CI[1.65–2.45]), but less likely to use dentists (aPR 0.84 95%CI[0.73–0.96]). Obesity, smoking and comorbidities were also associated with higher use of A&E and mental health services. Conclusion: Healthcare service use among people with HIV varies across sociodemographic groups. Results suggest the need for interventions and policies to improve physical and mental health and access to timely care among people with socioeconomic disadvantage and to enable greater access to mental health services for Black African people.
- 15 September 2026
- Published by Public Library of Science (PLoS) in PLOS ONE
- Vol. 21 (9) , e0354425
Open AccessSociodemographic variations in healthcare service use among people with HIV in the UK
Objectives: People with HIV on effective treatment can expect a normal life expectancy, though they may experience increased prevalence of other chronic health conditions. We assessed among people with HIV, non-HIV health care usage and variation by sociodemographic and lifestyle factors. Methods: Positive Voices 2022 is a national UK questionnaire study of people with HIV (April 2022-March 2023). Participants self-reported on use of a range of health services. Associations of sociodemographic and lifestyle factors with five specific services were assessed using modified Poisson regression. Prevalence ratios(aPRs) adjusted for age, demographic group and year of HIV diagnosis and 95% confidence intervals [95%CIs] are given. Results: Among 4451 people with healthcare use data, 79.0% attended their GP service in the past year, and 54.9%, 46.2%, 21.0%, and 10.0% attended dental, sexual health, accident and emergency (A&E) and mental health services, respectively. Use varied across sociodemographic groups. Older people were less likely to use mental health and sexual health services, but more likely to use GP and dentists. Black African men, other heterosexual men and Black African women were significantly less likely to use mental health services: aPR 0.19 95%CI[0.09–0.43], aPR 0.49 95%CI[0.31–0.78] and aPR 0.48 95%CI[0.34–0.68] respectively, compared to gay/bisexual/other men-who-have-sex-with-men. Participants without money for basic needs were much more likely to use mental health services (aPR 3.41, 95%CI[2.54–4.59] versus enough money) and A&E (aPR 2.00, 95%CI[1.65–2.45]), but less likely to use dentists (aPR 0.84 95%CI[0.73–0.96]). Obesity, smoking and comorbidities were also associated with higher use of A&E and mental health services. Conclusion: Healthcare service use among people with HIV varies across sociodemographic groups. Results suggest the need for interventions and policies to improve physical and mental health and access to timely care among people with socioeconomic disadvantage and to enable greater access to mental health services for Black African people.
- Open Access
- 27 August 2026
- Published by Wiley in HIV Medicine
- Vol. 27 (11) , 1763-1777
Wellbeing of trans and gender‐diverse people with HIV in the United Kingdom: Results from Positive Voices 2022
Objectives: This national cross‐sectional observational study aimed to assess mental health, quality of life, supportive network, experiences of HIV‐related stigma in healthcare and unmet service need among trans and gender‐diverse people with HIV, compared to cisgender people with HIV. Methods: Positive Voices 2022 is a questionnaire survey of people accessing HIV care in England, Scotland and Wales carried out in 2022 and 2023 that included measures of depression and anxiety symptoms and suicidal ideation (PHQ‐9 and GAD‐7), health‐related quality of life (EQ‐5D‐5L), supportive network (modified Duke FSSQ), experiences of HIV‐related stigma in healthcare and service needs. Logistic and ordinal logistic regression assessed the association of gender identity with these measures unadjusted and adjusted for age group and ethnicity. Results: Overall, 67 trans or gender‐diverse and 4551 cisgender people with HIV participated. Compared to cisgender participants, trans and gender‐diverse participants were younger, more likely to be Asian and less likely to be black. They were less likely to be in employment, homeowners and financially secure. Trans and gender‐diverse participants had a higher prevalence of depression symptoms (35.5% [22/62] vs. 20.5% [865/4219], adjusted odds ratio [aOR] [95% confidence interval, CI] = 1.96 [1.15, 3.34]; p = 0.014) and suicidal ideation (37.1% [23/62] vs. 14.6% [616/4219]; aOR = 3.09 [1.85, 5.17]; p < 0.001) compared to cisgender participants. They also had poorer health‐related quality of life for three domains (anxiety and depression, usual activities and self‐care) and lower levels of supportive network in unadjusted and adjusted analyses. A higher proportion of trans and gender‐diverse participants than cisgender participants had unmet needs for health services, including mental health services (49.2% [31/63] vs. 30.2% [1310/4343]; aOR = 2.02 [1.22–3.35]; p = 0.007), lifestyle services, and welfare and social services. Conclusions: Trans and gender‐diverse people with HIV have poorer mental health and wellbeing than cisgender people with HIV, and a higher prevalence of unmet service needs, highlighting the need for access to culturally competent mental health and other health and welfare services.
- 27 August 2026
- Published by Wiley in HIV Medicine
- Vol. 27 (11) , 1763-1777
Open AccessWellbeing of trans and gender‐diverse people with HIV in the United Kingdom: Results from Positive Voices 2022
Objectives: This national cross‐sectional observational study aimed to assess mental health, quality of life, supportive network, experiences of HIV‐related stigma in healthcare and unmet service need among trans and gender‐diverse people with HIV, compared to cisgender people with HIV. Methods: Positive Voices 2022 is a questionnaire survey of people accessing HIV care in England, Scotland and Wales carried out in 2022 and 2023 that included measures of depression and anxiety symptoms and suicidal ideation (PHQ‐9 and GAD‐7), health‐related quality of life (EQ‐5D‐5L), supportive network (modified Duke FSSQ), experiences of HIV‐related stigma in healthcare and service needs. Logistic and ordinal logistic regression assessed the association of gender identity with these measures unadjusted and adjusted for age group and ethnicity. Results: Overall, 67 trans or gender‐diverse and 4551 cisgender people with HIV participated. Compared to cisgender participants, trans and gender‐diverse participants were younger, more likely to be Asian and less likely to be black. They were less likely to be in employment, homeowners and financially secure. Trans and gender‐diverse participants had a higher prevalence of depression symptoms (35.5% [22/62] vs. 20.5% [865/4219], adjusted odds ratio [aOR] [95% confidence interval, CI] = 1.96 [1.15, 3.34]; p = 0.014) and suicidal ideation (37.1% [23/62] vs. 14.6% [616/4219]; aOR = 3.09 [1.85, 5.17]; p < 0.001) compared to cisgender participants. They also had poorer health‐related quality of life for three domains (anxiety and depression, usual activities and self‐care) and lower levels of supportive network in unadjusted and adjusted analyses. A higher proportion of trans and gender‐diverse participants than cisgender participants had unmet needs for health services, including mental health services (49.2% [31/63] vs. 30.2% [1310/4343]; aOR = 2.02 [1.22–3.35]; p = 0.007), lifestyle services, and welfare and social services. Conclusions: Trans and gender‐diverse people with HIV have poorer mental health and wellbeing than cisgender people with HIV, and a higher prevalence of unmet service needs, highlighting the need for access to culturally competent mental health and other health and welfare services.
- Open Access
- 4 May 2026
- Published by Public Library of Science (PLoS) in PLOS ONE
- Vol. 21 (5) , e0343610
Stigma and depression among heterosexual men and women living with HIV in the UK: Investigating a conceptual framework
Background: Examining the relationship of HIV stigmatisation in different social settings with internalised HIV stigma, loneliness and depression among people with HIV, may help in further understanding HIV stigma and informing approaches and interventions to help to mitigate the impacts. The aim of this paper was to investigate among heterosexual men and women, a devised conceptual model of hypothesized causal connections between socio-demographic, HIV-related and psychosocial factors, measures of HIV stigmatisation, and depressive symptoms, in which feelings of loneliness because of HIV are theorised to mediate the relationship between internalised HIV stigma and depression. Methods and findings: This was investigated using structural equation modelling (SEM) and data from Positive Voices, a national cross-sectional study of people living with HIV in the UK (2022−2023). The analysis is based on participants who identified as heterosexual and were cis-gender (N = 1232). The mean age was 52 years; 48.5% were Black African, and 39.0% of white ethnicity. Twenty percent of participants were diagnosed with HIV within the last decade (2014−2022). Overall, 51.6% and 35.2% agreed or strongly agreed with the statements ‘I am ashamed of my HIV status’ and ‘I have poor self-esteem because of my HIV status’ respectively; 57.9% (n = 713/1232) agreed/strongly agreed with either item and were classified as positive for internalised HIV stigma. For the measure of having felt isolated/lonely because of HIV, the prevalence of responding with ‘yes, in the last year’ or ‘yes, but not in the last year’ was 14.2% and 11.7% respectively. The prevalence of depressive symptoms was 18.6% (PHQ-9 score ≥10). The data were consistent with the devised conceptual model. Of the factors investigated to be directly associated with internalised HIV stigma, the largest Beta coefficient was for the association with HIV stigmatisation in healthcare (Beta = 0.600; p < 0.001). The second largest was for having felt scared to be in public places because of HIV in the last year (Beta = 0.271; p < 0.001), closely followed by HIV stigmatisation from family (Beta = 0.269; p < 0.001). Of the factors investigated to be directly associated with depression, the largest Beta coefficient was for the association with having felt isolated/lonely because of HIV (Beta = 0.492; p < 0.001). The second largest was for the inverse association with resilience (Beta = −0.288; p < 0.001), followed closely by financial hardship (Beta = 0.267; p < 0.001), having ‘told most people in my life that I have HIV’ (Beta = 0.267; p < 0.001), and the inverse association with supportive network (Beta = −0.202; p < 0.001). The largest Beta coefficient for direct effects was for the association between internalised HIV stigma and having felt isolated/lonely because of HIV (Beta = 0.842; p < 0.001). Internalised HIV stigma was associated with depression indirectly through having felt isolated/lonely because of HIV (indirect Beta = 0.415; p < 0.001). Conclusions: Our findings add to existing literature by implicating a number of key factors that upon intervention may help prevent or attenuate symptoms of depression in people living with HIV, including reducing stigmatisation in healthcare, internalised HIV stigma, and loneliness/social isolation.
- 4 May 2026
- Published by Public Library of Science (PLoS) in PLOS ONE
- Vol. 21 (5) , e0343610
Open AccessStigma and depression among heterosexual men and women living with HIV in the UK: Investigating a conceptual framework
Background: Examining the relationship of HIV stigmatisation in different social settings with internalised HIV stigma, loneliness and depression among people with HIV, may help in further understanding HIV stigma and informing approaches and interventions to help to mitigate the impacts. The aim of this paper was to investigate among heterosexual men and women, a devised conceptual model of hypothesized causal connections between socio-demographic, HIV-related and psychosocial factors, measures of HIV stigmatisation, and depressive symptoms, in which feelings of loneliness because of HIV are theorised to mediate the relationship between internalised HIV stigma and depression. Methods and findings: This was investigated using structural equation modelling (SEM) and data from Positive Voices, a national cross-sectional study of people living with HIV in the UK (2022−2023). The analysis is based on participants who identified as heterosexual and were cis-gender (N = 1232). The mean age was 52 years; 48.5% were Black African, and 39.0% of white ethnicity. Twenty percent of participants were diagnosed with HIV within the last decade (2014−2022). Overall, 51.6% and 35.2% agreed or strongly agreed with the statements ‘I am ashamed of my HIV status’ and ‘I have poor self-esteem because of my HIV status’ respectively; 57.9% (n = 713/1232) agreed/strongly agreed with either item and were classified as positive for internalised HIV stigma. For the measure of having felt isolated/lonely because of HIV, the prevalence of responding with ‘yes, in the last year’ or ‘yes, but not in the last year’ was 14.2% and 11.7% respectively. The prevalence of depressive symptoms was 18.6% (PHQ-9 score ≥10). The data were consistent with the devised conceptual model. Of the factors investigated to be directly associated with internalised HIV stigma, the largest Beta coefficient was for the association with HIV stigmatisation in healthcare (Beta = 0.600; p < 0.001). The second largest was for having felt scared to be in public places because of HIV in the last year (Beta = 0.271; p < 0.001), closely followed by HIV stigmatisation from family (Beta = 0.269; p < 0.001). Of the factors investigated to be directly associated with depression, the largest Beta coefficient was for the association with having felt isolated/lonely because of HIV (Beta = 0.492; p < 0.001). The second largest was for the inverse association with resilience (Beta = −0.288; p < 0.001), followed closely by financial hardship (Beta = 0.267; p < 0.001), having ‘told most people in my life that I have HIV’ (Beta = 0.267; p < 0.001), and the inverse association with supportive network (Beta = −0.202; p < 0.001). The largest Beta coefficient for direct effects was for the association between internalised HIV stigma and having felt isolated/lonely because of HIV (Beta = 0.842; p < 0.001). Internalised HIV stigma was associated with depression indirectly through having felt isolated/lonely because of HIV (indirect Beta = 0.415; p < 0.001). Conclusions: Our findings add to existing literature by implicating a number of key factors that upon intervention may help prevent or attenuate symptoms of depression in people living with HIV, including reducing stigmatisation in healthcare, internalised HIV stigma, and loneliness/social isolation.
- Open Access
- 27 February 2025
- Published by JMIR Publications Inc. in JMIR Research Protocols
- Vol. 14 (1) , e72512
Correction: Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study
[This corrects the article DOI: 10.2196/58531.].
- 27 February 2025
- Published by JMIR Publications Inc. in JMIR Research Protocols
- Vol. 14 (1) , e72512
Open AccessCorrection: Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study
[This corrects the article DOI: 10.2196/58531.].
- Open Access
- 11 February 2025
- Published by JMIR Publications Inc. in JMIR Preprints
Correction: Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study (Preprint)
Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author).
- 11 February 2025
- Published by JMIR Publications Inc. in JMIR Preprints
Open AccessCorrection: Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study (Preprint)
Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author).
- Open Access
- 10 January 2025
- Published by JMIR Publications Inc. in JMIR Research Protocols
- Vol. 14 (1) , e58531
Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study
Background: Due to advances in treatment, HIV is now a chronic condition with near-normal life expectancy. However, people with HIV continue to have a higher burden of mental and physical health conditions and are impacted by wider socioeconomic issues. Positive Voices is a nationally representative series of surveys of people with HIV in the United Kingdom. It monitors the physical, mental, and social health, well-being, and needs of this population so that they can be addressed. Objective: This paper aimed to describe the methodology, recruitment strategies, and key demographic features of participants recruited for the second national round of Positive Voices (PV2022). Methods: PV2022 was a national, cross-sectional questionnaire study that included people attending HIV care at 101 of the 178 clinics in the United Kingdom between April 2022 and March 2023. Data from the HIV and AIDS reporting system (HARS), a national surveillance database of people with HIV and attending care that is held at the UK Health Security Agency (UKHSA), was used as a sampling frame. The information collected in PV2022 included demographic and socioeconomic factors, HIV diagnoses and treatment, mental and physical health, health service use and satisfaction, social care and support, met and unmet needs, stigma and discrimination, quality of life, lifestyle factors, and additional challenges experienced due to the COVID-19 pandemic. Data linkage to HARS enabled the extraction of clinical information on antiretroviral therapy (ART), HIV viral load, and CD4 lymphocyte counts. Probabilistic sampling was used to provide a randomly selected, representative sample of people attending HIV care who could be invited to complete a paper or online questionnaire. At the start of 2023, due to under-recruitment mainly due to the impact of the monkeypox (Mpox) outbreak, a separate sequential recruitment strategy was initiated in 14 of the largest clinics to increase participant numbers. Results: Of the 4622 participants who completed the questionnaire, 3692 were recruited through probabilistic recruitment and 930 through sequential recruitment. The overall response rate (measured as the number of people who completed a questionnaire of those who either accepted or declined) was 50%. Survey respondents represented approximately 1 in 20 people diagnosed with HIV in England, Wales, and Scotland. The median age of participants was 52 years, 3428 of participants were men, 2991 were White, and 1121 were Black. Conclusions: PV2022 is currently the largest survey of people with HIV in the United Kingdom (as of September 2024). The PV2022 findings will be used to explore the health and well-being of the HIV population and examine associations with demographic, socioeconomic, lifestyle, and other HIV-related factors. International Registered Report Identifier (IRRID): RR1-10.2196/58531
- 10 January 2025
- Published by JMIR Publications Inc. in JMIR Research Protocols
- Vol. 14 (1) , e58531
Open AccessMethodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study
Background: Due to advances in treatment, HIV is now a chronic condition with near-normal life expectancy. However, people with HIV continue to have a higher burden of mental and physical health conditions and are impacted by wider socioeconomic issues. Positive Voices is a nationally representative series of surveys of people with HIV in the United Kingdom. It monitors the physical, mental, and social health, well-being, and needs of this population so that they can be addressed. Objective: This paper aimed to describe the methodology, recruitment strategies, and key demographic features of participants recruited for the second national round of Positive Voices (PV2022). Methods: PV2022 was a national, cross-sectional questionnaire study that included people attending HIV care at 101 of the 178 clinics in the United Kingdom between April 2022 and March 2023. Data from the HIV and AIDS reporting system (HARS), a national surveillance database of people with HIV and attending care that is held at the UK Health Security Agency (UKHSA), was used as a sampling frame. The information collected in PV2022 included demographic and socioeconomic factors, HIV diagnoses and treatment, mental and physical health, health service use and satisfaction, social care and support, met and unmet needs, stigma and discrimination, quality of life, lifestyle factors, and additional challenges experienced due to the COVID-19 pandemic. Data linkage to HARS enabled the extraction of clinical information on antiretroviral therapy (ART), HIV viral load, and CD4 lymphocyte counts. Probabilistic sampling was used to provide a randomly selected, representative sample of people attending HIV care who could be invited to complete a paper or online questionnaire. At the start of 2023, due to under-recruitment mainly due to the impact of the monkeypox (Mpox) outbreak, a separate sequential recruitment strategy was initiated in 14 of the largest clinics to increase participant numbers. Results: Of the 4622 participants who completed the questionnaire, 3692 were recruited through probabilistic recruitment and 930 through sequential recruitment. The overall response rate (measured as the number of people who completed a questionnaire of those who either accepted or declined) was 50%. Survey respondents represented approximately 1 in 20 people diagnosed with HIV in England, Wales, and Scotland. The median age of participants was 52 years, 3428 of participants were men, 2991 were White, and 1121 were Black. Conclusions: PV2022 is currently the largest survey of people with HIV in the United Kingdom (as of September 2024). The PV2022 findings will be used to explore the health and well-being of the HIV population and examine associations with demographic, socioeconomic, lifestyle, and other HIV-related factors. International Registered Report Identifier (IRRID): RR1-10.2196/58531
- Open Access
- 2 April 2024
- Published by JMIR Publications Inc. in JMIR Preprints
Methodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study (Preprint)
BACKGROUND Due to advances in treatment, HIV is now a chronic condition with near-normal life expectancy. However, people with HIV continue to have a higher burden of mental and physical health conditions and are impacted by wider socioeconomic issues. Positive Voices is a nationally representative series of surveys of people with HIV in the United Kingdom. It monitors the physical, mental, and social health, well-being, and needs of this population so that they can be addressed. OBJECTIVE This paper aimed to describe the methodology, recruitment strategies, and key sociodemographic features of participants recruited for the second national round of Positive Voices (PV2022). METHODS PV2022 was a national, cross-sectional questionnaire study that included people attending HIV care at 101 of the 178 clinics in the United Kingdom between April 2022 and March 2023. Data from the HIV and AIDS reporting system (HARS), a national surveillance database of people with HIV and attending care that is held at the UK Health Security Agency (UKHSA), was used as a sampling frame. The information collected in PV2022 included demographic and socioeconomic factors, HIV diagnoses and treatment, mental and physical health, health service use and satisfaction, social care and support, met and unmet needs, stigma and discrimination, quality of life, lifestyle factors, and additional challenges experienced due to the COVID-19 pandemic. Data linkage to HARS enabled the extraction of clinical information on antiretroviral therapy (ART), HIV viral load, and CD4 lymphocyte counts. Probabilistic sampling was used to provide a randomly selected, representative sample of people attending HIV care who could be invited to complete a paper or online questionnaire 'on the web' to online. At the start of 2023, the study was underrecruiting, mainly due to the mpox outbreak, and a separate sequential recruitment strategy was initiated in 14 of the largest and most demographically diverse clinics to increase participant numbers. RESULTS Of the 4622 participants who completed the questionnaire, 3692 were recruited through probabilistic recruitment and 930 through sequential recruitment. The overall response rate (measured as the number of people who completed a questionnaire of those who either accepted or declined) was 50%. Survey respondents represented approximately 1 in 20 people diagnosed with HIV in England, Wales, and Scotland. The median age of participants was 52 years, 3428 of participants were male, 2991 were of White ethnicity, and 1121 were of Black ethnicity. CONCLUSIONS PV2022 is currently the largest survey of people with HIV in the United Kingdom (as of September 2024). The PV2022 findings will be used to explore the health and well-being of the HIV population and examine associations with demographic, socioeconomic, lifestyle, and other HIV-related factors. INTERNATIONAL REGISTERED REPORT RR1-10.2196/58531
- 2 April 2024
- Published by JMIR Publications Inc. in JMIR Preprints
Open AccessMethodology for the Positive Voices 2022 Survey of People With HIV Accessing Care in England, Wales, and Scotland: Cross-Sectional Questionnaire Study (Preprint)
BACKGROUND Due to advances in treatment, HIV is now a chronic condition with near-normal life expectancy. However, people with HIV continue to have a higher burden of mental and physical health conditions and are impacted by wider socioeconomic issues. Positive Voices is a nationally representative series of surveys of people with HIV in the United Kingdom. It monitors the physical, mental, and social health, well-being, and needs of this population so that they can be addressed. OBJECTIVE This paper aimed to describe the methodology, recruitment strategies, and key sociodemographic features of participants recruited for the second national round of Positive Voices (PV2022). METHODS PV2022 was a national, cross-sectional questionnaire study that included people attending HIV care at 101 of the 178 clinics in the United Kingdom between April 2022 and March 2023. Data from the HIV and AIDS reporting system (HARS), a national surveillance database of people with HIV and attending care that is held at the UK Health Security Agency (UKHSA), was used as a sampling frame. The information collected in PV2022 included demographic and socioeconomic factors, HIV diagnoses and treatment, mental and physical health, health service use and satisfaction, social care and support, met and unmet needs, stigma and discrimination, quality of life, lifestyle factors, and additional challenges experienced due to the COVID-19 pandemic. Data linkage to HARS enabled the extraction of clinical information on antiretroviral therapy (ART), HIV viral load, and CD4 lymphocyte counts. Probabilistic sampling was used to provide a randomly selected, representative sample of people attending HIV care who could be invited to complete a paper or online questionnaire 'on the web' to online. At the start of 2023, the study was underrecruiting, mainly due to the mpox outbreak, and a separate sequential recruitment strategy was initiated in 14 of the largest and most demographically diverse clinics to increase participant numbers. RESULTS Of the 4622 participants who completed the questionnaire, 3692 were recruited through probabilistic recruitment and 930 through sequential recruitment. The overall response rate (measured as the number of people who completed a questionnaire of those who either accepted or declined) was 50%. Survey respondents represented approximately 1 in 20 people diagnosed with HIV in England, Wales, and Scotland. The median age of participants was 52 years, 3428 of participants were male, 2991 were of White ethnicity, and 1121 were of Black ethnicity. CONCLUSIONS PV2022 is currently the largest survey of people with HIV in the United Kingdom (as of September 2024). The PV2022 findings will be used to explore the health and well-being of the HIV population and examine associations with demographic, socioeconomic, lifestyle, and other HIV-related factors. INTERNATIONAL REGISTERED REPORT RR1-10.2196/58531