DIY HIV prevention: Formative qualitative research with men who have sex with men who source PrEP outside of clinical trials
Pre-exposure prophylaxis (PrEP) with antiretroviral medication is an effective, evidence-based option for HIV prevention. In England, issues of cost-effectiveness and of responsibility for commissioning prevention services have so far led National Health Service (NHS) England to decide not to commis...
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| Vydané v: | PloS one Ročník 13; číslo 8; s. e0202830 |
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| Hlavní autori: | , , , , |
| Médium: | Journal Article |
| Jazyk: | English |
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United States
Public Library of Science
23.08.2018
Public Library of Science (PLoS) |
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| ISSN: | 1932-6203, 1932-6203 |
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| Abstract | Pre-exposure prophylaxis (PrEP) with antiretroviral medication is an effective, evidence-based option for HIV prevention. In England, issues of cost-effectiveness and of responsibility for commissioning prevention services have so far led National Health Service (NHS) England to decide not to commission PrEP. Given the significant lag between the awareness of PrEP efficacy and the opportunity to obtain PrEP through traditional health care routes, many gay and other men who have sex with men (MSM) have turned to 'DIY PrEP', purchasing generic formulations of PrEP for themselves on the internet or via other alternative routes. However, there is very little research on DIY PrEP practices and no qualitative study with DIY PrEP users in the UK. A formative qualitative study was conducted in 2017 to inform the development of an intervention (PrEP Club) to support DIY PrEP users and improve the safety and experience of this prevention strategy. Focus groups were held with 20 MSM who are based in London and are obtaining PrEP through means other than clinical trials, to explore their accounts of sourcing and using PrEP and the experiential meanings of these. In this article, we report findings from this first, formative study and present the different practices involved in finding out about PrEP, buying it and ascertaining legitimacy of sellers and products. We reflect on the uncertainties participants described related to actually using PrEP, including deciding on drug dosing and monitoring their health. Finally, we present the results of the discussions participants had about the kind of support they had received, the help they would have liked, and their views on proposed interventions to support DIY PrEP users, such as PrEP Club. |
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| AbstractList | Pre-exposure prophylaxis (PrEP) with antiretroviral medication is an effective, evidence-based option for HIV prevention. In England, issues of cost-effectiveness and of responsibility for commissioning prevention services have so far led National Health Service (NHS) England to decide not to commission PrEP. Given the significant lag between the awareness of PrEP efficacy and the opportunity to obtain PrEP through traditional health care routes, many gay and other men who have sex with men (MSM) have turned to 'DIY PrEP', purchasing generic formulations of PrEP for themselves on the internet or via other alternative routes. However, there is very little research on DIY PrEP practices and no qualitative study with DIY PrEP users in the UK. A formative qualitative study was conducted in 2017 to inform the development of an intervention (PrEP Club) to support DIY PrEP users and improve the safety and experience of this prevention strategy. Focus groups were held with 20 MSM who are based in London and are obtaining PrEP through means other than clinical trials, to explore their accounts of sourcing and using PrEP and the experiential meanings of these. In this article, we report findings from this first, formative study and present the different practices involved in finding out about PrEP, buying it and ascertaining legitimacy of sellers and products. We reflect on the uncertainties participants described related to actually using PrEP, including deciding on drug dosing and monitoring their health. Finally, we present the results of the discussions participants had about the kind of support they had received, the help they would have liked, and their views on proposed interventions to support DIY PrEP users, such as PrEP Club. Pre-exposure prophylaxis (PrEP) with antiretroviral medication is an effective, evidence-based option for HIV prevention. In England, issues of cost-effectiveness and of responsibility for commissioning prevention services have so far led National Health Service (NHS) England to decide not to commission PrEP. Given the significant lag between the awareness of PrEP efficacy and the opportunity to obtain PrEP through traditional health care routes, many gay and other men who have sex with men (MSM) have turned to 'DIY PrEP', purchasing generic formulations of PrEP for themselves on the internet or via other alternative routes. However, there is very little research on DIY PrEP practices and no qualitative study with DIY PrEP users in the UK. A formative qualitative study was conducted in 2017 to inform the development of an intervention (PrEP Club) to support DIY PrEP users and improve the safety and experience of this prevention strategy. Focus groups were held with 20 MSM who are based in London and are obtaining PrEP through means other than clinical trials, to explore their accounts of sourcing and using PrEP and the experiential meanings of these. In this article, we report findings from this first, formative study and present the different practices involved in finding out about PrEP, buying it and ascertaining legitimacy of sellers and products. We reflect on the uncertainties participants described related to actually using PrEP, including deciding on drug dosing and monitoring their health. Finally, we present the results of the discussions participants had about the kind of support they had received, the help they would have liked, and their views on proposed interventions to support DIY PrEP users, such as PrEP Club.Pre-exposure prophylaxis (PrEP) with antiretroviral medication is an effective, evidence-based option for HIV prevention. In England, issues of cost-effectiveness and of responsibility for commissioning prevention services have so far led National Health Service (NHS) England to decide not to commission PrEP. Given the significant lag between the awareness of PrEP efficacy and the opportunity to obtain PrEP through traditional health care routes, many gay and other men who have sex with men (MSM) have turned to 'DIY PrEP', purchasing generic formulations of PrEP for themselves on the internet or via other alternative routes. However, there is very little research on DIY PrEP practices and no qualitative study with DIY PrEP users in the UK. A formative qualitative study was conducted in 2017 to inform the development of an intervention (PrEP Club) to support DIY PrEP users and improve the safety and experience of this prevention strategy. Focus groups were held with 20 MSM who are based in London and are obtaining PrEP through means other than clinical trials, to explore their accounts of sourcing and using PrEP and the experiential meanings of these. In this article, we report findings from this first, formative study and present the different practices involved in finding out about PrEP, buying it and ascertaining legitimacy of sellers and products. We reflect on the uncertainties participants described related to actually using PrEP, including deciding on drug dosing and monitoring their health. Finally, we present the results of the discussions participants had about the kind of support they had received, the help they would have liked, and their views on proposed interventions to support DIY PrEP users, such as PrEP Club. |
| Audience | Academic |
| Author | Anderson, Jane Paparini, Sara Rhodes, Tim Nguyen, Vinh-Kim Nutland, Will |
| AuthorAffiliation | 2 Department of Social and Environmental Health Research, Faculty of Public Health Policy, London School of Hygiene and Tropical Medicine, London, United Kingdom 1 Department of Anthropology and Sociology of Development, Graduate Institute of International and Development Studies, Geneva, Switzerland 3 Homerton University Hospital NHS Foundation Trust, London, United Kingdom University of Toronto, CANADA |
| AuthorAffiliation_xml | – name: 3 Homerton University Hospital NHS Foundation Trust, London, United Kingdom – name: 1 Department of Anthropology and Sociology of Development, Graduate Institute of International and Development Studies, Geneva, Switzerland – name: 2 Department of Social and Environmental Health Research, Faculty of Public Health Policy, London School of Hygiene and Tropical Medicine, London, United Kingdom – name: University of Toronto, CANADA |
| Author_xml | – sequence: 1 givenname: Sara orcidid: 0000-0002-1909-2481 surname: Paparini fullname: Paparini, Sara – sequence: 2 givenname: Will surname: Nutland fullname: Nutland, Will – sequence: 3 givenname: Tim surname: Rhodes fullname: Rhodes, Tim – sequence: 4 givenname: Vinh-Kim surname: Nguyen fullname: Nguyen, Vinh-Kim – sequence: 5 givenname: Jane orcidid: 0000-0001-5294-8707 surname: Anderson fullname: Anderson, Jane |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/30138482$$D View this record in MEDLINE/PubMed |
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| CitedBy_id | crossref_primary_10_1136_medhum_2022_012574 crossref_primary_10_1136_sextrans_2018_053773 crossref_primary_10_1111_hiv_13492 crossref_primary_10_1007_s10461_020_02855_9 crossref_primary_10_1080_00918369_2020_1712142 crossref_primary_10_1007_s10461_020_03085_9 crossref_primary_10_1016_S2468_2667_18_30254_8 crossref_primary_10_1080_09581596_2020_1844152 crossref_primary_10_3366_soma_2020_0312 crossref_primary_10_1080_13691058_2018_1539772 crossref_primary_10_1177_2050312119869110 crossref_primary_10_1007_s40265_019_01143_8 crossref_primary_10_1080_09540121_2023_2208322 crossref_primary_10_1177_0956462419831859 crossref_primary_10_1002_jia2_25395 crossref_primary_10_1177_17455057221091727 |
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| ContentType | Journal Article |
| Copyright | COPYRIGHT 2018 Public Library of Science 2018 Paparini et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. 2018 Paparini et al 2018 Paparini et al |
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| DOI | 10.1371/journal.pone.0202830 |
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| Notes | ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 14 content type line 23 Competing Interests: The authors have declared that no competing interests exist. SP has received speaker honoraria from ViiV HealthCare. JA has received speaker honoraria from Gilead Science, Merck Sharp Dohm, conference attendance support and consultancy fees from Gilead Sciences. VKN has received speaker honoraria from Gilead France. WN is the founder of PrEPster, a community based organisations that has received grants from MAC Aids Fund, Elton John AIDS Foundation, and Public Health England. WN has received personal travel grants from AVAC and speaker honoraria from the Thai Red Cross. This does not alter the authors’ adherence to PLOS ONE policies on sharing data and materials. |
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