Journal of Community Health https://doi.org/10.1007/s10900-020-00900-1 ORIGINAL PAPER The Role of Community Health Workers Within the Continuum of Services for HIV, Viral Hepatitis, and Other STIs Amongst Men Who Have Sex with Men in Europe Nicolas Lorente1,2,11 · Nigel Sherriff3 · Oksana Panochenko4 · Ulrich Marcus5 · Maria Dutarte6,7 · Matthias Kuske8 · Susanna Aussó1,2 · Jörg Huber3 · Michael Krone4 · Susanne Barbara Schink5 · Caoimhe Cawley5 · Jordi Casabona1,2,9,10 · Cinta Folch1,2,9 © Springer Science+Business Media, LLC, part of Springer Nature 2020 Abstract Little is known about Community Health Workers (CHWs) who work in non-clinical settings to provide sexual health sup- port around HIV, viral hepatitis, and other sexually transmitted infections (STIs) to men who have sex with men (MSM) in Europe and neighbouring countries. This article describes for the first time, who CHWs are, and how they contribute to the continuum of services for HIV, viral hepatitis, and other STIs amongst MSM. The first European Community Health Worker Online Survey (ECHOES) developed in the framework of the EU-funded ESTICOM project (www.estic​om.eu), was avail- able in 16 languages (October 2017-January 2018). Amongst the 1035 persons aged 18 and older reporting CHW activities in the previous 12 months, 28.2% were women, 30.7% were volunteers, 59.2% were men self-defining as gay/homosexual, bisexual or queer (‘peer CHWs’), and most CHWs worked/volunteered in private not-for-profit organisations (86.4%). CHWs involvement in the continuum of services for HIV, viral hepatitis and other STIs was as follows: primary prevention (88.6%), consultation and counselling (58.0%), testing provision (50.6%), linkage to care (49.8%), and treatment and sup- port activities (51.3%). CHWs were also involved in cross-cutting activities such as developing interventions, advocacy, and engaging in research (46.3%). CHWs as a public health workforce contribute to all steps of the continuum of services for HIV, viral hepatitis, and other STIs amongst MSM in Europe. National governments should recognise and support CHWs better in order to make their activities more visible and sustainable, and increase their impact on the continuum of services. Keywords Community Health Workers · MSM · HIV · Viral hepatitis · Sexually transmitted infections · Sexual health Introduction Since 2009, CHWs were recognised formally as a dis- tinctive workforce in the US [4] and have been part of the Community Health Workers (CHWs), a workforce first WHO classification of healthcare workers since 2010 [5]. In described in the 1970s in the US and in low- and middle- Europe, i.e. the European Union (EU) and its neighbouring income countries, are of growing importance for national countries, such formal recognition does not exist. health systems, regardless of the level of development of The ‘community’ has always been at the heart of the HIV the country [1]. Although it is still difficult to define across response [6, 7], and many studies have shown the efficacy of countries who they are and what they do, a core characteris- specific CHW programmes in preventing or managing HIV tic of CHWs is their proximity to the community they serve: in different groups and settings [8–12], as well as in con- they are part of, or have an in-depth understanding of such tributing to the UNAIDS 90–90–90 targets [13]. However, a community [2, 3]. CHWs have never really been embraced as an integral part of health systems and nationally coordinated HIV responses in Europe. There is still room for full inclusion of commu- nity actions in the overall response to the HIV epidemic [14] * Nicolas Lorente and more generally in health systems where CHW potential nlorente@igtp.cat is not fully realised [15, 16]. Extended author information available on the last page of the article 13 Vol.:(0123456789) Journal of Community Health In Europe, where MSM currently represent approximately Survey Promotion 40% of all new HIV diagnoses [17], many community-based initiatives aiming to reduce the burden of HIV, viral hepati- The survey was promoted mainly through direct emailing to tis, and other sexually transmitted infections (STIs) amongst Local Multipliers (LMs) identified in all eligible countries. men who have sex with men (MSM) were reported, espe- LMs were mainly people working in NGOs offering sexual cially regarding testing [18–20]. However, the term ‘CHW’ health support to MSM and assumed to have an extended is not commonly used [21] and little is known about the role network amongst CHWs. Promotional material (usually of CHWs providing sexual health support to MSM. translated into the national language) was sent to LMs with a This article is based on findings from the European Com- request for further dissemination. Emails targeted European munity Health Worker Online Survey (ECHOES) which and national organisations, as well as networks of people aimed, for the first time, to assess knowledge, attitudes and working with MSM. The ECHOES launch and updates on practices of CHWs providing sexual health support to MSM recruitment were published on different websites as well as in non-clinical settings across Europe. The objective of this in newsletters and social media (including paid Facebook article is to describe who these CHWs are, and what they adverts). One of the biggest challenges was to ensure the tar- do regarding the continuum of STI services as understood get population for the survey understood the term ‘CHW’. by WHO: preventing, diagnosing, treating and curing [22]. Five interviews of CHWs were thus published to illustrate and improve understanding of who can be considered as CHW in the framework of ECHOES. A lay article was also published Methods with the same purpose, and other promotional activities were conducted during the course of the survey implementation ECHOES was implemented in the framework of the Euro- to increase participation (leaflets and word-clouds posted in pean Surveys and Training to Improve MSM Community social media, online webinar, and marketing at relevant expert Health (ESTICOM) project, funded by the European Com- meetings and forums like the EU HIV/AIDS, Viral Hepatitis mission (see details in the funding section). ESTICOM com- and Tuberculosis Civil Society Forum). prised ECHOES, the European MSM Internet Survey (EMIS 2017) [23], and the Training Programme for CHWs provid- ing sexual health support to MSM in non-clinical settings in Ethics and Data Protection Issues Europe. The latter was partly based on ECHOES preliminary results, and piloted in 20 European countries. Feedback from Ethical clearance for the initial questionnaire design and the implementation of the Training Programme for CHWs is development activities (e.g. piloting) was obtained from the briefly reported in the discussion of this article. University of Brighton’s School of Health Sciences, School Research Ethics and Governance Panel (SREGP, United King- Study Design and Questionnaire dom). Additional approval to host the survey online and recruit respondents was received from the Hospital Universitari Ger- In this article, ‘Europe’ refers to ECHOES eligible countries, mans Trias i Pujol Ethics Committee (Badalona, Spain). i.e. all 28 EU member states and eight neighbouring coun- In agreement with the European General Data Protection tries: Bosnia and Herzegovina, Iceland, Moldova, Norway, Regulation (GDPR), an introductory page informed respondents Russia, Serbia, Switzerland, and Ukraine. about what kind of data would be collected, storage, protec- A full description of the ECHOES protocol and question- tion, treatment, and consent to take part and also to withdraw. naire design has been published elsewhere [24]. In brief, Respondents were asked to tick boxes to confirm that they under- ECHOES was an online survey that aimed to assess knowl- stood each point and agreed to take part in ECHOES. The sur- edge, attitudes and practices of CHWs providing sexual vey was anonymous: no personal data (e.g. names, addresses), health support to MSM in Europe. The survey was avail- IP addresses, or origin from where participants had been linked able in 16 languages and went online in September 2017 to the ECHOES landing page were collected or stored. for a period of four months. The questionnaire comprised around 175 questions and took approximately 20 min to complete. The main sections of the questionnaire were as Eligibility Criteria and Study Sample follows: socio-demographics, job, employment status, and organisation worked for; activities as a CHW; populations As ECHOES was the first survey of its kind in Europe, the worked with; barriers to performing CHW activities; recruit- study population was mostly unknown to the research team. ment as a CHW; thoughts and feelings about role as a CHW; A broad working definition was discussed and agreed by the confidence about one’s knowledge; HIV related issues and team and used at the beginning of the online questionnaire illicit substance use. 13 Journal of Community Health and in the promotional material to explain who could be Measures and Variables considered as a ‘CHW’: The variables described in this article usually report A community health worker (CHW) is someone who response frequencies for each question item or grouped provides sexual health support around HIV/AIDS, viral items, but other key variables required specific processing: hepatitis and other sexually transmitted infections, to The WHO-5 well-being index is a short self-reported gay, bisexual and other men who have sex with men. A measure of current mental well-being and assesses positive CHW delivers health promotion or public health activi- aspects of mental health based on five items: (a) I have felt ties in community settings (not in a hospital or clinic). cheerful and in good spirits, (b) I have felt calm and relaxed, Based on this definition, the eligibility criteria were as (c) I have felt active and vigorous, (d) I woke up feeling fresh follows: providing sexual health support for MSM in a com- and rested, (e) My daily life has been filled with things that munity setting (i.e. not in a hospital or clinic) during the last interest me [25]. These items were measured using a 6-point 12 months, doing so in one of the 36 eligible countries (see Likert scale (at no time, some of the time, less than half of above), being aged 18 years or older, and consenting to take the time, more than half of the time, most of the time, all of part in the survey. the time). This well-being scale performed well in the ECH- A convenience sample of CHWs was recruited during OES sample (Cronbach’s α = 0.88, good reliability), and was the 4 months the ECHOES questionnaire was live. Over- transformed to a range from 0 to 100. A score below 50 may all, 1181 individuals completed the questionnaire from indicate that the respondent is at risk for depression [26], the 25th September 2017 to the 31st January 2018. Amongst index was thus dichotomised into poor (index < 50) versus these, 107 respondents were excluded from the final sample good (index ≥ 50) well-being. because they did not provide sexual health support to MSM The peer role of respondents characterises those men who in community settings within the previous 12 months. A identified themselves as homosexual, gay, bisexual or queer. further 24 respondents were excluded because they were not The job title descriptions were gathered using the open working in one of the eligible countries, and 15 because they question: ‘We know that many people do not use the term were under 18 years old or did not answer the age question ‘Community Health Worker’. How would you describe (a technical problem let the first participants continue the your job title?’. Free text answers were first translated into questionnaire although they did not provide their age or were English (705 different answers), and then harmonised for under 18 years old, not allowed afterwards). The final study spelling, resulting in a total of 365 different answers. The sample (n = 1035) is unequally distributed across Europe, most frequent ones were reported by 6.7% of the sample, with four of the most populous EU countries representing while 56% of all answers were mentioned by less than 1% more than half of the sample (Germany, Spain, the UK, and of the sample. Based on these answers, dummy variables France; n = 546), and other countries comprising 1 to 37 were created using keywords mentioned by more than 1% respondents (Fig. 1). of all respondents in order to get more information about Fig. 1  ECHOES study sample by country respondents work in (n = 1035) 13 Journal of Community Health the content of job descriptions. Keywords were single words only Italy and Croatia being classified differently (Fig. 2). (e.g. ‘volunteer’) or the root of a family of words (e.g. ‘test*’ Overall, 786 respondents (75.9%) were from ‘low LGBTI for ‘test’, ‘testing’, ‘tester’, etc.). inequality countries’, and 249 (24.1%) from ‘high LGBTI inequality countries’. Data management and analysis were performed using Data Analysis SPSS-17 software (SPSS Inc., Chicago, Illinois, USA) and Stata 15 (StataCorp. 2011. Stata Statistical Software: A descriptive analysis of respondents’ main characteris- Release 15. College Station, TX, USA). tics (socio-demographics, sexual identity, and health) and their role as CHW (employment, peer role, organisation, job description, and activities) was performed. Frequencies Results and percentages (excluding missing values) were given both overall and by the country where respondents worked (using Characteristics of CHWs Providing Sexual Health chi-squared tests to determine significance of the difference Support to MSM in Non‑clinical Settings when p-value < 0.05). Respondents’ working countries were grouped using the The main characteristics of respondents are depicted in legal index of Lesbian, Gay, Bisexual, Trans, and Inter- Table 1. CHWs who participated in ECHOES were mostly sex (LGBTI) inequality, or Rainbow-Europe index. The men (67.9%), aged 41 or older (47.4%), reported at least Rainbow-Europe index is made by the European Region of 6 years of education after the age of 16 (72.2%), and lived in the International Lesbian, Gay, Bisexual, Trans & Intersex a city of more than 500,000 inhabitants (56.7%). Almost half Association (ILGA-Europe, https​://rainb​ow-europ​e.org/ of the sample (44.2%) indicated that they were living com- count​ry-ranki​ng). The index ranges from 0 (gross violations fortably or very comfortably on their present income, while of human rights, discrimination) to 100 (respect of human 15.9% reported that they were struggling or really struggling rights, full equality). The median index of all countries with on present income. Almost three in five respondents (58.0%) at least one respondent was 45.7/100. Countries were then identified as gay or homosexual, and one in four (25.0%) grouped as follows: ‘low LGBTI inequality countries’ for as heterosexual or straight. Amongst the former, the large those with an index >45.7, ‘high LGBTI inequality coun- majority (92.2%) reported to be out to more than half, all or tries’ for those with an index ≤45.7. almost all their relatives and friends. This country grouping almost corresponds to the geo- CHWs generally felt to be in good or very good health, graphical division of the WHO European Region [17], with but more than one in five (22.3%) could be considered as Fig. 2  Country grouping based on the Rainbow-Europe index of LGBTI inequality. “High LGBTI inequality” countries comprise: Bosnia & Herzego- vina, Bulgaria, Cyprus, Czech Republic, Estonia, Hungary, Italy, Latvia, Lithuania, Moldova, Poland, Romania, Russia, Serbia, Slovakia, Slo- venia, Ukraine; “Low LGBTI inequality” countries comprise: Austria, Belgium, Croatia, Denmark, Finland, France, Germany, Greece, Iceland, Ireland, Luxembourg, Malta, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, United Kingdom 13 Journal of Community Health Table 1  Socio-demographic and Working Working Total p-value health-related characteristics in low in high (n = 1035) of CHWs participating in LGBTI LGBTI ECHOES (n = 1035) inequality inequality ­countriesa ­countriesb (n = 786) (n = 249) % n % n % n Age 0.035 18–30 19.5 153 25.7 64 21.0 217 31–40 31.0 244 33.3 83 31.6 327 41 or older 49.5 389 41.0 102 47.4 491 Gender 0.002 Man 70.2 552 60.6 151 67.9 703 Woman 25.6 201 36.5 91 28.2 292 Non binary 2.7 21 2.8 7 2.7 28 Other/prefer not say 1.5 12 0 0 1.2 12 Years in full education since the age of 16 0.239 None or 1 year 3.4 26 2.5 6 3.2 32 2 to 5 years 25.7 198 21.1 51 24.6 249 6 or more years 70.9 546 76.4 185 72.2 731 Settlement size 0.782 A village or rural area/A small town—up to 20,000 4.1 32 5.6 14 4.5 46 A large town or small city—up to 100,000 11.2 87 10.9 27 11.1 114 A medium-sized city—up to 500,000 27.7 216 27.8 69 27.7 285 A big city—more than 500,000 57.1 445 55.6 138 56.7 583 Feelings about present household income 0.008 Living comfortably or very comfortably on present income 46.8 362 36.0 89 44.2 451 Neither comfortable nor struggling on present income 38.6 299 44.1 109 40.0 408 Struggling or really struggling on present income 14.6 113 19.8 49 15.9 162 Sexual identity 0.018 Homosexual/gay 60.6 476 49.8 124 58.0 600 Heterosexual/straight 23.2 182 30.9 77 25.0 259 Bisexual 4.3 34 6.4 16 4.8 50 Queer 4.1 32 2.8 7 3.8 39 Lesbian 1.9 15 1.2 3 1.7 18 Any other/do not use a term 6.0 47 8.8 22 6.7 69 Outnessc < 0.001 More than half, all or almost all relatives and friends 95.0 743 83.5 207 92.2 950 Less than half, few or none 5.0 39 16.5 41 7.8 80 Perceived health status 0.001 Very good or good 85.6 660 76.3 184 83.4 844 Fair, bad or very bad 14.4 111 23.7 57 16.6 168 WHO-5 well-being scale 0.180 Poor well-being 21.3 163 25.4 62 22.3 225 Good well-being 78.7 602 74.6 182 77.7 784 Ever tested for HIV 0.625 No 6.9 53 7.8 19 7.1 72 Yes 93.1 719 92.2 225 92.9 944 ­ IVd Diagnosed with H 0.718 No 75.0 533 73.8 163 74.7 696 Yes 25.0 178 26.2 58 25.3 236 CHW Community Health Worker a Roughly corresponding to Western Europe countries (see Fig. 2) b Roughly corresponding to Eastern Europe countries (seeFig. 2) c Amongst self-identified gays, lesbians, bisexual, or queer respondents d Amongst those ever tested for HIV. 13 Journal of Community Health having a poor level of well-being according to the WHO-5 (69.3%), worked for a private not-for-profit organisation well-being index [26]. The majority of respondents (92.9%) (86.4%), and were peer CHWs (59.2%). CHWs from high had ever been tested for HIV, and 25.3% of those ever tested inequality countries were more often volunteers (36.5%) reported to be HIV positive. than CHWs from low inequality countries (28.9%). Con- Significant differences between CHWs working in coun- versely, CHWs from low inequality countries were more tries with low LGBTI inequality (hereafter ‘low inequal- often peer CHWs (63.0%) than those from high inequality ity countries’) and CHWs working in countries with high countries (47.4%). Overall, 10.4% were not trained for their LGBTI inequality (hereafter ‘high inequality countries’) present CHW role, with no significant difference between were observed. CHWs from high inequality countries were CHWs from low and high inequality countries. younger (25.7% aged 18–30 vs. 19.5%), more often women Amongst respondents who were not self-employed (36.5% vs. 25.6%), and reported less often living comfort- (n = 975), the main reported sources of funding of their ably or very comfortably on their present income (36.1% organisation were grants from national government or local vs. 46.8%), or being in good or very good health (76.3% authority (79.9%), charitable or private donation (61.5%), vs. 85.6%), compared to CHWs from low inequality coun- fundraising activities (48.2%), European funding (23.2%), tries. These latter identified more often as gay/homosexual and fees from services provided (e.g. training, 22%). Grants (60.6% vs. 49.8%) and reported more often being out to from national governments or local authorities were more more than half, all or almost all their relatives and friends commonly reported by respondents from low inequality (95.0% vs. 83.5%) compared to CHWs from high inequal- countries (87.9%) than by those from high inequality coun- ity countries. tries (53.4%), while the latter reported more often that their As shown in Table 2, the majority of CHWs who partici- organisation received European funding (41.7%) compared pated in ECHOES reported being paid for this CHW role to respondents from low inequality countries (17.6%). Table 2  CHW-related Working in Working Total P-value characteristics of ECHOES low LGBTI in high (n = 1035) respondents (n = 1035) inequality LGBTI ­countriesa inequality (n = 786) ­countriesb (n = 249) % n % n % n Employment status as CHW 0.023 Paid 71.1 556 63.5 158 69.3 714 Volunteer 28.9 226 36.5 91 30.7 317 Peer role < 0.001 Peer 63.0 495 47.4 118 59.2 613 Non peer 37.0 291 52.6 131 40.8 422 Training received for the present role of CHW 0.887 No 10.3 80 10.7 26 10.4 106 Yes 89.7 694 89.3 218 89.6 912 Organisation worked for 0.340 Private not-for-profit organisation 87.3 652 83.5 187 86.4 839 Government or other public organisation 9.8 73 12.9 29 10.5 102 Other 2.9 22 3.6 8 3.1 30 Grants from national government or local authorities 87.9 653 53.4 119 79.9 772 < 0.001 Charitable or private donations 63.4 471 55.2 123 61.5 594 0.027 Fundraising activities 49.7 369 43.5 97 48.2 466 0.106 European funding 17.6 131 41.7 93 23.2 224 < 0.001 Fees from services provided 24.6 183 13.5 30 22.0 213 < 0.001 CHW Community Health Worker a Roughly corresponding to Western Europe countries (see Fig. 2) b Roughly corresponding to Eastern Europe countries (seeFig. 2) c Amongst respondents who were not self-employed (n = 975), multiple answers 13 Journal of Community Health Respondents varied in the way they described their CHW health worker’ (5.3%), but the majority of respondents job title; 365 different labels were used after translation into (56.0%) provided a label shared by just 1% or less of the English and minor corrections for harmonisation (see meth- overall sample. ‘Community Health Worker’ was used by ods section). The most frequently reported job titles were only 2.5% of the overall sample. When searching for key- ‘volunteer’ (6.7%), ‘outreach worker’ (5.7%) and ‘sexual words within the labels used, ‘health’ (35.5%), and ‘sex’ (15.7%) were the most frequent ones in respondents’ job title descriptions (Table 3). The most common keywords to Table 3  Keywords most Total describe respondents’ CHW job titles could be grouped into reported by ECHOES 2 categories: (i) the area or domain of action, for instance respondents to describe their (n = 1035) ‘health’, ‘sex’, ‘community’, ‘prevention’, ‘testing’, and/or job title as CHWs (n = 1035; multiple entries) % n (ii) the status or function occupied, for instance ‘volunteer’, ‘counsellor’, ‘educator’, ‘nurse’. Health*a 35.5 367 Sex*b 15.7 163 CHW Activities Regarding the Continuum of Services Community 10.0 103 for HIV, Viral Hepatitis, and Other STIs Amongst Outreach 9.6 99 MSM Volunteer 9.5 98 Social 8.2 85 CHWs were involved in many activities that can be directly Counsellor 7.9 82 related to the different steps of the continuum of services Educator 6.5 67 adapted from WHO [22]. Primary prevention is, by far, Peer 4.7 49 the most common domain of activity (88.6%), but all other Consultant 4.5 47 steps are undertaken by around half of respondents (Fig. 3). Prevention 4.4 46 Overall, more than one in four respondents (27.1%) reported Advisor 4.0 41 involvement in all the steps of the continuum of services Psych*c 3.0 31 presented here, and almost three in five (58.5%) reported Nurse 2.1 22 involvement in 3 or more different steps. Test*d 1.4 14 Details of activities related to the continuum of care as *Root used to search for a fam- well as cross-cutting activities are presented in Table 4. ily of words Engagement in primary prevention activities was reported a Including: health, healthcare more often by respondents from low inequality countries b Including: sex, sexologist, sex- (89.9% vs. 84.3%), while respondents from high inequality ual, chemsex (n = 1) c countries reported more often being engaged in activities Including: psychiatrist (n = 1), related to consultation and counselling (65.5% vs. 55.6%). psychological, psychologist, psychology (n = 1), psychoso- No other differences were observed between CHWs from cial, psychotherapist low inequality countries and those from high inequality d Including: test, tester, testing countries. Fig. 3  CHW activities targeting men who have sex with men according to the continuum of services for HIV, viral hepatitis, and other STIs (n = 1035) 13 Journal of Community Health Table 4  ECHOES respondents’ main activities (n = 1035) Working in low Working in high Total p-value LGBTI inequality LGBTI inequality ­countriesa ­countriesb (n = 786) (n = 249) (n = 1035) % n % n % n Primary prevention 89.9 707 84.3 210 88.6 917 0.015 Information ­provisionc 97.6 690 95.7 201 97.2 891 0.149 Interventionsc 62.8 444 57.6 121 61.6 565 0.175 Consultation and counselling 55.6 437 65.5 163 58.0 600 0.006 Testing provision 50.4 396 51.4 128 50.6 524 0.778 Referral and linkage to care 51.1 402 45.4 113 49.8 515 0.113 Treatment and support activities 52.2 410 48.6 121 51.3 531 0.326 Information ­provisiond 95.9 393 95.0 115 95.7 508 0.700 Interventionsd 53.9 221 58.7 71 55.0 292 0.354 Cross-cutting activities 47.8 376 41.4 103 46.3 479 0.074 Developing interventions, outreach and support ­activitiese 93.9 353 89.3 92 92.9 445 0.110 Monitoring, evaluation and reporting of organisation’s ­activitiese 91.2 343 93.2 96 91.6 439 0.520 Advocacy and ­networkinge 90.7 341 89.3 92 90.4 433 0.676 Engage with research and or community needs a­ ssessmentse 88.8 334 92.2 95 89.6 429 0.317 Marketing, advertising and media ­activitiese 81.6 307 78.6 81 81.0 388 0.490 Staff ­developmente 74.5 280 77.7 80 75.2 360 0.505 Managemente 71.8 270 78.6 81 73.3 351 0.165 Fundraisinge 61.7 232 63.1 65 62.0 297 0.795 a Roughly corresponding to Western Europe countries (see method section) b Roughly corresponding to Eastern Europe countries, (see method section) c Amongst those reporting engagement in primary prevention activities d Amongst those reporting engagement in treatment and support activities e Amongst those reporting engagement in cross-cutting activities Amongst respondents involved in primary prevention, of the continuum of services, were reported by almost half 97.2% reported providing information and 61.6% engaged of the sample (46.3%). Amongst these, ‘Developing inter- in prevention interventions (Table 4). ‘Vaccinations and pre- ventions, outreach and support activities’ (92.9%), ‘Moni- ventative medication (e.g. PrEP)’ (88.9%) and ‘Chemsex’ toring, evaluation and reporting of organisation’s activities’ (80.2%) were amongst the main reported topics in terms (91.6%),‘Advocacy and networking’ (90.4%), ‘Engage with of information provision, while ‘Support using or access- research and or community needs assessments’ (89.6%), ing Pre-Exposure Prophylaxis’ (78.7%) and ‘Substance use and ‘Marketing, advertising and media activities’ (81.0%) support’ (51.5%) were amongst the main reported areas of were the most reported cross-cutting activities. No differ- interventions, in those engaging in prevention activities (data ences were observed between CHWs from low inequality not shown in table). and CHWs from high inequality countries for these activi- Amongst respondents involved in treatment and support ties (Table 4). activities, 95.7% reported providing information, and 55.0% engaged in interventions related to treatment (Table 4). ‘Mental health support related to treatment’ (61.8%) is one Discussion of the main topics reported in terms of information provi- sion, while ‘Adherence’ (84.3%) and ‘Accompanying users ECHOES is the first ever multi-country survey targeting to get treatment’ (65.4%) were amongst the main reported CHWs who provide sexual health support to MSM in non- areas of interventions amongst CHWs engaging in treatment clinical settings in Europe. The results of ECHOES afford and support activities (data not shown in table). a first description of this heterogeneous and previously Cross-cutting activities, namely strategic and administra- understudied population, including the way they identify tive activities that cannot be specifically linked to one step 13 Journal of Community Health themselves, and the range and depth of the activities they most HIV/AIDS NGOs in Eastern Europe emerged in the are involved in. post-socialism era of the 1990′s, when the ability for such One of the most important findings of ECHOES is to organisations to officially form was just recognised [30]. show the involvement of CHWs in all steps of the contin- Most CHWs are in good or very good health, and have uum of services for HIV, viral hepatitis, and other STIs for good mental well-being. However, one in four CHWs may MSM in non-clinical settings. Primary prevention is by far suffer from depressive symptoms, and CHWs from high ine- the most common activity, but around half of the overall quality countries are less often in good or very good health sample engages in each of the other steps of the continuum compared to those from low inequality countries. Special of services. In that sense, CHWs providing sexual health attention to self-care is warranted from CHWs’ organisa- support to MSM in non-clinical settings are particularly tions in order to prevent possible risk of burnout [31], or well placed to contribute effectively to UNAIDS 90–90–90 compassion fatigue [32], and maintain the quality of service targets [13], or more specifically to reach the 10–10–10, provision. addressing simultaneously individual, social, and structural CHWs usually do not use the term ‘community health barriers [27]. However, an investment should be made to worker’, preferring a wide range of nomenclature to describe address funding issues that threaten the sustainability of their job title, as shown in the European scoping review car- CHWs activities. CHWs mostly work in private not-for- ried out before ECHOES [21]. However, ECHOES and the profit organisations that are funded by national governments Training Programme for CHWs (see methods) have opened or local authorities, donations, fundraising activities, and up the discussion around the concept of CHWs among peo- European funding. These funds are usually project-based ple working or volunteering with MSM. ECHOES promo- or susceptible to revisions depending on the economic and tion activities and the piloting of the Training Programme political context at national or international level. made people think about their own contribution as a CHW Beyond their involvement in all steps of the continuum providing sexual health support to MSM in Europe, and of services for HIV, viral hepatitis, and other STIs, around promoted a feeling of being part of a broader, international half of CHWs also engage in cross-cutting activities such workforce performing similar tasks and with a common aim, as monitoring and evaluation, advocacy, participation in despite the diversity of their roles, jobs titles, backgrounds research, and community needs assessments. These activi- and cultures. ties may be less visible and valued from the public health ECHOES findings should be generalised with caution perspective since they do not impact directly on the main since the overall sample size is small given the countries’ steps of the continuum of services, but are crucial to main- population sizes (though the true size of the CHW popula- tain CHWs’ activities (secure funding), and to address MSM tion providing sexual health support to MSM is unknown), needs and the structural barriers MSM face in accessing and the sample is also unequally distributed. To overcome sexual health services. Participation of CHWs in research or this limitation, respondents were grouped according to the activity monitoring is also essential, both so that researchers level of the legal index of LGBTI inequality of their coun- may better understand the epidemics and the affected popu- try (ILGA-Europe’s Rainbow Index). This allowed for com- lations, and so that the corresponding populations have the parisons that took differences in levels of inequality towards ability to address emerging needs as soon as they come up, MSM in different national contexts into account. In addition, and have valid data to advocate for change [28]. as this grouping was fairly congruent with the East/West Overall, almost one in three CHWs contributes as a vol- division of the WHO European region [22], findings can also unteer, and although mostly coming from the community be interpreted in light of the different cultures and history of they serve (peer CHWs), as reported in the wider litera- these two sub-regions. ture [2, 3], a significant proportion of CHWs are women, Another limitation is the non-inclusion of CHWs working which is important to bear in mind for future studies among exclusively in clinical settings. This was a methodological CHWs, but also for organisations looking for CHWs. Female choice in order to focus on support and services delivered and volunteer CHWs are generally more common in high outside of standard clinical settings. However, many CHWs inequality countries, while paid and peer CHWs are more already work in clinical settings, and clinical staff seem common in low inequality countries, which suggests that more and more interested in collaborating with CHWs [33]. the socio-political environment limits the willingness and/or CHWs working or volunteering in clinical settings should ability of MSM to perform CHWs roles and engage as peer thus be included in the next iteration of ECHOES, in order, CHWs in Eastern Europe. This may also reflect an East/West for instance, to highlight differences and similarities between difference in the emergence and development of HIV/AIDS those two groups of CHWs. NGOs. While the first HIV/AIDS NGOs in Western coun- In conclusion, ECHOES findings emphasise, for the first tries were based on activism, often pre-existent to the HIV time in Europe and neighbouring countries, the diversity epidemic, and involving primarily LGBTI people [7, 29], of profiles and activities of CHWs providing sexual health 13 Journal of Community Health support to MSM, their contribution to all steps of the contin- 4. Mason, T., Wilkinson, G. W., Nannini, A., Martin, C. M., Fox, uum of services, and their capacity to address MSM’s needs D. J., & Hirsch, G. (2011). Winning policy change to promote community health workers: Lessons from Massachusetts in the as soon as they emerge. A European community of CHWs health reform era. American Journal of Public Health, 101(12), has come into being, but the real potential of this workforce 2211–2216. https​://doi.org/10.2105/AJPH.2011.30040​2. is still undervalued [14]. CHWs should be acknowledged as 5. WHO. (2010). 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Acknowledgements The authors want to thank all people who partici- Can community health workers improve adherence to highly pated in the survey, and those who helped with translation and promo- active antiretroviral therapy in the USA? A review of the lit- tion at the national level. The authors acknowledge the contribution of erature. HIV Medicine, 12(9), 525–534. https​://doi.org/10.111 the participants of the Expert Workshop (from NGOs, academia, public 1/j.1468-1293.2011.00921​.x. institutes) held in Berlin in April 2018 where preliminary results were 9. Sando, D., Geldsetzer, P., Magesa, L., et al. (2014). Evalua- presented, as well as all the members of the ESTICOM project con- tion of a community health worker intervention and the World sortium, the advisory board, and all those involved in peer reviewing, Health Organization’s Option B versus Option A to improve translating, and otherwise contributing to ECHOES. antenatal care and PMTCT outcomes in Dar es Salaam, Tanza- nia: Study protocol for a cluster-randomized controlled health Author Contributions NS and JH led the survey conception and ques- systems implementation trial. Trials, 15(1), 359. https​://doi. tionnaire design, and OP and MK led the survey promotion. Data man- org/10.1186/1745-6215-15-359. agement and analysis were performed by NL, CF and SA. The first 10. Kerrigan, D., Mbwambo, J., Likindikoki, S., et al. (2019). Project draft of the manuscript was written by NL and all authors commented Shikamana: Community empowerment-based combination HIV on previous versions of the manuscript. 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Affiliations Nicolas Lorente1,2,11 · Nigel Sherriff3 · Oksana Panochenko4 · Ulrich Marcus5 · Maria Dutarte6,7 · Matthias Kuske8 · Susanna Aussó1,2 · Jörg Huber3 · Michael Krone4 · Susanne Barbara Schink5 · Caoimhe Cawley5 · Jordi Casabona1,2,9,10 · Cinta Folch1,2,9 Nigel Sherriff Jörg Huber N.S.Sherriff@brighton.ac.uk J.Huber@brighton.ac.uk Oksana Panochenko Michael Krone Oksana.Panochenko@aidsactioneurope.org Michael.Krone@aidsactioneurope.org Ulrich Marcus Susanne Barbara Schink MarcusU@rki.de SchinkS@rki.de Maria Dutarte Caoimhe Cawley dutarte@hotmail.com caoimhecawley@gmail.com Matthias Kuske Jordi Casabona matthias.kuske@dah.aidshilfe.de jcasabona@iconcologia.net Susanna Aussó Cinta Folch susanna.ausso@gmail.com cfolch@iconcologia.net 13 Journal of Community Health 1 7 Centre Estudis Epidemiològics Sobre Les Infeccions European Patients’ Forum (EPF), 1040 Brussels, Belgium de Transmissió Sexual I Sida de Catalunya 8 Deutsche Aidshilfe, 10963 Berlin, Germany (CEEISCAT), Agència de Salut Pública de Catalunya, 9 08916 Badalona (Barcelona), Spain CIBER Epidemiologia y Salud Pública (CIBERESP), 2 28029 Madrid, Spain Institut Investigació Germans Trias I Pujol (IGTP), 10 08916 Badalona (Barcelona), Spain Departament de Pediatria, Obstetrícia i Ginecologia i de 3 Medicina Preventiva, Universitat Autònoma de Barcelona, School of Health Sciences, and Centre for Transforming 08916 Badalona (Barcelona), Spain Sexuality & Gender, University of Brighton, 11 Brighton BN1 9PH, UK Centre D’Estudis Epidemiològics Sobre Les ITS I Sida de 4 Catalunya (CEEISCAT), Fundació Institut D’Investigació en AIDS Action Europe (AAE), 10963 Berlin, Germany Ciències de La Salut Germans Trias I Pujol (IGTP), Edifici 5 Robert Koch Institute, 13353 Berlin, Germany Muntanya, Carretera de Can Ruti, Camí de les Escoles s/n, 6 08916 Badalona, Barcelona, Spain European AIDS Treatment Group (EATG), 1000 Brussels, Belgium 13