This article has Open Peer Review reports available.
Developing a mHealth intervention to promote uptake of HIV testing among African communities in the UK: a qualitative study
© The Author(s). 2016
Received: 26 November 2015
Accepted: 24 June 2016
Published: 28 July 2016
The Erratum to this article has been published in BMC Public Health 2016 16:948
HIV-related mHealth interventions have demonstrable efficacy in supporting treatment adherence, although the evidence base for promoting HIV testing is inconclusive. Progress is constrained by a limited understanding of processes used to develop interventions and weak theoretical underpinnings. This paper describes a research project that informed the development of a theory-based mHealth intervention to promote HIV testing amongst city-dwelling African communities in the UK.
A community-based participatory social marketing design was adopted. Six focus groups (48 participants in total) were undertaken and analysed using a thematic framework approach, guided by constructs from the Health Belief Model. Key themes were incorporated into a set of text messages, which were pre-tested and refined.
The focus groups identified a relatively low perception of HIV risk, especially amongst men, and a range of social and structural barriers to HIV testing. In terms of self-efficacy around HIV testing, respondents highlighted a need for communities and professionals to work together to build a context of trust through co-location in, and co-involvement of, local communities which would in turn enhance confidence in, and support for, HIV testing activities of health professionals. Findings suggested that messages should: avoid an exclusive focus on HIV, be tailored and personalised, come from a trusted source, allay fears and focus on support and health benefits.
HIV remains a stigmatized and de-prioritized issue within African migrant communities in the UK, posing barriers to HIV testing initiatives. A community-based participatory social marketing design can be successfully used to develop a culturally appropriate text messaging HIV intervention. Key challenges involved turning community research recommendations into brief text messages of only 160 characters. The intervention needs to be evaluated in a randomized control trial. Future research should explore the application of the processes and methodologies described in this paper within other communities.
KeywordsHIV testing mHealth Text messaging African Community-based participatory research Social marketing
Promoting uptake of HIV testing is recognized as a key priority in global HIV programming. In many countries, HIV prevention efforts are hindered by high levels of undiagnosed individuals and high levels of individuals diagnosed ‘late’ (defined as having a CD4 count of less than 350 cells per mm3 within 3 months of diagnosis and associated with significantly heightened levels of HIV-related morbidity and mortality) [1, 2]. The WHO and UNAIDS have endorsed a new global goal for 2020, specifically for 90 % of those with HIV to be diagnosed, 90 % of those diagnosed to receive ART and 90 % of those on ART to have a suppressed viral load. In order to achieve the first 90 % target around diagnosis, they have called for an expansion of existing HIV testing strategies, but also for the development and evaluation of new approaches, particularly community based approaches .
In the UK, as in much of Europe, African migrant communities are a priority population for HIV prevention efforts [4, 5]. Latest statistics estimate that 4.1 % of heterosexual black African men and 7.1 % of heterosexual black African women in the UK are HIV positive . Of these, 38 % of men and 31 % of women are unaware of their diagnosis, and this figure is estimated to be even higher outside London (50 % of men and 41 % of women) . These figures account for continuing high rates of late diagnosis within African communities. For example, in 2012 in the UK, 61 % of African women and 66 % of African men with HIV were diagnosed late . A recent survey has estimated the annual HIV testing rate amongst African migrants in the UK to be 36.8 % ; however this number rises to 97 % amongst pregnant women attending ante-natal clinics .
The UK Health Protection Agency (HPA) recently conducted a series of pilot projects to evaluate the feasibility of HIV testing in ‘non-traditional’ settings . These showed that the highest positivity rates were reported in the community based projects, leading the HPA to conclude that “community based pilots, targeting most at risk populations, were shown to be highly acceptable and resulted in high numbers of individuals being newly diagnosed with HIV infection and transferred into care. Community HIV testing services need to be appropriately targeted and established with strong community representation” [8:1]. They suggested that more evidence was required regarding the most effective combination of strategies that community organizations should adopt to encourage testing.
One potential strategy for enhancing the effectiveness of community based HIV testing programmes may lie in the use of new technologies, such as mobile phones . In practical terms, mHealth interventions can be inexpensive and wide-reaching in application, and have demonstrated potential for reaching large samples and accessing hard-to-reach groups [10–15]. Much of the existing evidence on mHealth and HIV has examined the role of short message service (SMS) interventions in supporting HIV care once a diagnosis has been made (rather than to promote testing), for example, providing appointment reminders [16, 17], enhancing treatment adherence [18–22] and promoting retention in care [23–26]. Overall, there are strong indications that SMS/text messaging interventions can be effective , but the evidence remains somewhat mixed, with some studies reporting significant increases in adherence [18, 20, 28] and others reporting no benefit [29–31]. There is still much to be learned about the structure, content, tone and frequency of messages and the mechanisms by which they influence outcomes [19, 32, 33].
The evidence base for mHealth HIV prevention research remains limited but is yielding exciting results [11, 15, 34–36]. Several pilot and demonstration projects have utilized text messaging interventions for HIV-related health promotion, predominantly combining information-giving with promotion of HIV testing [37–39]. Outcomes relating to knowledge, changes in risk assessment and testing behavior have usually been measured through proxy indicators (such as calls to help-lines or changes in uptake of HIV testing in local clinics) . However, two recent small scale randomized controlled trials in Kenya  and South Africa  have suggested that SMS interventions may have a direct impact on encouraging HIV testing behaviors.
To date, most research on SMS-based HIV prevention has been conducted in low and middle income countries [11, 15], with only a few studies reported from higher income contexts, primarily the USA [22, 39, 41]. Despite promising initiatives in other settings and with other populations, the efficacy of this approach amongst African migrant communities living in high-income countries has yet to be demonstrated. Furthermore, there is limited evidence documenting the message and intervention development process underpinning HIV-related mHealth interventions [42–46]. Indeed, lack of process-related evidence has been a common criticism of m-health interventions in general, threatening intervention transferability and hindering the development of more theoretically informed understandings of implementation processes.
Evidence on effective community-based programs suggests that the social marketing approach has been most effective in achieving positive outcomes, as well as recruitment and community engagement [47, 48]. Community-based social marketing requires that before the efficacy of an intervention can be established, development and feasibility work is required to ensure that the intervention meets the needs and expectations of users, and to ensure that the procedures associated with the intervention delivery and research processes (e.g. health or behavioral outcomes, methods of data collection) are appropriate [49, 50].
This paper describes the research and development processes used to identify the key HIV-related issues reported by African migrants in the UK and to inform the development of an SMS intervention entitled ‘Health4U’. First, it reports the research that was collaboratively undertaken to explore views within Nottingham’s African communities on HIV and HIV testing, on the proposed mHealth intervention and on appropriate message content, structure, language and frequency. Second, it demonstrates how these insights were used to collaboratively design and pilot a culturally appropriate, locally relevant and theory-informed SMS intervention. Quantitative outcomes are reported elsewhere .
The development of the intervention utilized a number of innovative processes, specifically the co-creation of the intervention and a theory-informed approach, implemented through a community-based participatory social marketing process.
The study was conducted in the city of Nottingham in the East Midlands region of the UK with a population of approximately 314,300. Nottingham is considered to have a ‘high’ HIV prevalence (2.78 per 1,000 population), higher than both the regional (East Midlands) and national (England) averages. Between 2010-2012, 65.8 % of new HIV diagnoses in the city were made late, much higher than the England average of 48.3 % . HIV testing is available free of charge through public sector (NHS) sexual health clinics in hospital, primary care and community settings. Some voluntary sector agencies have also been commissioned to undertake community-based work with specific target groups. The purchase of home testing kits has recently been made legal in the UK – this approach was being piloted nationally at the time of the study.
A recent report estimated an African migrant population in Nottingham of approximately 5,000, representing 31 different countries . This is a highly mobile population so exact population figures are difficult to calculate. African communities in Nottingham are represented by over 13 nationality-based community groups, faith-based groups and some pan-African community-based organizations. One of the latter is the African Institute for Social Development (AISD), with considerable experience in HIV prevention work.
The study adopted a social marketing approach using community based participatory research (CBPR) to design the messages and intervention structure . Unertl et al [45:1] defined CBPR as “a collaborative, action orientated research approach that involves the development of long term, equitable research partnerships between academic researchers, community based organisations (CBOs) and community members”. Community-based Social Marketing is “based upon research in the social sciences that demonstrates that behavior change is most effectively achieved through initiatives delivered at the community level which focus on removing barriers to an activity while simultaneously enhancing the activities benefits” [50:543]. The strength of this type of research is that all the partners involved in the process contribute to the project with their expertise, allowing the team to meet the specific needs of the community, in a culturally appropriate way [45, 55, 56]. CBPR, when authentically conducted, has been shown to yield significant benefits both for the research as well as the community to whom it is directed [45, 56]. These benefits have been defined as: more relevant research, wider impact, better fit between interventions and target beneficiaries, more effective recruitment and retention of diverse populations, possibility to access difficult-to-reach groups of people, improved internal validity, more rapid translation of research into action and development of people .
Consistent with community-based social marketing, our study sought to apply CBPR principles at every stage. From the outset, the project was undertaken as a partnership between the AISD and a university-based research team. AISD recruited a community research team to work on the project on a pro rata basis. The community team comprised 12 community researchers who were given in-depth training on research methods, mHealth initiatives and design principles, recruitment strategies, research ethics and HIV . The overall project team had expertise in design and delivery of SMS-based interventions [57–59], and collectively included expertise from health psychology, health communication, social marketing, community organizing and lived experience of HIV.
A common criticism of the existing literature reporting SMS-related health interventions has been that they lack a theoretical framework . To address this weakness, the study was informed by the ‘Health Belief Model’ (HBM) [61–63] which has been used to explain a variety of long- and short-term health behaviors, including sexual risk behaviors and the transmission of HIV/AIDS . The HBM was developed to explain why individuals at risk of contracting tuberculosis (TB) did not participate in free TB screenings , and continues to be used to explain why people get tested for a variety of diseases. It has commonly been used to explain HIV testing and HIV prevention behaviors [35, 43, 65, 66]. The HBM was used in this study to inform message design and to test outcomes. Specifically, the intervention was cognizant that individual’s perceived susceptibility to contracting HIV may be low, the perceived benefit of testing may be low, and the perceived severity of being tested as a migrant may be high [67, 68]. Furthermore, cues to action could be used to change these perceptions and to promote HIV testing. These elements were considered in the design of messages.
Research and message pre-testing: sampling and recruitment
Six FGs were held, and utilized purposive sampling to represent the social and religious characteristics within Nottingham’s African communities, as follows: Muslim men (MM), Muslim women (MW), Christian group (CG), Community leader group (CL), younger person’s group (under 30 years) (YP), mixed group (not an active Christian or Muslim, not a community leader, and over 30 years) (MG). The sampling strategy aimed to capture the views of the target population for the proposed intervention (i.e. the general African migrant community), rather than differentiating this population further, for example, on parameters related to previous HIV testing history. It was recognized that perceptions of HIV testing and personal risk could be shaped by previous testing outcomes and experiences. However it was felt that in order to facilitate open discussion about HIV in the groups, they needed to be relatively homogeneous and based around features of shared identity (such as gender, religion or age) rather than experience of HIV tests . We felt that the diversity within the focus groups would enable the findings to reflect a wide range of views and experiences in this area.
Recruitment for the FGs was undertaken by the trained community researchers via voluntary sector groups, local community venues (e.g. churches/mosques), nationality based community groups and via external contacts (e.g. library, hairdressers, advertising in local media). Individuals were provided with a flyer about the project and were invited to a FG at a pre-set time and date. Participants received a £20 (US$31) voucher for their time. Food and childcare were provided.
Recruitment for the pre–testing of messages followed the same process. Twelve individuals took part in the message pre-test (two from each group above).
The FGs were co-facilitated by a community and a university researcher. The discussions were recorded and transcribed. Most FGs lasted between 1-2 h. The ‘Muslim Women’s’ FG was undertaken in Arabic; the rest were conducted in English. The FGs were structured using a pre-set topic guide (see Additional file 1). Participants were also shown a video clip from an existing text-messaging intervention (Text4baby ) to provide them with a more concrete idea of what kind of intervention was being proposed.
The message pre-testing process followed an established elicitation interviewing method [57, 59]. During this process, individuals were asked to read each of the text messages and to answer a set of questions for each individual message and for the group of messages as a whole (see Additional file 1).
Data analysis, message development and pre-testing
FG data were analyzed thematically using a framework approach [71, 72]. Transcripts were coded in NVivo, and a set of initial descriptive themes was developed. Where possible, these were mapped against constructs from the HBM and then further refined . Analysis was undertaken by the university team and the emerging interpretations were discussed and agreed upon with the community research team .
Message development was based on: (i) an in-depth review of the FG findings (categorized thematically within the main HBM constructs), (ii) a review of messages used in previous and existing HIV testing interventions, and (iii) lessons drawn from the existing evidence base . Messages were developed as a team, using an iterative process of writing, review, pre-testing and further modification until a final version was agreed upon. The final set of messages was also reviewed by the clinical lead for HIV in the city and a large HIV-related voluntary agency. A similar team-based approach was used to translate the messages into Arabic and French, using a combination of conceptual translation [74, 75] and back translation approaches . Initial and back translations were carried out by independent translators. These were then reviewed together with members of the team (community researchers for whom French and Arabic were first languages, and academic researchers) who knew what ‘meaning’ the messages were attempting to convey, and who provided final cross-checking and suggestions for relevant modifications .
Thematic analysis framework
Health belief model construct
Perceived Susceptibility to HIV
• Community-defined risk
• Unfair targeting
Perceived Severity of HIV
• Awareness of HIV
• Fear of consequences
• Social stigma and taboo
Perceived Benefits for HIV Testing
• Staying healthy
• Receiving support
• Protecting others
Perceived Barriers for HIV Testing
• Lack of knowledge about testing issues
• Accessibility of services
• Culture of health seeking
• Complex lives
• Trust in health providers
• Trust and support of communities
Cues to Action
• Visibility and awareness raising
• Personalisation and targeting
Views on the Proposed SMS Intervention
• Perceived benefits and concerns
• Message content
• Intervention structure
Demographic characteristics of focus group participants
Countries of origin
6 Males, 3 Females
Algeria, Cameroon, Eritrea, Gambia, Ghana, Morocco, Nigeria, Rwanda, Swaziland Uganda
Algeria, Egypt, Eritrea, Morocco, Sudan, UK
Egypt, Ghana, Ivory Coast, Jamaica, Morocco
Gambia, Jamaica, Somalia, Sudan
Young Persons Group
2 Males, 4 Females
Eritrea, Kenya, Malawi, Nigeria, Uganda, Zimbabwe
Perceived susceptibility to HIV
Perceived susceptibility was discussed in relation to individual notions of risk, and risk associated with ‘place’ and community.
“You may know that there are some diseases out there and you may hear about them from the TV - but you never think that YOU might catch one of them…..I don’t know anyone suffering from AIDS” [MW, R3]
“It is scaring people in Africa, but here it is not common. I have never seen a HIV patient dying here. I don’t know anyone suffering from AIDS - I don’t think it’s a problem is it?” [CL, R3]
“In England, Nottingham, we don’t have as much of a problem with AIDS because…it is not designed for here, it is designed for out there, so it leaves here and go there and this is why a lot of us as Muslim it doesn’t all really affect us.” [MM, R5]
“It is difficult for pastors/priests to talk about AIDS when they as Christians obviously one of the teachings of the church is that you have to be faithful you know, so it could be really tricky when it comes to the church, sensitizing people, telling people about AIDS” (YP, R1)
“I would disagree with anybody who says ”we’re targeting Africans because HIV is an African thing”....... what about people from outside? They can get HIV and come to us?..........…I’m not sure if statistics can “prove” that Africans here suffer more from HIV compared to other continents.” [CL, R6]
“To be honest with you I don’t believe [the statistics on prevalence]. We are from Africa and we know the culture there, similar - every country similar - there is no big difference”. [MM R1]
Together, these themes highlight that perceived susceptibility to HIV was shaped by individual experiences and social identities constructed through association with community, religion and place.
Perceived severity of HIV
This category illustrates how perceived severity was influenced by fear of the consequences of HIV – expressed in terms of health consequences and social consequences.
“Most people think it is still a deadly illness. They are scared to get tested. There is that fear of knowing that I actually have it and you know that there is no cure, so you have that - ah I don’t want to know that I am going to die” (MG, R6)
This fear was attributed to a lack of up to date or sufficiently detailed information about contemporary developments in HIV care and prognosis, and also to past experiences of witnessing HIV disease in Africa.
“People might think ”if I get to find out that I have this illness the whole family will like leave me”, so I think it is, you know, the fear of the unknown really… This [HIV] is very sensitive, and I think sometimes people within their community are very embarrassed to talk about it or ask questions about it.” [YP, R1]
Hence, perceived severity was associated with deep-seated fears of the consequences of HIV, which creates challenges for HIV testing efforts and highlights a need for up to date knowledge and community action.
Perceived benefits of HIV testing
“If we made them aware, they might be able to go and check themselves to know that even with HIV, they can live longer by taking the correct tablets and through a normal diet and stuff like that so that is my view on that one. People think that it is still a deadly illness. Maybe it is not curable - but now it is manageable, so people need some information about it” [CL, R1]
“It would help to tell people what support or treatment they will get if they’re diagnosed with disease. Most people will tend to be scared, they think “oh if I have it, no one will want to come near me” sort of thing, so knowing what support they will get after, would be good.” [YP, R6]
“You can write “think about your kids” or “think about your future” in the message.” [MW, R1]
The themes in this category were closely related to the perceived severity category, which highlights how reported fears of the health and social consequences of HIV could be potentially re-framed.
Perceived barriers to HIV testing
The key themes within this category were the most extensively discussed within the FGs. They were related to a lack of knowledge around HIV, to being a migrant in a new country and healthcare system, and to different cultural norms.
“You know people think their health is fine; it is a kind of misconception… I think people are generally not aware of where these centers are; they do not know that the test is free so they worry about the cost.” [CL, R6]
“I think what stops me sometimes from going for a medical check-up, it is either work or other commitments and sometimes it takes too long to see a doctor…….sometimes 2 weeks……. it is a discouraging factor.” [YP, R1]
“It is all about making people understand that the test is going to be confidential - some people are actually scared of their confidentiality - they thought it might go. If confidentiality can be widely publicized you know within our communities… I think that would be a big, big, big headway” (CL, R5)
“They are worried about other issues you know immigration, work, family back home. You know they are worried about these things and maybe health is not a first priority for them.” [CL, R5]
“I don’t have that tendency to go to the hospital when I am not… you know when I am well, I don’t think I need to go to the hospital so…”[CG, R1]
“It is expensive to go to GPs in our countries; we might experience pain in early stage but we don’t have money. We will only go when more complications occur.” [MW, R7]
“African men like to be seen as strong and tough - going to the hospital means you are weak - it’s a mentality problem.” [MM, R3]
“Even if you are dying, you see yourself with added strength and especially with Christian mentality, you don’t want to say you’re sick even if you’re feeling sick.” [CG, R4]
A key factor influencing self-efficacy around testing concerned a lack of trust. This was expressed as lack of trust in healthcare providers and a lack of trust in being able to access a supportive community context.
“I think people are suspicious of the system, you know that even when you’re supposed to get screening and go for certain tests you don’t want to go because you don’t know what to expect, you know you’re not confident enough to trust anyone because they are not of your cultural group and it is frightening.” [CL, R2]
"People are scared [to get screened] because they know… for a long time black people are the first group to be likely to be lied to, be misdiagnosed, right? And mis-prescribed, wrong prescription so that is why they are very… they hold back when it is time to do those things." [CL, R4]
They put us in a pigeon hole as black women, and because we are in this kind if pigeon-hole, they want to get us through as black women – as many of us as possible - so they are seen to have done their work. But at the same time it is not about testing, it is not about me, it is about targets” [CG, R2]
“They don’t understand the culture, they don’t understand in some cases their religious beliefs yes. Some people go in hospital and the doctor is telling you, you have got 2 days to live, you know what I mean?...... I have seen where people from Africa, from our continent go to the GP’s sometimes there is difficulty with language you know that first contacts with their reception is I have never seen it really good, so one of the things to maybe improve that, is provide information in different languages”. [MG, R4]
“My mum’s GP, the husband worked in the country, so she has also been in my country - so the thing is she has been in that environment so she is so helpful when it comes to African....there should be sincerity” [CG, R5]
“What you can do is call an event, and at this event we can say OK many people will come; when they come those people who are leaders they would start themselves. They will say “look this is a necessity and we have to check ourselves and this is private and there is no shame”….have some good speakers and then others will feel “OK, now I will do it”……everyone would follow.” [MM, R1]
“I mean it is a kind of combination. You have got to get them to the health professionals. I agree with you that the community leaders have got a role to play and to pass on the message but also somebody professional (a doctor or nurse) needs to be there so people trust going for the test, trust the confidential system…because people can be embarrassed to talk about HIV so you need to bring professionals back to the community.” [MG, R4]
Cues to action
“I have never seen an HIV campaign in Nottingham - and I’ve been here for 10 years.” [CL, R6]
All groups suggested that TV, radio, leaflets, emails and posters should be used to raise awareness about HIV testing and to enhance up to date knowledge about HIV. Some groups also suggested that Facebook and Twitter could be used, since people access these daily.
“Well, I am rather grateful when they keep reminding me or calling me for anything…..I am very dependent on them, I was rather happy. Why not for HIV? [Referring to cervical cancer screening]…..when I received the first letter I didn’t care, but when they kept sending me letters I think for 4 or 5 times, I took it serious and then went there to do my check-up..” [CG, R3]
Views on the proposed SMS intervention
“I think it’s an easy excellent idea because the information will be stored in your mobile phone which is much easier than going to the GP or the hospital to get a leaflet. I think it is very good to have something like this to remind people where to go, where to access help in case they need it. I think it is quite important that we do that because most people around here haven’t got any time”. [MW, R2]
“It should be short because when it’s a long text, some people are lazy to read. Just keep it short. I want also to add that the message should focus only on the most important points and avoid too much detail. Also, you can add a link in the message for more information so that whoever wants to read more can click on that link”. [YP, R4].
“I think there might be a concern if I don’t know who the sender is. If I got a message from someone who I don’t know saying that I need to go to a certain place to do the test, I think I might feel uncomfortable and just ignore or even delete the message. I might worry about data protection. The message needs to be sent from a trusted sender”. [MG, R7]
“They ignore [other health campaigns] because they feel that they are separated from others. So, if the message is focused on a particular ethnicity or particular society, it will catch attention more. To speak to us personally, it is important to be in our native language.” [CG, R3]
“Straight to the point - reminding you like you need to go for you HIV test but it shouldn’t be a command, it should be kind of polite. Yes if you say [Name] or Dear [Name] or Hi [Name] we are so and so, reminding you or encouraging you to go to such and such facility for your HIV test, remember it is free and you can also get such incentives like and tell them what there is, support for everyone…” [MM R1]
“Will it be boring? I mean they might be interested for a few times and then they might try to stop you or ban you from texting maybe because they get bored…. Well this is my point, it is really quite a sensitive thing for example if you are bombarding somebody with just HIV every week or daily messages…..They might get paranoid. It would be good to have other information as well. Yes - I think the message content need to be diversified if you are going to send more than one for each individual. Don’t send the same message every time”. [YP, R3]
“I think it is fair enough to remind people about their… health problems but it should be done in a way that doesn’t scare people and people don’t feel targeted for example if it is just African communities receiving the messages and if you know your colleagues and neighbors they are not receiving, it is it not good so it should be done in an intelligent way”. [CL, R5]
A suggested solution was to include messages on a range of other health topics so as to avoid an exclusive HIV-related focus.
“I just think you know, with phones, you receive all sorts of things now, people get annoyed with people trying to fix your windows and stuff and calling you, it is getting these messages and then there will be another campaign about something else, not to do with HIV, it just needs to be because the marketing the way it is kind of… you know bombarding messages just like to get you people know it just gets fed up. I mean I agree with you for example if the African Institute you receive something from it, it would only be known organization, we know the leaders we know who is running it so you are already accepting.” [CL, R4]
Recommendations for Message Development
Recommendations from the focus group discussions
• come from a trusted source
• be in local languages
• be personalised
• be informative, encouraging and reassuring
• not scare people
• emphasise the benefits of knowing your HIV status
• emphasise that testing is free for everyone
• give information on where to get tested
• not only focus on HIV, as this might get repetitive and might become boring
• include information on other health issues
• No consensus on how often the messages should come, what time of day they should be received, or how long the intervention should last
• Messages should not be too frequent, should not ‘bombard’ participants
The section below shows how these key themes and suggestions were incorporated into the final intervention.
The FGs clearly demonstrated discomfort of African communities about being singled out for HIV interventions. Hence, the intervention was given a generic name ‘Health4U’, and it was decided that one text per week would be on HIV and one text per week would be on a general health issue. In line with the evidence base , this strategy was also designed to address the concern expressed in FGs about possible boredom associated with too much repetition in messages.
HIV and general health messages and associated health belief model construct
Hi xxxxxxxxxx! Welcome to Health4U! You’ll get text messages for 12 weeks. Thanks! African Institute H4U
HIV is a virus which attacks the body. You can have it but not have symptoms. Without treatment you may develop AIDS. Visit www.nhs.uk/conditions/HIV/
HIV: Information on virus
Stress is normal; why not try Nelson Mandela’s advice for dealing with life’s ups and downs? “Tread softly, breathe peacefully, laugh hysterically”
General Health: Stress
“Let food be your medicine and medicine be your food”. Why not try nuts, beans & whole grains as healthy snacks?
General Health: Diet
Did you know that 3.8 % of Africans living in Nottingham have HIV? Knowledge is power – respect your body, protect your community and get tested.
PSev, SE, CTA
5 (2nd option)
HIV can affect anyone. Latest statistics show HIV is rising in Muslim communities. Protect your community and get an HIV test.
A word of wisdom: “Wellness is a connection of paths: knowledge and action.” If you know you have a problem, don’t delay in seeking help.
General Health: Seek help
HIV testing & treatment is free, confidential & anonymous for everyone! Visit http://nottingham.ac.uk/health4u for convenient places and times to get tested
HIV: Info on where to get tested
If you have HIV, the earlier you know, the sooner you can get treated. Get tested. It's free whatever your immigration status is.
PBen, PBar, CTA
A person “who moves with each day is better than another who waits for luck”. Keep moving to keep fit! Anything helps: walking, dancing, even cleaning!
General Health: Exercise
A word of wisdom: “Be the change you want to see in the world”. Encourage the ones you love to stay healthy.
General Health: Stay healthy
Getting proper treatment soon after contracting HIV leads to a long and healthy life. Over half of Africans get diagnosed late – be on time & get a test!
HIV: Benefits of testing
PBen, PSev, CTA
“To keep the body in good health is a duty… otherwise we shall not be able to keep our mind strong and clear”. Eat well & exercise to keep calm and focused.
General Health: Stress
Did you know you can go online to order an HIV test that will be sent to your home? It’s free and private! Visit http://www.tht.org.uk/sexual-health
HIV: Postal kit
Lots of support is here for you if you have HIV. The NHS has a confidential HIV service & http://www.tht.org.uk has info on support groups in Nottingham.
Proverb: “One who eats alone cannot discuss the taste of the food with others”. A diet low in sugar, salt and fats will keep you and your loved ones healthy.
General Health: Diet
If u or ur partner had unsafe sex in the past, ur at risk of carrying HIV. Test early to protect u & people u care for. Visit www.nottingham.ac.uk/health4u
HIV: Protecting others, test info
African Proverb: “He who conceals his disease cannot expect to be cured”. If you are not feeling well, don’t hesitate to see a doctor.
General Health: Seek help
“It is health that is real wealth and not pieces of gold and silver”. Be active! Try to do at least 2½ hours of moderate physical activity each week.
General Health: Exercise
Feeling good? Make sure you stay healthy & well and get an HIV test. Not everyone with HIV gets symptoms but early treatment can keep you feeling fit.
HIV: Feeling good
SE, PSus, PSev, CTA
African proverb: “If you close your eyes to facts, you will learn through accidents”. Find out how to stay healthy & feeling well. Visit www.nhs.uk/change4life
General Health: Stay healthy
Look after yourself & your partner: Get tested together for HIV! People with HIV can still have great relationships. Visit http://StartsWithMe.org.uk
HIV: Protecting your partner, test info
SE, CTA, PBen
Many people in Nottingham have HIV and don't know it. Even if you feel well, it’s good to get tested at least once per year.
HIV: Invisible diagnosis
Proverb: “A friend is someone you share the path with”. Life can be stressful. Don’t be afraid to ask for help.
General Health: Stress/seek help
“Health is the greatest possession. Contentment is the greatest treasure. Confidence is the greatest friend.” It’s important to look after your health.
General Health: Stay healthy
Xxxxxxxxxx, thank you for taking part in Health4U! Health messages from us will now stop. Two more text messages will follow to ask your opinion on the project.
Have Health4U text messages inspired you to take action on health? Please reply YES if you have had an HIV test in the last 12 weeks & NO if not.
Did you get an HIV test?
Was Health4U USEFUL for you? Please HELP our research by completing a short questionnaire. Visit www.nottingham.ac.uk/health4u. Thanks! African Institute H4U
Link to post-intervention survey
Have Health4U text messages inspired you to take action on health? Please reply YES if you have had an HIV test in the last 12 weeks & NO if not.
Did you get an HIV test?
Was Health4U USEFUL for you? Please HELP our research by completing a short questionnaire. Visit www.nottingham.ac.uk/health4u. Thanks! African Institute H4U
Link to post-intervention survey
Members of the FGs suggested that individuals would be most receptive to personalized messages in their own language. This is consistent with previous findings using text-messages to address HIV treatment adherence . Messages were tailored to the 3 main spoken languages (English, French and Arabic) and religions (both asked of participants upon enrollment in the intervention). The “welcome” text message and the “end of the program” text message were personalized with the name indicated by participants.
The FGs showed no clear consensus regarding the best timing for the messages. Hence, the messages were delivered over the course of a week and delivered at different hours and times of the day in order to avoid habituation to message type (e.g. “it’s HIV message day/time”) and to facilitate action (e.g. messages related to diet habits were sent right before lunch).
The HIV-related messages were constructed within the framework of the HBM (Table 4). The key themes within each of the HBM categories were reviewed and explicitly addressed within the messages. As in previous studies, most messages incorporated more than one HBM construct .
The non-HIV related texts were deliberately designed to be upbeat and motivational, drawing upon African proverbs where relevant in order to maintain interest (Table 4). These were focused on topical health themes including physical activity, nutrition, stress management, depression and the importance of regular check-ups with a GP.
The pre-testing process generated suggestions on how to make the meaning of messages clearer. For example, it showed that statistics needed to be used in messages with caution, since a number of participants misinterpreted them. After pre-testing, the revised messages were reviewed again by the entire project team and then agreed upon.
The final SMS intervention comprised 2 messages per week for a 12-week period. One SMS per week was related to HIV and one was related to a general health issue. The messages were tailored on religion, language and gender, and were personalized. The final 2 texts prompted participants to provide research outcome data by clicking on a link provided through the SMS and completing a questionnaire.
The FGs represent a wide and heterogeneous sample of Nottingham’s African communities. While a range of views were expressed, the findings strongly suggest a need to provide up to date, visible information about HIV and HIV testing in a culturally appropriate, locally relevant and supportive manner. These findings corroborate evidence from a 2014 national survey among African communities in the UK, which showed that even after considerable national investment into an HIV prevention campaign targeted to African communities (‘It Starts with Me’), 66.1 % of the national sample (n = 1,011) had not seen any materials or messages, and a further 13.6 % had seen some, but not read them .
In keeping with the wider literature in this area, the FG findings showed an ambivalent perception of healthcare in the UK that was acting as a barrier to health seeking around HIV . Trust was identified as a key factor in facilitating any kind of response to messages around HIV . A prominent theme related to a lack of trust in healthcare professionals but also a lack of trust in being able to discuss HIV and receive support within one’s own community. The findings suggest that community outreach and community involvement is essential in order to create a more enabling environment for discussion and action in relation to HIV, but also in order to demonstrate cooperative working relationships with health professionals, and thereby enhance community trust in the ‘system’. These results on the role of community involvement are consistent with findings from previous studies . The prevailing context of mistrust and stigma surrounding HIV lends strong support to the mHealth intervention concept, by which individuals receive HIV-related information privately and are in control of who to discuss the texts with, and whether or not to take action.
The use of the HBM within the study enabled factors that influence HIV testing to be illuminated and explicitly addressed within the intervention. This was achieved by working closely with a trusted community organization, by providing relevant information, by providing reassurance about the quality of services offered and by not exclusively focusing on HIV.
Study limitations and challenges
The study design brought key benefits but also challenges to the project. While the CBPR approach ensured that highly sensitive issues were openly discussed within the FGs, recruitment to the FGs may have been biased towards the Community Researchers’ existing social networks. This may have resulted in more informed or opinionated individuals taking part. In addition, the FGs had more female than male participants. The reasons for this are unclear, however the community researcher team suggested that this might have been due to men being more concerned about HIV stigma.
The decision to adopt a broad based approach to recruitment rather than sampling on the basis of previous HIV testing experience may have prevented more nuanced insights around testing from emerging. Nonetheless, despite these possible limitations, the FG findings are consistent with existing research in this field [4, 81, 82].
The collaborative nature of the project was essential for meeting the expressed needs of the community, but was a time and resource intensive process requiring careful management, as each step needed to be debated and agreed by a large group of stakeholders. This is one of the main challenges faced by researchers when conducting CBPR [45, 83]; as such, additional time for such engagement needs to be factored into the design of feasibility and formative studies.
Working collaboratively with the African community ensured that the HIV testing messages were culturally appropriate and relevant. However, this process was made more complex by the requirement to limit each SMS to 160 characters, in 3 languages and personalizing them. The character limit placed constraints upon the extent to which messaging could be creative and drafted in ways that drew upon common culturally-specific proverbs or slogans. The community’s strong recommendation to have Arabic and French versions of the messages generated additional challenges in ensuring that the translations (English, French and Arabic) were as consistent as possible, while considering the character limits and variations in acceptable grammar and syntax of the 3 languages .
Finally, despite widespread use of the HBM to inform the design of interventions to increase health screening uptake, the model has known limitations, stemming from its low predictive capability . Future studies could be informed by recent theoretical approaches using validated taxonomies of behaviour change techniques (BCTs) to inform intervention design [85, 86].
This paper has described a multi-stage, theory-based intervention research and development process. The potential influence of this intervention on promoting uptake of HIV testing amongst African communities has been evaluated in a feasibility study and the results reported elsewhere . Definitive study outcomes need to be evaluated within the context of a randomized control trial. If shown to be effective, future research would need to be directed towards the application of the processes and methodologies described in this paper in other communities.
Finally, all those involved in the project reported personal growth and capacity development as a result of their engagement. Several community researchers reported that they had obtained new jobs or had embarked on new training programs, attributed in part to the skills and confidence they had gained from engagement in the research. Concurrently, the university team acquired a greater appreciation of, and respect for, community issues. This project successfully built a partnership that has been sustained and has led to the development of further collaborative research endeavors.
AISD, African Institute for Social Development; ART, Antiretroviral Therapy; BCT, Behavior Change Technique; CBO, Community Based Organization; CBPR, Community Based Participatory Research; CG, Christian Group; CL, Community Leaders; FG, Focus Group; GP, General Practitioner; HBM, Health Belief Model; HIV, Human Immunodeficiency Syndrome; HPA, Health Protection Agency; MG, Mixed Group; MM, Muslim Men; MW, Muslim Women; NHS, National Health Service; SMS, Short Message Service; TB, Tuberculosis; TV, Television; UK, United Kingdom; UNAIDS, United Nations Programme on HIV/AIDS; USA, United States of America; WHO, World Health Organization; YP, Young Persons
The authors would like to sincerely thank all the study participants. We also thank the AISD community research team (Adam Kiluvia, Allan Njanji, Celestine Babia, Charmaine Dickson Weller, Edward Vanderpuye, Françoise Muhorakeye, Laurent Tchouleng, Mariama Jaitehkabba, Marguerite Nzeyimana, Paula Daniel Pontes, Selbin Kabote); and the message translation team (Eman Ghallab, Natalie Rangelov).
This study was funded through Nottingham City Public Health Research Capability Funds. The latter had no role in study design, analysis or interpretation of findings.
Availability of data and materials
Data is held at the University of Nottingham. Please contact the corresponding author for further information.
CE, AJ & HB conceptualized the study. SS further refined the study concept and provided methodological and mhealth-related expertise at every stage. KT and AO assisted with message and instrument development, data collection and analysis. CE wrote the first draft of the manuscript. All authors critiqued the manuscript and contributed to further drafts. All authors read and approved the final manuscript.
The authors declare that they have no competing interests.
Consent for publication
Written informed consent was obtained from the participants for publication of this report. A copy of the written consent is available for review by the Editor of this journal.
Ethics approval and consent to participate
All phases of the study were approved by the University of Nottingham, Faculty of Medicine and Health Sciences, Ethics Committee, reference number: D09052013. Each participant gave written informed consent.
Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
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