Young people’s perceptions of smartphone-enabled self-testing and online care for sexually transmitted infections: qualitative interview study

Study design and population

Individual in-depth interviews were conducted with young people, recruited from an Inner-London Further Education (FE) college. In the UK, FE colleges provide post-compulsory education for those aged 16 and older, often vocational, and are distinct from Higher Education institutions – universities – which provide degree-level academic qualifications. People from lower socio-economic groups are over-represented among FE college students. Eligible students were aged 16–24 years, and self-reported having had sex at least once.

Sampling and recruitment

A purposive sampling strategy [35] was used, with gender and age-group as primary sampling criteria, and a target of 24–36 interviews. We used the age-groups 16–19 and 20–24 because experience with sex, and with sexual healthcare and healthcare in general, are likely to increase with increasing age. Furthermore these categories are similar to those used in national STI surveillance data. Following an email sent on behalf of the researchers to all students, and posters placed in the college, students were approached in college communal areas by the interviewer, or referred to him by staff. The interviewer explained to potential participants that the study would involve a face-to-face interview with him, which would last about an hour, to find out what they thought about a new way of testing for STIs. Further details of the study were provided orally and in information sheets.

Procedure

Interviews took place in private rooms at college sites. One male interviewer (SF) conducted and audio-recorded all interviews. The topic guide, described briefly here, had been piloted, and was used flexibly and revised iteratively between interviews. The interviewer began by asking about participants’ experience with smartphone technology, internet-use in relation to health, and STI testing. First impressions of ‘testing for STIs using your smartphone’ were explored. Then, participants were provided with a brief description of the proposed testing device and associated online care pathway, aided by an animation (Additional file 1) which outlined stages a user would potentially go through (operating the self-testing device with a sample of urine or vaginal swab, receiving their result, and if positive, an online consultation, ‘e-prescription’, partner notification and sexual health advice). The interviewer explained that the test was still being developed, but that the animation showed what it might be like. Few details were provided about the test and online care pathway, for simplicity, and because of uncertainties at this stage in intervention development. The interviewer explained that obtaining treatment this way would be safe for most people (but not what would happen otherwise). Scenarios were used to explore acceptability and preferences of various stages, from self-testing, through to receipt of treatment for those testing positive (Additional file 2). Participants were asked for their understanding of ‘confidentiality’. Interviews explored acceptability of providing personal details, sexual history, and medical information to verify treatment safety, using their smartphone. Participants were asked if they would use the service described and why (not). The interviewer, mindful of his somewhat older age, status as a university researcher, association with novel technology, and the implications of these for social desirability bias in the views participants might express, sought to lessen the social distance between himself and participants by mirroring participants’ language use, and emphasised that he was not developing the intervention and so would not be offended if they did not like or agree with some or all of the proposed format. The interviewer kept field-notes, recording circumstances of recruitment and impressions from interviews. Interviews lasted 29–75 min (mean: 53mins). Each participant received £15 in recognition of their time and contribution to the study.

Interviews focused on exploring novel aspects of the proposed intervention; aspects that are established as broadly acceptable or have become common practice (e.g. self-sampling [36], receipt of STI test results by text-message) were not explored. Details unknown at the time of the interviews were also not explored unless mentioned by interviewees (including: which infections the device would detect – described by the interviewer as chlamydia in the first instance ‘because it is an easier infection to treat’, specific clinical and disease surveillance information to be collected, cost, distribution, and whether the device would be for single or repeat use). These are being explored in ongoing research.

Analysis

A thematic analysis [37] was conducted by CA, using NVivo software and paper charts. For data familiarisation, transcripts were read repeatedly, alongside listening to recordings and reading field-notes. A mixed inductive-deductive approach was used: identification of themes was influenced by emergent and recurring issues in the data, and by a priori issues relating to study aims. Individuals’ accounts of their views and experiences with existing STI testing services, and with smartphones and the internet, were used to contextualise their views on the novel service. Analysis took place after data collection was complete, meaning that initial findings could not be explored in subsequent interviews.

SF and MS, who were familiar with the entire dataset, provided detailed feedback on CA’s draft analysis, for verification of findings. Participants’ comments were not sought on either the transcripts or study findings. This was impractical because of the end of the college’s academic year and study timelines. We also had concerns for participants’ privacy if we contacted them about the study, given the eligibility criteria and sensitive content of the interviews.

Participants

Participants’ accounts of their STI testing experience ranged from a single chlamydia screen, to repeated comprehensive testing in sexual health clinics. Use of STI testing in general practice and use of internet-ordered home-sampling for chlamydia were also reported. Two participants, both women, spontaneously mentioned that they had previously been diagnosed with an STI (however this question was not asked of all participants).

Perceptions of self-testing with online care pathways, in relation to barriers to use of existing sexual healthcare

Barriers to use of existing sexual healthcare discussed by participants were consistent with those identified in the literature (see Introduction). We focus on perceptions of how the proposed intervention might address barriers to testing using existing services.

Further perceptions about remote self-testing with online care

In this section we describe perceptions about remote self-testing with online care pathways, which informed an understanding of the proposed intervention’s acceptability, and its development.

Final word

Overall there was enthusiasm for this innovation: ‘Just get it done quicker, just get it out there fast. Cos it sounds good, so it should be out there’ (L, young man, 20–21 years old).

Implications for development of the proposed intervention

Main findings

A novel proposal for remote online self-testing and treatment for STIs was broadly acceptable to these ethnic-minority young people from a high-prevalence population. In deciding whether to use existing STI testing services, and considering self-testing, participants appeared to balance three main factors: speed, convenience and privacy. Remote self-testing was perceived to maintain privacy by reducing the risk of peers and family members discovering their use of sexual healthcare, through avoiding sexual health clinic attendance, and by avoiding potentially embarrassing face-to-face consultations. By reducing these privacy concerns, and facilitating access to testing, participants expressed that they might be more likely to test, or test more often, if remote self-testing were available.

New privacy concerns with this novel intervention concerned electronic evidence of sexual healthcare use or STI diagnosis visible on their phone, online data security, and postal provision of treatment. Participants described ways they could manage these risks, and how intervention design could assist with this, but some considered risks to online data security inevitable. Enthusiasm about the novel technology contrasted with some participants’ doubts about the accuracy of a novel, rapid, self-operated test, while accuracy of conventional testing was not questioned. Several participants’ discomfort with sexual health consultations contrasted with their anticipated needs if they received a positive result or had particular concerns: to seek personalised support from healthcare professionals. Credibility of remote self-testing and online care, including data security, was enhanced by its association with healthcare professionals and trusted NHS services.

Strengths and weaknesses of this study

Formative research is particularly important in the development of complex interventions [27], especially in e-health [28]. During development, qualitative research can contribute to an intervention’s success by informing an understanding of user-behaviour [29], particularly relevant for our intervention, which will be used remotely with minimal supervision. As well as informing an understanding of perceptions and acceptability of the proposed novel intervention, we made specific recommendations for its development (Table 2). Several of these were supported (and none were contradicted) by related formative research [31, 32]. However, as this study took place prior to the availability of the STI self-testing device and operational online care pathways, we relied on participants’ ability to understand and engage with the hypothetical, novel intervention. To make it less abstract we chose a study population among whom STI testing was likely to be familiar, and the interviewer showed an animation to help describe the planned intervention. We decided against restricting recruitment to people with previous STI testing experience or STI diagnosis, as we sought to include those who test infrequently or not at all, who may experience more barriers to testing via existing services. Despite the hypothetical topic, interviews gained rich, detailed accounts of perceptions of smartphone-enabled self-testing, and although only two had been treated for an STI, participants also engaged well with the concept of treatment via an ‘e-prescription’. However many interviewees found provision of treatment to partners difficult to engage with, perhaps because this topic was far from their personal experience and particularly abstract (requiring them to imagine a partner and a context in which STI transmission could have occurred, as well as imagining having been diagnosed with an STI following use of the novel self-test). For reasons of data quality we have not presented findings on this topic.

Engagement with target audiences is recognised as an important challenge to e-sexual health interventions [38], which may be aided by incorporating potential users’ views throughout development. The demographic profile of our participants is close to that of those considered at elevated risk of STI, based on their age, ethnicity and recruitment from an urban, deprived population [2]; thus a key target group for provision of STI services, for reasons of equity and public health need. However, men who have sex with men (MSM), another important risk group for STI, were not targeted for recruitment to the current study because in this educational setting, we did not wish to compromise the privacy of those not ‘out’ to their classmates. Recruitment of exclusively non-White participants (Table 1) was unintentional, largely reflecting the location and student population. (Some White students were approached, but declined participation, with reasons unknown.) The sampling quota for women aged 20–24 (6–8 participants) was not filled (n = 2), with implications for analysis and interpretation. Our findings suggest a gender difference in the importance of concealing use of sexual healthcare, but this may also be influenced by female participants’ young age profile, compared to male participants. This was the only clear difference between men and women’s expressed views in relation to the study topic (and there were no clear differences between age-groups), but had we achieved a stronger sample we might have been able to explore age-group and gender differences further.

In qualitative research, it is recognised that the interviewer and participants’ shared or different characteristics influence the data (as discussed in [39]). Data quality is not necessarily considered to be compromised by having a non-peer interviewer [40, 41] (e.g. a male interviewing females). In this study it is encouraging that although the same male interviewer conducted all of the interviews on this sensitive topic, interviewees of both genders discussed their views and experience of sexual healthcare use freely, and the two interviewees who disclosed their previous STI diagnoses (without prompting) were both female. We did not seek participants’ comments on the transcripts, which could have increased data quality, however all transcripts were checked against the audio-recordings. Those interviewed, who chose to participate in a study about sexual health, may be particularly comfortable with STI testing and/or sexual healthcare. However some had little experience of testing, and some discussed their dislike of existing services, so it is unclear what effect this may have had on the data. Non-participants’ privacy concerns may be greater than those discussed by participants, who chose to participate in an interview where they discussed sexual healthcare face-to-face.

As explained, we took steps to reduce social desirability bias, but our study’s premise that STIs are a problem, which can possibly be addressed through new services, was evident in information provided to participants. This may have prompted criticism of existing services. However, participants’ views on existing services reflected those identified in the literature [4–8], and all participants expressed both positive and negative views about aspects of the novel intervention, indicating critical engagement.

Comparison of our findings with the published literature

We know of no other research exploring the acceptability of remote self-testing linked with online care for STIs, as our proposed intervention is unique. However, our intervention does include some elements that have undergone limited evaluation in other studies. Qualitative research with US young women (conducted 2007–08) reported reservations about internet-use in relation to STI testing, including online privacy and data security concerns, and lack of personal support [23], which feature far less in findings reported in similar qualitative research among Canadian young people [25]. Our study echoed similar findings concerning desire for support from healthcare professionals following a positive diagnosis. Although privacy from peers and family was discussed as important by most participants (related to preferring to self-test instead of attending a sexual health clinic, and preferring discreet messaging) online privacy/confidentiality and security provoked fewer concerns. This possibly reflects our sample’s smartphone ownership, and the confidence in the NHS which they described.

Similarly to our findings, other online sexual health services (internet-ordered home-sampling [23]; downloadable laboratory forms for STI testing without face-to-face consultations [24, 25]) have been perceived positively for their convenience and privacy. US clinic-attenders’ views (focus-groups, 2008–09) on rapid home self-tests for STIs include concerns regarding accuracy and self-operation, and non-immediate treatment access [22]. A US survey on the acceptability of home-sampling among sexual minority youth found similar concerns about test accuracy and home self-sampling [42]. Our participants also expressed concerns around accuracy and self-operation, with linkage to treatment perceived positively.

Meaning and implications of our study

Our findings suggest that remote self-testing and online care pathways, as described here, would be acceptable as a complement to existing STI services, provided that personal support from healthcare professionals is available to those testing remotely, and accuracy concerns are addressed.

In addition to findings from this (and other) formative research, intervention design must also take account what is technically possible, clinical safety, and public health concerns (see Further Research, below). In the development of the proposed intervention, we need to consider that young people may desire to keep secret not only any STI diagnosis/es, but their sexual healthcare use. Regarding ‘evidence’ of sexual healthcare use on users’ smartphones, care needs to be taken regarding name of the sender and wording of text messages, while web-apps (which are not downloaded or installed to users’ phones) are an alternative to native apps, and NHS branding may confer trustworthiness. For speed and privacy from household members, collection of medication via ‘e-prescription’ from community pharmacies may be more suitable than postal treatment in this young population, depending, of course, on the STI and the nature of the recommended treatment.

Innovations in sexual health clinics, e.g. ‘no-talk’ testing with registration/clinical information provided on paper or electronic forms (e.g. touch-screens) [43–45], may already meet some of young people’s access and privacy needs. However our findings suggest that by removing the need to attend sexual health clinics (for many patients), our intervention may overcome further barriers to sexual healthcare use, resulting in earlier detection of STI. Provided users are able to use the care pathway to access treatment promptly, public health benefits would result from decreased STI transmission and decreased complications of long-term infection.

Unanswered questions and future research

Findings from our study, together with other formative research [31, 32], have informed intervention design. In terms of its accessibility, potential users’ health literacy and use of appropriate terminology are being considered in its development. Building on this programme of research, online care pathways for chlamydia treatment [32] were recently piloted for feasibility, acceptability and preliminary evidence of effectiveness, and qualitative research was conducted with people who used these online pathways, informed by the findings we present here. Development of the rapid testing device is ongoing.

Future research must continue to explore the acceptability and feasibility of remote self-testing for STIs and online clinical care pathways, among young people and other potential user-groups (such as MSM, other age-groups and ethnicities), and identify barriers and facilitators to implementation, including costs to users and to the health service. Further research could also explore how acceptability varies between different STIs and when testing for multiple infections. A recent exploratory pilot study about the feasibility, acceptability and safety of an online clinical care pathway for chlamydia was conducted, using mixed-methods (articles in preparation). Sampling limitations of the study reported in this article were addressed in this recent research, which will give us greater scope to explore the role of gender and other factors.