Between Rhetoric and Reality: Real-world Barriers to Uptake and Early Engagement in Digital Mental Health Interventions

3.2.1 Support Models.

SilverCloud can be delivered unsupported in self-guided mode, but it is most often delivered with human support in the form of weekly written or telephone feedback [46]. Supporters are usually early career stage clinicians, but trained volunteers have also demonstrated effectiveness at providing this non-judgmental encouragement and feedback [137]. Supporters and support models vary by service and support usually lasts for 6–8 weeks, after which clients have one year to continue using the platform alone.

3.2.2 Referral and Signup Flow.

Clients access the SilverCloud platform either via clinician referral (where a link to sign up is sent by email) or through the self-referral website. The self-referral website provides an overview of how the intervention works, explains the programs on offer and allows clients to self-select to sign up. Clients choose a program (e.g., Space from Depression, Space from Anxiety, Space from Stress) either on the self-referral website before they click to sign up, or during the signup flow. The signup flow differs between services, but usually involves clients clicking a link to sign up, entering their email address as a username, creating a password and clicking that they understand and agree to the privacy notices. The next screen presents a series of personal goals that the client can select from (e.g., Feel calmer, Be more active), followed by one or more sets of standardized measures (e.g., Patient Health Questionnaire-9 or PHQ-9) associated with the particular program the client selected. These again differ based on service and support type, and are used to track progress, monitor and escalate risk and assess intervention effectiveness across the service. Finally, the client is shown three illustrations that represent a mental model of the platform (program, tools, supporter) and is prompted to start the first module of their program immediately, to help them get the benefits of the program as soon as possible (see Appendix A.3 for screenshots of the SilverCloud self-referral website and signup process).

3.3.1 Service 1: UK Health Service.

The Berkshire Healthcare Foundation Trust is an NHS Improving Access to Psychological Therapies (IAPT) service, covering a population of 900,000. The IAPT program is a stepped care approach to treating people experiencing anxiety and depression, as recommended by NICE [115]. Step 2 interventions are offered to those experiencing mild or moderate symptoms and include low-intensity CBT-based interventions such as guided self-help, SilverCloud and group therapy, whereas step 3 services, for those with more severe symptoms, involve high-intensity FTF CBT and counselling interventions. Clients are monitored throughout their treatment with weekly clinical measures (e.g., PHQ-9 for depression) and stepped up or down accordingly. All clients offered SilverCloud are provided with support from trained psychological wellbeing practitioners.

3.3.2 Service 2: UK Not-for-profit.

The remit of the Ben charity (Motor and Allied Trades Benevolent Fund) is to support the health and wellbeing of those working in the automotive industry in the UK, and their families. Ben provides a number of support avenues including life coaching, financial advice and assistance, mental health assessments, FTF therapy and SilverCloud, as well as industry training (e.g., mental health first aid). The Ben service is most often accessed by clients via their employers, who provide access to Ben resources as part of Employee Assistance Programs. Support on SilverCloud is provided by Ben counsellors in an opt-in manner, whereby clients can self-select support at any stage of their journey.

3.3.3 Service 3: UK University.

Nottingham Trent University is one of the largest higher education institutions in the UK, with over 40,000 students and staff spanning five university sites. The university's wellbeing teams include Student Support Advisers, who offer general advice and signposting, the Counselling Service, which offers phone, video and FTF counselling and email support, and Pastoral support from chaplains. SilverCloud is provided without support (as self-help) to students and employees of the university, along with other recommended resources under a “wellbeing toolkit” offering.

3.3.4 Service 4: US University.

Colorado State University is a public research university with approximately 40,000 students and staff across three campuses. The university's Health Network provides an extensive range of mental health resources including group therapy, workshops, substance use screening and support, FTF counselling, and psychiatry services. SilverCloud is offered to students with support from the counselling team or as self-help, and only as self-help to staff of the university.

3.9.1 Primary Researcher Position Statement.

I am a white, Irish, middle class, cisgender woman in my mid-thirties. I have an educational background in fine art and psychology, and experience working in many diverse creative roles. I have been working for the digital mental health company SilverCloud since 2017, first as a research assistant, then writing program content, and now doing a PhD while embedded in the UX team. In my role as a research assistant, I conducted diagnostic interviews for a large-scale clinical trial with the NHS, and analyzed qualitative data collected as part of this trial [70]. I have always been drawn to qualitative methods because I recognize and value the complexity of humans, and the fundamental subjectivity of all research undertaken by humans [89, 125, 173].

In terms of my own help-seeking for mental health, I have previously been to and for the duration of the data analysis process attended regular FTF psychotherapy sessions, with positive experiences on both occasions. I recognize the considerable privilege I hold in this regard, as private support of this kind was not an option for many of our participants. I have not used digital programs as a client, but I have an intimate understanding of their practical use from over three years of volunteering with the Irish charity Aware as an online supporter, helping adults experiencing distress to work through SilverCloud. In this sense I am not an inside researcher; I have extensive knowledge of SilverCloud and how it functions. Where I do consider myself, an inside researcher is in my preference for in-person interactions over digital. I would not be interested in using a digital intervention for my mental health, because I am generally reluctant to spend time using technology. In keeping with the reflexive TA method, I used my subjectivity as an analytic resource and kept a reflexive journal throughout the interview and data analysis process, to remain cognizant and questioning of how my beliefs were shaping this work (see Appendix A.6 for selected excerpts from this journal). I also used conversations with colleagues, friends, and my therapist as reflexive opportunities to untangle the fluctuating position I held in relation to this topic and my evolving relationship with the data.

3.9.2 The Analytic Process.

The interviews were transcribed by an external transcription company and I checked the recordings against the transcripts, updating the text where discrepancies were found. I also made field notes during each interview, which I typed up immediately afterwards. Phase 1 of the TA process involves familiarization with the data [22]. I printed the transcripts (with field notes attached), randomised their order and read through each one in detail, making notes in pencil on the transcripts and notes for each case in a TA notebook. I then consolidated these notes into a familiarization mind map (see Appendix A.7).

Coding (Phase 2) began by hand using the printed transcripts. Working with hardcopies allowed for freedom and flexibility in terms of working environment, and for a physiological, tactile experience of coding. Coded text was highlighted in the transcript and tagged with a number, which linked to a code label written down in my TA notebook. I used three different colours to highlight the text, two for the main research questions (barriers and reasons for seeking help) and the third for miscellaneous codes which were of interest. After eight transcripts were coded in this way there were 219 codes and checking back and forth in my TA notebook for existing codes became unwieldy, so I typed up all the codes into a Microsoft Word document and organised them under headings, to make finding codes easier. I was conscious of the danger in this premature grouping of codes as it segregated the ideas into topics, but I was confident that I could amalgamate the codes again in subsequent rounds of coding. This new code list was printed and used for the rest of the first round of coding, with new codes being written in by hand (see Appendix A.8 for image of first round coding process). The handwritten codes were typed up into the Word document at the end of this round; there were 362 codes at this stage. Between the first and second rounds of coding I took a three week break from the analysis.

The second round of coding was performed using QSR International's NVivo 12 software, because I am familiar with it from previous work and find it useful as a means of organizing and working with large numbers of codes. The transcripts were ordered differently to the first round of coding (see Appendix A.9 for ordering based on the coding round). The paper transcripts were used to check the first-round codes, the corresponding code was then searched for using the digital Word document and the transcript was coded in Nvivo. Codes were placed into two sections reflecting the two main research questions. Adjustments were made to the coding throughout this process; codes were combined if similar, split if they covered more than one meaning, left out if they were not relevant enough to the research questions, and new codes were created. The third round of coding was brief and involved double checking over transcripts to make sure nothing was missed. At the end of the third round, there were 173 codes. The final stage in the coding process involved systematically examining each code and its associated quotes, making sure the code label captured the essence of the meaning contained within the group of quotes, and removing or moving quotes that did not fit. The final list of codes came to 142. During this time (and throughout the theming process) I was attending regular TA discussion groups with other researchers, where we talked about methodological issues, we were having with our various TA analyses. These sessions were vital to the development of my understanding of TA and provided a much-needed outlet for what can often be an overwhelming process.

The generation of initial themes (Phase 3) began with a printed list of the codes, again to allow for creativity and a tangible connection to the data. Each code was cut out on a separate small piece of paper (see Appendix A.10 for image of candidate theme creation). Candidate themes were ideated upon in a creative process of playing with the codes and moving them about to create different groupings. In developing and reviewing the themes (Phase 4), I drew thematic maps to work through the layers of meaning within potential themes, to draw connections between them and to process questions I had. For the most part, the more semantic/descriptive themes persisted through the different theming rounds, whereas the more latent/interpretive themes took longer to work through and changed more drastically as the theming developed. It was around this time that I began engaging with socially situated mental health literature [4, 20, 25, 39, 67, 83, 133, 138, 142], because the data and the meaning I was making of it did not fit with a medical framing of distress. Once I felt comfortable with a cohesive list and map of themes, I began Phase 5, which involved refining, defining and naming themes. I wrote up theme definition paragraphs and spent some time adjusting the theme names to make sure they reflected the particular meaning and direction of each theme. It was only upon writing up the results section and choosing quotes for each theme (Phase 6) that I realized the boundaries between my themes were somewhat blurred, I had been trying to cover too much with each theme. To address this, I returned to Phase 5 and wrote up a one sentence tagline for each theme, which succinctly highlighted the main focus and thus brought clarity and defined the edges of the themes. The themes were further refined in consultation with the other authors.

4.3.1 Theme 1: Humans Need Humans.

A fundamental part of what many participants in this study desired, in terms of therapeutic care, was human connection. This was either because human interaction was perceived as a crucial component of the therapeutic healing process, or simply because participants wanted an antidote to feeling alone. The importance of feeling heard and understood by another human was reported widely across the data, and many participants felt that this was not something that could be translated to the digital realm. As participant 7 here describes, it is the relational quality of human-to-human contact that is key,

“I think if you're talking to a person, you feel more interacted, I guess…maybe you feel more of a connection, you really feel like someone's listening. Obviously, you can tell when someone, you're talking face to face with someone you can tell if they're listening, if they're interested in what you're saying. Through a computer I guess you don't get that.” (P7, male, not-for-profit, SUNU).

The positive, healing relationship between therapist and client is a large component of the effectiveness of FTF therapies [85], and clearly something that participants in this study felt was missing from the DMHI. There were, in fact, a small number of participants who expressed that using a computer to improve their mental health further enhanced their feelings of seclusion and disconnection, even in services where human support was provided as part of the DMHI. One aspect of this preference for human interaction over digital was a desire to offload and externalize pent up worries or thoughts, “I sort of feel like I need to actually talk to someone and maybe just vent about it or to have someone to listen to me” (P8, female, university, SUNU). For this participant, who was struggling with multiple interacting forms of distress, it was being able to express her complex concerns that mattered most. The role of the other person in this interaction, therefore, was simply to facilitate a space for expression. As participant 12 notes,

“I think having someone to hear you, to be heard, to actually listen to your problem, is, is quite important to influence changes not only thinking, reflecting on your behaviour but to influence any changes in mental health.” (P12, female, health service, SUNU).

The reflective power opened up by being listened to was, for this participant, a core mechanism expected to bring about cognitive and behavioural change. Therapy has informally been termed the “talking cure”, and this name underpins common perceptions and expectations of the therapeutic process [118]. The relational function of talking was mentioned by participants as a key therapeutic process that was integral to change. For example, participant 10 here describes the art of conversation as an externalisation whereby thoughts are taken out of the inner realm of the mind and made concrete,

“having an actual conversation with somebody, it felt a bit more real and you know, like I had to maybe think about it for more than two seconds, trying to articulate what I needed to say, rather than having it in front of me you know, choosing which option” (P10, female, health service, SUNU).

The inherent difficulty in verbalising thoughts (“had to think about it”, “trying to articulate”) was recognised by this participant as a positive and integral aspect of processing distressing cognitions. The alternative, working through content digitally and alone, was seen as easier but markedly less effective for this individual. Aside from the beliefs participants held about the therapeutic value of conversing with another human, the need for human connection also resonated through the data as a solution to the common circumstance of social isolation and loneliness. There were different reasons across the data for this isolation, from recent emigration, “I move to the UK very recently like six- five months ago. So, I feel like I'm alien and I don't see people much” (P16, female, health service, SUU), to the working conditions that have become mainstream as a result of the COVID-19 pandemic,

“I actually work at home but I've got a log cabin at the bottom of the garden so I'm completely detached from even the family in the house. So, I don't- unless I choose to, I don't get a lot of interaction with other people” (P1, male, not-for-profit, NSU).

For some participants, however, there was no precipitating event that brought about their loneliness, they simply did not have any close friends or family members. A small number reported that they didn't have a single person in their life who they felt they could talk to about their mental health. Even when participants did have support networks, people were sometimes seen as too busy to be supportive,

“people say you know they'll check-in on someone and whatever else. But people don't, people are wrapped up in whatever they have going on. They're not bad people for it, it's just life and I think everyone gets wrapped up in their day and they just forget” (P13, female, not-for-profit, SUU).

Participant 13 had been through a recent bereavement and noted that the support she received immediately following her loss waned consistently over time. The social cue of loss triggers supportive instincts in those around us [94], but when it comes to distress that is not linked to an overt external event, or continues long after an event, these supportive social cues are less obvious. From a sociopolitical perspective, theorists have noted that modern capitalist economic and social systems tend to isolate us and consume our attention, obscuring our capacity to recognise and care for each other [100]. This participant wanted to be reached out to, rather than proactively asking for help, because of the stigma associated with not being able to cope alone (discussed further in the next theme). A number of participants noted that apprehension about burdening others with their problems prevented them from opening up or seeking help. There is evidently a complicated relationship between interpersonal bonds and mental health, as conversely participants noted that the influence of other people contributed to them seeking help. For some this came in the form of a recommendation from a trusted person or the testimonial recommendations on the self-referral website as the main influences that lead them to use the DMHI. For participant 19, his girlfriend played a key role not only in his decision to reach out for help, but also in his recognition of the need for help in the first place. He notes here the difficulty that people might experience if they don't have this same level of support,

“But a lot of people I suppose wouldn't be in that position where they want to address that issue themselves. So, it might take someone else to then, but if they haven't got anyone then it's a bit of an awkward situation for them I suppose.” (P19, male, health service, SUU).

Overall, we can see that human connection appears to be a crucial component of the need for help, yet the interpersonal weight of mental health makes attaining this support difficult, as we shall see in the following theme.

4.3.2 Theme 2: Needing Help Means I'm Weak or I've Failed.

Many participants in the study revealed that they felt ashamed of their mental distress and feared the judgement of others, feelings which had previously prevented them from seeking help or even talking about their mental health. This emotional response was sometimes rooted in experiences of public stigma, such as that which participant 8 encountered,

“I've been in therapy before and even when people don't mean to be rude or show that there is a stigma around it, I've had people say like, “Oh, yeah, I could never, like I'm not that crazy” or something like that, which is shocking.” (P8, female, university, SUNU).

This type of negative social assessment can lead to shame and the internalisation of public attitudes as self-stigma [34]. Even nowadays, when public stigma and discrimination have become far less socially acceptable (participant 8 was shocked by this overt display of stigma), self-stigma persists. Stigma was mentioned by participants from a variety of diverse backgrounds and across each of the included services, yet it appeared to be slightly more prevalent among participants from the not-for-profit service, and some of the male participants noted that they believed mental health stigma was worse for men than women. In addition, a small number of participants described how their culture impacted their feelings towards seeking help. Participant 5, who was from Zimbabwe, described mental health as not being part of her culture at all, but this is perhaps a reflection of how distress and suffering can be conceptualised and expressed differently across cultures [25],

“when people think mental health, they start thinking, okay there's some sort of witchcraft involved in it, or you're crazy basically… people tend to not want to talk about it because they are afraid of what other people might think like, okay, if I say that I'm feeling depressed right now, people will just be like, “ah you're just trying to get attention, you're not depressed”. So, you tend to just keep it in.” (P5, female, university, NSU).

When participant 5 moved to the UK, she was inundated with mental health and wellbeing information; she explained that it was a relief to admit to herself that she might need help, and to have these resources available to her. Other participants communicated recognition of the general decline of mental health stigma in recent years, the increase in public debate around the subject, and the widespread availability of information and self-care resources. Yet there was a sense that underneath this surface-level awareness, we are still a long way from living in a society that fully grasps the many reasons how and why distress affects us and what can be done to prevent or alleviate it. As participant 18 notes,

“there is still a disconnect between the rhetoric and the reality. So, you know, we talk a good game in society around [mental health] and its importance. I think there's a bit of a lag in terms of the actions or the real understanding of it” (P18, male, not-for-profit, SUU).

The hidden, stigmatised emotional beliefs surrounding mental health could be a key factor in the perpetuation of self-stigma, as many participants in this study described how scared they had been to admit that they had a problem and needed help. To cross behavioural help-seeking barriers, people must first cross the more significant psychological barrier between being what they perceived as “healthy” and what they perceive as “someone in need of help” [35, 36]. Deciding what constitutes “bad enough” to cross this barrier is a delicate balancing act, where comparisons are constantly made against other people,

“I guess, also, this thought of, oh, I'm not doing that bad, to actually go to someone. We think sometimes that oh there are a lot of people that are doing worse than me so, I'm not going to waste their time, like the therapists’ time.” (P8, female, university, SUNU).

Other participants, along with participant 8, held the perception that a person needs to be at a certain, socially mediated, level of severity in terms of distress to seek and receive help. Identifying the boundaries of this level can be problematic because it requires not only social comparisons between the self and others, but introspective evaluations between current experience and previous states [152]. Participant 6 was so unsure about the validity of her own distress, that she believed she might have been imagining it, “sometimes I almost convince myself that I've made up any issue I've got in my head” (P6, female, university, SUNU). Many participants in this study declared that they did not know whether they needed help or not, or what was normal vs. “help-worthy” in terms of emotional distress, a finding that is consistent with previous qualitative research [18].

Looking more closely at the social aspect of crossing this needing help barrier, some participants remarked that they felt pressure to cope with the difficult emotions they were experiencing, which usually involved keeping them in or not expressing them. Participant 13 describes how she remembers her mother coping with bereavement, “I don't know how she coped, but I don't ever remember her crying, I don't ever remember her falling apart and I shouldn't. I should be able to do what she did.” (P13, female, not-for-profit, SUU). Sadness, along with other dysphoric states and emotions such as anxiety and anger, hold the position in many cultures around the world of being unwanted, and therefore broadly classified as unhealthy [94]. Expressing these emotions, for participant 13, was equated with “falling apart” and seen as the opposite of coping. Coping therefore is an ideal state, something that one should be able to do. The term healthism has been used to refer to the common but harmful assumption that individuals have sole responsibility over their own health, and therefore upholding one's status of good health (e.g., through coping) is a moralized duty [37]. Coping as a moral, socially promoted act becomes complicated when we observe the opinions of those towards people who do cope by concealing their distress, as participant 1 describes,

“I know I've got a friend who has always been very sort of happy, very sort of outward and we found out a few months ago that actually, he'd been suffering from depression, which none of our circle of friends actually knew. But I know that some of the other people I heard talking about it seemed to say ‘well you know, why would he suffer from depression, he's always happy’.” (P1, male, not-for-profit, NSU).

A paradox exists here whereby neither expressing your distress (“falling apart”) nor concealing it (people think you are lying or making it up) are socially tolerated. The dominant social norm or assumption, therefore, is that you shouldn't be experiencing these emotions in the first place, to do so means there is something wrong with you (you have an illness), or you're either imagining it or you failed to look after yourself adequately (it is your fault) [138]. This has been termed the “mad or bad, brain or blame” dichotomy, and it is deeply enmeshed with the medical model of distress [73]. Rather than situating distress in the context of external stressors, medical framings can individualize suffering and enhance self-stigma [73, 132, 133, 146]. In order to seek help, people must face their own internal beliefs about what it means for them to need this help, a finding that was seen widely across the data in this study.

4.3.3 Theme 3.1: Getting the Right Help is Confusing: What is “Help”?.

In addition to uncertainty around when to seek help, many participants in the study also communicated that they were unsure what type of help they needed, and in a more practical sense what getting help entailed. In terms of awareness of mental health support, participants stated that their understanding came from either direct personal experience, specialised education (e.g., studying psychology or working in the health sector), or television programs, movies and talking to friends and family. The pervasiveness of the medical model means that many people assume the healing process in relation to distress is akin to physical health, for example, a small number of participants mentioned being “fixed” or “cured” of their distress. Participant 13 was worried about her not-for-profit service telling her they couldn't help when she sought out the DMHI,

“if they say they can't help me, then I'm really going to have to go to the doctor's, it's just someone else telling me that. But actually, if they turn around and say, “I can help” then I'm not “not fixable”. I know that sounds stupid” (P13, female, not-for-profit, SUU).

Participant 13 was conscious that her worry about being “not fixable” was perhaps a social faux pas, as were others in the study. These participants believed there was something inappropriate about suggesting that emotional distress can be cured, but for want of an alternative, they were unsure how else to think about it. In line with this confusion about the goals or outcomes of therapy, disconcertion was experienced around whether the DMHI was the right fit for certain individuals and their specific circumstances. For these participants, it appeared that their satisfaction with any solution presented to them, no matter how simple, depended primarily on its suitability, as participant 4 explains,

“I want to be sure that someone who's qualified can listen and then say, ‘okay, yes, you know that's just everyone goes through this from time to time, it's fine’. Or you know, ‘okay I think you should try this program’ or even just you know, even if they said you know, ‘do some breathing exercises’.” (P4, male, health service, NSU).

The most important aspect of getting help for this participant was having a trusted professional hear his story, assess whether he needed help and if he did, guide him towards the right course of action. Several other participants also mentioned wanting advice from qualified experts, or specifically to be triaged, noting that this aspect of getting help was missing from the DMHI self-referral process they experienced. This could be a factor impacting the higher DMHI engagement rates seen amongst those clients referred by a doctor or other professional [11, 76]. DMHIs accessed via self-referral, perhaps because of this lack of triage that can be discouraging for some, are consequently not seen as “help” in the same way that more traditional forms are. Participant 1 held the opinion that his interest in the DMHI was something different to the more meaningful act of seeking help, “I mean I'm not actually sort of seeking physical help myself but certainly I've used a multitude of different Apps over the years for different things” (P1, male, not-for-profit, NSU). Thus, in using or investigating a DMHI, one can remain comfortably on the healthy side of the needing help barrier. As participant 9 explains, the digital route to help allows for a less overwhelming experience of seeking support,

“I'd rather not go and cry to my doctor and tell them that I need help, I'd rather go on the computer… I think that's what's nice as well actually about this online thing because it's not so much of a big deal, is it? Just turn your computer on and doing it that way, it's not quite as difficult to get yourself to do it.” (P9, female, not-for-profit, SUNU).

This positioning of DMHIs “on the fence”, so to speak, between help and not help, could contribute to the notion that they are a good first step, an easy route into the daunting world of help, as was mentioned by a number of participants. Participant 17 had a traumatic past experience with distress, so the idea of “going back there”, signified by seeking “treatment”, was a frightening prospect for her,

“everything to do with mental health is negative to me because I don't want it, I don't like it. And I needed to turn it into a positive, that's something you don't really need but it's to help you so, that's how I've seen it.” (P17, female, health service, SUU).

This participant was unsure about signing up for the DMHI because of these fears, but the ambiguity of the DMHI meant that she was able to reframe it as something she “didn't really need”, which allowed her to circumvent the barrier of admitting she needed help. Seeing the DMHI as a coping strategy or preventative measure is precisely why she went on to engage with it, but other participants had different reactions to this aspect of the DMHI. Participant 12 also saw the DMHI as preventative, but for her this was a problem because she was seeking a more reactive solution, “It is good for someone with stable mental health, not for people who are looking [for help]” (P12, female, health service, SUNU). Other participants also believed that digital solutions were not as effective or as serious as FTF therapies, precisely because they were not perceived as real help,

“if I'm at the stage where I'm like sitting in the shower like properly sobbing because I don't know what, what the hell is happening with my life, I can't- like sitting on a computer just clicking on boxes is not what I- it's not going to help me at that point.” (P10, female, health service, SUNU).

Participant 10 desired immediate relief from her overwhelming experience of distress, which she did not find with the digital solution presented to her. She mentions getting to a point where she needed something more than the DMHI could provide, an area that we will discuss further in theme 4. Crossing the needing help barrier was not a concern for this participant, but for those who do experience this stigma, DMHIs appear to hold a unique position in terms of being able to help without being considered real help. Underpinning this is a deep uncertainty about what it means to get help for mental distress, a confusion that we found was exacerbated by the lack of knowledge and understanding of digital solutions more broadly.

4.3.4 Theme 3.2: Getting the Right Help is Confusing: What the Hell are DMHIs?.

One of the most prevalent codes across the entire dataset involved participants not being sure what the DMHI was. Most participants had not heard of or used a digital solution previously, and therefore had little frame of reference to go on, “I didn't have any expectations because I never used anything like that before” (P3, female, university, NSU). Even when participants had prior experience with the platform (e.g., one participant was a nurse who had previously recommended it to her patients) there were still many layers of uncertainties and unanswered questions. Participant 1 remarked that “until you sign up you can't really see the sort of increased detail as to what exactly it is” (P1, male, not-for-profit, NSU), which points to a lack of practical explanation of the intervention on the self-referral website and in other materials provided to clients in anticipation of sign up. Many other participants also declared that there was not enough information given in these preliminary materials (e.g., service websites, outreach emails, and wellbeing resource landing pages) or that the information provided oversold the intervention, leading to unrealistically high expectations which were not met, and therefore left participants feeling disappointed. Recent HCI research has called for greater transparency and honesty in client-facing marketing of mental health technologies [162], because implying that psychological change is easy cultivates expectations that are unattainable [157]. In line with this, a major request from participants was for more information to be provided before clients are expected to enter their details and commit to signing up for the DMHI. Participant 14 was enthusiastic about the digital option but had doubts about it due to previous negative experiences with FTF CBT, as she explains,

“I just wanted to see I guess what it was actually offering, go into more depth about it… I like structure so it would have been nice to have like- I don't know, like a course detail thing of like what it all goes through.” (P14, female, health service, SUU).

For those participants who did decide to sign up, as in participant 14’s case, the desire for more guidance and information continued into experiences of the platform itself. A number of participants professed that they didn't know how to use the platform, this confusion often stemming from not understanding the fundamental nature of how interventions like this operate. For example, participant 15 expected someone to contact her to initiate the start of her journey with the DMHI, an expectation possibly based on traditional forms of therapy, which are interactional rather than self-directed,

“I didn't actually know how to start the program, if that makes sense? Because I kind of sort of logged in, did the things and then I was kind of waiting for somebody- Waiting for the, well, when do I start? How do I start it? So, I'd signed up for a few days and it was like, oh okay, so I've got to kind of go back in. So there was a slight gap.” (P15, female, health service, SUU).

The autonomous nature of DMHIs was not something that this participant fully comprehended before she signed up, so she was left waiting for direction. There was also uncertainty around the sign-up process, as some participants believed that the self-referral website was part of the intervention platform itself; without a mental model for the DMHI, it can also be difficult for people to grasp the systems and processes surrounding the DMHI. These unknowns left many participants feeling frustrated and lost. Participant 12’s exasperation was palpable,

“I didn't know did I, did I click on the right page? Where, or did I already sign up? What is it? There was nothing, nothing really to guide me, to explain what that Silver Cloud is, why clouds are silver. I was- I couldn't understand really what it is.” (P12, female, health service, SUNU).

This excerpt introduces another area that perplexed some participants, relating to the ecosystem of the intervention itself and the relationship between the participant's service and this external company “SilverCloud” who were delivering the intervention. Previous research found that endorsement by a trusted service and the presence of familiar logos indicated credibility when people were seeking mental health information online [126], and for many participants in our study this was found to be true, e.g., “I thought oh, I might as well give it a go because I saw that it was… done with the NHS so, I knew it would be reliable” (P19, male, health service, SUU). However, other participants found the presence of branding outside of their “trusted service” to be a point of ambiguity and concern. Participant 4 expressed distrust in private sector companies and queried the usefulness of the intervention considering what he perceived to be the potentially immoral values and goals of the corporation behind it,

“anything that's for-profit healthcare… has that implicit you know incentive for the company, assuming they are not that scrupulous, to you know, effectively try and keep their customers on board rather than providing them with help.” (P4, male, health service, NSU).

When faced with this dearth of knowledge about DMHIs, participants tended to forge expectations based on the closest comparable thing they had knowledge about, which was often wellbeing apps and other similar digital products they had used before, “my expectation was that an online tool would be similar to you know, other stuff out there” (P18, male, not-for-profit, SUU). For example, some participants expected to have to pay for the intervention, and that the payment structure might be like consumer facing apps (e.g., restricted access to content based on subscription level). In addition, because most of these apps are delivered as self-help, many participants did not expect human support from the DMHI; some participants from the supported services in the study didn't even realize there was a human support aspect. For the most part, attitudes towards other widely available mental health and wellbeing apps were negative; participant 9 dismissed the apps she had used previously as frivolous and unhelpful,

“I think the ones I'd seen were more just like, here's a daily mantra for you and write your dream and [laughs] I don't know, like weird things like that. Because I did actually download some of them ages ago and they were rubbish, I never used them” (P9, female, not-for-profit, SUNU).

Pre-determined negative attitudes towards the broad category of “wellbeing technologies”, means that DMHIs can become tarred with the same brush, as was found in this study. Many participants had low expectations for how useful the intervention was going to be, as did participant 8, who put off engagement with the DMHI because of this pessimism, “I feel like I'm delaying it just because I'm like, oh yeah it's not going to work” (P8, female, university, SUNU). Belief that DMHIs will not work is a common barrier to uptake and engagement found in the literature [15, 19, 103], but another explanation for these attitudes could be linked to the inherently standardised nature of digital solutions. For many participants, the usefulness of the DMHI was directly linked to its relevance to their personal situation and circumstances. Participant 6, who it should be noted was provided the DMHI without human support, questioned the effectiveness of a universally applicable digital intervention considering her specific circumstances and needs,

“How are they going to know exactly what I need help for if they're not asking me… I thought how can this really help, like it might be one of those things that they say is going to help and it might make you think it's going to help, like a bit placebo effect but it doesn't really help.” (P6, female, university, SUNU).

Not knowing how DMHIs function, what their underlying mechanisms are, or how they are tailored can lead to huge gaps in understanding, gaps which are often filled with inference. The notion of tailoring and personalisation of digital interventions will be explored in more detail in the following theme.

4.3.5 Theme 4: “One Size Fits all” Fits Few.

When asked what brought participants to the DMHI, they conveyed a range of different reasons for seeking help, involving one or a number of external stressors, such as recent bereavement, job loss, starting university, domestic violence, or moving country, “I'm an international student so I just wanted some aids to help me because it's a new environment” (P5, female, university, NSU). These stressors often precipitated help seeking, so understandably participants wanted to address these issues specifically with the help they sought. From a clinical standpoint, many of these issues would be classified as related to “adjustment disorder”, a diagnostic category that raises taxonomic dilemmas around the boundary between normality and pathology [164]. While the range of program options available through the DMHI was mentioned by several participants as an appealing aspect of this particular intervention, “it covers such a wide aspect, a wide range, a wide variety if you want, of issues that people can seek help with” (P7, male, not-for-profit, SUNU), many participants still felt that their particular problem was not covered or represented. There was an overall perception among most participants that a digital solution implies generic content, and that generic content is undesirable, as has been found in other recent HCI studies [8, 9]. Participant 12 found a disconnect between her subjective experience of her own distress and the nonspecific solution presented to her, “it's just I find it strange that we all have different problems and we all get treated with the same, the same generic videos” (P12, female, health service, SUNU). Frequently coupled with this aversion to a “one size fits all” approach was a preference for human interaction, due to its intrinsically personal nature. Participant 1 articulated the desire for a solution that could be adapted to him and his needs,

“I think where it would fall down is if I felt that it was too generic and therefore didn't suit me and therefore talking to someone in person is probably much more tuneable to personal circumstance.” (P1, male, not-for-profit, NSU).

Not understanding the role of the human supporter in the DMHI, or not knowing that there was a human support element at all, led many participants to underestimate the personalised nature of the intervention. However, even when people did understand the supporter role and were actively using the intervention with support, as in participant 16’s case, there was still a sense that the content of the DMHI was indistinguishable from the plethora of mental health information that is now widely available online,

“I've been reading I know these modules, they maybe they are helpful but it's still these things are, we can, we can find them outside like any other websites.” (P16, female, health service, SUU).

The global therapeutic and self-help industries have grown substantially in recent decades [138, 162], meaning that most people have been exposed to “self-help” style wellbeing advice in one form or another, often including techniques from the widely popularised CBT [115]. Some participants who had this existing knowledge and already used CBT techniques as part of their own self-care routine, found the provision of this advice through the DMHI to be simplistic and even patronising,

“Have you tried, I don't know, sitting down and having a cup of tea? Or just writing out your thoughts? And I'm like, yes, I have, I've thought about all that. I've done all of that. I keep a diary so I'm very mindful about how I'm feeling, when I'm feeling it… I almost felt it was a bit- I don't know if- I don't really know how to say it. Like I don't want to say like it was talking to a child, you know like explaining things.” (P10, female, health service, SUNU).

Being given these nonspecific recommendations was an extremely frustrating experience for participant 10, and it is clear that the DMHI was not an appropriate option for her at that time. For many participants in fact, the DMHI was simply not suitable. This was either because they were not comfortable using technology, “I'm just quite bad with technology, it takes me a while to figure it out…I'm just, I don't really know how to work it properly” (P8, female, university, SUNU), or they were experiencing types of distress for which CBT or the digital format was not suitable, “I guess the stuff I have kind of been struggling with it was- I didn't know that it was really going to provide the help that I felt I needed” (P2, male, university, NSU). That said, we can see from some of the engaged participants in the sample that the DMHI was an ideal solution for some, due to its adaptable, self-directed nature and relative convenience compared to FTF modalities. Even amongst the non-engaging participants, these beneficial attributes were regularly mentioned. For participant 13, a busy working mother with young children, the DMHI was a perfect fit,

“I can actually help myself rather than feeling like I've got to have a childminder, I've got to try and get somewhere, I've got to book an appointment, no one else is around at that time. So I don't think I had realised before actually looking into it that it was flexible enough that it helped us, but it's also not feeling like I've got to add an extra pressure into my day.” (P13, female, not-for-profit, SUU).

Choice and agency over support options surface here as essential mediating factors in client satisfaction. Giving clients transparent information and multiple options from which to choose can help them find a solution that meets their needs, and crucially, one that they are happy with. Some participants felt like they were pushed towards the DMHI because no other options were available to them, when their preference was to talk to a therapist, “I went again to the health centre and they didn't have enough staff, so they tried to direct me to the SilverCloud platform” (P3, female, university, NSU). Providing DMHIs as an alternative to FTF therapy can be problematic if people feel like they are being given something inferior and unsuitable for them, thus the framing of DMHIs is a key area for consideration. Human variability is so wide and complex that each different support option presented will inevitably suit a portion of the population, but no single option will suit everyone. Add to this the fluctuating nature of mental health and the different trajectories of distress that clients can experience, which we will explore in the next theme, and the picture becomes even more complex.

4.3.6 Theme 5: Accounting for Changing Needs.

Client needs or goals for mental health support can be conceptualised as immediate and hedonic (i.e., the reduction of pain and distress) or more eudemonic and related to long term wellbeing, the attainment of happiness and the prevention of future distress [45, 121, 162]. There is a complex relationship between these intersecting, fluctuating goals, which caused confusion for participants in terms of what they expected or wanted from the DMHI at different times. The connection between perceived need or level of distress and motivation was mentioned by several participants, for example, participant 6 noted that she tends to only work on her mental health when she is feeling low,

“I kind of go through like phases so, when I don't, when I'm not going through a phase of feeling low then I kind of stop looking for help. Which isn't good but that is part of the issue. So, I think I do need to just start doing it and force myself to keep doing it.” (P6, female, university, SUNU).

Participant 6 recognized the inherent issue with her mood-dependent help-seeking behaviour, but her instinct was to avoid the unpleasant prospect of working on her mental health when she was feeling well. She references “forcing” herself to work on the DMHI, while she would engage effortlessly when experiencing low mood. Alleviating distress feels good, whereas experiences of growth and meaning may not be as hedonically pleasant, and can in fact be subjectively uncomfortable [94, 153, 157]. A number of participants in this study referenced the challenging nature of working on their mental health and the difficulties they experienced in finding motivation, which has also been found in previous research [44, 70]. Under most health behaviour change models, including the HITAM, intentions are theorised as a core predictor of behaviour change [80]. Many participants in this study, who emphasised the importance of mental health and had signed up with intentions to use the DMHI, still found the motivation to use it varied and was hard to come by. This highlights the emotional, fluid nature of motivation, a factor which could underpin the intention-behaviour gap that has been found in relation to multiple areas including mental health [12, 88, 156].

For other clients, motivation was not an issue because their only goal was immediate distress relief. Participant 11 no longer felt the necessity to spend time and energy on her mental health because she was no longer experiencing distress, “I should give credit to my mental health but I'm just, just not giving any attention to it anymore because… I'm not in need of it.” (P11, female, university, SUNU). We cannot assume that clients seeking support want to build long term skills for future wellbeing or engage in sustained use of the technology. This potential conflict between the (fluctuating) goals of the client and the (usually static) goals of the intervention evokes debate on the power dynamics that exist between clients and the governments, employers, private corporations and institutions creating and delivering DMHIs [45, 96, 130]. The weight of responsibility is often directed towards individual clients to maintain their own wellbeing through self-care [37], yet some participants in this study indicated that there were too many competing demands on their time to find the space to work on the DMHI. Prioritizing use of the DMHI amidst work and childcare responsibilities was not an option for participant 9, “I kept thinking oh, I'll do it when I get to bed or you know, sit and have a bit of time and I just kept falling asleep and just not bothering” (P9, female, not-for-profit, SUNU), which speaks to the contextual nature of need and motivation, as influenced by external factors. In many instances, what is best for the wellbeing of the client is not to use the DMHI, particularly when this “self-care” work is perceived as burdensome. DMHIs do have the potential to provide more immediate support, due to their accessibility, however, for many participants the signup process itself was a barrier to attaining this momentary relief,

“unfortunately when your thoughts are racing and you're not feeling your best, the last thing you want to do is read and sit down and take things in. Because you don't take it in, you just want to go straight to it.” (P17, female, health service, SUU).

Participant 17 was experiencing heightened distress caused by the prospect of seeking help, which impeded her ability to process information and make decisions. Distress experienced while going through the signup process comes at a time when clients are often most in need of support. Several participants pointed out this gap in care provision between crisis services and preventative solutions, and there was a collective call for better “middle ground” support, i.e., immediate but not emergency care. Participant 14 gives a potential solution to this issue:

“maybe it would be good if you had like an option of like if you're feeling you know, hopeless and unmotivated like speak to the Crisis Team first. Like speaking to someone about it, just about your mental health in general would really help and then people who actually want help and are in the right mindset for help, SilverCloud would be really useful for.” (P14, female, health service, SUU).

This participant's idea involves options that depend on the client's attitude towards help, which is shaped by their culture and prevailing mental health narratives, e.g., healthism and the medical model [27, 37, 133]. Thus the “right mindset for help” is potentially one that assumes responsibility over and the ability to control distress. These narratives also determine how interventions are assessed and assigned, with diagnostic definitions and symptom measures being standard practice. For example, under NICE guidance, the stepped care model used by the health service in this study advocates that DMHIs are more suitable for those with mild to moderate “symptoms” [116], despite evidence suggesting those experiencing more severe symptoms still benefit [49, 77, 105]. In fact, as we saw above, fluctuating periods of severity could actually be motivational in terms of client engagement with DMHIs. What's more, clients who struggle to fit their unique experiences into these standardized symptom measures and rigid diagnostic categories could feel enhanced distress, as we found in this study,

“I will absolutely work myself up into a state where I can't get any work done for like one or two weeks at a time and then the problem will magically resolve itself and I'll be fine for like a month. So, it's not constant and if you do any of those questionnaires they're always like, ‘oh in the last two weeks you know, how many days roughly has this been affecting you?’ And it's like if I answer it honestly then there's never any kind of solution presented. It's always like, ‘oh you know, you've just- you're having a bad week, sod off, come back when you've got a problem’.” (P4, male, health service, NSU).

This participant was suffering from intermittent bouts of anxiety, that were extreme when he was experiencing them, but were not constant. The progression of distress experience over time involves multiple interacting trajectories, which are not accounted for in current diagnostic classification systems [20]. Mental health is hugely varied and contextual and thus needs multiple ways to be formulated and understood [73]. There was a sense from this data that the reality of mental health as a complex and subjective experience, with oscillating needs and shifting trajectories, was perceived by participants as not being adequately addressed by current care pathways and models.