“It Was a Nice Place to Be.”
A Phenomenological Exploration of Young People’s Experience of Moderated Online Social Therapy (MOST) For First-Episode Psychosis
Lee Valentine
Abstract
First-episode psychosis (FEP) is a serious mental health condition that can effect a person’s thoughts, perception, mood, and behaviour (American Psychiatric Association, 2013) and is often characterised by a “loss of contact with reality (Bosnjak Kuharic, Kekin, Hew, Rojnic Kuzman, & Puljak, 2019).” As it typically emerges in late adolescence and early adulthood (Alvarez-Jimenez et al., 2019), psychosis can significantly disrupt a young person’s confidence and interrupt their social, emotional, and vocational life trajectories (Alvarez-Jimenez et al., 2013; Bucci et al., 2018). While the introduction of early intervention services has improved the short term outcomes for people experiencing psychosis (Cotton et al., 2016; A. Malla et al., 2017), overtime, psychotic disorders are still associated with poor long-term outcomes in regard to education, housing, physical health, employment, social inclusion, and poverty (Alvarez-Jimenez et al., 2012; Cotton et al., 2017). Evidence suggests that long-term maintenance care is required to prevent relapse and to preserve the clinical and functional gains achieved during early intervention (Alvarez-Jimenez et al., 2021; A. Malla et al., 2017). Digital mental health intervention has been identified as one possible way to provide long-term maintenance support to young people with first-episode psychosis. The use of digital mental health interventions in the treatment, management, and support of first-episode psychosis is a burgeoning area of interest in the mental health field as it presents an opportunity to provide lower intensity treatment over an extended period of time (Alvarez-Jimenez et al., 2019; Bell & Alvarez-Jimenez, 2019; Gumley et al., 2020). However, while digital mental health interventions have been trialled in first-episode psychosis populations, there is limited research exploring young people’s experiences of using digital technology and engagement with such interventions have tended to vary substantially. A better understanding of the subjective experience of the user is valuable in and of itself and can be used to improve interventions and identify facilitators and barriers to use. Thus, the knowledge gained via an in-depth exploration of young people’s experience could be harnessed to increase engagement levels of digital mental health interventions for first-episode psychosis.
Aim: The primary aim of this thesis was to examine young people's experiences of the therapeutic and social network components of a long-term digital mental health intervention for first-episode psychosis. The secondary aim was to investigate young people's perspectives on the development of blended models of treatment for FEP. Two qualitative studies were conducted to achieve these aims.
Study One: Study One used an interpretative phenomenological analysis approach to explore young people's subjective experiences of a long-term digital mental health platform, Horyzons, for FEP, with a particular focus on the experience of online therapy and the social network components. Twelve in-depth phenomenological interviews were conductedwith young people who used the Horyzons platform to
varying degrees. The data was split meaningfully into two sub-studies during the analysis process due to the breadth of information collected. Sub-study one became an exploration of young people's experience of social connection on the Horyzons platform. We found that the social network nurtured a sense of connection among community members. The platform became an embodied experience that gave young people a sense of self-recognition and belonging. This research also identified
significant barriers to engagement, including social anxiety, paranoia, internalised stigma, lack of autonomy, and social protocol confusion. Sub-study two explored young people's experience of online therapy and found that the self-directed nature of the platform was beneficial and motivating to some and overwhelming for others. Moreover, the online therapy experience was idiosyncratic and took on different meanings for different young people. The online therapeutic content led to on-demand help-seeking, positive distraction, revision, generalisation and translation, and normalisation. On-demand help-seeking and positive distraction were identified as two ways in which online therapy was experienced differently from face-to-face therapy and spoke to the unique contribution that online therapy can make to a therapeutic intervention.
Study Two: Study two used an end-user design approach combined with thematic analysis to explore young people's perspective of blended models of face-to-face and digital treatment in first-episode psychosis. The sample included ten participants. We found that young people strongly endorsed the use of blended models of care, in so far, as it enhances their treatment experience but does not replace the face-to-face care altogether. Increased accessibility to,and continuity of, care, a channel to access posttherapy support from peers, consolidation of psychoeducation and a way to strengthen the bond between a young person and clinician were identified as benefits of blended models of care.
Conclusions: This thesis used two qualitative approaches to better understand young people's experience of digital mental health intervention for first-episode psychosis and young people's perspectives on blended models of mental health care for first-episode psychosis. By exploring experience and perspective, this research was able to shed light on different aspects of a digital mental health interventions for first-episode psychosis and identify facilitators and barriers to young people's engagement that has not been previously identified. This new knowledge constitutes a timely and relevant contribution to the field of digital mental health literature.
PART 1: INTRODUCTION
Chapter 1: General Introduction
Psychosis is a mental health condition typically characterised by a "loss of contact with reality (Bosnjak Kuharic et al., 2019)." Symptoms generally relate to a person's perception, cognition, and emotional experience, which can include but are not limited to, delusions, hallucinations, and disorganised thinking and behaviour (American Psychiatric Association, 2013). The initial onset of psychosis is generally in late adolescence and early adulthood, and the impact of this experience at a critical developmental stage can have a profound impact on a young person’s developing identity, world view, future aspirations, interpersonal relationships, and educational and vocational trajectory (Harrop & Trower, 2001; McGorry et al., 1991; Tarrier, Khan, Cater, & Picken, 2007). The term first-episode is used to signify the first time a person experiences psychotic symptoms, and this initial onset can often be an overwhelming and frightening experience for the individual and their family. This unexpected psychotic experience can be a source of trauma for the individual, leading to symptoms of post-traumatic stress (Rodrigues & Anderson, 2017). Prompt access to treatment can help to minimise distress and maximise the young person's safety during this challenging period (Cotton et al., 2016). However, there is often a delay in help-seeking, a phenomenon commonly attributed to societal related stigma (Cotton et al., 2016), young age of onset (Cotton et al., 2016), gender (Cotton et al., 2016), lack of mental health knowledge (Cotton et al., 2016), and difficulty accessing psycho-social interventions (Cella et al., 2019).
The five years following the initial onset of psychotic symptoms have been described as a 'critical period' in the treatment of first-episode psychosis (FEP) (Birchwood, Todd, & Jackson, 1998). Receiving treatment during this period has been theorised to result in better long-term outcomes because people in this early phase of psychosis have experienced fewer years of illness, have less social and functional impairment, and have better treatment response overall (Correll et al., 2018; A. K. Malla & Norman, 2002). Early intervention treatment for FEP was introduced two decades ago, catalysed by the ‘critical period’ hypothesis that reducing the time span between the onset of psychotic symptoms and receiving treatment leads to better outcomes for young people over time (A. K. Malla & Norman, 2002). Early intervention services (EIS) are youth-focused services that provide multidisciplinary bio-psychosocial treatment designed to reduce psychotic symptoms, improve social and functional outcomes, and reduce the prospect of chronic disability associated with long-term psychotic spectrum disorders, such as schizophrenia (Cotton et al., 2016; A. K. Malla & Norman, 2002). EIS are multidisciplinary teams of health professionals who oversee a young person's treatment, including medication management, psychotherapy, family therapy, and psychosocial group activities for up to two years (Cotton et al., 2016). EIS have improved short-term treatment response rates for young people with FEP, with up to 96% of people experiencing a remission of symptoms by the end of the first year of treatment (D. G. Robinson et al., 1999; D. G. Robinson, Woerner, Delman, & Kane, 2005). Unfortunately, however, most people will relapse within several years of discharge from EIS (Alvarez-Jimenez et al., 2019; D. G. Robinson, Woerner, McMeniman, Mendelowitz, & Bilder, 2004). Over time, relapse is associated with poorer long-term outcomes and an increased probability of meeting the diagnostic criteria for schizophrenia and other chronic psychotic spectrum disorders (Correll et al., 2018; Thompson et al., 2018). These psychotic disorders are subsequently associated with poor psychological, physical, and societal outcomes, including severe disability, comorbid mental and physical health conditions, insecure housing, poverty, unemployment, increased risk of suicide, and reduced overall life span (Chan et al., 2018; Fusar-Poli, McGorry, & Kane, 2017; Srihari et al., 2014; Tarrier et al., 2007). Thus, while there is strong evidence to support the positive impact of EIS, people with FEP still face poor long-term outcomes (Correll et al., 2018). These findings suggest that while early intervention is beneficial, young people likely need long-term support to maintain the symptomatic and functional gains that were achieved during early intervention treatment (Alvarez-Jimenez et al., 2019).
Over the last decade, the digital mental health field has shown increased interest in the use of digital interventions in the treatment and management of psychotic disorders (Alvarez-Jimenez et al., 2013, 2021; Bell et al., 2018; Bradstreet, Allan, & Gumley, 2019; Kim et al., 2018; Lal et al., 2015). Previous qualitative research conducted with young people experiencing early psychosis identified the Internet as the 'first port of call' when experiencing the onset of psychotic symptoms (Birnbaum et al., 2018; Lal, Nguyen, & Theriault, 2018) and that young people endorse the use of digitally delivered mental health treatment for FEP (Lal et al., 2015). In a survey study examining young people's preference for receiving specialised mental health services using technology, Lal et al. (2015) found that participants were most interested in using digital mental health technology to source information on medication, vocational information, decision-making tools, appointment reminders, and general information regarding mental health and psychosis.
The term digital mental health intervention (DMHI) refers to the delivery of mental health treatment via technology, most commonly through smartphones or computers. The wide use of smartphones amongst the general public arguably increases the opportunity for mental health care democratisation, as the smartphone opens up a possible alternate pathway to mental health care for some groups of people who may not otherwise access face-to-face treatment (Srivastava, Chaudhury, Dhamija, Prakash, & Chatterjee, 2020). Digital interventions can be used as a stand-alone intervention or as a form of face-to-face and digital treatment referred to as blended care (Wentzel et al., 2016). Blended care has the potential benefit of packaging the advantages of both digital and face-to-face care into one comprehensive mental health intervention (Wentzel et al., 2016).
Concerning FEP specifically, DMHI has been identified as a promising pathway for supporting the treatment and maintenance of young people with FEP over time. Alvarez-Jimenez et al. (2013) suggest digital intervention could be particularly valuable by providing young people with FEP an extended treatment period once they have reached their maximum allocated time within EIS. This could be conceptualised as a digital 'step-down' approach, in which young people transition from the high level of support provided within EIS to maintenance support via digital technology. This could be instrumental as a cost-effective and accessible way to provide continuing mental health care and relapse prevention over time (Alvarez-Jimenez et al., 2019).
Despite the popularity of digital technology, particularly for the adolescent and young adult populations in which FEP most commonly emerges, interventions are characterised by low engagement rates across the broader digital mental health field (de Beurs, van Bruinessen, Noordman, Friele, & van Dulmen, 2017). Engaging participants is one of the biggest challenges facing the digital delivery of mental health treatment at this time (de Beurs et al., 2017; Fleming et al., 2018). To date, there are several gaps in the current research of digital intervention in FEP, particularly regarding user experience and level of engagement. These areas require further research to better understand the generally low engagement rates with digital mental health interventions and how to improve upon them.
To date, several feasibility pilots and randomised controlled trials (RCTs) trialling digital interventions in the FEP population have been conducted, all of which were reported to be safe, feasible, and acceptable to participants. Ten studies, which will be reviewed in Chapter 2, comprised a variety of clinical targets, digital delivery methods, therapeutic approaches, intervention durations, and engagement metrics, making a comparison of engagement rations between them difficult. In particular, this shifting measure of engagement poses a challenge to the digital mental health field more broadly, as there is no current consensus on a general metric. However, it has been recently theorised that a general measure of engagement may not be plausible, and instead, engagement metrics may be intervention specific based on what intervention dose will effectively produce desired targeted change (McVay, Bennett, Steinberg, & Voils, 2019). In addition, based on the data reported, it was not possible to gauge the quality of the engagement, or the meaning participants derived from their engagement with the therapeutic intervention.
Qualitative research methods are one way to shed light on people’s subjective experience or where little is known about a particular phenomenon. The qualitative phenomenological approach used in this thesis was selected because it is concerned with better understanding a person's subjective experience and the meaning they attribute to the experience (van Manen, 2016). While qualitative results are not intended to be statistically generalisable, they can provide a rich and meaningful contextualised understanding of a person's experience of a phenomenon, patterns of interest can be found among experiences, and light can be shed on areas that would have
Young people experiencing FEP report high levels of loneliness; yet, interventions targeting loneliness in FEP populations are limited (Lim et al., 2019). In response to this difficulty and in partnership with consumers, Lim et al. (2019) designed +Connect – an app to deliver positive psychological content to a person’s smartphone every day for six weeks. It was hypothesised that positive psychological interventions could be beneficial in reducing loneliness. Previous research has demonstrated that positive psychological interventions can impact positive emotion identification, gratitude expression, kindness, goal setting, and recognising and utilising personal strengths. Lim et al. (2019) hypothesise that these experiences promote positive affect and improve interpersonal skills and the quality of relationships. The +Connect study aimed to understand if an app targeting loneliness was feasible and acceptable to people experiencing FEP and set a pre-determined goal that participants would complete 70% of the digital program. The study also aimed to create an app considered “useable” by participants, hoping to increase the likelihood of engagement.
The +Connect (Lim et al., 2019) intervention translated positive psychology concepts traditionally used in face-to-face treatment into easy-to-understand, youth-oriented digital content through a series of focus groups with 18 to 25-year-olds. The content was designed to support participants in identifying and developing strengths and building on interpersonal skills to strengthen current relationships. Themes touched on social anxiety content, eliciting positive emotions in others, and demonstrating kindness and reciprocity. With the view to enhance engagement, Lim et al. (2019) opted for a smartphone app to deliver the intervention over a website or platform based on feedback from the focus group. The intervention also included video content for similar engagement purposes. Videos focused on young people with lived experience, expert videos featuring therapists, and actors also performed scripted role-plays to demonstrate positive social interactions.
The +Connect intervention delivered daily content to the participant’s phone for 42 days. After viewing therapeutic content, the participants received follow-up questions regarding the content to support consolidation. +Connect was also gamified to increase engagement; participants could collect points and badges upon completion of activities. Twelve participants were recruited and received daily videos via the app, followed by true or false questions about the video content. Participants were followed up at three-time points across the 6-week intervention period. They completed a semi-structured interview and self-report psychological measures. Two of the twelve participants dropped out before the end of the 6-week intervention period. The remaining participants, on average, completed 95.47% of +Connect, and 80% of participants agreed that the app was useful. In comparison, 20% of the ten participants reported difficulty integrating the app into daily life, reporting it “felt like a chore.”
Overall, the app was found to be safe, feasible, and acceptable, and signalled towards reducing loneliness from pre-intervention. While results for this pilot study were positive, the limited sample size and lack of a control group make it difficult to draw more significant conclusions. Steare et al. (2020) propose that smartphones present an advantageous and cost-effective way to implement self-management interventions via digital technology. The App to support Recovery in Early intervention Services (ARIES) study aimed to test the feasibility and acceptability of recruiting and retaining participants to use the My Journey 3 app in six early intervention services throughout the UK via a two-arm unblinded RCT. Forty participants were included in the study and were randomised to either the treatment-as-usual arm (TAU) or TAU plus access to My Journey 3.
My Journey 3 included self-management features such as recovery and relapse preventative planning, medication tracking, and symptom monitoring. Participants were advised to use the app when it suited them and were also supported to do so by their clinician. Participants were followed up at four and twelve months to complete a series of mental health questionnaires. Retention rates at four months were 83%, and retention rates at twelve months were 75%. On average, the My Journey 3 was used 16.5 times per participant, equalling 26.8 minutes throughout the 12-month intervention period. While the study found recruitment and retention feasible, there were no discernible differences between any outcome measures at either time point. While using the My Journey 3 app was shown to be feasible and acceptable among participants, with generally good engagement rates, no obvious differences between the treatment and TAU group were identified.
There is a higher correlation of social anxiety disorder among people experiencing psychosis (22-25%) compared to the general population (12-16%) (McEnery et al., 2019). Previous research has demonstrated that people with psychosis and comorbid SAD, compared to people with psychosis without comorbid SAD, have poorer functional outcomes, higher levels of internalised shame and a greater number of suicide attempts over the lifetime (McEnery et al., 2019). However, despite these findings, SAD amongst people with psychosis remains undertreated. Thus, McEnery et al. (2019) designed EMBRACE to address this comorbidity amongst young people with psychosis. EMBRACE was an online CBT-based intervention that delivered therapeutic comics in conjunction with a therapeutic social network and clinical and peer moderation via the MOST framework (Alvarez-Jimenez et al., 2021).
Participants were recruited from the Horyzons RCT sample (Alvarez-Jimenez et al., 2021). All young people who had completed the 18-month Horyzons intervention period and scored 30 or above on the social interaction anxiety scale were invited to participate in EMBRACE, a single-arm 8-week pre-post pilot study to assess the feasibility, acceptability, safety, and preliminary outcomes of the intervention. Ten young people participated in the study. The intervention consisted of 12 therapy modules using CBT that delivered various psychoeducation, therapeutic comics, behavioural experiments or targeted actions, and an interactive talking point, which the participant was asked to work through over eight weeks. The study was found to be safe, feasible, and acceptable.
On average, users logged in 19.1 times over the eight weeks, and no adverse safety events were reported. 70% of participants completed the entire intervention, and there was a statistically significant decrease in social anxiety symptoms. Engagement with the intervention was relatively high in comparison to other digital interventions in FEP. The significant decrease in social anxiety reported in this study is also promising; however, due to the small size and lack of a control group, it is difficult to draw more significant conclusions.
Finally, Horyzons, a moderated online social therapy (MOST) platform for young people approaching and recently discharged from an early intervention specialist service in Melbourne, Australia, was designed by Alvarez-Jimenez et al. (2021) and trialled via a randomised control trial (RCT) over a five-year period. The platform provided online therapy, peer-to-peer online social networking, and clinical and peer moderation for an 18-month intervention period. The study examined, via a single-blind randomized controlled trial (RCT), if extending treatment for an additional 18 months via digital means resulted in better clinical outcomes for young people with FEP compared to treatment as usual (TAU), which generally entailed discharge to a community GP.
As such, 170 participants participated in the study, of which 86 were randomised to the intervention arm. The Horyzons intervention was a digital platform bringing together expert clinical, vocational, peer support, and evidence-based therapeutic interventions targeting social functioning, vocational support, and relapse prevention (Alvarez-Jimenez et al., 2021). The web-based platform incorporated interactive online therapy via comics to deliver engaging and accessible psychoeducation to participants and included content such as "understanding psychosis," "identifying early warning signs and preventing relapse," "fostering vocational skills," and "identifying and exercising personal strengths."
The therapeutic content or "pathways" were partnered with "do its" or behavioural encouragements similar to the HYM intervention (Kim et al., 2018), in which participants were encouraged to apply the online psychoeducation into real-world settings. The intervention also included a support clinician with whom the participant was paired. This clinician aimed to develop a rapport with the participant via text, phone call, and online interaction and supported the participant to engage with personalised content. Participants in both groups were followed up at six, twelve, and eighteen-month time points for an interview and a series of self-report questionnaires.
The study found that 80.2% of participants logged on for at least three months, 55.5% for at least six months, 47% for nine months, and 29% for twelve months. The study found that while there was no significant difference in the primary outcome variable, young people in the treatment group were 5.5 times more likely to find employment or enrol in education compared to the young people in the treatment-as-usual group. The study also found that young people in the treatment-as-usual group were twice as likely to present to emergency services. Finally, there was a non-significant trend for lower hospitalizations due to psychosis in the intervention arm of the RCT.
These findings suggest that engagement with a long-term intervention may play a role in reducing hospital admissions and securing employment and education, an important aspect of functional recovery.
5.7 Sample Size
Qualitative phenomenological research is focused on the depth of a phenomenon versus breadth; as such, the sample size required is often considerably smaller than that of qualitative surveys or quantitative research more generally (Meissner, Creswell, Klassen, Plano, & Smith, 2011). As thematic saturation in qualitative research typically occurs between 6 and 12 participants, recruitment in this research project continued until saturation was reached at 11 participants (Guest, Bunce, & Johnson, 2006). A 12th participant was then recruited and interviewed to ensure that no new themes arose.
5.8 Recruitment
Twelve young people from the four usage groups (very low, low, moderate, high) were randomly selected and then contacted via phone call or text message and invited to participate in two qualitative research interviews exploring their experience of the Horyzons platform and their perspectives of blended treatment in FEP. Three young people from each of the four user groups were contacted and agreed to participate. A young person who would have been the third participant in the moderate user group was scheduled to be interviewed. However, as they were experiencing acute psychotic symptoms on the interview day, the interview was terminated prior to gaining consent. A final participant was then recruited from the low user group following saturation to ensure no new themes arose. As the first and second research interviews were completed the same day, two participants did not participate in the second interview due to lack of time.
5.9 Procedure
Participants identified their preferred interview location; interviews took place in various locations, including the Orygen clinics, public libraries, cafes, and young people’s homes. At the beginning of each interview, the interviewer (LV) explained the purpose of the interview – which was a two-part interview: 1) to better understand the experience of using the Horyzons platform and 2) to understand their perspectives on blended models of digital and face-to-face treatment. Participants were given the explicit opportunity to ask questions and complete a consent form. Participants were also informed that they could continue to ask questions throughout the interview if a question came to mind or if they wanted clarification about the interview at any point.
5.9.1 Study One
The author conducted twelve semi-structured in-depth phenomenological interviews. Participants were asked two primary phenomenological questions:
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What was Horyzons?
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What was Horyzons like?
Prompts such as, “can you say more about that?” and “what was that like?” were commonly used. Also, if the participant did not speak organically to their personal experience of the social and therapeutic aspects of the platform, the following prompts were used:
Interview Schedule
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What was the therapy like?
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What was the social network like?
5.9.2 Study Two
Following the completion of the first in-depth phenomenological interview, participants were invited to participate in a second interview. This interview was based on their perspectives of blended face-to-face and digital mental health care based on their unique experience of involvement with both EPPIC for approximately two years, followed by engaging in the 18-month Horyzons RCT. Ten of the twelve participants from the first interview went on to be interviewed for the second interview. Two of the twelve participants were not able to continue due to a lack of time. For the end-user design interview, participants were asked a series of questions centered on their perspectives on blended models of care, on the delivery of blended models of care, and their perspectives on what functions would be beneficial to include in blended models of care.
Interview Schedule
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As someone who has had treatment at Orygen and used Horyzons, how useful would it be to combine those two services together so that people can access those things as a package when they begin treatment at Orygen?
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What do you think would be a good way to combine the Horyzons platform and face-to-face support so that young people can get the best out of those two things?
Prompting Questions if not covered in question 2: -
How could Horyzons be helpful in sessions with a clinician?
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How could Horyzons be helpful outside sessions with a clinician?
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Would you like to track how you were feeling with Horyzons outside of your sessions?
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Would you like to be able to chat to your clinician outside your sessions?
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What other things could be helpful about combining Horyzons and a clinician?
All participants were given the opportunity to ask questions following the interview. Before leaving the interview, all participants were reimbursed AUD 20 for participating.
5.10 Data Analysis
All interviews were recorded and transcribed verbatim by Rev.com, a professional online transcription service. Once the transcripts were complete, the author read through them while listening to the audio recordings to ensure accuracy, and some minor corrections to the transcripts were made. As the data analysis for the first and second research studies differs from the third, they will be addressed separately within this section.
5.10.1 Study 1: Interpretative Phenomenological Analysis
Participants' descriptions of the phenomenon are then considered side by side, and an understanding of what is common and divergent about the experiences across participants is noted (Creswell, 2007). However, in line with Creswell’s (2007) approach, all experiences are considered equally important, regardless of how often they are endorsed across the participant group. Nevertheless, if some themes are endorsed more often than others, this information can be useful when making inferences about the design and implementation of an intervention. For example, this information could be taken into consideration when considering what technical changes to prioritise.
Smith et al. (2009) and Creswell's (2013) IPA frameworks were used to guide the analysis for study one. To begin, a process of familiarisation with the data occurred. To achieve this aim, all participant transcripts were read and reread several times. Each of the twelve transcripts was then analysed one by one. Section by section, each transcript was examined, and emerging concepts, words, and phrases were noted in the right-hand margin. As this process progressed, connections were often made between other sections of the transcript, and as such, the same transcript needed to be analysed multiple times to connect these links. Following this process, a list of "significant statements" from each transcript was produced.
Following Creswell's (2013) IPA approach, each significant statement was equally weighted and spoke to what it was to experience the Horyzons platform. The significant statements from each transcript were then compared across all transcripts. There was overlap across many significant statements; however, some were only endorsed once or twice. These significant statements became the basis for themes or "meaning units" representing the experience of the intervention.
At this point, due to the large and complex data set at this stage of analysis, the data was meaningfully divided into the experiences of:
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Social connection
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Therapy
Due to the size and depth of the data, this delineation of these two themes then formed the basis of two different sub-studies: 1) the experience of social connection on Horyzons and 2) online therapy on Horyzons. Consequently, the similar and contrasting meanings attributed to the experience of social connection and online therapy respectively were deliberated on. Thick descriptions (with accompanying quotes) were then written that described what it was like to experience the phenomenon under exploration. These descriptions included attributed meaning and the different meanings attributed to similar experiences among the participant sample.
At this stage of the analyses for both the online therapy and social connection sub-studies, the interpretation phase commenced. As such, interpretations of the meaning of the experiences under examination were made, both on an individual participant level and on an overarching sample level. To ensure rigour, the author kept a reflexive reflective journal in which thoughts, assumptions, and potential biases were recorded when completing the analyses and subsequent interpretation. The author regularly discussed this content in supervision while completing the analysis to unpack and substantiate results and how they tracked back and mapped onto the dataset. Regular supervision was provided by the author's supervisor, in which codes, themes, and the overall results of paper one and paper two were thoroughly discussed and debated.
5.10.2 Study 2: Thematic Analysis
A thematic analysis was selected as the data analysis for the second study of this thesis. A thematic analysis was selected as it presents a thorough method for analysing and organising the interviewees' perspectives of blended models of care. The analysis was conducted following Clarke and Braun's (2006) process for thematic analysis. To begin, the author became familiar with the data by reading and re-reading the transcripts many times. From this point, each transcript was analysed individually; codes were assigned to the transcript to identify areas of interest or meaning in the transcript, and reoccurring codes were noted and connected throughout the transcript.
These codes formed the basis of groupings or themes within and across transcripts. Some themes were overarching—representing a complete thematic category—while others sat under overarching themes and became subthemes within the same category. To ensure rigour, thick and rich descriptions of each theme were written up and accompanied by participant quotes that illustrated the presenting theme (Morse, 2015). As with IPA, the author engaged in regular reflexive discussion with their supervisor (SB) to interrogate their analysis, and to debate and resolve inconsistencies when they arose.
PART II: EMPIRICAL CHAPTERS
Chapter 6: Young People’s Experience of a Long-Term Social Media–Based Intervention for First-Episode Psychosis
6.1 Chapter Guide
This chapter consists of a peer-reviewed article published in the Journal of Medical Internet Research in 2020. JMIR is a leading peer-reviewed open-access medical journal in the field of digital health. The paper is titled “Young People’s Experience of a Long-Term Social Media–Based Intervention for First-Episode Psychosis: Qualitative Analysis” and explored the potential for digital mental health interventions to address the lack of social connection and high levels of loneliness experienced by young people diagnosed with FEP. The Horyzons intervention included a therapeutic social network to promote engagement and foster social connection between young people. However, little was known about how young people experienced this intervention feature and what meaning they derived from it. Thus, the following paper used an IPA approach to explore how young people engaged with and experienced a long-term social media–based mental health intervention that included a therapeutic social network.
6.2 Publication 2
Valentine, L., McEnery, C., O’Sullivan, S., Gleeson, J., Bendall, S., & Alvarez-Jimenez, M. (2020). Young People’s Experience of a Long-Term Social Media–Based Intervention for First-Episode Psychosis: Qualitative Analysis. Journal of Medical Internet Research, 22(6), e17570.
Chapter 7: Young People’s Experience of Online Therapy for First-Episode Psychosis: A Qualitative Study
7.1 Chapter Guide
This chapter consists of a peer-reviewed article published in the Journal of Psychology and Psychotherapy: Theory, Research & Practice (PPTRP) in 2021. PPTRP is a leading journal in the mental health field focusing on the psychological and social processes that underlie the development and improvement of psychological problems and mental well-being.
The paper is titled “Young People’s Experience of Online Therapy for First‐Episode Psychosis: A Qualitative Study” and uses a phenomenological approach to explore how young people experienced and made meaning of online therapy.
7.2 Publication 3
Valentine, L., McEnery, C., O’Sullivan, S., D’Alfonso, S., Gleeson, J., Bendall, S., & Alvarez‐Jimenez, M. (2021). Young People’s Experience of Online Therapy for First‐Episode Psychosis: A Qualitative Study. Psychology and Psychotherapy: Theory, Research and Practice.
Chapter 8: Blended Digital and Face-to-Face Care for First-Episode Psychosis Treatment in Young People: Qualitative Study
8.1 Chapter Guide
This chapter comprises a peer-reviewed article published in JMIR Mental Health, a peer-reviewed journal focusing on the intersection of digital technology and mental health. The paper is titled “Blended Digital and Face-to-Face Care for First-Episode Psychosis Treatment in Young People: Qualitative Study” and combined an end-user design framework with thematic analysis to explore ten young people’s perspectives on the development of blended models of mental health care for young people experiencing FEP.
8.2 Publication 4
Valentine, L., McEnery, C., Bell, I., O'Sullivan, S., Pryor, I., Gleeson, J., Bendall, S., & Alvarez-Jimenez, M. (2020). Blended Digital and Face-to-Face Care for First-Episode Psychosis Treatment in Young People: Qualitative Study. JMIR Mental Health, 7(7), e18990.
PART III: DISCUSSION
Chapter 9: Discussion
9.1 Chapter Guide
This final chapter summarises the overall findings of this thesis, provides a discussion of some of the key learnings, strengths and limitations, and recommendations for future research.
The primary aim of this thesis was to explore young people's experiences of the therapeutic and social network components of a long-term digital mental health intervention for first-episode psychosis (FEP). The secondary aim was to investigate young people's perspectives on the development of blended models of treatment for FEP. To achieve this aim, two separate qualitative methodologies were selected to examine young people's subjective experience of a Moderated Online Social Therapy platform, Horyzons, and young people's perspectives on the development of blended models of mental health care for FEP. Few studies have explored the experience of digital therapeutic technology from a qualitative perspective, and fewer yet, via an in-depth phenomenological investigation. Further, no research has explored the experience of a long-term digital mental health intervention for FEP that also includes a therapeutic social network or interviewed young people with the unique experience of engaging in EIS and a long-term digital mental health intervention and explored their opinion on blended models of mental healthcare for FEP. From this series of novel qualitative work, several informative findings arose.
Paper 1, presented in Chapter 6, focused on the experience of social connection on the Horyzons platform. Findings from this study showed that Horyzons was an embodied place that young people could arrive at and be in with their peers. It offered a tangible sense of belonging through connection to place and community, even when there was no direct interaction between community members. The fact that young people could be in a communal space with others who shared a similar mental health experience triggered a powerful sense of respite and belonging. Through being with others with a shared experience, young people reported a simultaneous experience of understanding and lack of alienation. For some, it was the first time they had experienced this sense of belonging since the emergence of psychotic symptoms. This points to the value of an accessible digital space for young people experiencing FEP.
Further, peer-to-peer support experienced through the social network was identified as a valuable source of support and information sharing, which at times could be held in higher esteem than that provided by trained clinicians due to the importance young people placed on the value of lived experience. By contrast, it was also identified that some young people could feel burdened and experienced anxiety due to the perceived expectation to provide peer support to other community members. Finally, the study identified barriers to young people's engagement that related to experiences of social anxiety, paranoia, internalised stigma, and limited autonomy. These challenges were significant to the young people who experienced them, and they acted to interrupt their capacity to engage meaningfully with the platform.
Paper 2, presented in Chapter 7, focused on the experience of online therapy. The findings from this study revealed that the online therapy experience was idiosyncratic – taking on different meanings for different young people. Thus, the therapeutic content led to young people using different coping mechanisms and strategies, including on-demand help-seeking, positive distraction, revision, generalisation and translation, and consciousness-raising. On-demand help-seeking and positive distraction were identified as two ways in which online therapy was experienced differently than face-to-face therapy and speaks to the unique contribution that online therapy can make to a therapeutic intervention. While a direct cause-and-effect relationship cannot be established from these findings alone, it is possible that the mechanisms identified here, both positive distraction and on-demand help-seeking, may have played a role in supporting young people to cope in moments of crises and prevented escalation, possibly relating to the significant reduction in emergency presentations and a trend for lower hospitalisation of young people in the treatment group in the Horyzons RCT (Alvarez-Jimenez et al., 2021).
Finally, Paper 3, presented in Chapter 8, examined young people's perspectives of blended models of mental health care for FEP. Main findings included young people's expressions of caution that digital intervention be used to enhance face-to-face treatment but not altogether replace it, the use of digital therapy to complement and consolidate information learnt in face-to-face therapy, and an exploration of young people's interest in digital therapeutic relationships, such as a chatbot venting tool.
9.3 Key Learnings
A key learning of this thesis was in developing a deeper understanding of the function and utility of the phenomenological qualitative research approach.
Qualitative methods: A valuable companion to quantitative research
The phenomenological qualitative method used in this thesis produced a rich and nuanced understanding of young people's subjective experiences of the Horyzons platform. As the first digital therapeutic technology of its kind, the impact of Horyzons on the mental health and well-being of the young people with psychosis has been evaluated via an RCT (Alvarez-Jimenez et al., 2021). While there was no difference found between the intervention group and the treatment-as-usual (TAU) group with regard to the primary outcome of social functioning, the Horyzons RCT did find that participants in the intervention arm had a 5.5 times increase in the chances of finding employment or enrolling in education, a core component of functional recovery. As well as half the rate of hospital admissions and visits to emergency services; a key goal of specialist FEP services (Alvarez-Jimenez et al., 2021).
This supplementary qualitative work offered a complementary approach to better understand the subjective experience of using the platform. This approach shed light on aspects of the intervention that may have otherwise remained unknown. For instance, the Horyzons outcome paper reported that 55.5% of young people in the Horyzons arm of the trial logged on for at least 6 months and 47% continued for at least 9 months (Alvarez-Jimenez et al., 2021). These high engagement rates are of interest in and of themselves, however, a qualitative exploration was able to better understand the experience of the higher users and shed light on some of the reasons that a substantial proportion of young people (44.5%) may not have continued to engage with the Horyzons platform after 6 months. In asking young people about their experiences, the current qualitative research was able to identify the common facilitators (belonging, connection, normalisation, positive distraction, on-demand idiosyncratic therapeutic support) and barriers (social anxiety, paranoia, internalised stigma, lack of autonomy) that impacted upon why young people may have engaged or disengaged from the Horyzons intervention over time. With this knowledge, researchers can endeavour to recreate the positive experience of high engagers for other young people and attempt to circumvent the barriers experienced by lower users, thus increasing potential for engagement and therapeutic benefit. Thus, qualitative research demonstrates the valuable companion it makes to quantitative research in answering different kinds of research questions and bringing nuance and understanding that may have otherwise been overlooked, as experience is difficult to capture quantitatively. This key learning is in line with a mixed-methods approach, a method that has risen in popularity in recent years as researchers have begun to identify that there is "something missing" (Austin & Sutton, 2014) from their quantitative data. Austin et al. (2014) suggest that the missing something is the voice of the participant. While a strength of the Horyzons RCT was the breadth of data collection combined with the long-term nature of the intervention, introducing the voice of the Horyzons participants through the work in this thesis enriched the contextual knowledge and subsequent understanding of the data already collected in the trial.
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