Abstract
Background
Inaccessible services and poor communication are barriers to successful transitions between adolescent and adult mental health services, for which digital communications (DC) offer a possible solution.
Aims
To investigate the role of DC, including smartphone apps, email and text, given the known barriers and facilitators of mental health service transitions reported in the literature.
Methods
Use of Neale’s (2016) iterative categorisation technique to undertake a secondary analysis of qualitative data collected for the Long-term conditions Young people Networked Communication (LYNC) study.
Results
DC were used successfully by young people and staff in ways that ameliorated known barriers to service transitions. They engendered responsibility in young people, promoted service access and contributed to client safety, particularly in times of crisis. DC risks included over-familiarity between young people and staff, and the possibility that messages could go unread.
Conclusions
DC have the potential to facilitate trust and familiarity during and after transition to adult mental health services. They can strengthen young people’s perceptions of adult services as supportive, empowering and available. DC can be used for frequent ‘check-ins’ and remote digital support for social and personal problems. They provide an additional safety net for at-risk individuals, but require careful boundary setting.
Keywords
Introduction
Young people with long-term health problems can feel anxious about their transition to adult services. Having built strong relationships with child service clinicians, they risk being unprepared for adult services, which demand new levels of autonomy and responsibility, and introduce different communication methods and information sources. Many mental health disorders have their origins in childhood, with prevalence highest among the 16–24 age group, though 17% of 14–17-year olds experience a psychological disorder (Gulliver et al., 2010). More recent studies indicate substantial increases in mental health problems among specific youth groups, particularly young women (Collishaw, 2015) and university students (Universities UK, 2018). Despite this growing population, optimal transition to adult mental health services (AMHS) is rare.
In a systematic review of service transitions only a quarter of young people made the transition to AMHS (Appleton et al., 2019). None of the 13 studies in the review contained extractable data on health outcomes following transition. Scant evidence of this type has also been noted by the Healthcare Safety Investigation Branch (HSIB; HSIB, 2018). However, it is generally recognised that young people often feel unprepared for the transition to AMHS, encounter adverse health outcomes and negative personal experiences as a result, are at increased risk of self-harm and suicide, and that successful transition rates to some adult services are as low as 4% (Dunn, 2017; HSIB, 2018).
National Institute for Health and Care Excellence (NICE) guidelines on service transitions encourage early planning to identify obstacles and make service adaptations with youth input (NICE, 2016). Understanding the communication needs of young people and ensuring information is provided in accessible formats including ‘the use of mobile technology [and] digital communication’ are key recommendations (NICE, 2016: 10). Digital communications (DC) include smartphone apps, texts, emails, video consultations, Voice over Internet Protocol (VoIP) and internet-based personal health records. DC are sent or received by clinicians and/or young people when they are, or could be, mobile. They can be initiated by either party as synchronous or asynchronous communications and are always for the purpose of delivering or receiving clinical care (Griffiths et al., 2018). To date, there is limited evidence regarding the impact of DC on the barriers and facilitators of mental health service transitions.
Mental health service transition barriers, facilitators and the role of digital communications (DC).
Key barriers to mental health service transitions include perceptions of adult services as uncaring, ill-equipped and impersonal, with young people and parents often feeling not listened to, excluded from decision-making and distrustful of staff (Dimitropoulos et al., 2015; Dunn, 2017; Hovish et al., 2012; Lindgren et al., 2013; McLaren et al., 2013; Riosa et al., 2015). Accessibility problems also arise from practical matters such as hard-to-access physical spaces, appointment information that is not tailored to a young person’s developmental stage or a lack of information (Hovish et al., 2012; Paul et al., 2015; Reale et al., 2015; Singh et al., 2010; Swift et al., 2013).
Conversely, clinicians who tailor services to the individual and allow for change to be paced and directed by the young person can facilitate positive transitions (Dunn, 2017; Hovish et al., 2012; Riosa et al., 2015). Young people express a strong desire for autonomy and support to develop motivation for self-care (Dunn, 2017; Lindgren et al., 2013; Swift et al., 2013). Up-to-date and accessible clinical information, formatted to suit the needs of a young population, is needed to support these ambitions.
The research reported in this paper used the content of Table 1 in a secondary analysis of data from the Long-term conditions Young people Networked Communication (LYNC) study, which explored the experiences of young people and practitioners using DC (email, mobile-phone calls, text and VoIP) in UK NHS services (Griffiths et al., 2018). In this paper, LYNC data are appraised against the content of Table 1 to consider the potential impact of DC on the barriers and facilitators of mental health service transitions.
Methods
Aims
To investigate the role of DC considering the known barriers and facilitators of adolescent to AMHS transitions. Specific objectives were to consider whether DC:
foster relationships between service users and clinicians; enhance effective information sharing through developmentally appropriate formats; enhance a clinician’s perceived ability to listen and offer care tailored to individuals; improve accessibility to services and appointment availability; and encourage autonomy and personal responsibility.
Design
Secondary analysis of primary qualitative data from the LYNC study (Griffiths et al., 2018) was undertaken in the present study. LYNC was designed as a mixed-methods case study undertaken in 20 NHS youth services purposively sampled for their diversity of clinical condition, DC use, size and geographical location. Services ranged from mental health to diabetes and cystic fibrosis. Interviewed participants included 165 young people aged 16–24 years, 13 parents, 173 clinical team members and 16 information governance specialists. Research staff unknown to participants conducted semi-structured interviews that explored DC use in clinical practice and any perceived advantages or concerns, specifically regarding risks and ethical implications. Most young people and parent interviews were conducted by telephone and most staff interviews were conducted face-to-face in their place of work. Interviews were audio-recorded and transcribed verbatim, with transcriptions checked for accuracy against recordings. Data were initially coded for different areas of inquiry, for example, what works for whom, where, when and why; ethics; and patient safety. Thematic analyses were then conducted that allowed inductive themes to emerge within each field of inquiry (Braun and Clarke, 2006). One-fifth of all coding was checked independently and discrepancies discussed. Findings suggested that DC can enhance trust in services, support self-management, prompt behavioural activation and reduce anxiety among young people with a range of long-term conditions (Griffiths et al., 2018). However, DC is costly and challenging to implement and there are risks (e.g. confidentiality, unanswered communications), though many of these can be overcome with relevant technology such as encrypted email and clinical team protocols.
Sample
Clinic characteristics and interviewees.
Note: TAY = transition age youth; HCP = health care professional; IG = information governance; AMHS = adult mental health services.
Data analysis
Data were thematically analysed concurrently across clinics and transcripts. This approach sought to identify commonalities between transcripts as well as discordant ideas that proved relevant. The transcripts were coded using the a priori themes outlined in Table 1. Original LYNC study codes were not used to avoid repeating a broad analysis that would be insufficiently focused on DC use for service transitions. Once identified, themes were considered collectively through a process of iterative categorisation (Neale, 2016). This allowed dominant themes and other contextually weighted themes to be listed along with their participant identifiers, which were then analysed for their occurrence and relevance considering the participant source and connection with the research aim and objectives. Young person perspectives are reported separately from professional perspectives, with commonalities and differences in weighting drawn out.
Results
Themes and associated young person perceptions.
Note: EIC = Early Intervention Clinic.
Clinician/service user relationships
Young people cited text and mobile-phone calls as their dominant methods for contacting clinicians. Immediate access to care staff facilitated by DC was appreciated. As a result, young people felt closer to staff and more trusting of them. These relational benefits featured prominently in young people’s responses. In contrast, professional perspectives spoke more of the transactional benefits that DC brought to relationships, such as sending young people prompts to action (Theme 3). One staff member acknowledged that DC helped build rapport and also explained why immediate access to staff helps young people feel closer and more trusting: They might text me something … at two o’clock in the morning about how they’re feeling … they wouldn’t tell me that in person the next day but they’ll tell me by text (unspecified professional).
Autonomy
DC promoted autonomy among the young people by enabling them to take greater responsibility for their care. This involved information gathering, proactive problem-solving and sense checking with staff. Professional responses also emphasised the potential for DC to promote autonomous health-related behaviour. One professional noted how DC had improved interactions during limited face-to-face contact with service users. Young people were emboldened to ask questions over email or text and they researched their conditions prior to appointments. Many now attend appointments prepared and empowered by new knowledge. Professional perspectives appear to validate those of the young people: He brings questions, he wants to understand what is happening. And then as more questions come up in between sessions … he’ll email me (team leader).
Prompts to action
The use of DC as a reminder or prompt to action emerged independently of the a priori themes used for initial coding. Young people would text staff to arrange appointments or request other information and support, including advice on actions they could take if they were experiencing difficulties. This theme also featured prominently in the perspectives of the professionals, but had a slightly different focus to that of the young people: professionals found text messages to be useful reminders ahead of an appointment, which could improve the attendance rates of young people. Text messages particularly are quite successful … I usually text people to remind them about appointments that are coming up (case worker). Sometimes if I can’t get hold of someone … I’ll send them a text saying ‘can you please contact me’ (unspecified professional).
Access to services
For young people, DC made services more available because of their constant, direct and immediate connections with staff. This immediacy of access was very important to the young people and, as noted above, was closely associated with their level of trust in staff. Professional perspectives provided a broader account of the potential for DC to facilitate service access. Email communication facilitated more proactive interventions that provided a form of ‘upstream’ access: You can nip lots of things in the bud … some patients have emailed me … and I can email back … it saves me having to say, I’m sorry you’ll have to come and see me (consultant psychiatrist). she was feeling like she just wanted to sleep and she … so practically we couldn’t have an appointment [face-to-face] but I think it was really important that we stayed in touch (clinical psychologist). Skype [is] a really good way, actually, of keeping in communication with somebody, and actually seeing somebody as well (occupational therapist).
Safety
A second theme that emerged independently of the a priori framework was safety. Young people felt DC promoted safety because of the immediacy with which they could reach staff; however, they also recognised the potential risks: unread emails or texts and the possibility of misinterpreting information when unable to see someone’s accompanying non-verbal cues. A broadly equivalent weighting was given to these aspects of DC safety by staff. Some spoke of young people who were able to reach out via text or email at the point of crisis: regardless of time or place, they could quickly flag up their deteriorating health.
However, staff raised similar concerns to the young people regarding risks to safety from DC. In the event of an acute crisis, digital messages to personal accounts may not be picked up until the following day or even following a weekend or holiday. Young people who had contacted staff personally instead of using an out-of-hours crisis line had reportedly felt abandoned and mismanaged when their messages went unseen. In some cases, this could pose a significant threat: if she had actually sent a message saying, ‘I’m about to take an overdose’, that’s not going to be known about until the morning, rather than her calling the crisis number (assistant psychologist). it’s a bit easier for them to try and cover up how they’re feeling through a text message than it is if they speak to you on the phone or face-to-face (clinical psychologist). Sometimes people text you and you think, oh that’s a bit of an odd text, that’s not really the sort of thing they would send me … so it helps you to assess risk as well (case manager) If they’re psychotic and might start to latch onto me and start to sort of phone up quite a lot … that’s not nice to have to say, ‘look can you stop calling me’ (psychiatrist, Early Intervention Clinic).
Discussion
Considering this study’s objectives in turn, DC was found to foster relationships between service users and clinicians because young people valued the immediacy of access to staff, which engendered trust. DC facilitated a form of expression or self-disclosure that is not always possible in face-to-face encounters and this helped build clinician–client rapport. Swift et al. (2013) reported that staff who go the extra mile to be available following transition nurture trust in young people.
There was some evidence that DC fostered effective information sharing through developmentally appropriate formats. Young people researched their concerns and sent queries to staff or attended face-to-face meetings ‘emboldened’ to pursue knowledge. It was noted how DC had improved time-limited face-to-face interactions with service users as a result.
DC can also enhance a clinician’s perceived ability to listen and offer more personal services. Responding to ‘emboldened’ clients and improved interactions are indicators. So too is the use of email to provide more proactive upstream interventions. Effective information sharing and being listened to are recognised as important facilitators of service transitions (Paul et al., 2015; Riosa et al., 2015).
Accessibility of services at the point of transition is a key concern in the literature (Table 1). In the present study DC improved accessibility in various ways. For young people, direct and immediate DC access to staff was highly prized. Staff noted other accessibility benefits such as triaging caseloads to match need with method of contact, and ensuring continuity of access for young people who may be isolated geographically or psychologically. There was also some limited evidence that DC could improve face-to-face attendance when texts were used as appointment reminders.
There is an association in the literature between promoting autonomous health behaviour through collaborative care planning and a young person’s engagement during transition to AMHS (Dimitropoulos et al., 2015). DC use in this study promoted autonomy by equipping young people with the knowledge to take greater responsibility for their care. Related findings are reported in systematic reviews by Gulliver et al. (2010) and Paul et al. (2015) that identified a desire among young people to use self-help strategies when transitioning to AMHS.
An important theme to emerge independently of those contained in Table 1 was the safety of DC. Young people and staff both recognised safety features of DC including direct, immediate contact, which among other things allowed staff to use texts as part of risk management interventions. On the other hand, both respondent groups recognised a number of risks, which could be catastrophic, for instance, for the suicidal patient whose text or email goes unread. The risk of misinterpreting digital data devoid of non-verbal cues was raised by both groups. This may be particularly significant when the communicated information pertains to someone’s mental health and well-being – states that are ordinarily often difficult to describe. A number of ameliorative actions were proposed by staff including clear boundary setting, operational protocols and training.
Griffiths et al. (2018) found DC costly and challenging to implement. The economic costs were mostly for staff time and, whilst savings in opportunity cost may have been made, they were difficult to quantify. However, improved self-management among young people was thought to be likely to save the NHS costs in the long term. In the present study there were no explicit references to DC costs, although several respondents alluded to potential indicators of opportunity cost savings, for example, upstream email interventions and triaged caseloads. There were also implicit references to staff costs in the form or protocol development and staff training.
Limitations
Of the 24 interview transcripts from the two services included in this study, only five were the accounts of young people. These individuals may have agreed to participate because of a particular interest in the use of DC, and a larger sample of young people may have generated different results. This possibility is compounded by secondary analysis, a well-established methodology that uses existing data to test new hypotheses or answer new research questions (Dunn et al., 2015). Whilst it has many advantages such as typically being less resource intensive than primary research by making use of existing data sets, there are limitations. Access to data can be challenging and it may be incomplete or outdated. Researchers must be able to judge the quality of data and the extent to which they can validly answer a new research question. In this latter respect the present study has some limitations. A number of findings from the existing literature did not surface including preparatory information, contact prior to transition, and flexibility in the speed of transition (Dunn, 2017). This may be because the LYNC interview schedule did not directly ask participants about DC and transition planning, but instead focused on young people’s present experiences of services. Similarly, young people were not asked about DC and the speed of transition between services. Whilst the present study was constrained by the limits of its secondary data, a lack of evidence does not necessarily mean that DC are not beneficial for such purposes.
Implications for practice and research
Young people are prolific users of DC (Griffiths et al., 2018). Direct, immediate access to information and other people is their modus operandi. Clearly there are opportunities to incorporate DC into their care and this paper demonstrates its potential to support young people transitioning to AMHS. Whilst many practice staff may already routinely use DC, this study also identified a number of pitfalls and ameliorative actions necessary to ensure safe care. The implementation of DC in practice should be formally mandated through NHS Trust policies and practice guidance underpinned by staff training and supervision. Though there may be much to gain, there are also significant risks to the welfare of patients and staff.
Primary research is needed to confirm, refute and develop the findings of this study, and to explore the role of DC in planning transfers to AMHS and its impact on the speed and ease of service transitions. Research is also needed that gathers data on DC use alongside health outcomes. It is not known how DC impact on mental health and other similar indicators beyond anecdotal evidence. Engagement with services is complex and may involve a combination of face-to-face and DC contact to a differing degree and intensity over time. Quantifiable measures of engagement that incorporate DC are needed. Such measures should be used in future research to better gauge the impact of DC on service-user engagement. There is also a need to further explore the economic costs and benefits of DC use. Although opportunity cost savings may accrue, there are significant up-front and running costs to safe, secure provision that organisations need to understand.
Conclusions
The findings from this study represent proxy indicators for the potential of DC to facilitate transition between adolescent and AMHS. Text, email and mobile-phone calls can promote trust and familiarity between staff and service users, engender greater responsibility in young people, and are used by staff to promote greater access to services without necessitating face-to-face contact. There is also evidence that DC can contribute to the safety of clients, allowing individuals to send texts or emails when a crisis occurs. These features of DC strengthened the young people’s perceptions of adult services as supportive and available. However, there are also potential risks for which clear boundary setting and practice guidance are necessary for the protection of young people and staff. Despite these risks, DC are a fruitful and emerging area of practice that can usefully augment traditional models of care. Further work is needed to qualify their benefits and to specify their legitimate and safe use.
Footnotes
Acknowledgements
The authors acknowledge the generosity of the young people, carers and staff at LYNC study sites and thank the LYNC project team for allowing secondary use of their data.
Declaration of conflicting interest
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethics
This paper contains secondary analysis of primary data collected by the LYNC study, which received ethical approval from the National Research Ethics Service Committee West Midlands on 5 March 2014 (reference number 14/WM/0066). Ethical approval includes the capacity for students to contribute to the research as part of their academic studies under LYNC researcher supervision.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Key points for policy,practice and/or research
Digital communications (DC) have the potential to facilitate trust and familiarity between young people and staff during and after the move from adolescent to adult mental health services. DC can be used by young people and staff to maintain contact and to provide ongoing support for geographically or psychologically isolated individuals. DC can also be used as an additional safety net for at-risk individuals, although this requires careful boundary setting; those in immediate danger must be directed to out-of-hours crisis lines rather than contacting individual clinicians. Further work is needed to confirm the benefits of DC and to establish their legitimate and safe use.