Background : The service evaluation explores the transition experience from child and adolescent mental health services (CAMservicesadult mental health services (AMHS). The is more parent when many reports about the transition experience of young people from CAMHS to AMHS are rated negatively. The rationale is to understand what works and, more crucially, what does not work at the point of transition and use this feedback to improve the experience for future patients. Methods: T he service evaluation will be an online survey that combines quantitative and qualitative components. Eleven young people aged 18-21 participated in the service evaluation by answering eight closed and three open-ended questions. Findings: Young people wanted CAMHS and AMHS to offer adequate therapeutic support during the transition and assign a key worker early. Young people would like to be involved in the transition process and for the services to consider their needs when making decisions. Young people wanted the transition process to be commenced early and better joint coordination between the services. Finally, young people asked for services to provide information about the transition process and explain the differences between CAMHS and AMHS. Conclusion: Most participants were unprepared for the transition and felt they had not been provided with the necessary information were not involved in the decision-making. Transition is an important milestone, and failure to manage this critical juncture can lead to a high proportion of young people being lost to services, with subsequent periods of u ntreated illness and increased crisis presentations. This dissertation recommends that CAMHS and AMHS should collaboratively develop transition care plans, including discharge arrangements, medical reviews, and coordination of any ongoing therapeutic interventions to avoid gaps in transition. In addition, CAMHS and AMHS should jointly produce a helpful guide to transition for the young people and their parents and carers to help them transition with confidence.
Transition, young people, experience, CAMHS, AMHS
Psychopathology often continues between the adolescent and adult years (Kessler et al., 2007). Therefore, many young people with mental health problems require long-term engagement with health services and are likely to experience transfer of care from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS). The term transition has two distinct meanings: a developmental transition, from a life stage such as adolescence to adulthood, or a situational transition, from one health service provider to another (A Consensus Statement on Health Care Transitions for Young Adults with Special Health Care Needs, 2002). In this dissertation, transition refers only to situational transition, a transition of care from CAMHS to AMHS.
Several government reports and policy guidance have shown that young people often struggle to move between services and are poorly supported when referred by CAMHS to AMHS (DoH, 2004; Department for Children, Schools and Families, 2008; National Advisory Council for Children's Mental Health and Psychological Wellbeing, 2010). Reviews in Northern Ireland also highlight the need for good interagency working and arrangements to facilitate the transition of young people from CAMHS to AMHS (Bamford Review, 2006).
The Commissioning for Quality and Innovation (CQUIN, 2017/19) framework estimates that more than 25,000 young people a year transition from CAMHS to AMHS and posits that in many of these cases, the process is handled poorly, according to the TRACK 1 Study (2008) which reported that only 4 per cent received an 'ideal' transition and many slipped through the net during the transition and disengaged from services (DoH, 2003; Singh et al., 2010). One requirement of this CQUIN is introducing pre-and post-questionnaires to collect young people's views on their transition experience. Service user participation in these services is core to implementing NHS England's Five Year Forward View for Mental Health (NHS England, 2016). Participatory methods are encouraged to explore support models with young people (Brodie et al., 2011). Poorly managed transitions can affect adult services' continuity of care for those who need it (McNicholas et al., 2015; Paul et al., 2015; Appleton et al., 2019). CAMHS provides treatment for young people with mental health challenges up to the age of 18.
From 18 onwards, support for individuals with mental health difficulties is provided by AMHS. In CAMHS, a system-focused approach is preferred, young people are part of a more comprehensive network, and diagnoses can be emerging or not formalised (Tantum, 2005; Hovish et al., 2012). Interventions offered in CAMHS will usually involve parents and professionals from other agencies. In comparison, AMHS provides services to patients with severe and enduring mental health difficulties focusing on diagnosis-led treatment (Singh and Tuomainen, 2015). Treatment in AMHS is not often offered without a diagnosis and is unlikely to include a comprehensive network (Hovish et al., 2012). Differences in approach between the two services create systemic challenges when negotiating the transition (Lamb et al., 2008).
The transition from CAMHS to AMHS for young people with mental health problems is an international concern. However, despite the high prevalence of mental disorders during adolescence and their tendency to continue during adulthood, most young people do not experience good continuity of care (Hendrix et al., 2020).
In Europe, there is an initiative to acknowledge this difference via the Managing the Link and Strengthening Transition (MILESTONE, 2014-19) approach from CAMHS to AMHS. The study aims to improve transitional care by implementing "managed transition" and training health care professionals.
It is essential to recognise that young people are at high risk of developing mental disorders and engaging in risk-taking behaviours at the age of transition (Patton et al., 2006; Costello et al., 2011; Herbert et al., 2017). The risk of experiencing mental health difficulties such as personality disorders and psychosis increase into late adolescence (Kessler et al., 2005) and adulthood (Copeland et al., 2011; Patton et al., 2014; Copeland et al., 2015). Evidence supports the view that early intervention when these disorders emerge can limit adverse outcomes (Harvey et al., 2007; McGorry et al., 2008). Well-implemented transitional care can help prevent these occurrences and address young people's psychosocial and medical needs (Singh et al., 2010; Swift et al., 2013).
The transition from CAMHS to AMHS is an area that requires urgent improvement (Future in Mind, 2015), and young people receive disjointed care at the point of transition because of gaps in the service provision (Paul et al., 2015 and Street, 2019). The negative experience put many young people at risk of disengagement from services (Future in Mind, 2015 and Royal College of Psychiatrists, 2017). Most research regarding the transition of care from CAMHS to AMHS comes from the perspective of service providers with limited input from the young people experiencing and being impacted by the transition. Few studies have examined young people's experiences and perspectives (MuñozSolomando et al., 2010; Jivanjee and Kruzich, 2011; Hovish et al., 2012). Therefore, this dissertation will conduct a CAMHS service evaluation for young people who have transitioned to AMHS to gather their experience and perspectives of the transition process.
Focus of the service evaluation
Growing evidence acknowledges the significant mortality and morbidity risks to young people's acute and long-term health caused by disengagement from mental health services (NHS England, 2015). There are recognisable impacts on resources in healthcare through repeated non-attendance for planned care, increased use of urgent or out of hours services and increased complexity of need through secondary avoidable complications (Diabetes UK, 2015). In addition, inappropriate transitions result in young people becoming more likely to present in crisis and struggling to maintain independence and remain in education and employment.
Mental health conditions in young people are growing and, so is the need to support and treat mental health illness (Mental Health Foundation, 2007). Some disorders are persistent and will continue into adult life unless adequately treated. For example, novelty-seeking tendencies leave adolescents susceptible to harm, and research shows that boys experience higher rates of severe injuries than young men in their late twenties (Steinberg, 2005 and Arnett, 1994). Other studies show recurrent episodes emerging in childhood and adolescence but continuing into adult life (Bor et al., 2014). Around 50 per cent of lifetime mental illness besides dementia begins by 14 and 75 per cent by 25 (Kessler et al., 2005). At least 75 per cent of mental health challenges have their onset in adolescence (Kessler et al., 2005). However, there are treatments to improve young people's life chances and minimise the impact of mental illness on the population's long-term health and public cost. In common with young people with long-term physical health conditions, transitioning from adolescence to young adulthood for mental health challenges requires individualised health care planning to cater to specific needs (NICE Guidelines, 2016). Transition guidelines should recognise the more comprehensive health, social, psychological, and educational impact and provide appropriate continuing healthcare.
The lack of appropriate support at the point of transition carries risks of illness extension, chronicity and adverse effects on psychosocial functioning and self-determination (Lambert et al., 2013; Have, 2013). Policy and guidance agree that good transition practice involves joint working between CAMHS and AMHS, good communication, continuity of care and gradual transition (Brodie et al., 2011; Hovish et al.,2012; Memarzia et al., 2015; Paul et al., 2015; DoH,2015; NICE, 2016; NHS England, 2016). Yet transition is often managed poorly with adverse outcomes for young people who fear the uncertainty of leaving CAMHS and perceive services as uncaring. Current research states that CAMHS and AMHS leave young people unprepared for transition and poor mental health (Singh et al., 2008, Singh et al., 2009; Singh et al., 2010; Paul et al., 2013; Memarzia et al., 2015; Paul et al., 2015)
Young people's voices in mental health are underrepresented, and the transition experience is insufficiently understood. Therefore, the evaluation will focus on the transition experience from the perspective of young people to improve the process for future service users. Critical to the service evaluation is an understanding of the preparedness of young people as they move between services and their involvement in setting the transition plans. Although young people's needs are significant at the time of transition, particularly across the 18-25 age category, the interface between CAMHS and AMHS is at its weakest, as are the differences in the conceptualisation and management of mental illness (Reder et al., 2000). Differences in approaches hinder a clear understanding of the challenges faced by young people. Although the transition process focuses on the young person's needs, parents and carers will also be transitioning as they will play a lesser role in adult services. Although the involvement of parents and carers is recognised as a protective factor in CAMHS, their involvement in AMHS can be more limited as healthcare professionals fear breaching confidentiality and are not sure how much they should share.
Transition into adulthood is a period of profound physiological and social change for young people (Waylen and Wolke, 2004; Patton et al., 2016), making other vital transitions in their lives (Arnett and Padilla-Walker, 2015). Interventions geared towards developmental, nurturing, and protective factors in CAMHS are suddenly geared towards diagnostics, autonomy, and responsibility in AMHS. Early transition is essential in managing expectations and supporting the young person to prepare well before the transition. Healthcare professionals should champion independence and autonomy to enable young people to control their care and avoid services making decisions that have a far broader impact without their involvement (Kennedy and Sawyer, 2008). Getting young people involved in evaluating the transition process is embedded in The Five Year Forward View for Mental Health (2016) and is key to the NHS Long Term Plan (2019).
The service evaluation will advance understanding the transition young people experience as they move from CAMHS to AMHS and use their lived experiences to recommend changes to the transition process to benefit future service users. Transition models vary across regions in the UK, leading to health inequalities between regions (National CAMHS Review, 2008). The transition process has been recognised as an area that requires urgent attention due to adverse outcomes. The TRACK study (2008) revealed that many young people with established mental health problems slip through the net during the transition and disengage from services (Vostanis and Richards, 2002; DoH, 2003; Singh et al., 2010). Services must offer supported integration and attend to more comprehensive health, psychological and social outcomes in addition to condition-specific effects. In Australia, 0-25 years models that span the traditional age of the transition divide have been implemented to delay transition when young people are at increased risk of developing mental health problems and other complex psychosocial and physical changes. Although these changes apply to all young people, they are more relevant to long-term mental health conditions. Mental health services should consider how they facilitate the transition to enable young people to manage their health conditions (Tuffrey and Peace, 2003; Stam et al., 2006; Lyon et al., 2006). In the UK, a few pioneering NHS Mental Health Trusts have transformed their services to support young people up to 25. Longitudinal neuroimaging studies show that the adolescent brain continues to mature well into the twenties challenging longstanding assumptions that the brain will have finished growing by puberty (Giedd et al., 1999; Sowell et al., 1999; Sowell et al., 2001).
Numerous reports show that young people are excluded when decisions about their care are made (Mental Health Foundation, 1999; Select Committee on Health, 2000). Transition concerns are detailed and well documented (House of Commons Select Committee on Health, 2000; The Royal College of Paediatrics and Child Health, 2003; The Royal College of Nursing, 2008). Poorly implemented transition can be accompanied by poor health and impact the management of mental illness, social participation, and education achievement (Irwin, 1989; Steinberg et al., 2008). Clear and precise transition guides enable a better transition experience (Nakhla et al., 2008). The transition should help young people build independence, involve parents, and ensure a safer transition transfer (NICE Guideline, 2016; CQUIN, 2017). However, inadequate transition models create risks of young people falling between the gaps in services, being left on the sidelines, and being excluded from decision-making (Royal College of Psychiatry, 2003). Young people have described the transition experience as "fleeing a flooded house, rushed, no choice and meetings where professionals do not introduce themselves and only considered a narrow range of options" (Street, 2019). Such experience has led families to describe the process as uncoordinated and often unexpected, causing significant stress and anxiety (Singh et al., 2010., Hovish et al., 2012; From Pond into the Sea, 2014; Butterworth et al., 2017). While guidance and protocols are often in place, they are not always followed. Although services should be responsive to the needs of the patients, young people, parents, and carers find adult services not suitable for their needs with the professionals not adequately skilled to support complex needs. The experience has led to the transition between CAMHS and AMHS, labelled "the great divide" (Singh, 2009).
The NICE Guidelines (2016) propose applying a person-centred approach that considers the young person's views to support services to provide better transition outcomes. It suggests that healthcare professionals arrange joint appointments and run joint clinics to facilitate the handover process better. Policy guidance exists, yet persistent problems remain (Lamb and Murphy, 2013). Studies consistently show that young people want to be listened to, understood, and taken seriously (Appleton et al., 2011; Care Quality Commission, 2014), as well as have choices and easy access to information (Fenton, 2016, p.519-522; Hayward-Bell, 2016). This service evaluation aims to focus on the voices of young people to use their lived experiences of transitioning between services to improve transition outcomes for future patients.
The overall aim of the service evaluation and individual objectives
The importance of conducting a service evaluation with this focus is more apparent when many reports about the transition experience of young people from CAMHS to AMHS overall are rated negatively. If services do not accept the feedback, young people will experience substandard care, leading to adverse outcomes. Therefore, it is critical to the service evaluation process to understand how young people perceive the effectiveness of the transition process. The overall aim of the service evaluation is to advance the experience of the issues surrounding the transition from CAMHS to AMHS. As part of the service evaluation, the following points will be considered to assess young people's transition from CAMHS to AMHS.
1. Identify factors that hinder the effective transition from CAMHS to AMHS.
2. Evaluate the feedback critically from the participants.
3. Explore participants' views on transition, including barriers to effective transition.
4. Formulate recommendations for future practice on the transition from CAMHS to AMHS.
Feedback from young people who have transitioned from CAMHS to AMHS provides an essential dimension on understanding what works and, more crucially, what does not work at the point of transition. In addition, the feedback will help identify the barriers young people encounter as they move between services. It will also highlight some of the more subtle cultural differences between services that impede transition and how often there is a disconnect between policy recommendations, guidance, and actual practice.
Methods of evaluation
The methodology will be a mixed-methods approach, using an online questionnaire hosted on SurveyMonkey to explore young people's views and perceptions of the transition experience from CAMHS to AMHS. Questions will use a rating scale, with 100 being wholly involved and 0 completely uninvolved. In addition, the survey will use closed questions to address critical factors in the transition process. Finally, the last question will provide a space to explore young people's lived transition experience and offer suggestions to improve the transition process for future patients.
The participants will be young people who have transitioned from Berkshire Healthcare NHS Foundation Trust's CAMHS to AMHS in the last three years, with all participants being over the age of 18. Specifically, young people will have been open to the CAMHS Specialist Community Team (SCT) in East Berkshire, living across the Slough, Windsor, Ascot, or Maidenhead localities. Participants will be identified from an internal CAMHS excel spreadsheet. Participants whose personal details on the Rio clinical records system include their email addresses will be contacted by email. They will be given the link to the survey on the SurveyMonkey website and further prompted by phone calls and emails. Those without recorded email addresses on the Rio system will be contacted by letters advising them about the survey and providing a link to the website; they will also receive follow-up telephone calls.
Value of the service evaluation
The point of transition has been recognised as a time where young people are at risk of disengaging from services at higher rates than other age groups (Pottick et al., 2008; Singh et al., 2010; Mental Health Commission of Canada, 2015). Models to examine the preparedness and readiness of transition have been completed with young people and adults in physical health (Zhang et al., 2005; Sawicki et al., 2011; Gileland et al., 2012; Nagra et al., 2015), severe mental health needs (Donahue et al., 2012) and inpatient settings (Turrell et al., 2005). However, no comparative routine examination has been completed in CAMHS, and no robust transition care models have been developed or evaluated (Paul et al., 2015). Given the vulnerability of young people transitioning between services, it is vital to understand their lived transition experience and use the feedback to improve transition outcomes. The value of the service evaluation is to ensure a smooth and seamless transfer of care for the young people and their families and promote a client and carer centred focus within all transition planning work.
Given the lack of research on this topic, the service evaluation will be an online survey that combines quantitative and qualitative components. This is appropriate as qualitative research focuses on investigating participants' lived experiences and the meanings they give (Willig, 2001). Open-ended and closed questions were used to explore the transition lived world of participants and how they made sense of it (Kvale, 1996). The method was considered democratic and flexible: the researcher has an area of interest and questions relating to this, but there is a wish to allow the participant to provide feedback freely, and this is an excellent way to generate rich data on respondents' experiences and the meanings they give to them, which is particularly important when researching an under-researched area (Smith, 1995). Arguably an attitude of compassion and a desire to remain faithful to the participants' voices is appropriate for an under-researched area. The assumption is that the participants are the experts.
Questions used a Linkert rating scale from 0 to 100. The survey had 11 questions that explored the young people's thoughts, feelings, and perceptions to gain an insight into how they made sense of their transition experiences. The appropriate way to capture the experience was to gain detailed personal accounts; some questions were open-ended. Carter and Little (2007) outline three key concepts which provide the foundations for conducting qualitative research in the social sciences. A researcher's epistemological stance is the first fundamental component that needs to be clarified as this position has a direct impact on the specific approach taken (methodology), which in turn justifies the techniques used to gather data (method) (Carter & Little, 2007). Second, epistemology has its roots in philosophy and is concerned with the theory of knowledge (Thomas, 2009).
The survey was developed, refined, and updated with the support of my supervisors. I valued this experience as the earlier drafts were influenced by my views regarding what should be done to improve outcomes for the transition experience. The survey, therefore, was re-drafted several times until it was ready to be sent to the participants.
Jaeger and Rosnow (1988) argue that it is impossible to view knowledge from a passive bystander perspective assumed by the realist perspective. Instead, people take an active role in constructing their understandings. People are always embedded within a specific context; all knowledge is context-bound, perspectival, and standpoint dependent (Jaeger & Rosnow, 1998). Madill et al., (2000) argue that the same phenomena can be understood differently depending on the person's unique perspective, and therefore all knowledge is provisional and relative. The service evaluation aimed to understand the participants' points of view regarding the transition process. Still, the understanding is related to the individuals in that context and time (Larkin et al., 2006). Therefore, research findings are variable and dependent on the context in which the data is gathered and analysed (Madill et al., 2000). This emphasises the fact that the researcher is also an active contributor to the research process. This is because the researcher is inevitably part of the context and actively participates in knowledge discovery and construction (Jaeger & Rosnow, 1988).
Mantzoukas (2004) argues that a researcher's epistemological stance is directly related to their ontological position, and therefore this should also be clarified at the outset of the research process. Ontology is concerned explicitly with the nature of the world (Thomas, 2009). When thinking ontologically, researchers attempt to answer questions such as, "what is there to know? or what is the nature of reality?" (Willig, 2013). A realist position would advocate the belief that there is a single, objective, independent reality and, therefore, a straightforward relationship between our perception of the world and the "true" world (Willig, 2013). Smith & Osborn (2008) highlight that the focus is the in-depth exploration of personal experience and how people perceive, ascribe meaning to and make sense of their experiences. This premise assumes that people are actively engaged in the world and constantly reflect on their experiences to understand them (Smith et al., 2009).
The service evaluation aimed to gain an insider's perspective on their transition experience, and this was achieved by reading and analysing the participants’ transcripts to understand their experiences. The outcome, therefore, relied on participants having the ability to articulate, possibly complex, thoughts and feelings. However, Willig (2013) argues that it is a great challenge to communicate the intricate details of experiences, mainly when people are not accustomed to talking in such a way. Smith et al. (2009) additionally argue that "our interpretations of experience are always shaped, limited and enabled by language" (p. 194), and this poses another dilemma. Language is limited, creating boundaries to fully share our understandings (Jaeger & Rosnow, 1988). Finally, as the person conducting the service evaluation, I actively participate in the analysis process. It has been argued that interpretations can be constrained by the researcher's ability to interpret, reflect, and make sense of the data (Brocki & Wearden, 2006). The participants speak English, and language will not be a barrier. Explaining one’s experience using a service is not a complex process, and most of the questions are closed, limiting what participants can say. Participants can seek help from their family or carers and contact me if the questions are not clear.
Due to COVID-19 restrictions, an online survey was the best alternative to collect the data. The survey used both open-ended and closed questions to capture the feedback. Although closed questions limit the choice for respondents, they find them easy to respond. Too many open-ended questions can put off respondents as they may find writing difficult or be concerned about their spelling or grammar. Telephone interviews were considered, but they take time to complete. Participants could decide not to take part if they thought the process could take much of their time. Face to face interviews need time to organise and arrangements regarding where to conduct the interviews. Ideally, face to face interviews should take place in public places or workplaces and avoid interviewing strangers in their homes. Unfortunately, the COVID-19 restrictions made this form of gathering data impossible to implement.
The service evaluation used the Code of Human Research Ethics (BPS, 2010). Ethical approval was granted by the University of West London School of Biomedical Sciences Research and Ethics Panel (see Appendix 1). Ensuring that a respectful and trustworthy approach underpinned the service evaluation was paramount during the design and implementation. Agreeing to be involved in the service evaluation was taken as consent to participation. Participants were truthfully informed about all aspects of the service evaluation using a Participant Information Sheet (see Appendix 2). They were given time to process and reflect on this information before agreeing to participate. Participants understood that participation was voluntary, and their responses would be anonymised. Personal information that could identify them remained strictly confidential, and I was the only person who had access to this information. The data collected was handled using an anonymous form, and this involved giving individuals a number instead of using their names or initials. Participants knew what I intended to do with the data, and I informed them of my steps to ensure confidentiality. I told participants that the service evaluation aimed to understand their transition experience and hoped this could improve outcomes for future patients. Participants could contact me by email if they had concerns or questions. Participants were informed they were free to withdraw at any time without explanation.
The Trust’s research and development department was contacted, and they referred the project to the audit department, which registered it, and it was allocated ID number 7366.
Transition literature read during the Research module was used for the dissertation. The central theme which stood out was most young people felt the transition process was not well organised and lacked clear communication between CAMHS and AMHS. Initially, the plan focused only on young people who had transitioned in 2020, but the sample was much smaller, and every young person who had transitioned in the previous three years was then included. Thirty young people had transitioned from CAMHS to AMHS.
The covering letter explained the purpose of the service evaluation. I asked participants to respond by using the email included in the cover letter. I had planned to contact every individual on the sample by phone to discuss consent. None of the thirty individuals responded to the initial letters I sent out. I met with my supervisors and explored how l could do things differently . This time l called the 30 participants and explained the reason for the survey and how their participation could help develop the service. I sent out letters to everyone on the sample and included the survey details on the Survey Monkey website. This time eleven participants out of the thirty responded. The disadvantage of using online surveys as a data collection method is that the response rate is rarely higher than 20 per cent, hardly representative of the population (Adams et al., 2014). However, in this case, the response to the survey was 36.7 per cent. Smith et al. (2009) highlight that students undertaking professional doctorates usually engage in four to ten interviews. For this reason, the eleven participants appeared appropriate for an MSc dissertation.
I had considered contacting all participants to discuss consent and explain further the rationale for the service evaluation. I would then post the consent forms for completion. However, l ended up not doing so because l thought some participants would be less keen to engage if they thought there would be a higher level of time commitment. In addition, doing so would have taken too much time and would have been challenging to implement. l was working my day job and had a deadline to submit the dissertation.
Smith et al. (2009) encourage recruiting a relatively homogenous sample of people whose demographic features do not vary significantly. The gathering experience of people who have transitioned from CAMHS to AMHS is quite specific, and therefore the potential sample population was relatively small. Homogeneity is achieved by sampling a group of people who share and offer insight into a particular experience (Langdridge, 2007; Smith et al., 2009). Open-ended questions were used to enable participants to respond freely and openly about topics they feel are pertinent while also ensuring that areas relevant to the research question were covered (Smith et al., 2009). Smith et al. (2009, p. 57) define this as "conversation with a purpose".
Transparency is characterised by self-reflexivity (Tracy, 2010) and owning one's perspective (Elliott et al., 1999). I acknowledge that I have taken an active interpretative role throughout the analysis; therefore, l have included my reflection to show my thoughts and influence. Yardly (2000) highlighted that another quality of good research is transparency and coherence. Through discussions of the methodology, the reader can see an appropriate fit between the service evaluation question and the methods selected. In addition, I have included responses from all the respondents in the appendixes to allow the reader to reflect on my interpretations and consider possible alternatives. Finally, Yardly (2000) suggests that a final feature of good qualitative research is its sense of importance and impact. Tracy (2010) highlights that this begins with selecting a worthy topic. I hope this service evaluation will encourage staff working in CAMHS and AMHS to reflect on possible implications for their practice and inspire them to continue further research around the topic to improve future transition outcomes.
Smith et al., (2009) outline several stages involved in data analysis, which were used flexibly to help guide the process. First, developing analysis involved moving from focusing on the individual to a more shared understanding and from a descriptive level to a more interpretative one (Smith et al., 2009). Second, the analysis was a cyclical process rather than a linear one. Table one describes the stages involved (see Appendix 3).
Superordinate and subordinate themes will be presented and discussed in turn. Tables will be included to provide a visual presentation of the prevalence of subordinate themes across the respondents. Although four superordinate themes emerged during the analysis process, many are interlinked.
The next stage was to look for connections between themes. Similar themes were clustered together and arranged into possible hierarchies such that some themes subsumed others and became superordinate themes. Finally, themes were checked against the transcript to ensure that they matched the source material. Smith and Osborne (2003) suggest that this close interaction with the text allows the researcher to draw on their interpretative resources while remaining grounded in the meanings of the participant. The process outlined above resulted in a master list of themes. The process was repeated for each transcript, and a master list for each transcript was produced. These were consolidated to create a final master list. Themes were modified, re-clustered, and became more nuanced as the analysis proceeded.
Several common themes emerged, and these are presented in the findings. In addition, four core themes were expressed by most of the respondents, although not in the exact wording. Therefore, I will discuss the themes separately, although the analysis is linked between all the themes. The focus on the transition experiences from CAMHS to AMHS is more apparent because it is estimated that 25 000 young people transition each year. However, many of them do not have a positive transition experience, and as a result, some disengage from services putting their health and wellbeing at risk. Young people feel excluded from important decisions, and the transition to adult mental health services is poorly planned and is rushed. The views of young people are an important dimension to understand whether services are delivering what they are commissioned to do or need to adapt. The primary aim of the service evaluation was to identify factors that hinder the effective transition from CAMHS to AMHS and use the recommendations to improve the experience for future patients. The data from the survey were analysed using simple descriptive statistics, which generated the mean, median, range and mode described in the next paragraph.
The survey question: "To explore young people's experiences of transitioning from children and adolescent mental health services to adult mental health services." What is the transition experience of moving between services?
In total, 11 individuals completed the online survey. Most respondents were male (54.55 per cent). The age of the participants was between 18 and 21 (mean age -20 years), which gave a range of 4. Of these, one participant had used the CAMHS service for 60 months. Participants 1 and 5 skipped questions 4 and 3,10 and 11. The median was 19 and the mode 21. There was a response rate of 36.7 per cent. Five participants were twenty-one years old; three were twenty, one was nineteen, another was eighteen, and one stated they were seventeen years old. The seventeen-year-old could have been a typo since the sample consisted of individuals who were 18 and over. Five participants who made up 45.5 per cent of the respondents had transitioned from CAMHS to AMHS in the previous three years; three in the last two years, one during 2019 and the last one in 2020. The median and mode of the data set were 1.
To obtain a rich insight, open-ended questions were qualitatively analysed using thematic analysis. The thematic analysis allows common themes to be identified across a dataset. Hence this technique was considered suitable for the aims of the service evaluation. The analysis of data was carried out using the guidelines set by Braun and Clarke (2006). First, each transcript was read several times to become familiar with the data and differences and similarities across the dataset. Next, all exciting features and emerging patterns were coded and then grouped into potential themes. Finally, all data relevant to each likely theme were collated and allocated to the emergent themes. Unlike other analyses, thematic analysis is not tied to a particular theoretical framework which brings different assumptions about the nature of data and what they represent. Instead, the analysis was conducted in a realist framework, which reports participants' experiences, meanings, and reality. In total, four participants skipped six questions. Participant #5 did not answer questions 3, 10 and 11.
This section aims to provide a narrative of the survey. The focus on the transition from CAMHS to AMHS is more apparent because it is an important topic area of policy development (From the Pond to the Sea, Care Quality Commission, June 2014, Model Specification regarding transition, NHS England Jan 2015, NICE Guidance, 2016). Findings from the literature review on transition show that many young people feel excluded from the transition process. Four superordinate themes emerged and were expressed by more than half of the participants, albeit in various forms: ‘support during the transition’, ‘patient involvement’, ‘commencing transition earlier’, and ‘transition process and preparation’. Superordinate Theme 1 had two related subordinate themes, and these are presented in table 2.
Table 2: Superordinate Themes and Related Subordinate Themes
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Quotes will be used proportionally across participants so that their experiences can be illuminated and their voices heard. In addition, extracts from at least half of the participants related to each subordinate theme will be included to support claims made (Smith, 2011). The analysis will explore depth and breadth throughout the narrative while highlighting shared and distinct experiences to capture convergence and divergence between experiences. Themes will be discussed separately; however, the analysis is sensitive to the links between them.
Although there is not much literature specific to young people's transition experience, l understood the topic because I work in CAMHS. My knowledge of the topic area was increased by reading journals and different transition policies related to the topic, which changed my preconceptions. I was mindful not to return to the literature during the analysis process and tried to ensure that my interpretations were grounded in the data rather than imported. I found that repeated reading of the feedback and leaving time between analysing different responses supported this. I tried to approach each young person's answer as if it was the first. However, I started making links as I went along, which facilitated new experiences and understandings of the emerging themes. I found the process exciting yet exhausting, and l was concerned about losing the depth of the experiences. I kept going over the analysis, which made the process longer than I had anticipated and delayed the writing of the findings.
Support during transition
This superordinate theme captures the participants' frustration due to the lack of support during the transition between the services. Participants thought transition should be considered complete when they started receiving support in adult services. In contrast, CAMHS felt the process was completed once the adult services accepted the referral and closed the case. The gap between a referral being accepted and the time it took to get support was when participants felt left in limbo. Superordinate Theme 1 had two Subordinate Themes, therapeutic support and key worker.
Eleven participants responded to question 6, which asked how prepared they for the transition were. The average rating was 34 out of 100. Five participants reported being prepared (45.5 per cent), and 6 were not (54.5 per cent). The highest score was 86 out of 100 by participants #9, and the least was 0 by participants #1 and #6. The majority of the participants were not prepared for the transition process.
Table 3: Subordinate Themes Relating to Superordinate Theme 1
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Seven participants reported experiencing challenges to access support while they waited to be assigned a worker. The reference being in 'limbo' suggests the image of participants waiting for something to happen that was outside of their control. Participants perceived the delay to access help as a lack of urgency and prioritisation of their care:
‘ If it wasn't for my mum l would be dead from suicide by now !’. (participant #1, Q11, line 2).
Here the participant describes how he felt let down by the service and gives all credit to his mother for supporting him. Other participants also shared the theme of not being able to access therapeutic support.
‘Provide patients with more support when transitioning. I began to struggle due to lack of support. The lack of support during transition made it harder to cope with settling in’. (participant #2-Q11, lines 1,3 & 5)
Services should be aware of the transition's anxiety for young people and parents and realise that some young people’s mental health may suffer at times. The extracts above show the young person's lack of control over her mental needs and the impact on her mental well-being. Further, the lack of support led to feelings of irritability and anger towards the services.
‘ Absolutely disgusting as l was really struggling & the doctor couldn't do anything as had to wait till l got to the top of a list & offered an appointment’. (participant #3-Q11 line 1).
The experience faced by the participants shows the reality young people endured. Further, the analysis suggests that lack of support contributed to resentment towards mental health services. This gave a sense of disempowerment. The phrase used in the quote above expresses the frustration of moving from a service providing therapeutic help to another where the participant had to wait until assigned help. Young people felt their mental health challenges were not prioritised and were left on their own.
‘ I was just told that l had been transferred to adults services and that CAMHs will close my case. I was not given details of whom to contact during crisis’. (Participant #6, Q11, lines 5 & 7).
Care should be handed over in a planned and collaborative way, through meetings between both services, the young person and their parents, carers. The absence of therapeutic support resulted in disjointed care leaving the young person with no one to contact in an emergency.
‘ I was told l would be discharged from the children services when l did not know who would support my mental health needs’. (participant #7-Q11 line 4).
Here, the participant describes the lack of adequate service provision when it was most needed. The participant felt acceptance by the adult services without access to help left him with a sense of being abandoned and feeling vulnerable:
‘ Since l was 18 l was told my case was closed in CAMHS. I was told if an emergency arise to call my GP or to go to A&E’. (participant #8, Q11, lines 5&7).
Again, lack of support left young people waiting until there was capacity in adult services to assign new referrals.
‘ I felt abandoned by CAMHS and left on my own in adult services as they appear to care less and are quick to give a diagnosis’. (participant #10-Q11 line 2)
Here, the differences in approach to managing mental illness were laid bare. For example, the participant felt AMHS prioritised giving a diagnosis instead of providing support. This shows the difference in how the services approach the management of mental illness. CAMHS does not rush to offer a diagnosis but instead emphasises teaching young people how to manage their condition, whereas, in adult services, treatment is led by diagnosis. In CAMHS, treatment is more family-oriented and holistic with the legal position of parents recognised, whereas in adult psychiatry, the focus is on the patient and their symptoms. The parents’ position changes when the young person becomes an adult, and their right to be involved is no longer there. Training regarding family involvement is not the same in CAMHS and AMHS, and the focus is more on the individual, not the family.
However, not all participants struggled to access support. This shows where support was made available at the point of transition, it helped young people settle, and they felt assured of the process.
‘ I felt secure in this process although l will miss CAMHS and all they've done for us’. (participant #9-Q11, line3).
Where young people felt they were included in the process, this resulted in a positive experience. But, in sum, young people struggled to secure help once they were accepted in adult services, and their cases were closed in CAMHS. This left them feeling there were on their own and unable to influence the outcome.
Table 4: Subordinate Themes Relating to Superordinate Theme 1
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This subordinate theme captures the importance of a key worker. The key worker helps young people settle into a new service and talk to them when things are not going well. The theme also highlighted the scarcity of key workers in adult services.
‘ When I transitioned to adult services l was not given a key worker but just had appointments with my psychiatrist’. (participant #2-Q11, line 2).
The quote makes explicit the authentic sense of not getting adequate support to which young people were entitled. In the case of participant #2, even when she was eventually allocated a key worker, her situation did not change much until she was assigned a different key worker.
‘ I requested a key worker and was given one who was unable to help much. Eventually due to circumstances l managed to get a different more qualified key worker which helped me’. (Participant #2-Q11, lines 4&5).
Participant #2's experience shows that in some instances, allocating a key worker is not the end-all as her difficulties persisted even after being assigned one. Things only improved after she had a change of the key worker. This experience proves that in some instances, the effectiveness of a key worker depends on their experience. The incident raises concerns because there could have been other younger people who faced similar situations but could not be allocated a different key worker.
‘ I was told l would be moved to adult & then left in limbo for 18 months with no help or support whatsoever’. (participant #3, Q11, line1).
CAMHS’ models of working are different from adult services. Whereas CAMHS focuses on the young person and their family, adult services focus on the individual with little or no reference to the family. Due to lack of immediate support after transitioning to adult services, participant #3 felt CAMHS should not close cases until the young person is allocated a key worker in AMHS.
‘ However, l was told that l had to wait to be allocated a care Coordinator in adult services’. (Participant #6-Q11, line 6).
This quote suggests treatment did not start after transitioning until they were allocated a key worker, leaving them without support or someone to contact when they were having a bad day or needed advice on other issues.
‘ By the time of transition, a patient should have someone allocated to support their mental health needs in adult services. CAMHS must consider other services that can help young people besides adult services’. (participant #7, Q11, lines 9&10).
A similar experience is evident in participant #8's description of her interaction with the services.
‘ I was told my referral to adult services was accepted and they would get in touch. I was told l had to wait until l was allocated a key worker. I was told if an emergency arise to call my GP or to go to A&E’. (Participant #8-Q11, lines 4,6&7).
Adult services staff should understand young people’s issues, needs and risk areas. For example, the phrase used below by participant #10 expresses her frustration at the adult services’ working model.
‘ I felt abandoned by CAMHS and left on my own in adult services’. (participant #10, Q11, line 2).
In sum, allocating a key worker at the transition point appeared to help manage the stress of transitioning to a new service and establishing new relationships. In addition, having a key worker would enable a comprehensive handover and allow continuity of care.
Question four asked how much participants felt they were involved in the transition process on a 100-point scale. There were ten responses. The average rating was 50, with a higher score of 87 by participant #9 and the least score of 0 by participant #3. Overall, 7 out of 10 participants rated their involvement above fifty per cent, which gave an approval rate of 70 per cent. Conversely, three gave a score below 50 per cent, giving a disapproval rate of 30 per cent. Most of the participants felt they were involved in the transition process.
Table 4: Subordinate Theme Relating to Superordinate Theme 2
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Where decisions were made jointly, patients were pleased with the outcome and felt empowered when they were treated as equal partners and listened to. All participants responded to question 7, and 63.6 per cent gave their involvement in shared decision making below 50 per cent. The average score was 31 out of 100. Four participants rated their involvement above 50 per cent. Participant #1 gave a score of 0, and participant #9 gave 82 per cent. Overall, the approval rate for the shared decision-making was 36.4 per cent.
Shared decision making
Table:5 green- above 50 and red-below 50
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There is a change in how services engage with patients when it comes to making decisions. Health care practitioners are moving away from making decisions they consider best for patients to making decisions with patients. CAMHS and AMHS are no exception and are expected to do the same for the young people; however, most participants felt they were not involved when decisions were taken.
‘ I am disgusted with the services! You have failed me miserable !’. (participant #1, Q11, lines 2&3).
Here, the sense of frustration is apparent by the choice of words used by participant #1.
‘ I was receiving therapy in CAMHs which stopped once l transitioned so l found it hard to manage the change’. (participant #2, Q11, line 6).
The quote above suggests decisions were made without consultation, and the participant was not aware they would not receive the immediate therapeutic intervention after the transition. Participants would have struggled with less support when compared with the level of support they received in CAMHS. The lack of support could be a lack of confidence in AMHS staff in managing young people and different approaches in providing care.
‘ I was told l would be moved to adult’. (participant #3, Q11, line 1).
There is a sense of exclusion. The participant was informed what would happen, but they were not part of the meeting. Instead, this was a tokenistic gesture that did not give the young person a say.
‘ I was not involved in the discussion regarding my care. I was not part of the meetings between CAMHs and Adult Mental health team’. (Participant #6, Q11, lines 2&3).
The quote again demonstrates the extent of exclusion that young people face in services when decisions with far broader implications are made without their input.
‘ Involve patients in the discussions. Staff should find out what is important for the patient and their family’. (Participant #6, Q11, line 1&3 under ideas).
Again, the transition experience left an impression of a process that did not offer choices and led to the disempowerment of patients and left them feeling hopeless. There was no evidence of staff involving the patient in the discussions or what they saw as the main priorities.
‘ There was no planning or effort to find out what or my family wanted. I was not involved in the transition meetings’. (Participant #7, Q11, lines 1&2).
This makes the process a tick-box exercise rather than driven by what the patient considered more important. Moreover, it failed to promote patient autonomy and was somewhat paternalistic.
‘ Involve patients and their families’. (Q11, line 6).
Once again, a recurring theme from many of the participants highlighting how they were excluded from their care.
‘ You can improve by involving patients in decision making’. (Participant #8, Q11, line 6).
This demonstrates a failure by services to work collaboratively with patients. Instead, they used paternalism with the belief that young people were not capable of making decisions.
‘ I was told meetings would take place but l was not involved. No one made efforts to find out what was best for me’. (Participant #8, Q-11, lines 2&3).
Where joint working took place, participants had a positive experience that helped reduce the anxiety associated with transition, and they confidently looked forward to moving to adult services.
‘ I was informed in my transition, as a family, we were involved and kept up to date, decisions and goals were made collectively’. (participant #9, Q11, line 1).
One participant who was involved in the decision making had a favourable experience of the transition process. She felt her views were considered, which gave her a sense of empowerment. Her experience demonstrates that collaboratively working ensures a better transition experience.
In sum, young people's experiences of this theme showed the services’ goals of the transition were misaligned with the participants’ own needs. Therefore, the involvement of young people in decision making can help reduce discrepancies and instead allow both parties to work collaboratively and provide a better patient experience.
Commence transition early
The superordinate captures the importance of starting the process early to allow young people to know the staff in adult services, how the service works and allow time for any questions they had answered. In the past, the transition process has been described as rushed and exclusionary. Commencing transition earlier can also help the adult services plan demand and capacity and ensure they have the resources when the transition occurs. In addition, preparation is vital when young people transition to a new service to be treated as adults with minimum involvement of their parents and carers, who may have played a prominent role in CAMHS.