Whilst transition between mental health services has been qualitatively explored , to date we believe this is the first study to qualitatively investigate the experiences of transition between mental health services for young people with ADHD. In the health literature, the issue of transition between child and adult services has been well discussed; however, the process in mental health services has been comparatively under-investigated. In this study, we sought to explicitly elicit the views and experiences of young people approaching or undergoing transition from CAMHS to AMHS. We found that patients’ relationships with their clinician were a key factor in both their reported experience of CAMHS and the transition process. The perception of perceived responsibility of care was also pivotal in how the transition process was viewed. The nature and severity of problems and patients expectations of adult services were also contributing factors in the transition process.
Young people and their carers/parents relationship with their clinician was perhaps the most poignant theme to emerge from our study. In line with previous research [18, 27] it appeared that the patients’ experience of their interactions with their clinician and having a trusting relationship with them was an important factor to their satisfaction with CAMHS. Of particular importance was the need for patients to feel that they were being listened to. Price et al.  have suggested that communication should be a pivotal part of training for professionals delivering healthcare transition services so that they are able to engage young people as patients. Although this concept has been documented previously , it is perhaps particularly prudent in the cases of young adolescents, to allow them to feel respected and valued as young adults. It is possible that young people who feel that they are being listened to and have input in to their care feel more enabled to deal with their condition . As such, it is possible that these cases may have better transition into adult services. Furthermore, those individuals with a positive experience of CAMHS may be more willing to engage with adult services once transitioned.
The transition to adult services brought up an interesting debate regarding responsibility of care. From our sample, it was evident that parental input was still desired or required in some cases. There was no evidence of young people not wishing to have parental support, supporting previous findings from physical health care literature that parents are still needed by their children in adult health services [29, 30]. Some cases even suggested that they would not be willing to attend services without their parents present. This is somewhat contrary to Singh et al.  who observed that young people preferred not to have their parents involved in their care, although the parents still wanted to play an active role in their child’s contact with adult services, which we also observed despite parents openly acknowledging their child achieving adulthood. It is possible that post–transition our sample may also report the same preference and given that we often interviewed both the parent and young person together this may have influenced the young person’s voice. Alternatively, it may be that parental involvement is crucial in the early stages of transition to adult care. ADHD symptoms manifest in childhood, which often leads to an extended period of contact with CAMHS, this often means that parents are involved with their child’s care and support from an early age, which may explain the reliance on parents in these cases. It is therefore recommended that adult services adopt a flexible approach to parental involvement based upon patient need and preference.
There was also evidence that young people and parents saw their clinician as being responsible for the success of their transfer. Similar to the findings of Singh et al. , some of our sample had received sessions of ‘joint working’ between CAMHS and AMHS clinicians or felt that their clinician had prepared them for transition in to adult services. However, some participants reported feeling let down and ill-prepared to transition. Cases where young people felt their CAMHS clinician had prepared them for transition typically had a more positive view of both CAMHS and AMHS. Furthermore, clinicians which were perceived to work hard for their client viewed positively. This is echoed by the results of Soanes et al.  who suggest that adolescents be ‘steadily ‘prepared for transition. Similarly, Singh et al.  also found that flexibility and persistence of clinicians fostered better patient engagement. In addition the importance of preparation is stressed in both the NICE guidelines for ADHD (CG72)  and Department of Health documentation, “Transition: getting it right for young people”  which suggests full information should be provided to the young person about adult services and they should be involved in the planning process, which should begin as early as possible [5, 11]. Tuchman et al.  suggest that earlier discussions, opportunities to meet new healthcare providers and visits to adult venues may aid the process of transition. Joint working has been previously documented as a potential facilitator to transition [15, 16] and is advocated by NICE .
Consistent with the findings of Singh et al.  we also found that patients with more severe mental health issues were more likely to transition to AMHS than those with milder or less complex problems. It is possible that this reflects a severity threshold applied by AMHS or perhaps limited experience and expertise in childhood neurodevelopmental conditions, especially ADHD for which there is limited training for many healthcare professionals [13, 28]. We found that parents perceived the nature and severity of symptoms as factors which could impede or facilitate transition. Thus it is recommended that further training in ADHD symptoms and difficulties or the provision of specialist consultation be advocated for AMHS services.
The importance of managing expectations and concerns surrounding adult services was also observed. Parents and children often had an unrealistic expectations as to what AMHS could offer, or simply did not know what to expect. This mirrors the findings of Wright  who found that parents and young people had elevated expectations as to which services would be provided in AMHS. This further highlights the noted differences between the services available in CAMHS and AMHS. This lack of knowledge tended to lead to concerns and fears surrounding transition. One participant expressed their concerns regarding their knowledge that an equivalent adult service may not be available and how their needs for ADHD medication prescribing and monitoring would be met, mirroring the findings of Kirk , whilst some young people adopted a ‘wait and see attitude’ as found by Singh et al. . Whilst previous research has highlighted that young people and parents saw the transition to adult services as a logical step  this was not reflected in the participants we interviewed and instead transition was viewed as unnecessary and resulted in participants feeling as though the service did not care or that they were being ‘dumped’ by the service. Furthermore, transition based on age has been described as a bureaucratic barrier  which has been highlighted as a potentially insufficient indicator of readiness to transition . Some participants did not see the need to transition and saw the potential transfer to an adult service as an inconvenience and annoying, which raises questions regarding transition appropriateness or readiness  and further supports the importance of preparation and expectation management. Of the participants who had already been transitioned, one participant noted no noticeable differences between CAMHS and AMHS. This may have been due to the service they received in CAMHS being predominantly medication monitoring and prescribing. However, experiences may differ whereby other treatments are required. For example, AMHS may not provide family therapy, a service which may be received in CAMHS. The Social Care Institute for Excellence (guideline 44) advocates clinicians having knowledge of how each other’s services operate in order to provide co-ordinated and joined up services . It has been noted that there is often a lack of knowledge by both CAMHS and AMHS regarding service structures and available pathways , such lack of knowledge may hinder transition if clinicians are not aware as to what adult services can provide and what services are available.
Limitations and strengths
Our study is limited by its small sample size. Although, unlike quantitative studies, qualitative studies are not required to achieve a certain sample size per se, the limited numbers require caution when generalizing to the wider population. Furthermore, our study was only conducted within one healthcare organisation and therefore comparison with other services whereby different ways of working may be in operation would be of benefit and may reveal contrasting results. Furthermore, not all young people with ADHD are seen in CAMHS. Originally the study hoped to also recruit from Pediatric services which should have likely increased the number of eligible young people with ADHD, however difficulties with using the same study materials as those used in CAMHS and obtaining ethical approval for conducting the study in additional service organisations meant this could not be achieved. Evidence from such studies is paramount if we are to develop appropriate evidence based protocols and ways of working for transition.
Some young people were interviewed with their family members; this may have been a weakness as often parents dominated the interviews and young people spoke through them. However, some young people may have spoken more due to their parent being present. Interestingly, those interviewed without their parents present were perceived by the interviewers to be more independent and expressed their independence from parental support in the interviews. In contrast, those interviewed with their family members appeared more heavily reliant on parental support.
Although some of the participants had recently transitioned to adult services, they were in the early stages of contact with AMHS. We found that in some cases our interviews provided the first introduction to transition, which was also experienced by Soanes et al. . Our study was designed to observe the entire process of transition from 17 to 18 years of age. NICE guidelines  state that the transition process should start at 17.5 years and, as such, our findings regarding a lack of preparation for transition may reflect the fact that some participants would not be expected to have any knowledge regarding transition at that time. However, one participant at 18 years and 3 months of age had no knowledge of transition. Furthermore, whilst one participant under the age of 17.5 years did not have knowledge of transition, a further participant under 17.5 years was aware of the potential to be transitioned or discharged showing that the process is not uniform.
As this study is an analysis of baseline data and participants are at differing transition stages, further caution must be exercised in relation to the conclusions drawn as they may only be reflective of this point in time and the 12 month follow-up interviews may provide further insight into the overall experience of their journey from CAMHS to AMHS.
With regard to participating clinicians, we found that willingness to participate in the project for some clinicians was limited, resulting in few referrals to the study. In total, we contacted 24 clinicians, of whom 11 responded with a patient list identifying potential cases. In total, this resulted in 81 cases. Hence the 10 cases that agreed to participate in the study represent approximately 12% of the possible cases available. These 10 cases came from 7 clinicians (6 psychiatrists and 1 psychologist). Whilst we realize that the study demanded extra work from clinicians in order to facilitate recruitment, the clinician’s availability and motivation to aid the project recruitment may have been a further limitation of the study. In turn this may have influenced the findings as referring clinicians may have had a vested interest in transition. Furthermore, this affects the generalisability of the study as does the geographical area in which this study was set. Therefore our sample may not be representative of young people with ADHD in transition in other areas in the UK. In addition, the experience of transition for young people with ADHD is likely to be different in areas where dedicated transition policies and procedures are available. However, despite such policies our findings demonstrated that the clinicians themselves are pertinent to the process and the young person’s experience.
It is pertinent to remember that whilst the information collected from participants is invaluable, these are still individual perceptions and may not accurately reflect the process of transition or conduct of clinicians and services involved. In addition, triangulation of information, with for example, case notes may have enabled some verification of our findings. Whilst our sample was small, the presence of recurring themes and their support of previous research throughout the transcripts provide some reassurance regarding theme validity and therefore affords a degree of accuracy as to how ADHD patients are currently experiencing CAMHS and the transition process. Although some commonalities with previous research have been noted, generalization of the experiences of people with ADHD to those with physical health difficulties may not be suitable and it is suggested that future exploration of transition processes be conducted on a condition by condition basis. This recommendation is made on the basis that adult ADHD services are not fully integrated into AMHS in the UK and therefore may not be comparable with physical health conditions which have longstanding adult services and dedicated models to aid transition. Whilst some of our findings support previous research, the identification of the importance of parental involvement often in a practical capacity and emphasis on clinician qualities affecting overall service perception would benefit from further exploration especially in relation to service engagement and the experience of clinicians in AMHS.