In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services

Abstract

Background: Many national and regional clinical guidelines emphasise the need for good communication of information to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates only a minority of young people in need of transition for Attention Deficit Hyperactivity Disorder (ADHD) experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative study explored the role that information plays in experiences of transition from the perspectives of parent/carers and young people. Methods: Participants were recruited from 10 National Health Service Trusts, located across England, with varying service configurations. Ninety two qualitative interviews were conducted: 64 with young people with ADHD at different stages relative to transition, and 28 with parent/carers. Thematic analysis of data was completed using the Framework Method. Results: Interviewees reported a range of experiences; however reliance on parent/carers to gather and translate key information, and negative experiences associated with poor communication of information, were universal. Three themes emerged: Navigating information with help from parents; Information on ADHD into adulthood; Information about the transition process. The first revealed the essential role of parent in the translation and application of information, the other two explored distinct types of information necessary for a smooth transition. Interviewees made recommendations for clinical practice similar to UK (United Kingdom) National Institute for Health and Care Excellence (NICE) guidelines, with an additional emphasis on providing nuanced information on ADHD as a potentially long term condition. It was important to interviewees that General Practitioners had a basic understanding of adult ADHD and also had access to information about service provision. Conclusions: Our findings illustrate that the availability and communication of information to young people and their parent/carers is an essential component of the transition process between child and adult ADHD services. How and when it is provided may support or impede transition. This study constitutes a substantial contribution to the evidence base, drawing on interviews from a range of participants across England and from Trusts offering different types of services.

Care Transition from Child/Adolescents to Adult Services

“…A recent study on young people with ADHD highlights, however, the crucial role parents play in gathering, translating, and applying key information, to help young people navigate and access services after the service boundary (Price et al 2019). Young people with neurodevelopmental disorders are more reliant on help from parents than those with physical conditions because the key symptoms of ADHD can hamper the processing and managing of information.…”

“…These include a perceived lack of knowledge about their diagnoses, available treatments, and risks and benefits of prescribed medications (Broad et al 2017). Lack of understanding of the transition process and not having the skills and knowledge of how to manage their mental health independently can further hamper transitioning, as has been discovered in studies involving young people with ASD (Cheak-Zamora et al 2013) and ADHD (Price et al 2019). These young people need and are happy for their parents' help to help secure continued care (Price et al 2019).…”

“…One of the most frequently identified care-related barriers is a lack of preparation in the run-up to the CAMHS service boundary, with transition decisions not made until the young person reaches the age cut-off, or the young person not feeling informed about their transition (Price et al 2019). This has left young people feeling uncertain and anxious about their transition (Burnham Riosa et al 2015) or feeling as though the process is rushed, giving them no time to consider their options (Wilson et al 2015).…”

“…Youth participation in decision making, leadership, service provision, and service development has been instrumental in the development of a number of the above services or service networks (Rickwood et al 2019). Table 1 collates young people's views and recommendations on how to ensure positive experiences regarding care transition from CAMHS to AMHS (Broad et al 2017;Price et al 2019). Table 1 Youth recommendations for positive service experiences and clinical practice for CAMHS-AMHS care transition.…”

“…Table 1 Youth recommendations for positive service experiences and clinical practice for CAMHS-AMHS care transition. (Adapted from Broad et al 2017 andPrice et al 2019) Pre-transition: CAMHS Useful CAMHS clinician qualities: tenacity, flexibility, instilling hope, providing support and reassurance, nonjudgmental, good listener Sharing of key information well in advance in a staged process, with time for the young person to reflect and discuss options Involvement of young person in transition planning collaboratively Involvement of parents/carers Early notification of transition to AMHS Preparation for transition Explanation of differences between child and adult services Sharing of information about the new clinician/team Communication of the physical location of adult services During transition: CAMHS-AMHS Development of individualized care plans focusing on young person's goals of functioning Provision of increased autonomy in decision-making Provision of point of contact during the transition Community supports and primary-care physicians to provide "scaffolding" across the transition from CAMHS to AMHS Gradual and flexible timing of the transition, taking individual needs into account Sharing of information between CAMHS and AMHS Care continuity (joint working or parallel care between CAMHS and AMHS) Relational care continuity to reduce the fear of losing relationships with CAMHS staff and to promote comfort with AMHS System-level continuity to reduce gaps Post-transition: AMHS Staff support and practical structure Autonomy in treatment decisions Choice about parental involvement Physical care environments geared toward young adults Informational continuity (i.e., sharing of clinical information between CAMHS and AMHS)…”