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

Anna Price, Tamsin Newlove-Delgado, Helen Eke, Moli Paul, Susan Young, Tamsin Ford, Astrid Janssens

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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.

Original languageEnglish
Article number404
JournalBMC Psychiatry
Volume19
Number of pages16
ISSN1471-244X
DOIs
Publication statusPublished - 2019

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Caregivers
Communication
England
Guidelines
Interviews
Access to Information
Information Services
National Health Programs
General Practitioners
Parents
Delivery of Health Care
Research

Keywords

  • ADHD
  • Adolescent
  • Information
  • Mental health
  • Qualitative
  • Transition

Cite this

Price, Anna ; Newlove-Delgado, Tamsin ; Eke, Helen ; Paul, Moli ; Young, Susan ; Ford, Tamsin ; Janssens, Astrid. / In transition with ADHD : the role of information, in facilitating or impeding young people's transition into adult services. In: BMC Psychiatry. 2019 ; Vol. 19.
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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.",
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In transition with ADHD : the role of information, in facilitating or impeding young people's transition into adult services. / Price, Anna; Newlove-Delgado, Tamsin; Eke, Helen; Paul, Moli; Young, Susan; Ford, Tamsin; Janssens, Astrid.

In: BMC Psychiatry, Vol. 19, 404, 2019.

Research output: Contribution to journalJournal articleResearchpeer-review

TY - JOUR

T1 - In transition with ADHD

T2 - the role of information, in facilitating or impeding young people's transition into adult services

AU - Price, Anna

AU - Newlove-Delgado, Tamsin

AU - Eke, Helen

AU - Paul, Moli

AU - Young, Susan

AU - Ford, Tamsin

AU - Janssens, Astrid

PY - 2019

Y1 - 2019

N2 - 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.

AB - 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.

KW - ADHD

KW - Adolescent

KW - Information

KW - Mental health

KW - Qualitative

KW - Transition

U2 - 10.1186/s12888-019-2284-3

DO - 10.1186/s12888-019-2284-3

M3 - Journal article

C2 - 31847827

AN - SCOPUS:85076859724

VL - 19

JO - B M C Psychiatry

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ER -