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Published in: European Child & Adolescent Psychiatry 3/2021

Open Access 01-03-2021 | Anxiety or Fear-Related Disorders | Original Contribution

“I’m just a long history of people rejecting referrals” experiences of young people who fell through the gap between child and adult mental health services

Authors: Rebecca Appleton, Farah Elahi, Helena Tuomainen, Alastair Canaway, Swaran P. Singh

Published in: European Child & Adolescent Psychiatry | Issue 3/2021

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Abstract

The paediatric-adult split in mental health care necessitates young people to make a transition between services when they reach the upper end of child and adolescent mental health services (CAMHS). However, we know that this transition is often poor, and not all young people who require ongoing support are able to continue care in adult mental health services (AMHS). These young people are said to have fallen through the gap between services. This research aimed to explore the reasons why young people fall through the gap between CAMHS and AMHS, and what effect this has had on them and their families. Narrative interviews were conducted with 15 young people and 15 parents, representing 19 unique transition stories. Themes were identified collaboratively using thematic analysis. Reasons for falling through the gap were grouped into systemic problems and problems with the quality of care received. Effects of falling through the gap were grouped into separate themes for young people (feeling abandoned; struggling to manage without continued care; problems with medication) and parents (emotional impact of care ending; parents taking an active role in the young person’s care). To our knowledge, this is the first qualitative study that has focused only on the experiences of young people who have fallen through the gap between services. This research adds novel findings to existing literature regarding barriers to transition and the effects of discontinuity of care.
Literature
1.
go back to reference Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP et al (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health Off Publ Soc Adolesc Med. 14(7):570–576CrossRef Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP et al (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health Off Publ Soc Adolesc Med. 14(7):570–576CrossRef
2.
go back to reference Murcott W (2014) Transitions between child and adult mental health services: service design, philosophy and meaning at uncertain times. J Psychiatr Ment Health Nurs 21(7):628–634CrossRef Murcott W (2014) Transitions between child and adult mental health services: service design, philosophy and meaning at uncertain times. J Psychiatr Ment Health Nurs 21(7):628–634CrossRef
3.
go back to reference Singh SP, Paul M, Ford T, Kramer T, Weaver T, McLaren S et al (2010) Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study. Br J Psychiatry 197(4):305–312CrossRef Singh SP, Paul M, Ford T, Kramer T, Weaver T, McLaren S et al (2010) Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study. Br J Psychiatry 197(4):305–312CrossRef
4.
go back to reference Hovish K, Weaver T, Islam Z, Paul M, Singh SP (2012) Transition experiences of mental health service users, parents, and professionals in the United Kingdom: a qualitative study. Psychiatr Rehabil J 35(3):251CrossRef Hovish K, Weaver T, Islam Z, Paul M, Singh SP (2012) Transition experiences of mental health service users, parents, and professionals in the United Kingdom: a qualitative study. Psychiatr Rehabil J 35(3):251CrossRef
5.
go back to reference Butterworth S, Singh SP, Birchwood M, Islam Z, Munro ER, Vostanis P et al (2017) Transitioning care-leavers with mental health needs: ‘they set you up to fail!’. Child Adolesc Mental Health 22(3):138–147CrossRef Butterworth S, Singh SP, Birchwood M, Islam Z, Munro ER, Vostanis P et al (2017) Transitioning care-leavers with mental health needs: ‘they set you up to fail!’. Child Adolesc Mental Health 22(3):138–147CrossRef
6.
go back to reference Adnanes M, Steihaug S (2016) "You never know what happens next"—young adult service users' experience with mental health care and treatment through 1 Year. International journal of integrated care 16(3):5CrossRef Adnanes M, Steihaug S (2016) "You never know what happens next"—young adult service users' experience with mental health care and treatment through 1 Year. International journal of integrated care 16(3):5CrossRef
7.
go back to reference Appleton R, Connell C, Fairclough E, Tuomainen H, Singh SP (2019) Outcomes of young people who reach the transition boundary of child and adolescent mental health services: a systematic review. Eur Child Adolesc Psychiatry 28(11):1431–1446CrossRef Appleton R, Connell C, Fairclough E, Tuomainen H, Singh SP (2019) Outcomes of young people who reach the transition boundary of child and adolescent mental health services: a systematic review. Eur Child Adolesc Psychiatry 28(11):1431–1446CrossRef
8.
go back to reference Broad KL, Sandhu VK, Sunderji N, Charach A (2017) Youth experiences of transition from child mental health services to adult mental health services: a qualitative thematic synthesis. BMC Psychiatry 17(1):380CrossRef Broad KL, Sandhu VK, Sunderji N, Charach A (2017) Youth experiences of transition from child mental health services to adult mental health services: a qualitative thematic synthesis. BMC Psychiatry 17(1):380CrossRef
10.
go back to reference Jivanjee P, Kruzich JM, Gordon LJ (2009) The age of uncertainty: parent perspectives on the transitions of young people with mental health difficulties to adulthood. J Child Fam Stud 18(4):435–446CrossRef Jivanjee P, Kruzich JM, Gordon LJ (2009) The age of uncertainty: parent perspectives on the transitions of young people with mental health difficulties to adulthood. J Child Fam Stud 18(4):435–446CrossRef
11.
go back to reference Wilson A, Tuffrey A, McKenzie C, Street C (2015) After the flood: young people's perspectives on transition. Lancet Psychiatry 2(5):376–378CrossRef Wilson A, Tuffrey A, McKenzie C, Street C (2015) After the flood: young people's perspectives on transition. Lancet Psychiatry 2(5):376–378CrossRef
12.
go back to reference van der Kamp J (2018) The transition between mental health services in Scotland. Mental Health Rev J 23(1):12–24CrossRef van der Kamp J (2018) The transition between mental health services in Scotland. Mental Health Rev J 23(1):12–24CrossRef
13.
go back to reference Swift KD, Hall CL, Marimuttu V, Redstone L, Sayal K, Hollis C (2013) Transition to adult mental health services for young people with attention deficit/hyperactivity disorder (ADHD): a qualitative analysis of their experiences. BMC Psychiatry 13(1):74CrossRef Swift KD, Hall CL, Marimuttu V, Redstone L, Sayal K, Hollis C (2013) Transition to adult mental health services for young people with attention deficit/hyperactivity disorder (ADHD): a qualitative analysis of their experiences. BMC Psychiatry 13(1):74CrossRef
14.
go back to reference Burnham Riosa P, Preyde M, Porto ML (2015) Transitioning to adult mental health services: perceptions of adolescents with emotional and behavioral problems. J Adolesc Res 30(4):446–476CrossRef Burnham Riosa P, Preyde M, Porto ML (2015) Transitioning to adult mental health services: perceptions of adolescents with emotional and behavioral problems. J Adolesc Res 30(4):446–476CrossRef
15.
go back to reference McNamara N, Coyne I, Ford T, Paul M, Singh S, McNicholas F (2017) Exploring social identity change during mental healthcare transition. Eur J Soc Psychol 47(7):889–903CrossRef McNamara N, Coyne I, Ford T, Paul M, Singh S, McNicholas F (2017) Exploring social identity change during mental healthcare transition. Eur J Soc Psychol 47(7):889–903CrossRef
16.
go back to reference Tuomainen H, Schulze U, Warwick J, Paul M, Dieleman GC, Franić T et al (2018) Managing the link and strengthening transition from child to adult mental health Care in Europe (MILESTONE): background, rationale and methodology. BMC Psychiatry 18(1):167CrossRef Tuomainen H, Schulze U, Warwick J, Paul M, Dieleman GC, Franić T et al (2018) Managing the link and strengthening transition from child to adult mental health Care in Europe (MILESTONE): background, rationale and methodology. BMC Psychiatry 18(1):167CrossRef
17.
go back to reference O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA (2014) Standards for reporting qualitative research: a synthesis of recommendations. J Acad Med 89(9):1245–1251CrossRef O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA (2014) Standards for reporting qualitative research: a synthesis of recommendations. J Acad Med 89(9):1245–1251CrossRef
18.
go back to reference Stagi P, Galeotti S, Mimmi S, Starace F, Castagnini AC (2015) Continuity of care from child and adolescent to adult mental health services: evidence from a regional survey in Northern Italy. Eur Child Adolesc Psychiatry 24(12):1535–1541CrossRef Stagi P, Galeotti S, Mimmi S, Starace F, Castagnini AC (2015) Continuity of care from child and adolescent to adult mental health services: evidence from a regional survey in Northern Italy. Eur Child Adolesc Psychiatry 24(12):1535–1541CrossRef
19.
go back to reference Gowers SG, Harrington RC, Whitton A, Lelliott P, Beevor A, Wing J et al (1999) Brief scale for measuring the outcomes of emotional and behavioural disorders in children: health of the nation outcome scales for children and adolescents (HoNOSCA). Br J Psychiatry 174(5):413–416CrossRef Gowers SG, Harrington RC, Whitton A, Lelliott P, Beevor A, Wing J et al (1999) Brief scale for measuring the outcomes of emotional and behavioural disorders in children: health of the nation outcome scales for children and adolescents (HoNOSCA). Br J Psychiatry 174(5):413–416CrossRef
20.
go back to reference Patton MQ (2002) Qualitative research and evaluation methods. Sage Publications, Thousand Oaks, CA Patton MQ (2002) Qualitative research and evaluation methods. Sage Publications, Thousand Oaks, CA
21.
go back to reference Bertaux D, Kohli M (1984) The life story approach: a continental view. Ann Rev Sociol 10(1):215–237CrossRef Bertaux D, Kohli M (1984) The life story approach: a continental view. Ann Rev Sociol 10(1):215–237CrossRef
22.
go back to reference Jovchelovitch S, Bauer MW (2000) Narrative interviewing. In: Bauer MW, Gaskell G (eds) Qualitative researching with text, image and sound: a practical handbook. Sage, London, pp 57–74. ISBN 0761964819 Jovchelovitch S, Bauer MW (2000) Narrative interviewing. In: Bauer MW, Gaskell G (eds) Qualitative researching with text, image and sound: a practical handbook. Sage, London, pp 57–74. ISBN 0761964819
23.
go back to reference Polit DF, Beck CT (2008) Nursing research: generating and assessing evidence for nursing practice. Lippincott Williams & Wilkins, Philadelphia Polit DF, Beck CT (2008) Nursing research: generating and assessing evidence for nursing practice. Lippincott Williams & Wilkins, Philadelphia
24.
go back to reference Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101CrossRef Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101CrossRef
25.
go back to reference QSR International Pty Ltd (2018) NVivo qualitative data analysis software. Version 12 edn QSR International Pty Ltd (2018) NVivo qualitative data analysis software. Version 12 edn
26.
go back to reference Saldaña J (2015) The coding manual for qualitative researchers. Sage Saldaña J (2015) The coding manual for qualitative researchers. Sage
27.
go back to reference National Institute for Health and Care Excellence (2016) Transition from children’s to adults’ services for young people using health or social care services. NICE guideline [NG43] National Institute for Health and Care Excellence (2016) Transition from children’s to adults’ services for young people using health or social care services. NICE guideline [NG43]
28.
go back to reference Price A, Janssens A, Woodley AL, Allwood M, Ford T (2018) Review: experiences of healthcare transitions for young people with attention deficit hyperactivity disorder: a systematic review of qualitative research. Child Adolesc Mental Health 24:113–122CrossRef Price A, Janssens A, Woodley AL, Allwood M, Ford T (2018) Review: experiences of healthcare transitions for young people with attention deficit hyperactivity disorder: a systematic review of qualitative research. Child Adolesc Mental Health 24:113–122CrossRef
29.
go back to reference Ichikura YOK (2014) Efficacy and acceptability of group cognitive behavioral therapy for depression: a systematic review and meta-analysis. J Affect Disord 164:155–164CrossRef Ichikura YOK (2014) Efficacy and acceptability of group cognitive behavioral therapy for depression: a systematic review and meta-analysis. J Affect Disord 164:155–164CrossRef
30.
go back to reference Andrews G, Cuijpers P, Craske MG, McEvoy P, Titov N (2010) Computer therapy for the anxiety and depressive disorders is effective, acceptable and practical health care: a meta-analysis. PLoS ONE 5(10):e13196CrossRef Andrews G, Cuijpers P, Craske MG, McEvoy P, Titov N (2010) Computer therapy for the anxiety and depressive disorders is effective, acceptable and practical health care: a meta-analysis. PLoS ONE 5(10):e13196CrossRef
32.
go back to reference Mclean N, Marshall LA (2010) A front line police perspective of mental health issues and services. Crim Behav Mental Health 20(1):62–71CrossRef Mclean N, Marshall LA (2010) A front line police perspective of mental health issues and services. Crim Behav Mental Health 20(1):62–71CrossRef
33.
go back to reference Roberts JH, Crosland A, Fulton J (2013) “I think this is maybe our Achilles heel…” exploring GPs’ responses to young people presenting with emotional distress in general practice: a qualitative study. BMJ Open 3(9):e002927CrossRef Roberts JH, Crosland A, Fulton J (2013) “I think this is maybe our Achilles heel…” exploring GPs’ responses to young people presenting with emotional distress in general practice: a qualitative study. BMJ Open 3(9):e002927CrossRef
34.
go back to reference Michail M, Tait L, Churchill D (2017) General practitioners’ clinical expertise in managing suicidal young people: implications for continued education. Prim Health Care Res Dev 18(5):419–428CrossRef Michail M, Tait L, Churchill D (2017) General practitioners’ clinical expertise in managing suicidal young people: implications for continued education. Prim Health Care Res Dev 18(5):419–428CrossRef
35.
go back to reference Tatlow-Golden M, Prihodova L, Gavin B, Cullen W, McNicholas F (2016) What do general practitioners know about ADHD? Attitudes and knowledge among first-contact gatekeepers: systematic narrative review. BMC Fam Pract 17(1):129CrossRef Tatlow-Golden M, Prihodova L, Gavin B, Cullen W, McNicholas F (2016) What do general practitioners know about ADHD? Attitudes and knowledge among first-contact gatekeepers: systematic narrative review. BMC Fam Pract 17(1):129CrossRef
36.
go back to reference Newlove-Delgado T, Ford TJ, Hamilton W, Stein K, Ukoumunne OC (2018) Prescribing of medication for attention deficit hyperactivity disorder among young people in the clinical practice research datalink 2005–2013: analysis of time to cessation. Eur Child Adolesc Psychiatry 27(1):29–35CrossRef Newlove-Delgado T, Ford TJ, Hamilton W, Stein K, Ukoumunne OC (2018) Prescribing of medication for attention deficit hyperactivity disorder among young people in the clinical practice research datalink 2005–2013: analysis of time to cessation. Eur Child Adolesc Psychiatry 27(1):29–35CrossRef
37.
go back to reference Newlove-Delgado T, Blake S, Ford T, Janssens A (2019) Young people with attention deficit hyperactivity disorder in transition from child to adult services: a qualitative study of the experiences of general practitioners in the UK. BMC Fam Pract 20(1):1–8CrossRef Newlove-Delgado T, Blake S, Ford T, Janssens A (2019) Young people with attention deficit hyperactivity disorder in transition from child to adult services: a qualitative study of the experiences of general practitioners in the UK. BMC Fam Pract 20(1):1–8CrossRef
38.
go back to reference Novick G (2008) Is there a bias against telephone interviews in qualitative research? Res Nurs Health 31(4):391–398CrossRef Novick G (2008) Is there a bias against telephone interviews in qualitative research? Res Nurs Health 31(4):391–398CrossRef
Metadata
Title
“I’m just a long history of people rejecting referrals” experiences of young people who fell through the gap between child and adult mental health services
Authors
Rebecca Appleton
Farah Elahi
Helena Tuomainen
Alastair Canaway
Swaran P. Singh
Publication date
01-03-2021
Publisher
Springer Berlin Heidelberg
Published in
European Child & Adolescent Psychiatry / Issue 3/2021
Print ISSN: 1018-8827
Electronic ISSN: 1435-165X
DOI
https://doi.org/10.1007/s00787-020-01526-3

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