Top

Child and Adolescent Psychiatry and Mental Health

Published in:

Open Access 01-12-2020 | Research article

Challenges in recruiting and retaining adolescents with abuse-related posttraumatic stress disorder: lessons learned from a randomized controlled trial

Authors: Anna Vogel, Hannah Comtesse, Rita Rosner

Published in: Child and Adolescent Psychiatry and Mental Health | Issue 1/2020

Abstract

Background

Research on effective recruitment and retention strategies for adolescents and young adults suffering from posttraumatic stress disorder is scarce. The aim of the current study was to provide data on recruitment sources, barriers, and facilitators for participation in a randomized controlled trial for young individuals with histories of sexual and/or physical abuse.

Methods

Study participants aged 14 to 21 were asked to complete a checklist on individual sources of recruitment, barriers, and facilitators for participation in the trial. Fifty-three out of the 80 study participants who were contacted completed the checklist (66.3%).

Results

Most respondents reported multiple recruitment sources, with online and media advertising search strategies indicated most frequently (45.4% of all mentions), followed by practitioner-referred sources (38.7%). Respondents’ reported barriers included additional demands of the trial (60.3%), followed by distress caused by having to talk about painful topics (15.5%). The most frequently indicated facilitators were the organizational setting (55.1%) and monetary incentives (22.2%), followed by social support (12.0%) and non-monetary incentives (10.2%). No significant differences were observed between adolescent and young adult respondents with the exception that adolescents reported significantly more frequently that they had learned about the trial from their caregiver.

Conclusions

Our findings permit the formulation of recommendations for planning and conducting trials with this clientele. Future research is needed on how specific barriers can be effectively overcome.

Available only for authorised users

Fletcher B, Gheorghe A, Moore D, Wilson S, Damery S. Improving the recruitment activity of clinicians in randomised controlled trials: a systematic review. BMJ Open. 2012;2:e000496–e000496. https://doi.org/10.1136/bmjopen-2011-000496.CrossRefPubMedPubMedCentral

McDonald AM, Knight RC, Campbell MK, Entwistle VA, Grant AM, Cook JA, et al. What influences recruitment to randomised controlled trials? a review of trials funded by two UK funding agencies. Trials. 2006;7:9. https://doi.org/10.1186/1745-6215-7-9.CrossRefPubMedPubMedCentral

Sully BGO, Julious SA, Nicholl J. A reinvestigation of recruitment to randomised, controlled, multicenter trials: a review of trials funded by two UK funding agencies. Trials. 2013;14:166. https://doi.org/10.1186/1745-6215-14-166.CrossRefPubMedPubMedCentral

Walters SJ, Dos Anjos Henriques-Cadby IB, Bortolami O, Flight L, Hind D, Jacques RM, et al. Recruitment and retention of participants in randomised controlled trials: a review of trials funded and published by the United Kingdom Health Technology Assessment Programme. BMJ Open. 2017;7:e015276. https://doi.org/10.1136/bmjopen-2016-015276.CrossRefPubMedPubMedCentral

Treweek S, Lockhart P, Pitkethly M, Cook JA, Kjeldstrøm M, Johansen M, et al. Methods to improve recruitment to randomised controlled trials: cochrane systematic review and meta-analysis. BMJ Open. 2013;3:e002360.CrossRef

Watson JM, Torgerson DJ. Increasing recruitment to randomised trials: a review of randomised controlled trials. BMC Med Res Methodol. 2006;6:34. https://doi.org/10.1186/1471-2288-6-34.CrossRefPubMedPubMedCentral

Rendell JM, Merritt RD, Geddes JR. Incentives and disincentives to participation by clinicians in randomised controlled. Cochrane Database Syst Rev. 2007. https://doi.org/10.1002/14651858.mr000021.pub3.CrossRefPubMed

Caldwell PHY, Hamilton S, Tan A, Craig JC. Strategies for increasing recruitment to randomised controlled trials: systematic review. PLoS Med. 2010;7:e1000368. https://doi.org/10.1371/journal.pmed.1000368.CrossRefPubMedPubMedCentral

Mapstone J, Elbourne D, Roberts I. Strategies to improve recruitment to research studies. Cochrane Database Syst Rev. 2007. https://doi.org/10.1002/14651858.mr000013.pub3.CrossRefPubMed

10.

Ross S, Grant A, Counsell C, Gillespie W, Russell I, Prescott R. Barriers to participation in randomised controlled trials: a systematic review. J Clin Epidemiol. 1999;52:1143–56. https://doi.org/10.1016/S0895-4356(99)00141-9.CrossRefPubMed

11.

Brown G, Marshall M, Bower P, Woodham A, Waheed W. Barriers to recruiting ethnic minorities to mental health research: a systematic review. Int J Methods Psychiatr Res. 2014;23:36–48. https://doi.org/10.1002/mpr.1434.CrossRefPubMedPubMedCentral

12.

Woodall A, Morgan C, Sloan C, Howard L. Barriers to participation in mental health research: are there specific gender, ethnicity and age related barriers? BMC Psychiatry. 2010;10:103. https://doi.org/10.1186/1471-244X-10-103.CrossRefPubMedPubMedCentral

13.

Kessler RC. Posttraumatic stress disorder: the burden to the individual and to society. J Clin Psychiatry. 2000;61:4–14.PubMed

14.

Marciniak MD, Lage MJ, Dunayevich E, Russell JM, Bowman L, Landbloom RP, et al. The cost of treating anxiety: the medical and demographic correlates that impact total medical costs. Depress Anxiety. 2005;21:178–84. https://doi.org/10.1002/da.20074.CrossRefPubMed

15.

van den Berk Clark C, Moore R, Secrest S, Tuerk P, Norman S, Myers U, et al. Factors associated with receipt of cognitive-behavioral therapy or prolonged exposure therapy among individuals with PTSD. Psychiatr Serv. 2019;70:703–13. https://doi.org/10.1176/appi.ps.201800408.CrossRef

16.

Australian Centre for Posttraumatic Mental Health. Australian guidelines for the treatment of acute stress disorder and posttraumatic stress disorder. Melbourne: Phoenix Australia; 2013.

17.

ISTSS Guidelines Committee. ISTSS PTSD prevention and treatment guidelines. Methodology and recommendations. 2019. https://www.istss.org/getattachment/Treating-Trauma/New-ISTSS-Prevention-and-Treatment-Guidelines/ISTSS_PreventionTreatmentGuidelines_FNL.pdf.aspx. Accessed 6 Feb 2019.

18.

National Institute for Health and Care Excellence. Post-traumatic stress disorder (NICE guideline NG116). 2018. https://www.nice.org.uk/guidance/ng116/evidence/d-psychological-psychosocial-and-other-nonpharmacological-interventions-for-the-treatment-of-ptsd-in-adults-pdf-6602621008. Accessed 19 Apr 2019.

19.

Koenen KC, Goodwin R, Struening E, Hellman F, Guardino M. Posttraumatic stress disorder and treatment seeking in a national screening sample. J Trauma Stress. 2003;16:5–16. https://doi.org/10.1023/A:1022051009330.CrossRefPubMed

20.

Imel ZE, Laska K, Jakupcak M, Simpson TL. Meta-analysis of dropout in treatments for posttraumatic stress disorder. J Consult Clin Psychol. 2013;81:394–404. https://doi.org/10.1037/a0031474.CrossRefPubMedPubMedCentral

21.

Zayfert C, Deviva JC, Becker CB, Pike JL, Gillock KL, Hayes SA. Exposure utilization and completion of cognitive behavioral therapy for PTSD in a “real world” clinical practice. J Trauma Stress. 2005;18:637–45. https://doi.org/10.1002/jts.20072.CrossRefPubMed

22.

Kantor V, Knefel M, Lueger-Schuster B. Perceived barriers and facilitators of mental health service utilization in adult trauma survivors: a systematic review. Clin Psychol Rev. 2017;52:52–68. https://doi.org/10.1016/j.cpr.2016.12.001.CrossRefPubMed

23.

Choi KR, Briggs EC, Seng JS, Graham-Bermann SA, Munro-Kramer ML, Ford JD. Service usage typologies in a clinical sample of trauma-exposed adolescents: a latent class analysis. Psychol Trauma. 2018;10:652–61. https://doi.org/10.1037/tra0000340.CrossRefPubMed

24.

Matulis S, Resick PA, Rosner R, Steil R. Developmentally adapted cognitive processing therapy for adolescents suffering from posttraumatic stress disorder after childhood sexual or physical abuse: a pilot study. Clin Child Fam Psychol Rev. 2014;17:173–90. https://doi.org/10.1007/s10567-013-0156-9.CrossRefPubMed

25.

Sauter FM, Heyne D, Michiel Westenberg P. Cognitive behavior therapy for anxious adolescents: developmental influences on treatment design and delivery. Clin Child Fam Psychol Rev. 2009;12:310–35. https://doi.org/10.1007/s10567-009-0058-z.CrossRefPubMedPubMedCentral

26.

Schoeppe S, Oliver M, Badland HM, Burke M, Duncan MJ. Recruitment and retention of children in behavioral health risk factor studies: rEACH strategies. Int J Behav Med. 2014;21:794–803. https://doi.org/10.1007/s12529-013-9347-5.CrossRefPubMed

27.

Brownstone L, Anderson K, Beenhakker J, Lock J, Le Grange D. Recruitment and retention in an adolescent anorexia nervosa treatment trial. Int J Eat Disord. 2012;45:812–5. https://doi.org/10.1002/eat.22010.CrossRefPubMedPubMedCentral

28.

May DE, Hallin MJ, Kratochvil CJ, Puumala SE, Smith LS, Reinecke MA, et al. Factors associated with recruitment and screening in the Treatment for Adolescents With Depression Study (TADS). J Am Acad Child Adolesc Psychiatry. 2007;46:801–10. https://doi.org/10.1097/CHI.0b013e3180582019.CrossRefPubMed

29.

Amon KL, Campbell AJ, Hawke C, Steinbeck K. Facebook as a recruitment tool for adolescent health research: a systematic review. Acad Pediatr. 2014;14:439–447.e4. https://doi.org/10.1016/j.acap.2014.05.049.CrossRefPubMed

30.

Parrish DE, Duron JF, Oxhandler HK. Adolescent recruitment strategies: lessons learned from a university-based study of social anxiety. Soc Work Res. 2017;41:213–20. https://doi.org/10.1093/swr/svx016.CrossRef

31.

Fried AL, Fisher CB. Emerging ethical and legal issues in clinical child and adolescent psychology. In: Ollendick TH, White SW, White BA, editors. The Oxford handbook of clinical child and adolescent psychology. Oxford: Oxford University Press; 2018. p. 107–19.

32.

Diviak KR, Curry SJ, Emery SL, Mermelstein RJ. Human participants challenges in youth tobacco cessation research: researchers’ perspectives. Ethics Behav. 2004;14:321–34.CrossRef

33.

Jud A, Lips U, Landolt MA. Methodological challenges in following up patients of a hospital child protection team: is there a recruitment bias? Child Adolesc Psychiatry Ment Health. 2010;4:27. https://doi.org/10.1186/1753-2000-4-27.CrossRefPubMedPubMedCentral

34.

Reardon T, Harvey K, Baranowska M, O’Brien D, Smith L, Creswell C. What do parents perceive are the barriers and facilitators to accessing psychological treatment for mental health problems in children and adolescents? a systematic review of qualitative and quantitative studies. Eur Child Adolesc Psychiatry. 2017;26:623–47. https://doi.org/10.1007/s00787-016-0930-6.CrossRefPubMedPubMedCentral

35.

Self-Brown S, Tiwari A, Lai B, Roby S, Kinnish K. Impact of caregiver factors on youth service utilization of trauma-focused cognitive behavioral therapy in a community setting. J Child Fam Stud. 2016;25:1871–9. https://doi.org/10.1007/s10826-015-0354-9.CrossRef

36.

Koelch M, Singer H, Prestel A, Burkert J, Schulze U, Fegert JM. “…because I am something special” or “I think I will be something like a guinea pig”: information and assent of legal minors in clinical trials—assessment of understanding, appreciation and reasoning. Child Adolesc Psychiatry Ment Health. 2009;3:343. https://doi.org/10.1186/1753-2000-3-2.CrossRef

37.

de Haan AM, Boon AE, de Jong JTVM, Hoeve M, Vermeiren RRJM. A meta-analytic review on treatment dropout in child and adolescent outpatient mental health care. Clin Psychol Rev. 2013;33:698–711. https://doi.org/10.1016/j.cpr.2013.04.005.CrossRefPubMed

38.

Rich BA, Hensler M, Rosen HR, Watson C, Schmidt J, Sanchez L, et al. Attrition from therapy effectiveness research among youth in a clinical service setting. Adm Policy Ment Health. 2014;41:343–52. https://doi.org/10.1007/s10488-013-0469-5.CrossRefPubMed

39.

Fraynt R, Ross L, Baker BL, Rystad I, Lee J, Briggs EC. Predictors of treatment engagement in ethnically diverse, urban children receiving treatment for trauma exposure. J Trauma Stress. 2014;27:66–73. https://doi.org/10.1002/jts.21889.CrossRefPubMed

40.

Jensen TK, Holt T, Ormhaug SM, Egeland K, Granly L, Hoaas LC, et al. A randomized effectiveness study comparing trauma-focused cognitive behavioral therapy with therapy as usual for youth. J Clin Child Adolesc Psychol. 2014;43:356–69. https://doi.org/10.1080/15374416.2013.822307.CrossRefPubMed

41.

Scheeringa MS, Weems CF. Randomized placebo-controlled D-cycloserine with cognitive behavior therapy for pediatric posttraumatic stress. J Child Adolesc Psychopharmacol. 2014;24:69–77. https://doi.org/10.1089/cap.2013.0106.CrossRefPubMedPubMedCentral

42.

Wamser-Nanney R, Scheeringa MS, Weems CF. Early treatment response in children and adolescents receiving CBT for trauma. J Pediatr Psychol. 2016;41:128–37. https://doi.org/10.1093/jpepsy/jsu096.CrossRefPubMed

43.

Furimsky I, Cheung AH, Dewa CS, Zipursky RB. Strategies to enhance patient recruitment and retention in research involving patients with a first episode of mental illness. Contem Clin Trials. 2008;29:862–6. https://doi.org/10.1016/j.cct.2008.07.005.CrossRef

44.

Steinbeck K, Baur L, Cowell C, Pietrobelli A. Clinical research in adolescents: challenges and opportunities using obesity as a model. Int J Obes. 2009;33:2–7. https://doi.org/10.1038/ijo.2008.263.CrossRef

45.

Pellerin KA, Costa NM, Weems CF, Dalton RF. An examination of treatment completers and non-completers at a child and adolescent community mental health clinic. Community Ment Health J. 2010;46:273–81. https://doi.org/10.1007/s10597-009-9285-5.CrossRefPubMed

46.

Cusack K, Jonas DE, Forneris CA, Wines C, Sonis J, Middleton JC, et al. Psychological treatments for adults with posttraumatic stress disorder: a systematic review and meta-analysis. Clin Psychol Rev. 2016;43:128–41. https://doi.org/10.1016/j.cpr.2015.10.003.CrossRefPubMed

47.

Lee DJ, Schnitzlein CW, Wolf JP, Vythilingam M, Rasmusson AM, Hoge CW. Psychotherapy versus pharmacotherapy for posttraumatic stress disorder: systemic review and meta-analyses to determine first-line treatments. Depress Anxiety. 2016;33:792–806. https://doi.org/10.1002/da.22511.CrossRefPubMed

48.

Gillies D, Maiocchi L, Bhandari AP, Taylor F, Gray C, O’Brien L. Psychological therapies for children and adolescents exposed to trauma. Cochrane Database Syst Rev. 2016;10:12371.

49.

Gutermann J, Schreiber F, Matulis S, Schwartzkopff L, Deppe J, Steil R. Psychological treatments for symptoms of posttraumatic stress disorder in children, adolescents, and young adults: a meta-analysis. Clin Child Fam Psychol Rev. 2016. https://doi.org/10.1007/s10567-016-0202-5.CrossRefPubMed

50.

Morina N, Koerssen R, Pollet TV. Interventions for children and adolescents with posttraumatic stress disorder: a meta-analysis of comparative outcome studies. Clin Psychol Rev. 2016;47:41–54. https://doi.org/10.1016/j.cpr.2016.05.006.CrossRefPubMed

51.

Vogel A, Rosner R. Lost in transition? evidence-based treatments for adolescents and young adults with posttraumatic stress disorder and results of an uncontrolled feasibility trial evaluating cognitive processing therapy. Clin Child Fam Psychol Rev. 2019;6:201. https://doi.org/10.1007/s10567-019-00305-0.CrossRef

52.

Briere J, Kaltman S, Green BL. Accumulated childhood trauma and symptom complexity. J Trauma Stress. 2008;21:223–6. https://doi.org/10.1002/jts.20317.CrossRefPubMed

53.

Cloitre M, Garvert DW, Brewin CR, Bryant RA, Maercker A. Evidence for proposed ICD-11 PTSD and complex PTSD: a latent profile analysis. Eur J Psychotraumatol. 2013. https://doi.org/10.3402/ejpt.v4i0.20706.CrossRefPubMedPubMedCentral

54.

Wolf EJ, Miller MW, Kilpatrick D, Resnick HS, Badour CL, Marx BP, et al. ICD-11 complex PTSD in US national and veteran samples: prevalence and structural associations with PTSD. Clin Psychol Sci. 2015;3:215–29. https://doi.org/10.1177/2167702614545480.CrossRefPubMed

55.

Foa EB, McLean CP, Capaldi S, Rosenfield D. Prolonged exposure vs supportive counseling for sexual abuse-related PTSD in adolescent girls: a randomized clinical trial. JAMA. 2013;310:2650–7. https://doi.org/10.1001/jama.2013.282829.CrossRefPubMed

56.

Rosner R, Rimane E, Frick U, Gutermann J, Hagl M, Renneberg B, et al. Effect of developmentally adapted cognitive processing therapy for youth with symptoms of posttraumatic stress disorder after childhood sexual and physical abuse. JAMA Psychiatry. 2019;76:484–91. https://doi.org/10.1001/jamapsychiatry.2018.4349.CrossRefPubMedPubMedCentral

57.

Mandarino K. Transitional-age youths: barriers to accessing adult mental health services and the changing definition of adolescence. J Hum Behav Soc Environ. 2014;24:462–74. https://doi.org/10.1080/10911359.2013.835760.CrossRef

58.

Skehan B, Davis M. Aligning mental health treatments with the developmental stage and needs of late adolescents and young adults. Child Adolesc Psychiatr Clin N Am. 2017;26:177–90. https://doi.org/10.1016/j.chc.2016.12.003.CrossRefPubMed

59.

Rosner R, König H-H, Neuner F, Schmidt U, Steil R. Developmentally adapted cognitive processing therapy for adolescents and young adults with PTSD symptoms after physical and sexual abuse: study protocol for a randomized controlled trial. Trials. 2014;15:195. https://doi.org/10.1186/1745-6215-15-195.CrossRefPubMedPubMedCentral

60.

Nader KO, Kriegler JA, Blake DD, Pynoos RS, Newman E, Weather FW. The Clinician-Administered PTSD Scale for Children and Adolescents for DSM-IV (CAPS-CA). White River Junction: National Center for PTSD; 1996.

61.

Steil R, Füchsel G, IBS-KJ. Interviews zu Belastungsstörungen bei Kindern und Jugendlichen. Diagnostik der akuten und der posttraumatischen Belastungsstörung. Göttingen: Hogrefe; 2006.

62.

American Psychiatric Association. Diagnostic and statistical manual of mental disorders, fourth edition, text revision (DSM-IV-TR). Washington, DC: American Psychiatric Association; 2000.CrossRef

63.

First MB, Spitzer RL, Gibbon M, Williams JBW. Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I). New York: Biometric Research Department; 1997.

64.

Wittchen H-U, Zaudig M, Fydrich T. Strukturiertes Klinisches Interview für DSM-IV Achse I: Psychische Störungen. Göttingen: Hogrefe; 1997.

65.

First MB, Gibbon M, Spitzer RL, Williams JBW, Benjamin LS. Structured Clinical Interview for DSM-IV Axis II Personality Disorders (SCID-II). New York: Biometric Research Department; 1994.

66.

Fydrich T, Renneberg B, Schmitz B, Wittchen H-U. Strukturiertes Klinisches Interview für DSM-IV, Achse II: Persönlichkeitsstörungen. Interviewheft. Göttingen: Hogrefe; 1997.

67.

Schneider S, Unnewehr S, Margraf J, editors. Kinder-DIPS für DSM-IV-TR. Diagnostisches Interview bei psychischen Störungen im Kindes- und Jugendalter. 2nd ed. Heidelberg: Springer; 2009.

68.

Wittchen H-U, Pfister H. DIA-X-Interviews: Manual für Screening-Verfahren und Interview; Interviewheft. Frankfurt: Swets and Zeitlinger; 1997.

69.

Bengtsson M. How to plan and perform a qualitative study using content analysis. NursingPlus Open. 2016;2:8–14. https://doi.org/10.1016/j.npls.2016.01.001.CrossRef

Title: Challenges in recruiting and retaining adolescents with abuse-related posttraumatic stress disorder: lessons learned from a randomized controlled trial
Authors: Anna Vogel
Hannah Comtesse
Rita Rosner
Publication date: 01-12-2020
Publisher: BioMed Central
Published in: Child and Adolescent Psychiatry and Mental Health / Issue 1/2020
Electronic ISSN: 1753-2000
DOI: https://doi.org/10.1186/s13034-020-00320-y

At a glance: The STEP trials

Springer Medicine

Challenges in recruiting and retaining adolescents with abuse-related posttraumatic stress disorder: lessons learned from a randomized controlled trial

Abstract

Background

Methods

Results

Conclusions

At a glance: The STEP trials

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 1/2020

Effects of a mental health promotion intervention on mental health of Iranian female adolescents: a school-based study

Medications for sleep disturbance in children and adolescents with depression: a survey of Canadian child and adolescent psychiatrists

Positive intervention for depression and teacher–student relationship in Iranian high school girl students with moderate/mild depression: a pilot randomized controlled trial

The importance of social factors in the association between physical activity and depression in children

School refusal and bullying in children with autism spectrum disorder

The attitudes and feelings of mental health nurses towards adolescents and young adults with nonsuicidal self-injuring behaviors