Skip to main content

Advertisement

SpringerLink
Log in

Facilitators and Barriers to Service User Involvement in Mental Health Guidelines: Lessons from The Netherlands

  • Original Article
  • Published:
Administration and Policy in Mental Health and Mental Health Services Research Aims and scope Submit manuscript

Abstract

This study is the first in-depth qualitative study of service user involvement in the development of multidisciplinary mental health guidelines in the Netherlands. The study comprised a desk study of guidelines (n = 12) and case studies of service user involvement in five guidelines using document analysis, interviews (n = 24) and observations. The desk study shows that all multidisciplinary mental health guidelines have taken service user perspectives into account to some extent. The five guideline case studies led to the identification of ten main themes. Findings will assist guideline developers in making early, informed decisions on involving service users effectively.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  1. We use the term ‘service user representatives’ to refer to service users as well as non-service users (for example family members or employees of service user organisations) who represent the service users’ perspectives in the guideline development process.

  2. For the guideline on Employment and Severe Mental Illness, the researchers had good access to the guideline development process and were able to monitor the whole process. Because of this it was possible to conduct more interviews for this case study than for the other case studies.

References

  • Beresford, P. (2002). User involvement in research and evaluation: Liberation or regulation? Social Policy and Society, 1(2), 95–105. doi:10.1017/S1474746402000222.

    Article  Google Scholar 

  • Boivin, A., Currie, K., Fervers, B., Gracia, J., James, M., Marshall, C., et al. (2010). Patient and public involvement in clinical guidelines: International experiences and future perspectives. BMJ Quality & Safety, 19(5), e22. doi:10.1136/qshc.2009.034835.

    Article  Google Scholar 

  • Boivin, A., & Légaré, F. (2007). Public involvement in guideline development. Canadian Medical Association Journal, 176(9), 1308–1309. doi:10.1503/cmaj.1060241.

    Article  PubMed  PubMed Central  Google Scholar 

  • Broerse, J.E.W., van der Ham, L., van Veen, S., Pittens, C., van Tulder, M. (2010). Inventarisatie patiëntenparticipatie bij richtlijnontwikkeling.Onderzoeksrapport. (Inventory Patient Participation in Guideline Development. Research Report, in Dutch) Amsterdam: Athena Instituut, Vrije Universiteit Amsterdam.

  • Corrigan, P. W., & Matthews, A. K. (2003). Stigma and disclosure: Implications for coming out of the closet. Journal of Mental Health, 12, 235–248.

    Article  Google Scholar 

  • Dalgin, R. S., & Gilbride, D. (2003). Perspectives of people with psychiatric disabilities on employment disclosure. Psychiatric Rehabilitation Journal, 26, 306–310.

    Article  PubMed  Google Scholar 

  • Díaz Del Campo, P., Gracia, J., Blasco, J. A., & Andradas, E. (2011). A strategy for patient involvement in clinical practice guidelines: Methodological approaches. BMJ Quality & Safety, 20(9), 779–784. doi:10.1136/bmjqs.2010.049031.

    Article  Google Scholar 

  • Franks, M. (2011). Pockets of participation: Revisiting child-centred participation research. Children and Society, 25(1), 15–25. doi:10.1111/j.1099-0860.2009.00258.x.

    Article  Google Scholar 

  • Franx, G., Niesink, P., Swinkels, J., Burgers, J., Wensing, M., & Grol, R. (2011). Ten years of multidisciplinary mental health guidelines in the Netherlands. International Review of Psychiatry, 23(4), 371–378. doi:10.3109/09540261.2011.606538.

    Article  PubMed  Google Scholar 

  • Jarrett, L. & Patient Involvement Unit (PIU). (2004). A report on a study to evaluate patient/carer membership of the first NICE Guideline Development. London: National Institute for Clinical Excellence (NICE).

  • Kelson, M. (2001). Commissioned papers patient involvement in clinical guideline development: Where are we now? The Journal of Clinical Governance, 9(4), 169–174.

    Google Scholar 

  • Kelson, M. (2005). The NICE patient involvement unit. Evidence-based Healthcare and Public Health, 9(4), 304–307. doi:10.1016/j.ehbc.2005.05.013.

    Article  Google Scholar 

  • Kendall, T., Crawford, M. J., Taylor, C., Whittington, C., & Rose, D. (2012). Improving the experience of care for adults using NHS mental health services: Summary of NICE guidance. BMJ, 344, e1089. doi:10.1136/bmj.e1089.

    Article  PubMed  Google Scholar 

  • Lanza, M. L., & Ericsson, A. (2000). Consumer contributions in developing clinical practice guidelines. Journal of Nursing Care Quality, 14(2), 33–40.

    Article  PubMed  CAS  Google Scholar 

  • Légaré, F., Boivin, A., van der Weijden, T., Pakenham, C., Burgers, J., Légaré, J., et al. (2011). Patient and public involvement in clinical practice guidelines: A knowledge synthesis of existing programs. Medical Decision Making, 31(6), E45–E74. doi:10.1177/0272989X11424401.

    Article  PubMed  Google Scholar 

  • National Steering Group for Multidisciplinary Guideline Development in Mental Health (NSGMH), & Trimbos Institute. (2012). GGZ-Richtlijnen [Mental Health Guidelines, in Dutch]. Retrieved from: http://www.ggzrichtlijnen.nl.

  • Nilsen, E. S., Myrhaug, H. T., Johansen, M., Oliver, S., & Oxman, A. D. (2006). Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database of Systematic Reviews, (3). doi:10.1002/14651858.CD004563.pub2.

  • Owens, D. K. (1998). Patient preferences and the development of practice guidelines. Spine, 23(9), 1073–1179.

    Article  PubMed  CAS  Google Scholar 

  • Renfrew, M. J., Dyson, L., Herbert, G., McFadden, A., McCormick, F., Thomas, J., et al. (2008). Developing evidence-based recommendations in public health—incorporating the views of practitioners, service users and user representatives. Health Expectations, 11(1), 3–15. doi:10.1111/j.1369-7625.2007.00471.x.

    Article  PubMed  Google Scholar 

  • Rogers, W. A. (2002). Are guidelines ethical? Some considerations for general practice. The British Journal of General Practice, 52(481), 663–668.

    PubMed  PubMed Central  Google Scholar 

  • Rose, D. (2003). Collaborative research between users and professionals: peaks and pitfalls. Psychiatric Bulletin, 27(11), 404–406. doi:10.1192/pb.27.11.404.

    Article  Google Scholar 

  • Sackett, D. L., Rosenberg, W. M. C., Gray, J. A. M., Haynes, R. B., & Richardson, W. S. (1996). Evidence based medicine: What it is and what it isn’t. BMJ, 312(7023), 71–72. doi:10.1136/bmj.312.7023.71.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  • Sinnema, H., Franx, G., van ‘t Land, H. (2009). Trendrapportage GGz 2009. Multidisciplinaire richtlijnen in de GGz. Themarapportage. [Reporting Trends in Mental Healthcare 2009. Multidisciplinary Guidelines in Mental Healthcare. Report Themes, in Dutch]. Utrecht: Trimbos-Instituut.

  • Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage.

  • Telford, R., & Faulkner, A. (2004). Learning about service user involvement in mental health research. Journal of Mental Health, 13(6), 549–559. doi:10.1080/09638230400017137.

    Article  Google Scholar 

  • Trivedi, P., & Wykes, T. (2002). From passive subjects to equal partners: Qualitative review of user involvement in research. The British Journal of Psychiatry, 181(6), 468–472. doi:10.1192/bjp.181.6.468.

    Article  PubMed  Google Scholar 

  • van de Bovenkamp, H. M., & Trappenburg, M. J. (2009). Reconsidering patient participation in guideline development. Health Care Analysis HCA, 17(3), 198–216. doi:10.1007/s10728-008-0099-3.

    Article  Google Scholar 

  • van Wersch, A., & Eccles, M. (2001). Involvement of consumers in the development of evidence based clinical guidelines: Practical experiences from the North of England evidence based guideline development programme. Quality in Health Care, 10(1), 10–16.

    Article  PubMed  PubMed Central  Google Scholar 

  • van Wersch, S.F.M., & van den Akker, P.A.M. (2005) Ervaringskennis is geen kennis!? Cliëntenparticipatie bij multidisciplinaire richtlijnontwikkeling in de GGZ. Eindrapportage. [Experience-based knowledge is no knowledge!?Client Participation in Multidisciplinary Guideline Development in Mental Health. Final Report, in Dutch]. Utrecht: Trimbos Instituut.

Download references

Acknowledgments

This study was funded by The Netherlands Research Organisation for Health Research and Development (ZonMW). We wish to thank the Trimbos Institute, the GDG members and the interviewees for their cooperation and for providing us with a platform for conducting this research.

Author information

Authors and Affiliations

  1. Athena Institute, VU University Amsterdam, De Boelelaan 1085, 1081 HV, Amsterdam, The Netherlands

    Alida J. van der Ham, Laura S. Shields, Roddy van der Horst & Jacqueline E. W. Broerse

  2. Department of Health Sciences, VU University Amsterdam, Amsterdam, The Netherlands

    Maurits W. van Tulder

Authors
  1. Alida J. van der Ham
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Laura S. Shields
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Roddy van der Horst
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jacqueline E. W. Broerse
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Maurits W. van Tulder
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Alida J. van der Ham.

Rights and permissions

Reprints and permissions

About this article

Cite this article

van der Ham, A.J., Shields, L.S., van der Horst, R. et al. Facilitators and Barriers to Service User Involvement in Mental Health Guidelines: Lessons from The Netherlands. Adm Policy Ment Health 41, 712–723 (2014). https://doi.org/10.1007/s10488-013-0521-5

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10488-013-0521-5

Keywords

Search

Navigation