Community Mental Health Journal

, Volume 49, Issue 6, pp 675–685 | Cite as

Service User and Family Carer Involvement in Mental Health Care: Divergent Views

Original Paper

Abstract

This study assessed differences between service users’, family carers’ and mental healthcare providers’ perceptions on service user and family carer involvement in mental healthcare. We conducted questionnaires in care networks for persons with serious and persistent mental illness, among 111 service users, 73 family carers and 216 mental healthcare providers. Many aspects of service user and family carer involvement are achieved to satisfactory levels while other aspects are scarcely realized. Service users and mental healthcare providers perceive family carer involvement as less important and realized than service user involvement. Family carers hold more favorable views on the importance and realization of involvement than do mental healthcare providers. The implementation of stakeholders’ involvement in healthcare is ongoing. Notwithstanding great efforts, service users’ and family carers’ involvement preferences are not yet fully considered. Developing procedures, training and monitoring cycles regarding involvement may enhance this situation.

Keywords

Service user involvement Family carer involvement Stakeholder perspectives 

References

  1. Anthony, P., & Crawford, P. (2000). Service user involvement in care planning: The mental health nurse’s perspective. Journal of Psychiatric and Mental Health Nursing, 7, 425–434.PubMedCrossRefGoogle Scholar
  2. Beresford, P. (2007). User involvement, research and health inequalities: Developing new directions. Health and Social Care in the Community, 15, 306–312.PubMedCrossRefGoogle Scholar
  3. Bleyen, K., Vertommen, H., & Van Audenhove, C. (1998). A negotiation approach to systematic treatment selection: An evaluation of its impact on the initial phase of psychotherapy. European Journal of Psychological Assessment, 14, 14–25.CrossRefGoogle Scholar
  4. Cawston, P. G., & Barbour, R. S. (2003). Clients or citizens? Some considerations for primary care organisations. British Journal of General Practice, 53, 716–722.PubMedGoogle Scholar
  5. Cleary, M., Freeman, A., & Walter, G. (2006). Carer participation in mental health service delivery. International Journal of Mental Health Nursing, 15, 189–194.PubMedCrossRefGoogle Scholar
  6. Connor, H. (1999). Collaboration or chaos: A consumer perspective. Australian and New Zealand Journal of Mental Health Nursing, 8, 79–85.PubMedCrossRefGoogle Scholar
  7. De Groof, M., Bianchi, J., Moulin, D., Taeymans, S., Enejari, K., Wirtgen, M., et al. (2010). Ithaca: Een monitoring van de mensenrechten en algemene gezondheidszorg in België. Leuven: LUCAS.Google Scholar
  8. de Haan, L., van Raaij, B., van den Berg, R., Jager, M., Houweling, P., Stockmann, M., et al. (2001). Preferences for treatment during a first psychotic episode. European Psychiatry, 16, 83–89.PubMedCrossRefGoogle Scholar
  9. de Haes, H. C. J. M. (2006). Dilemmas in patient centeredness and shared decision making: A case for vulnerability. Patient Education and Counseling, 62, 291–298.PubMedCrossRefGoogle Scholar
  10. Felton, A., & Stickley, T. (2004). Pedagogy, power and service user involvement. Journal of Psychiatric and Mental Health Nursing, 11, 89.PubMedCrossRefGoogle Scholar
  11. Florin, J., Ehrenberg, A., & Ehnfors, M. (2006). Patient participation in clinical decision-making in nursing: A comparative study of nurses’ and patients’ perceptions. Journal of Clinical Nursing, 15, 1498–1508.PubMedCrossRefGoogle Scholar
  12. Frisby, R. (2001). User involvement in mental health branch education: Client review presentations. Nurse Education Today, 21, 663–669.PubMedCrossRefGoogle Scholar
  13. Glasby, J., Lester, H., Briscoe, J., Clark, M., Rose, S., & England, L. (2003). User involvement. Cases for change. Leeds: National Institute for Mental Health in England.Google Scholar
  14. Gordon, S. (2005). The role of the consumer in the leadership and management of mental health services. Australasian Psychiatry, 13, 362.PubMedGoogle Scholar
  15. Hickey, G., & Kipping, C. J. (1998). Exploring the concept of user involvement in mental health through a participation continuum. Journal of Clinical Nursing, 7, 83–88.PubMedCrossRefGoogle Scholar
  16. Huyghe, L. (2008). Nota CGV 2012/208. Rijksdienst voor Ziekte- en Invaliditeitsuitkering [National Institute for Health and Disability Insurance].Google Scholar
  17. Huyghe, L. (2009). Nota CGV 2012/228. Rijksdienst voor Ziekte- en Invaliditeitsuitkering [National Institute for Health and Disability Insurance].Google Scholar
  18. Kent, H., & Read, J. (1998). Measuring consumer participation in mental health services: Are attitudes related to professional orientation? International Journal of Social Psychiatry, 44, 295.PubMedCrossRefGoogle Scholar
  19. Kiesler, D. J., & Auerbach, S. M. (2006). Optimal matches of patient preferences for information, decision-making and interpersonal behavior: Evidence, models and interventions. Patient Education and Counseling, 61, 319–341.PubMedCrossRefGoogle Scholar
  20. Kwaliteitsinstituut voor de gezondheidszorg CBO, Provinciaal Patiënten/Consumenten Platform Utrecht, & Nederlandse Patiënten Consumenten Federatie (2006). Patiënten betrekken bij de zorg in het ziekenhuis. Een handboek [Involving patients in hospital care. A manual]. http://www.cbo.nl/Downloads/83/pp%20handboek%20-%20versie%201.pdf [On-line].
  21. Lammers, J., & Happell, B. (2003). Consumer participation in mental health services: Looking from a consumer perspective. Journal of Psychiatric and Mental Health Nursing, 10, 385.PubMedCrossRefGoogle Scholar
  22. Linhorst, D. M., Eckert, A., & Hamilton, G. (2005). Promoting participation in organization decision making by clients with severe mental illness. Social Work, 50, 21–30.PubMedCrossRefGoogle Scholar
  23. Lloyd, C., & King, R. (2003). Consumer and carer participation in mental health services. Australasian Psychiatry, 11, 180–184.CrossRefGoogle Scholar
  24. McCann, T. V., Baird, J., Clark, E., & Lu, S. (2008). Mental health professionals’ attitudes towards consumer participation in inpatient units. Journal of Psychiatric and Mental Health Nursing, 15, 10–16.PubMedCrossRefGoogle Scholar
  25. 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: Protocols.Google Scholar
  26. Pagett, J. (1994). Listening to user views: An out patient user panel in Llanelli and Dinefwr NHS trust. CCUFLINK: The bulletin of the Community Consultation and User Feedback Unit, 4, 9.Google Scholar
  27. Pilgrim, D., & Waldron, L. (1998). User involvement in mental health service development: How far can it go? Journal of Mental Health, 7, 95.CrossRefGoogle Scholar
  28. Rose, D., Fleischmann, P., & Wykes, T. (2008). What are mental health service users’ priorities for research in the UK? Journal of Mental Health, 17, 520–530.CrossRefGoogle Scholar
  29. Round, A., Bray, C., Polak, S., & Graham, L. (1995). Divergent views—Patient, carer and staff perceptions of diagnosis and reasons for psychiatric admission to a district general hospital. International Journal of Social Psychiatry, 41, 210–216.PubMedCrossRefGoogle Scholar
  30. Shepherd, G., Murray, A., & Muijen, M. (1994). Relative values: The differing views of users, family carers and professionals on services for people with schizophrenia in the community. London: The Sainsbury Centre for Mental Health.Google Scholar
  31. Simpson, E. L., & House, A. (2003). User and carer involvement in mental health services: From rhetoric to science. British Journal of Psychiatry, 183, 89–91.PubMedCrossRefGoogle Scholar
  32. Storm, M., & Davidson, L. (2010). Inpatients’ and providers’ experiences with user involvement in inpatient care. Psychiatric Quarterly, 81, 111–125.PubMedCrossRefGoogle Scholar
  33. Storm, M., Hausken, K., & Mikkelsen, A. (2010). User involvement in in-patient mental health services: Operationalisation, empirical testing, and validation. Journal of Clinical Nursing, 19, 1897–1907.PubMedCrossRefGoogle Scholar
  34. Stringer, B., Van Meijel, B., De Vree, W., & Van der Bijl, J. (2008). User involvement in mental health care: The role of nurses. A literature review. Journal of Psychiatric and Mental Health Nursing, 15, 678–683.PubMedCrossRefGoogle Scholar
  35. Tambuyzer, E. (2012). Eén verhaal, drie visies. Patiënten, familieleden en hulpverleners over participatie in de geestelijke gezondheidszorg [One story, three visions. Service users, family members and service providers about involvement in mental health care]. Unpublished doctoral dissertation, KU Leuven, Belgium.Google Scholar
  36. Tambuyzer, E., Pieters, G., & Van Audenhove, Ch. (2011). Patient involvement in mental health care: One size does not fit all. Health Expectations. doi:10.1111/j.1369-7625.2011.00743-x.
  37. Van Audenhove, C., Van Humbeeck, G., Spruytte, N., Storms, G., De Hert, M., Heyrman, J., et al. (2001). The Care Perception Questionnaire. An instrument for the assessment of the perspective of patients, family members, and professionals on psychiatric rehabilitation. European Journal of Psychological Assessment, 17, 120–129.CrossRefGoogle Scholar
  38. Van Audenhove, C., & Vertommen, H. (2000). A negotiation approach to intake and treatment choice. Journal of Psychotherapy Integration, 10, 287–299.CrossRefGoogle Scholar
  39. van de Bovenkamp, H. M., & Trappenburg, M. J. (2009). Reconsidering patient participation in guideline development. Health Care Analysis, 17, 198–216.PubMedCrossRefGoogle Scholar
  40. Van Weeghel, J., Van Audenhove, C., Colucci, M., Garanis-Papadatos, T., Liégois, A., McCulloch, A., et al. (2005). The components of good community care for people with severe mental illnesses: Views of stakeholders in five European countries. Psychiatric Rehabilitation Journal, 28, 274–281.PubMedCrossRefGoogle Scholar
  41. Ward, P. R., Barber, R., Armitage, C. J., Boote, J. D., Cooper, C. L., & Jones, G. (2010). Critical perspectives on ‘consumer involvement’ in health research: Epistemological dissonance and the know-do gap. Journal of Sociology, 46, 63–82.CrossRefGoogle Scholar
  42. Warne, T., & McAndrew, S. (2007). Passive patient or engaged expert? Using a Ptolemaic approach to enhance mental health nurse education and practice. International Journal of Mental Health Nursing, 16, 224–229.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  1. 1.LUCAS, Centre for Care Research and ConsultancyKU LeuvenLeuvenBelgium

Personalised recommendations