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01-12-2013 | Original Paper

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

Authors: Else Tambuyzer, Chantal Van Audenhove

Published in: Community Mental Health Journal | Issue 6/2013

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.

Two family carers did not provide their age.

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.PubMedCrossRef

Beresford, P. (2007). User involvement, research and health inequalities: Developing new directions. Health and Social Care in the Community, 15, 306–312.PubMedCrossRef

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.CrossRef

Cawston, P. G., & Barbour, R. S. (2003). Clients or citizens? Some considerations for primary care organisations. British Journal of General Practice, 53, 716–722.PubMed

Cleary, M., Freeman, A., & Walter, G. (2006). Carer participation in mental health service delivery. International Journal of Mental Health Nursing, 15, 189–194.PubMedCrossRef

Connor, H. (1999). Collaboration or chaos: A consumer perspective. Australian and New Zealand Journal of Mental Health Nursing, 8, 79–85.PubMedCrossRef

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.

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.PubMedCrossRef

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.PubMedCrossRef

Felton, A., & Stickley, T. (2004). Pedagogy, power and service user involvement. Journal of Psychiatric and Mental Health Nursing, 11, 89.PubMedCrossRef

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.PubMedCrossRef

Frisby, R. (2001). User involvement in mental health branch education: Client review presentations. Nurse Education Today, 21, 663–669.PubMedCrossRef

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.

Gordon, S. (2005). The role of the consumer in the leadership and management of mental health services. Australasian Psychiatry, 13, 362.PubMed

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.PubMedCrossRef

Huyghe, L. (2008). Nota CGV 2012/208. Rijksdienst voor Ziekte- en Invaliditeitsuitkering [National Institute for Health and Disability Insurance].

Huyghe, L. (2009). Nota CGV 2012/228. Rijksdienst voor Ziekte- en Invaliditeitsuitkering [National Institute for Health and Disability Insurance].

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.PubMedCrossRef

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.PubMedCrossRef

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].

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.PubMedCrossRef

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.PubMedCrossRef

Lloyd, C., & King, R. (2003). Consumer and carer participation in mental health services. Australasian Psychiatry, 11, 180–184.CrossRef

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.PubMedCrossRef

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.

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.

Pilgrim, D., & Waldron, L. (1998). User involvement in mental health service development: How far can it go? Journal of Mental Health, 7, 95.CrossRef

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.CrossRef

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.PubMedCrossRef

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.

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.PubMedCrossRef

Storm, M., & Davidson, L. (2010). Inpatients’ and providers’ experiences with user involvement in inpatient care. Psychiatric Quarterly, 81, 111–125.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.

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.

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.CrossRef

Van Audenhove, C., & Vertommen, H. (2000). A negotiation approach to intake and treatment choice. Journal of Psychotherapy Integration, 10, 287–299.CrossRef

van de Bovenkamp, H. M., & Trappenburg, M. J. (2009). Reconsidering patient participation in guideline development. Health Care Analysis, 17, 198–216.PubMedCrossRef

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.PubMedCrossRef

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.CrossRef

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.PubMedCrossRef

Title: Service User and Family Carer Involvement in Mental Health Care: Divergent Views
Authors: Else Tambuyzer
Chantal Van Audenhove
Publication date: 01-12-2013
Publisher: Springer US
Published in: Community Mental Health Journal / Issue 6/2013
Print ISSN: 0010-3853
Electronic ISSN: 1573-2789
DOI: https://doi.org/10.1007/s10597-012-9574-2

At a glance: The STEP trials

Springer Medicine

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

Abstract

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Abstract

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