Relatives’ Experiences of Mental Health Care, Family Burden and Family Stigma: Does Participation in Patient-Appointed Resource Group Assertive Community Treatment (RACT) Make a Difference?

References

• Allerby, K., Sameby, B., Brain, C., Joas, E., Quinlan, P., Sjöström, N., Burns, T., & Waern, M. (2015). Stigma and burden among relatives of persons with schizophrenia: Results from the Swedish COAST study. Psychiatric Services, 66(10), 1020–1026. https://doi.org/https://doi.org/10.1176/appi.ps.201400405
   PubMed Web of Science ®Google Scholar
• Altman, D. (1991). Practical statistics for medical research. Chapman & Hall.
   Google Scholar
• Berglund, N. (Ed.). (2019). Att arbeta med resursgrupper [Working with resource groups] (pp. 78–88). Borell Förlag.
   Google Scholar
• Brain, C., Sameby, B., Allerby, K., Quinlan, P., Joas, E., Lindström, E., Burns, T., & Waern, M. (2014). Stigma, discrimination and medication adherence in schizophrenia: Results from the Swedish COAST study. Psychiatry Research, 220(3), 811–817. https://doi.org/https://doi.org/10.1016/j.psychres.2014.10.016
   PubMed Web of Science ®Google Scholar
• Doody, O., Butler, M. P., Lyons, R., & Newman, D. (2017). Families’ experiences of involvement in care planning in mental health services: An integrative literature review. Journal of Psychiatric and Mental Health Nursing, 24(6), 412–430. https://doi.org/https://doi.org/10.1111/jpm.12369
   PubMed Web of Science ®Google Scholar
• Ewertzon, M., Alvariza, A., Winnberg, E., Leksell, J., Andershed, B., Goliath, I., Momeni, P., Kneck, Å., Skott, M., & Årestedt, K. (2018). Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care. Journal of Advanced Nursing, 74(8), 1839–1697. https://doi.org/https://doi.org/10.1111/jan.13579
   Web of Science ®Google Scholar
• Ewertzon, M., Andershed, B., Svensson, E., & Lützén, K. (2011). Family members’ expectation of the psychiatric healthcare professionals’ approach towards them. Journal of Psychiatric and Mental Health Nursing, 18(2), 146–157. https://doi.org/https://doi.org/10.1111/j.1365-2850.2010.01647.x
   PubMed Web of Science ®Google Scholar
• Ewertzon, M., Cronqvist, A., Lützén, K., & Andershed, B. (2012). A lonely life journey bordered with struggle: Being a sibling of an individual with psychosis. Issues in Mental Health Nursing, 33(3), 157–164. https://doi.org/https://doi.org/10.3109/01612840.2011.633735
   PubMedGoogle Scholar
• Ewertzon, M., Lützén, K., Svensson, E., & Andershed, B. (2010). Family members’ involvement in psychiatric care: Experiences of the healthcare professionals’ approach and feeling of alienation. Journal of Psychiatric and Mental Health Nursing, 17(5), 422–432. https://doi.org/https://doi.org/10.1111/j.1365-2850.2009.01539.x
   PubMed Web of Science ®Google Scholar
• Fallon, I., & Fadden, G. (1993). Integrated mental health care. Cambridge University Press.
   Google Scholar
• Flyckt, L., Löthman, A., Jörgensen, L., Rylander, A., & Koernig, T. (2013). Burden of informal care giving to patients with psychoses: A descriptive and methodological study. International Journal of Social Psychiatry, 59(2), 137–146. https://doi.org/https://doi.org/10.1177/0020764011427239
   PubMed Web of Science ®Google Scholar
• Goodwin, V., & Happell, B. (2007). Consumer and carer participation in mental health care: The carer’s perspective: Part 1—The importance of respect and collaboration. Issues in Mental Health Nursing, 28(6), 607–623. https://doi.org/https://doi.org/10.1080/01612840701354596
   PubMedGoogle Scholar
• Hjärthag, F., Helldin, L., & Norlander, T. (2008). Psychometric properties of the burden inventory for relatives of persons with psychotic disturbances. Psychological Reports, 103(2), 323–335. https://doi.org/https://doi.org/10.2466/pr0.103.2.323-335
   PubMed Web of Science ®Google Scholar
• Hjärthag, F., Persson, K., Ingvarsdotter, K., & Östman, M. (2017). Professional views of supporting relatives of mental health clients with severe mental illness. International Journal of Social Psychiatry, 63(1), 63–69. https://doi.org/https://doi.org/10.1177/0020764016682268
   PubMed Web of Science ®Google Scholar
• Johansson, A., Andershed, B., & Anderzen-Carlsson, A. (2014). Conceptions of mental health care—From the perspective of parents’ of adult children suffering from mental illness. Scandinavian Journal of Caring Sciences, 28(3), 496–504. https://doi.org/https://doi.org/10.1111/scs.12074
   PubMed Web of Science ®Google Scholar
• Johansson, A., Anderzen-Carlsson, A., Ahlin, A., & Andershed, B. (2010). Mothers’ everyday experiences of having an adult child who suffers from long-term mental illness. Issues in Mental Health Nursing, 31(11), 692–699. https://doi.org/https://doi.org/10.3109/01612840.2010.515768
   PubMedGoogle Scholar
• Johansson, A., Anderzen-Carlsson, A., Ahlin, A., & Andershed, B. (2012). Fathers’ everyday experiences of having an adult child who suffers from long-term mental illness. Issues in Mental Health Nursing, 33(2), 109–117. https://doi.org/https://doi.org/10.3109/01612840.2011.627106
   PubMedGoogle Scholar
• Johansson, A., Anderzén-Carlsson, A., & Ewertzon, M. (2019). Parents of adult children with long-term mental disorder: Their experiences of the mental health professionals’ approach and feelings of alienation—A cross sectional study. Archives Psychiatric Nursing, 33(6), 129–137. https://doi.org/https://doi.org/10.1016/j.apnu.2019.10.002
   PubMed Web of Science ®Google Scholar
• Johansson, A., Ewertzon, M., Andershed, B., Anderzen-Carlsson, A., Nasic, S., & Ahlin, A. (2015). Health-related quality of life—From the perspective of mothers and fathers of adult children suffering from long-term mental disorders. Archives of Psychiatric Nursing, 29(3), 180–185. https://doi.org/https://doi.org/10.1016/j.apnu.2015.02.002
   PubMed Web of Science ®Google Scholar
• Katz, J., Medoff, D., Fang, L. J., & Dixon, L. B. (2015). The relationship between the perceived risk of harm by a family member with mental illness and the family experience. Community Mental Health Journal, 51(7), 790–799. https://doi.org/https://doi.org/10.1007/s10597-014-9799-3
   PubMed Web of Science ®Google Scholar
• Lakeman, R. (2008). Family and carer participation in mental health care: Perspectives of consumers and carers in hospital and home care settings. Journal of Psychiatric and Mental Health Nursing, 15(3), 203–211. https://doi.org/https://doi.org/10.1111/j.1365-2850.2007.01213.x
   PubMed Web of Science ®Google Scholar
• Larson, J. E., & Corrigan, P. (2008). The stigma of families with mental illness. Academic Psychiatry, 32(2), 87–91. https://doi.org/https://doi.org/10.1176/appi.ap.32.2.87
   PubMed Web of Science ®Google Scholar
• Malm, U. I., Ivarsson, B., & Allebeck, P. (2014). Durability of the efficacy of integrated care in schizophrenia: A five-year randomized controlled study. Psychiatric Servrices, 65(8), 1054–1057. https://doi.org/https://doi.org/10.1176/appi.ps.201300164
   PubMed Web of Science ®Google Scholar
• Miller, D. I. (2017). Inpatient psychiatric care: Families’ expectations and perceptions of support received from health professionals. Perspectives in Psychiatric Care, 53(4), 350–356. https://doi.org/https://doi.org/10.1111/ppc.12168
   PubMed Web of Science ®Google Scholar
• Nordén, T., Eriksson, A., Kjellgren, A., & Norlander, T. (2012). Involving clients and their relatives and friends in psychiatric care: Case managers’ experiences of training in Resource Group Assertive Community Treatment. PsyCh Journal, 1(1), 15–27. https://doi.org/https://doi.org/10.1002/pchj.1
   PubMedGoogle Scholar
• Nordén, T., Malm, U., & Norlander, T. (2012). Resource Group Assertive Community Treatment (RACT) as a tool of empowerment for clients with severe mental illness: A meta-analysis. Clinical Practice and Epidemiology in Mental Health, 8, 144–151. https://doi.org/https://doi.org/10.2174/1745017901208010144
   PubMedGoogle Scholar
• Östman, M., & Kjellin, L. (2002). Stigma by association: Psychological factors in relatives of people with mental illness. The British Journal of Psychiatry, 181, 494–498. https://doi.org/https://doi.org/10.1192/bjp.181.6.494
   PubMed Web of Science ®Google Scholar
• Östman, M., Wallsten, T., & Kjellin, L. (2005). Family burden and relatives’ participation in psychiatric care: Are the patient’s diagnosis and the relation to the patient of importance? International Journal of Social Psychiatry, 51(4), 291–301. https://doi.org/https://doi.org/10.1177/0020764005057395
   PubMed Web of Science ®Google Scholar
• Piippo, J., & Aaltonen, J. (2009). Mental health and creating safety: The participation of relatives in psychiatric treatment and its significance. Journal of Clinical Nursing, 18(14), 2003–2012. https://doi.org/https://doi.org/10.1111/j.1365-2702.2008.02650.x
   Web of Science ®Google Scholar
• Rowe, J. (2012). Great expectations: A systematic review of the literature on the role of family carers in severe mental illness, and their relationships and engagement with professionals. Journal of Psychiatric and Mental Health Nursing, 19(1), 70–82. https://doi.org/https://doi.org/10.1111/j.1365-2850.2011.01756.x
   PubMed Web of Science ®Google Scholar
• Schön, U. (2009). Kvinnors och mäns återhämtning från psykisk ohälsa [Women’s and men’s recovery from mental illness] [Doctoral dissertation]. Stockholm University.
   Google Scholar
• Schröder, A., Wilde Larsson, B., & Ahlström, G. (2007). Next of kin’s conceptions of the quality of care in the psychiatric setting: A phenomenographic study. International Journal of Mental Health Nursing, 16(5), 307–317. https://doi.org/https://doi.org/10.1111/j.1447-0349.2007.00481.x
   PubMed Web of Science ®Google Scholar
• Siegel, S., & Castellan Jnr, N. (1988). Nonparametric statistics for the behavioural sciences (2nd ed.). McGraw-Hill Book Co.
   Google Scholar
• Stuart, H., Koller, M., & Milev, R. (2008). Appendix: Inventories to measure the scope and impact of stigma experiences from the perspective of those who are stigmatized—Consumer & family versions. In J. Arboleda-Florez and N. Sartorius (Eds.), Understanding the stigma of mental illness: Theory and interventions (pp. 193–204). Wiley.
   Google Scholar
• Svensson, E. (2001). Construction of a single global scale for multi‐item assessments of the same variable. Statistics in Medicine, 20(24), 3831–3846. https://doi.org/https://doi.org/10.1002/sim.1148
   PubMed Web of Science ®Google Scholar
• Swedish National Board of Health and Welfare. (2018). Nationella riktlinjer för vård och stöd vid schizofreni och schizofreniliknande tillstånd: Stöd för styrning och ledning. [National guidelines for care and support for persons with schizophrenia and schizophrenia-like conditions: Support for management.] National Board of Health and Welfare.
   Google Scholar
• Syrén, S. (2010). Det outsagda och ohörsammade lidandet: Tillvaron för personer med långvarig psykossjukdom och deras närstående [Being in the world with long term psychotic illness—The unspoken and unheard suffering.] [Doctoral dissertation]. Linnaeus University.
   Google Scholar
• Topor, A., Borg, M., Mezzina, R., Sells, D., Marin, I., & Davidson, L. (2006). Others: The role of family, friends, and professionals in the recovery process. American Journal of Psychiatric Rehabilitation, 9(1), 17–37. https://doi.org/https://doi.org/10.1080/15487760500339410
   Google Scholar
• Walton-Moss, B., Gerson, L., & Rose, L. (2005). Effects of mental illness on family quality of life. Issues in Mental Health Nursing, 26(6), 627–642. https://doi.org/https://doi.org/10.1080/01612840590959506
   PubMedGoogle Scholar
• Weimand, B. M., Hall-Lord, M., Sällström, C., & Hedelin, B. (2013). Life‐sharing experiences of relatives of persons with severe mental illness—A phenomenographic study. Scandinavian Journal of Caring Sciences, 27(1), 99–107. https://doi.org/https://doi.org/10.1111/j.1471-6712.2012.01007.x
   PubMed Web of Science ®Google Scholar
• Weimand, B. M., Hedelin, B., Hall-Lord, M. L., & Sällström, C. (2011). “Left alone with straining but inescapable responsibilities:” Relatives’ experiences with mental health services. Issues in Mental Health Nursing, 32(11), 703–710. https://doi.org/https://doi.org/10.3109/01612840.2011.598606
   PubMedGoogle Scholar
• Weimand, B. M., Hedelin, B., Sällström, C., & Hall-Lord, M. L. (2010). Burden and health in relatives of persons with severe mental illness: A Norwegian cross-sectional study. Issues in Mental Health Nursing, 31(12), 804–815. https://doi.org/https://doi.org/10.3109/01612840.2010.520819
   PubMedGoogle Scholar
• Weimand, B. M., Israel, P., & Ewertzon, M. (2018). Families in Assertive Community Treatment (ACT) Teams in Norway: A cross-sectional study on relatives’ experiences of involvement and alienation. Community Mental Health Journal, 54(5), 686–697. https://doi.org/https://doi.org/10.1007/s10597-017-0207-7
   PubMed Web of Science ®Google Scholar
• Yesufu-Udechuku, A., Harrison, B., Mayo-Wilson, E., Young, N., Woodhams, P., Shiers, D., Kuipers, E., & Kendall, T. (2015). Interventions to improve the experience of caring for people with severe mental illness: Systematic review and meta-analysis. The British Journal of Psychiatry, 206(4), 268–274. https://doi.org/https://doi.org/10.1192/bjp.bp.114.147561
   PubMed Web of Science ®Google Scholar