Help-Seeking by Parental Caregivers of Individuals with Intellectual Disabilities and Dual Diagnosis
- 22 Downloads
This study examined the roles of stigma and of enabling factors in help-seeking by parental caregivers of individuals with intellectual disabilities and dual diagnosis. Questionnaires were completed by 195 family caregivers. Lower family stigma was related to higher personal enabling factors (e.g. knowledge about services and previous experience in seeking help), which in turn was related to higher help-seeking behaviors. Higher professional enabling factors (e.g. attitude of the professional, services in the vicinity) were related to higher intentions to seek help, which were related to higher help-seeking behaviors. Professionals can help families achieve a greater sense of self-efficacy in their own help-seeking process by providing them with knowledge about services and facilitating a more positive experience in the process.
KeywordsIntellectual disabilities Dual diagnosis Help-seeking Family caregivers
This research was supported financially by the State of Lower-Saxony, Hannover, Germany (ZN 2918). We warmly thank the families who participated in the study. We also thank the Ministry of Education, the Disabilities’ Administration of the Ministry of Labour, Social Affairs and Social Services, The Outpatient Unit for Neurodevelopmental Psychiatry at Schneider Children’s Medical Center and Beit Issie Shapiro for their help in recruitment. Finally, we thank all the research assistants who made this study possible.
This study was funded by the State of Lower-Saxony, Hannover, Germany (Grant Number ZN 2918).
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
- Aiken, L. S., & West, S. G. (1991). Multiple regression: Testing and interpreting interactions. Newbury Park: Sage.Google Scholar
- Ajzen, I. (2002). Perceived behavioral control, self-efficacy, locus of control, and the theory of planned behavior. Journal of Applied Social Psychology, 32(4), 665–683.Google Scholar
- Andersen, R. M., & Davidson, P. L. (1997). Ethnicity, aging, and oral health outcomes: A conceptual framework. Advances in Dental Research, 11(2), 203–209..Google Scholar
- Bandura, A. (1986). Social foundations of thought and action. Englewood Cliffs: Prentice Hall.Google Scholar
- Chiu, M. Y., Yang, X., Wong, F. H. T., Li, J. H., & Li, J. (2013). Caregiving of children with intellectual disabilities in China—An examination of affiliate stigma and the cultural thesis. Journal of Intellectual Disability Research, 57(12), 1117–1129. https://doi.org/10.1111/j.1365-2788.2012.01624.x.Google Scholar
- Corrigan, P. W., & Michaels, P. J. (2012). Perceived availability of services scale. Chicago: CASD.Google Scholar
- Cunningham, P. J., & Freiman, M. P. (1996). Determinants of ambulatory mental health services use for school-age children and adolescents. Health Services Research, 31(4), 409.Google Scholar
- Douma, J. C. H., Dekker, M. C., Ruiter, K. P., Verhulst, F. C., & Koot, H. M. (2006b). Help-seeking process of parents for psychopathology in youth with moderate to borderline intellectual disabilities. Journal of the American Academy of Child and Adolescent Psychiatry, 45(10), 1232–1242. https://doi.org/10.1097/01.chi.0000230167.31246.db.Google Scholar
- Einfeld, S. L., Piccinin, A. M., Mackinnon, A., Hofer, S., Taffe, M., Gray, J., Bontempo, K. E., Hoffman, D. E., Parmenter, L. R.T., & Tonge, B. J. (2006). Psychopathology in young people with intellectual disability. Journal of the American Medical Association, 296(16), 1981–1989. https://doi.org/10.1001/jama.296.16.1981.Google Scholar
- Einfeld, S. L., & Tonge, B. T. (2002). Manual for the developmental behaviour checklist (second edition)—primary carer version (DBC-P-P) and teacher version (DBC-P-T). Melbourne: Monash University Centre for Developmental Psychiatry and Psychology and School of Psychiatry, University of New South Wales.Google Scholar
- Essop, F. (2012). Parents’ and special care workers understanding of “acceptance” and “denial” in relation to a child’s intellectual disability. In unpublished master’s thesis. Disability studies division: University of Cape Town, South Africa.Google Scholar
- Faul, F., Erdfelder, E., Buchner, A., & Lang, A. G. (2009). Statistical power analyses using G* Power 3.1: Tests for correlation and regression analyses. Behavior Research Methods, 41(4), 1149–1160.Google Scholar
- Foundation House & Centre for Multicultural Youth. (2013). Responding to challenges of misuse of alcohol and other drugs by young people of refugee backgrounds. Melbourne: Authors.Google Scholar
- Godoy, L., Mian, N. D., Eisenhower, A. S., & Carter, A. S. (2014). Pathways to service receipt: Modeling parent help-seeking for childhood mental health problems. Administration and Policy in Mental Health and Mental Health Services Research, 41(4), 469–479. https://doi.org/10.1007/s10488-013-0484-6&%23x200F;.Google Scholar
- Haihambo, C., & Lightfoot, E. (2010). Cultural beliefs regarding people with disabilities in Namibia: Implications for inclusion of people with disabilities. International Journal of Education, 25, 76–87.Google Scholar
- Harrison, M., McKay, M., & Bannon, W. (2004). Inner-city child mental health service use: The real question is why youth and families do not use services. Community Mental Health Journal, 40(2), 119–131. https://doi.org/10.1023/B:COMH.0000022732.80714.8b.Google Scholar
- Huỳnh, C., Caron, J., & Fleury, M. J. (2016). Mental health services use among adults with or without mental disorders: Do development stages matter? International Journal of Social Psychiatry, 62(5), 434–451..Google Scholar
- Ingstad, B. (2001). Disability in the developing world. In G. L. Albrecht, K. D. Seelman & M. Bury (Eds.), Handbook of disability studies (pp. 772–792). Thousand Oaks: SageGoogle Scholar
- Israel Central Bureau of Statistics. (2018). Population: Table B1. Retrieved from: http://www.cbs.gov.il/publications18/yarhon0718/pdf/b1.pdf.
- Kerkorian, D., McKay, M., & Bannon, W. M. Jr. (2006). Seeking help a second time: Parents’/caregivers’ characterizations of previous experiences with mental health services for their children and perceptions of barriers to future use. American Journal of Orthopsychiatry, 76(2), 161. https://doi.org/10.1037/0002-94220.127.116.11.Google Scholar
- Keysor, J. J., Desai, T., & Mutran, E. J. (1999). Elders’ preferences for care setting in short-and long-term disability scenarios. The Gerontologist, 39(3), 334–344.Google Scholar
- Krupchanka, D., Chrtková, D., Vítková, M., Munzel, D., Čihařová, M., Růžičková, T., Winkler, P., Janoušková, M., Albanese, E., & Sartorius, N. (2018). Experience of stigma and discrimination in families of persons with schizophrenia in the Czech Republic. Social Science & Medicine, 212, 129–135. https://doi.org/10.1016/j.socscimed.2018.07.015.Google Scholar
- Logan, D. E., & King, C. A. (2001). Parental facilitation of adolescent mental health service utilization: A conceptual and empirical review. Clinical Psychology: Science and Practice, 8(3), 319–333.Google Scholar
- MacNaughton, K. L., & Rodrigue, J. R. (2001). Predicting adherence to recommendations by parents of clinic-referred children. Journal of Consulting and Clinical Psychology, 69(2), 262. https://doi.org/10.1037/0022-006X.69.2.262&%23x200F;.Google Scholar
- McCann, T. V., Mugavin, J., Renzaho, A., & Lubman, D. I. (2016). Sub-Saharan African migrant youths’ help-seeking barriers and facilitators for mental health and substance use problems: A qualitative study. BMC Psychiatry, 16(1), 275. https://doi.org/10.1186/s12888-016-0984-5&%23x200F;.Google Scholar
- McConkey, R., Kahonde, C., & McKenzie, J. (2016). Tackling stigma in developing countries: The key role of families. In Intellectual Disability and Stigma (pp. 179–194). London: Palgrave Macmillan.Google Scholar
- Mizock, L. (2012). The double stigma of obesity and serious mental illnesses: Promoting health and recovery. Psychiatric Rehabilitation Journal, 35(6), 466.Google Scholar
- Owens, P. L., Hoagwood, K., Horwitz, S. M., Leaf, P. J., Poduska, J. M., Kellam, S. G., & Ialongo, N. S. (2002). Barriers to children’s mental health services. Journal of the American Academy of Child & Adolescent Psychiatry, 41(6), 731–738. https://doi.org/10.1097/00004583-200206000-00013.Google Scholar
- Sayal, K., Tischler, V., Coope, C., Robotham, S., Ashworth, M., Day, C., Tylee, A., & Simonoff, E. (2010). Parental help-seeking in primary care for child and adolescent mental health concerns: Qualitative study. The British Journal of Psychiatry, 197(6), 476–481. https://doi.org/10.1192/bjp.bp.110.081448.Google Scholar
- Schalock, R. L., Borthwick-Duffy, S. A., Bradley, V. J., Buntinx, W. H. E., Coulter, D. L., Craig, E. M., Gomez, S. C., Lachapelle, T., Luck-asson, R., Reeve, A., Shoren, K. A., Snell, M. E., Spreat, S., Tasse, M. J., Thompson, J. R., Verdugo-Alonso, M. A., Wehmeyer, M. l., & Yeager, M. H. (2010). Intellectual disability: Definition, Classification, and systems of supports (11th ed.). Washington, DC: American Association on intellectual and Developmental Disabilities.Google Scholar
- Schraeder, K. E., & Reid, G. J. (2015). Why wait? The effect of wait-times on subsequent help-seeking among families looking for children’s mental health services. Journal of Abnormal Child Psychology, 43(3), 553–565. https://doi.org/10.1007/s10802-014-9928-z.&%23x200F;.Google Scholar
- Selig, J. P., & Preacher, K. J. (2008). Monte Carlo method for assessing mediation: An interactive tool for creating confidence intervals for indirect effects [Computer software]. http://quantpsy.org/.
- Spassiani, N., Chacra, A., & Lunsky, Y. (2017). “Why are you here? Can’t you cope at home?” The Psychiatric crisis of people with intellectual disabilities and the community’s response. Journal of Mental Health Research in Intellectual Disabilities, 10(2), 74–92. https://doi.org/10.1080/19315864.2016.1278290.Google Scholar
- Spoth, R. L., Redmond, C., Kahn, J. H., & Shin, C. (1997). A prospective validation study of inclination, belief, and context predictors of family-focused prevention involvement. Family Process, 36(4), 403–429.Google Scholar
- Szymanski, L. S., & King, B. H. (1999). Summary of the practice parameters for the assessment and treatment of children, adolescents, and adults with mental retardation and comorbid mental disorders. Journal of the American academy of child and adolescent psychiatry, 38(12), 1606–1610.Google Scholar
- Taffe, J. R., Gray, K. M., Einfeld, S. L., Dekker, M. C., Koot, H. M., Emerson, E., Koskentausta, T., & Tonge, B. J. (2007). Short form of the developmental behaviour checklist. American Journal on Mental Retardation, 112(1), 31–39. https://doi.org/10.1352/0895-8017(2007)112%5B31:SFOTDB%5D2.0.CO;2.Google Scholar
- UN General Assembly. (1989) Convention on the rights of the child. United Nations, Treaty Series, vol. 1577, p. 3. Accessed Dec 8, 2018, from https://www.refworld.org/docid/3ae6b38f0.html.
- UN General Assembly. (2007) Convention on the rights of persons with disabilities: Resolution. Adopted by the General Assembly. 24 January 2007.Google Scholar
- Werner, S., & Shulman, C. (2015). Does type of disability make a difference in affiliate stigma among family caregivers of individuals with autism, intellectual disability or physical disability? Journal of Intellectual Disability Research, 59(3), 272–283. https://doi.org/10.1111/jir.12136.Google Scholar
- Wilson,C. J., Deane, F. P., Ciarrochi, J., & Rickwood, D. (2005). Measuring help-seeking intentions: Properties of the General Help-Seeking Questionnaire. Canadian Journal of Counselling, 39(1),15–28.Google Scholar