Abstract
To facilitate the development of a therapeutic alliance in genetic counseling, it is important that the counselor understands how families might perceive the condition that constitutes the reason for the referral. Through training and professional practice, genetic counselors develop a thorough understanding of families’ perceptions of the conditions that are common indications for genetic counseling. But, for referral indications that are less frequent, like serious mental illnesses, genetic counselors may feel less confident in their understanding of the family’s experience, or in their ability to provide psychosocial support when serious mental illness is reported in a family history. This may impede the establishment of a therapeutic alliance. As research shows that most referrals for genetic counseling related to serious mental illness are for female first-degree family members of affected individuals, we sought to explore how this group perceives serious mental illness. To provide a frame of reference with which genetic counselors may be more familiar, we explored how women perceived serious mental illness compared to other common complex disorders in their family. We conducted semi-structured interviews with women who had a child with a serious mental illness (schizophrenia, schizoaffective disorder, bipolar disorder) and a first-degree relative with another common complex disorder (diabetes, heart disease, cancer). Interviews were transcribed and subjected to thematic analysis. Saturation was reached when nine women had participated. Serious mental illness was perceived as being more severe and as having a greater impact on the family than diabetes, heart disease, or cancer. Themes identified included guilt, stigma, and loss. Some of the most important issues that contribute to mothers’ perceptions that serious mental illness is more severe than other common complex disorders could be effectively addressed in genetic counseling. Developing a heightened awareness of how family members experience a relative’s mental illness may help genetic counselors to be better able to provide psychosocial support to this group, whether serious mental illness constitutes the primary reason for referral or appears in the family history during counseling for a different referral reason.
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References
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders. Washington, CD: American Psychiatric Association.
Armstrong, D., Gosling, A., Weinman, J., & Marteau, T. (1997). The place of inter-rater reliability in qualitative research: An empirical study. Sociology, 31(3), 597–606.
Austin, J. C., & Honer, W. G. (2008). Psychiatric genetic counseling for parents of individuals with psychotic disorders: A pilot study. Early Intervention in Psychiatry, 2, 80–89.
Austin, J. C., Smith, G. N., & Honer, W. G. (2006). The genomic era and perceptions of psychotic disorders: Genetic risk estimation, associations with reproductive decisions, and views about predictive testing. American Journal of Medical Genetics, 141B, 926–928.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.
Coffey, A., & Atkinson, P. (1996). Concepts in coding. Making sense of qualitative data: Complementary research strategies. Thousand Oaks: Sage.
Cook, K. (2011). Reliability assessments in qualitative health promotion research. Health Promotion International.
DeLisi, L. E., & Bertisch, H. (2006). A preliminary comparison of the hopes of researchers, clinicians, and families for the future ethical use of genetic findings on schizophrenia. American Journal of Medical Genetics, 141B, 110–116.
Fereday, J., & Muir-Cochrane, E. (2006). Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development Jennifer Fereday and Eimear Muir-Cochrane. International Journal of Qualitative Methods, 5, 1.
Ferriter, M., & Huband, N. (2003). Experiences of parents with a son or daughter suffering from schizophrenia. Journal of Psychiatric and Mental Health Nursing, 10(5), 552–560.
Fogelson, D. L., Nuechterlein, K. L., Asarnow, R. F., Payne, D. L., & Subotnik, K. L. (2004). Validity of the family history method for diagnosing schizophrenia, schizophrenia-related psychoses, and schizophrenia-spectrum disorders in the first-degree relatives of schizophrenia probands. Schizophrenia Research, 68(2–3), 309–317.
Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. NJ, Prentice-Hall: Engelwood Cliffs.
Guba, E. G., & Lincoln, Y. S. (1994). Competing Paradigms in qualitative research. Handbook of qualitative research. D. a. Lincoln (pp. 105–117). CA, Sage: Thousand Oaks.
Holzinger, A., Kilian, R., Lindenbach, I., Petscheleit, A., & Angermeyer, M. C. (2003). Patients’ and their relatives’ causal explanations of schizoprenia. Social Psychiatry and Psychiatric Epidemiology, 38, 155–162.
Howard, P. (1998). The experience of fathers of adult children with schizophrenia. Issues in Mental Health Nursing, 19(4), 399–413.
Hunter, M. J., Hippman, C., Honer, W. G., & Austin, J. C. (2010). Genetic counseling for schizophrenia: Review of referrals to a provincial medical genetics program from 1968 to 2007. American Journal of Medical Genetics, 152A, 147–152.
Leventhal, H., Benyamini, Y., & Brownlee, S. (1997). Illness representations: Theoretical foundations. Perceptions of health and illness: Current research and applications (pp. 19–46). Amsterdam: Harwood.
Lyus, V. L. (2007). The importance of genetic counseling for individuals with schizophrenia and their relatives: Potential clients’ opinions and experiences. American Journal of Medical Genetics, In press.
Monaco, L. C., Conway, L., Valverde, K., & Austin, J. C. (2009). Exploring genetic counselors’ perceptions of and attitudes towards schizophrenia. Public Health Genomics, 13(1), 21–26.
Ostman, M., & Kjellin, L. (2002). Stigma by association: Psychological factors in relatives of people with mental illness. The British Journal of Psychiatry, 181, 494–498.
Peay, H. L., Palmer, C., Sheidley, B., McCarthy-Veach, P., Gettig, B., & Austin, J. C. (2008). Psychiatric disorders in clinical genetics I: Assessing family histories of psychiatric disorders. Journal of Genetic Counseling, 17(1), 6–17.
Phelan, J. C. (2002). Genetic bases of mental illness - a cure for stigma? Trends in Neurosciences, 25(8), 430–431.
Phelan, J. C., Bromet, E. J., & Link, B. G. (1998). Psychiatric illness and family stigma. Schizophrenia Bulletin, 24(1), 115–126.
Phelan, J. C., Yang, L. H., & Cruz-Rojas, R. (2006). Effects of attributing serious mental illnesses to genetic causes on orientations to treatment. Psychiatric Services, 57, 382–387.
Pinfold, V., Byrne, P., & Toulmin, H. (2005). Challenging stigma and discrimination in communities: A focus group study identifying UK Mental Health Service users’ main campaign priorities. The International Journal of Social Psychiatry, 51, 128–138.
Ponterotto, J. R. (2005). Qualitative research in counseling psychology: A primer on research paradigms and philosophy of science. Journal of Counseling Psychology, 52(2), 126–136.
Ryan, K. A. (1993). Mothers of adult children with schizophrenia: An ethnographic study. Schizophrenia Research, 11(1), 21–31.
Schulze, B. (2007). Stigma and mental health professionals: A review of the evidence on an intricate relationship. International Review of Psychiatry, 19(2), 137–155.
Schulze, B., & Angermeyer, M. C. (2003). Subjective experiences of stigma. A focus group study of schizophrenic patients, their relatives and mental health professionals. Social Science and Medicine, 56, 299–312.
Smoller, J. W., & Finn, C. T. (2003). Family, twin and adoption studies of bipolar disorder. American Journal of Medical Genetics, 123C, 48–58.
Struening, E. L., Perlick, D. A., Link, B. G., Hellman, F., Herman, D., & Sirey, J. A. (2001). Stigma as a barrier to recovery: The extent to which caregivers believe most people devalue consumers and their families. Psychiatric Services, 52(12), 1633–1638.
Walter, G. (1998). The attitude of health professionals towards carers and individuals with mental illness. Australasian Psychiatry, 6, 70–72.
Walter, F., & Emery, J. (2006). Perceptions of family history across common diseases: A qualitative study in primary care. Family Practice, 23(4), 472.
Zolnierek, K. B. H., & DiMatteo, M. R. (2009). Physician communication and patient adherence to treatment: A meta-analysis. Medical Care, 47(8), 826–834.
Acknowledgements
This study was funded, in part, by a grant from the National Society of Genetic Counselors Psychiatric Special Interest Group. JA was funded by the Canadian Institutes of Health Research, the Michael Smith Foundation for Health Research and the BC Provincial Health Services Authority. The authors thank Rebecca Burlingame and Howard Trachtman of NAMI Boston for helping with recruitment; Kristen Lautenbach, Mari Morse, Jilliane Miller, and Kunal Sanghavi for transcribing the interviews; Carly Grant for consultation on approach to qualitative data analysis, and the participants who shared their stories.
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Lautenbach, D.M., Hiraki, S., Campion, M.W. et al. Mothers’ Perspectives on Their Child’s Mental Illness as Compared to Other Complex Disorders in Their Family: Insights to Inform Genetic Counseling Practice. J Genet Counsel 21, 564–572 (2012). https://doi.org/10.1007/s10897-011-9420-7
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DOI: https://doi.org/10.1007/s10897-011-9420-7