As parents age, well siblings are often asked to assume caregiving responsibilities for their brother or sister with mental illness. However, relatively little is known about how well siblings prioritize sibling caregiving responsibilities with other life demands. We examined well siblings’ attitudes toward self-care and caregiving for their sibling with mental illness (self- and sibling-care) using two cross-sectional samples. The first sample of well siblings (N = 242) was used to examine the psychometric properties of the self- and sibling-care measure (SSCM), designed to assess the degree to which siblings prioritize their own needs and the needs of their sibling with mental illness. A second sample (N = 103) was used to determine the relative contribution of self- and sibling-care attitudes in accounting for variation in well siblings’ reports of personal loss and stress-related personal growth. Results support the psychometric validity of the SSCM and suggest that self- and sibling-care attitudes account for greater variance in scores on perceived personal loss and stress-related growth than demographic or caregiving factors. Our findings support the need to address family care responsibilities and resource limitations through recovery-oriented mental health policies, services, and programs.
This is a preview of subscription content, access via your institution.
Buy single article
Instant access to the full article PDF.
Price excludes VAT (USA)
Tax calculation will be finalised during checkout.
Abraham, K. M., & Stein, C. H. (2013). When mom has a mental illness: Role reversal and psychosocial adjustment among emerging adults. Journal of Clinical Psychology, 69, 600–615.
Abrams, M. S. (2009). The well sibling: Challenges and possibilities. American Journal of Psychotherapy, 63, 305–317.
Acton, G. J. (2002). Health-promoting self-care in family caregivers. Western Journal of Nursing Research, 24, 73–86.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders. 4th ed. Washington, DC: American Psychiatric Association. Text revision.
Aschbrenner, K. A., Pepin, R., Mueser, K. T., Naslund, J. A., Rolin, S. A., Faber, M. J., & Bartels, S. J. (2014). A mixed methods exploration of family involvement in medical care for older adults with serious mental illness. The International Journal of Psychiatry in Medicine, 48, 121–133.
Baker, A. E., Procter, N., & Gibbons, T. (2009). Dimensions of loss from mental illness. Journal of Sociology & Social Welfare, 36, 25.
Bauer, R., Koepke, F., Sterzinger, L., & Spiessl, H. (2012). Burden, rewards, and coping—the ups and downs of caregivers of people with mental illness. The Journal of Nervous and Mental Disease, 200, 928–934.
Birditt, K. S., Fingerman, K. L., & Zarit, S. (2010). Adult children’s problems and successes: Implications for intergenerational ambivalence. Journal of Gerontology: Psychological Science, 65, 145–153.
Brown, T. A. (2006). Confirmatory factor analysis for applied research. New York: Guilford Press.
Campbell, D. T., & Fiske, D. W. (1959). Convergent and discriminant validation by the multitrait-multimethod matrix. Psychological Bulletin, 56, 81–105.
Carver, M., & Jones, W. (1992). The family satisfaction scale. Social Behavior and Personality: An International Journal, 20, 71–84.
Chen, F. P., & Greenberg, J. S. (2004). A positive aspect of caregiving: The influence of social support on caregiving gains for family members of relatives with schizophrenia. Community Mental Health Journal, 40, 423–435.
Chen, W., & Lukens, E. (2011). Well-being, depressive symptoms, and burden among parent and sibling caregivers of persons with severe and persistent mental illness. Social Work in Mental Health, 9, 397–416.
Cohen, L. H., Hettler, T. R., & Pane, N. (1998). Assessment of posttraumatic growth. In R. G. Tedeschi, C. L. Park, L. G. Calhoun, (Eds.), Posttraumatic growth: Positive changes in the aftermath of crisis. Mahwah, NJ: Lawrence Erlbaum Associates.
Cummings, S. M., & Kropf, N. P. (2011). Aging with severe mental illness: Challenges and treatments. Journal of Gerontological Social Work, 54, 175–188.
Fingerman, K. L., & Hay, E. L. (2004). Intergenerational ambivalence in the larger social network. In K. Pillemer & K. Luescher (Eds.), Intergenerational ambivalence: New perspectives on parent–child relations in later life (pp. 133–152). Amsterdam: Elsevier/JAI Press.
Fingerman, K. L., Pitzer, L., Lefkowitz, E. S., Birditt, K. S., & Mroczek, D. (2008). Ambivalent relationship qualities between adults and their parents: Implications for both parties’ well-being. Journal of Gerontology: Psychological Sciences, 63, 362–371.
Greenberg, J. S., Kim, H. W., & Greenley, J. R. (1997). Factors associated with subjective burden in siblings of adults with severe mental illness. American Journal of Orthopsychiatry, 67, 231–241.
Greenberg, J. S., Seltzer, M. M., Orsmond, G. I., & Krauss, M. W. (1999). Siblings of adults with mental illness or mental retardation: Current involvement and expectation of future caregiving. Psychiatric Services, 50, 1214–1219.
Hatfield, A. B., & Lefley, H. P. (2005). Future involvement of siblings in the lives of persons with mental illness. Community Mental Health Journal, 41, 327–338.
Horwitz, A. V., Tessler, R. C., Fisher, G. A., & Gamache, G. M. (1992). The role of adult siblings in providing social support to the severely mentally ill. Journal of Marriage and the Family, 54, 233–241.
Horwitz, A. V. (1993). Siblings as caregivers for the seriously mentally ill. The Milbank Quarterly, 71, 323–339.
Jansen, J. E., Gleeson, J., & Cotton, S. (2015). Towards a better understanding of caregiver distress in early psychosis: A systematic review of the psychological factors involved. Clinical Psychology Review, 35, 56–66.
Jewell, T. C. (1999). Adult siblings of people with serious mental illness: The relationship between self- and sibling-care beliefs and psychological adjustment. (Doctoral dissertation, Bowling Green State University). Dissertation Abstracts International: Section B: The Sciences and Engineering, 60, 5776.
Jewell, T. C., & Stein, C. H. (2002). Parental influence on sibling caregiving for people with severe mental illness. Community Mental Health Journal, 38, 17–33.
Joseph, S., & Linley, P. A. (2006). Growth following adversity: Theoretical perspectives and implications for clinical practice. Clinical Psychology Review, 26, 1041–1053.
Kline, R. B. (2005). Principles and practice of structural equation modeling (2nd ed.). New York: The Guilford Press.
Lashewicz, B., Lo, A., Mooney, L., & Khan, H. (2012). Drawing the line: A case study of ambivalence in sibling support for adults with complex needs. Issues in Mental Health Nursing, 33, 727–734.
Leith, J. E., & Stein, C. H. (2012). The role of personal loss in the caregiving experiences of well siblings of adults with serious mental illness. Journal of Clinical Psychology, 68, 1075–1088.
Lively, S., Friedrich, R. M., & Rubenstein, L. (2004). The effect of disturbing illness behaviors on siblings of persons with schizophrenia. Journal of the American Psychiatric Nurses Association, 10, 222–232.
Lohrer, S., Lukens, E., & Thorning, H. (2006). The costs of caring: Instrumental caregiving involvement among adult siblings of persons with mental illness. Community Mental Health Journal, 3, 1573–1589.
Lowenstein, A. (2007). Solidarity-conflict and ambivalence: Testing two conceptual frameworks and their impact on quality of life for older family members. Journal of Gerontology: Social Sciences, 62, 100–107.
Luscher, K. (2002). Intergenerational ambivalence: Further steps in theory and research. Journal of Marriage and Family, 64, 585–593.
Marsh, D. T. (1998). Serious mental illness and the family: The practitioner’s guide. Hoboken, NJ: Wiley.
Marsh, D. T., & Dickens, R. M. (1997). Troubled journey: Coming to terms with the mental illness of a sibling or parent. New York: Penguin Putnam, Inc.
Marsh, D. T., Lefley, H. P., Evans-Rhodes, D., Ansell, V. I., Doerzbacher, B. M., LaBarbera, L., & Paluzzi, J. E. (1996). The family experience of mental illness: Evidence for resilience. Psychiatric Rehabilitation Journal, 20, 3.
Orsmond, G. I., & Seltzer, M. (2000). Brothers and sisters of adults with mental retardation: Gendered nature of the sibling relationship. American Journal on Mental Retardation, 105, 486–507.
Park, C. L., Cohen, L. H., & Murch, R. L. (1996). Assessment and prediction of stress-related growth. Journal of Personality, 64, 71–105.
Pearce, M. J., Medoff, D., Lawrence, R. E., & Dixon, L. (2015). Religious coping among adults caring for family members with serious mental illness. Community Mental Health Journal, 52, 1–9.
Pillemer, K., & Suitor, J. J. (2014). Who provides care? A prospective study of caregiving by adult children. The Gerontologist, 54, 589–598.
Pinquart, M., & Sörensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 61, 33–45.
Rowitz, L. (1993). Lifetime research on siblings of persons with mental retardation. In Z. Stoneman & P. W. Berman (Eds.), The effects of mental retardation, disability, and illness on sibling relationships: Research issues and challenges (pp. 321–332). Baltimore: Brookes.
Reinhard, S. C., Gubman, G. D., Horwitz, A. V., & Minsky, S. (1994). Burden assessment scale for families of the seriously mentally ill. Evaluation and Program Planning, 17, 261–269.
Sanders, A., & Szymanski, K. (2013). Siblings of people diagnosed with a mental disorder and posttraumatic growth. Community Mental Health Journal, 49, 554–559.
Sartorius, N., Leff, J., López-Ibor, J. J., Maj, M., & Okasha, A. (2004). Families and mental disorder: From burden to empowerment. West Sussex: Wiley.
Schmid, R., Schielein, T., Binder, H., Hajak, G., & Spiessl, H. (2009). The forgotten caregivers: Siblings of schizophrenic patients. International Journal of Psychiatry in Clinical Practice, 13, 326–337.
Seltzer, M. M., Greenberg, J. S., Krauss, M. W., Gordon, R. M., & Judge, K. (1997). Siblings of adults with mental retardation or mental illness: effects on lifestyle and psychological well-being. Family Relations, 45, 395–405.
Sin, J., Moone, N., & Harris, P. (2008). Siblings of individual with first-episode psychosis: Understanding their experiences and needs. Journal of Psychological Nursing and Mental Health Services, 46, 33–40.
Smith, M. J., Greenberg, J. S., & Seltzer, M. (2007). Siblings of adults with schizophrenia: Expectations about future caregiving roles. American Journal of Orthopsychiatry, 77, 29.
Stålberg, G., Ekerwald, H., & Hultman, C. M. (2004). At issue: Siblings of patients with schizophrenia: Sibling bond, coping patterns, and fear of possible schizophrenia heredity. Schizophrenia Bulletin, 30, 445.
Stein, C. H., Dworsky, D. O., Phillips, R. E., & Hunt, M. G. (2005). Measuring personal loss among adults coping with serious mental illness. Community Mental Health Journal, 41, 129–139.
Stein, C. H., & Wemmerus, V. A. (2001). Searching for a normal life: Personal accounts of adults with schizophrenia, their parents, and well-siblings. American Journal of Community Psychology, 29, 725–746.
Taylor, J. L., Greenberg, J. S., Seltzer, M. M., & Floyd, F. J. (2008). Siblings of adults with mild intellectual deficits or mental illness: Differential life course outcomes. Journal of Family Psychology, 22, 905–914.
Waite-Jones, J. M., & Madill, A. (2008). Amplified ambivalence: Having a sibling with juvenile idiopathic arthritis. Psychology and Health, 23, 477–492.
Willson, A. E., Shuey, K. M., & Elder, G. H. (2003). Ambivalence in the relationship of adult children to aging parents and in-laws. Journal of Marriage and Family, 65, 1055–1072.
Wolfe, B., Song, J., Greenberg, J. S., & Mailick, M. R. (2014). Ripple effects of developmental disabilities and mental illness on nondisabled adult siblings. Social Science & Medicine, 108, 1–9.
Zigarus, C. (2004). Self-care: Embodiment, personal autonomy and the shaping of health consciousness. New York: Routledge.
J.E.L. designed and executed Study 2, completed data analysis for Study 2 and additional data analysis for Study 1, wrote the manuscript integrating both Study 1 and 2, and edited the final manuscript. T.C.J. designed and executed Study 1 and completed data analysis for Study 1. C.H.S. advised J.E.L. and T.C.J. in the development of Study 1 and 2, assisted in the analysis and writing of the manuscript, and edited the final manuscript.
Conflict of Interest
The authors declare that they have no competing interests.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional review board at Bowling Green State University and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.
Informed consent was obtained from all individual participants included in the study.
About this article
Cite this article
Leith, J.E., Jewell, T.C. & Stein, C.H. Caregiving Attitudes, Personal Loss, and Stress-Related Growth Among Siblings of Adults with Mental Illness. J Child Fam Stud 27, 1193–1206 (2018). https://doi.org/10.1007/s10826-017-0965-4