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Published in: Community Mental Health Journal 8/2015

01-11-2015 | Original Paper

Perceptions of Subjective Burden Among Latino Families Caring for a Loved One with Schizophrenia

Authors: Mercedes Hernandez, Concepción Barrio

Published in: Community Mental Health Journal | Issue 8/2015

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Abstract

The purpose of this study was to explore perceptions of subjective burden among Latino family members providing care for a loved one with schizophrenia. Data were collected from outpatient community mental health centers and featured 64 Latino family members who were primarily Spanish speaking and of Mexican origin. We used qualitative methods to examine subjective burden based on an open section of the Family Burden Interview Schedule. Five salient themes emerged capturing family members’ subjective burden experience: (a) interpersonal family relationships, (b) emotional and physical health, (c) loss of role expectations, (d) religion and spirituality, and (e) stigma. Overall, findings illustrated that families perceived numerous challenges in their caregiving. Implications for research and practice among Latino family members are discussed.
Literature
go back to reference American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th edn., text rev.). Washington, DC: Author. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th edn., text rev.). Washington, DC: Author.
go back to reference Barrio, C., & Dixon, L. B. (2012). Clinician interactions with patients and families. In J. A. Lieberman & R. M. Murray (Eds.), Comprehensive care of schizophrenia: A textbook of clinical management (pp. 342–356). New York, NY: Oxford University Press. Barrio, C., & Dixon, L. B. (2012). Clinician interactions with patients and families. In J. A. Lieberman & R. M. Murray (Eds.), Comprehensive care of schizophrenia: A textbook of clinical management (pp. 342–356). New York, NY: Oxford University Press.
go back to reference Barrio, C., Hernandez, M., & Barragán, A. (2011). Serving Latino families caring for a person with serious mental illness. In L. P. Buki & L. M. Piedra (Eds.), Creating infrastructures for Latino mental health (pp. 159–175). New York, NY: Springer.CrossRef Barrio, C., Hernandez, M., & Barragán, A. (2011). Serving Latino families caring for a person with serious mental illness. In L. P. Buki & L. M. Piedra (Eds.), Creating infrastructures for Latino mental health (pp. 159–175). New York, NY: Springer.CrossRef
go back to reference Barrio, C., Palinkas, L. A., Yamada, A.-M., Fuentes, D., Criado, V., Garcia, P., & Jeste, D. V. (2008). Unmet needs for mental health services for Latino older adults: Perspectives from consumers, family members, advocates, and service providers. Community Mental Health Journal, 44, 57–74. doi:10.1007/s10597-007-9112-9.PubMedCentralCrossRefPubMed Barrio, C., Palinkas, L. A., Yamada, A.-M., Fuentes, D., Criado, V., Garcia, P., & Jeste, D. V. (2008). Unmet needs for mental health services for Latino older adults: Perspectives from consumers, family members, advocates, and service providers. Community Mental Health Journal, 44, 57–74. doi:10.​1007/​s10597-007-9112-9.PubMedCentralCrossRefPubMed
go back to reference Barrio, C., Yamada, A.-M., Hough, R. L., Hawthorne, W., Garcia, P., & Jeste, D. V. (2003). Ethnic disparities in use of public mental health case management services among patients with schizophrenia. Psychiatric Services, 54, 1264–1270. doi:10.1176/appi.ps.54.9.1264.CrossRefPubMed Barrio, C., Yamada, A.-M., Hough, R. L., Hawthorne, W., Garcia, P., & Jeste, D. V. (2003). Ethnic disparities in use of public mental health case management services among patients with schizophrenia. Psychiatric Services, 54, 1264–1270. doi:10.​1176/​appi.​ps.​54.​9.​1264.CrossRefPubMed
go back to reference Barton, K., & Jackson, C. (2008). Reducing symptoms of trauma among carers of people with psychosis: Pilot study examining the impact of writing about caregiving experiences. Australian and New Zealand Journal of Psychiatry, 42, 693–701. doi:10.1080/00048670802203434.CrossRefPubMed Barton, K., & Jackson, C. (2008). Reducing symptoms of trauma among carers of people with psychosis: Pilot study examining the impact of writing about caregiving experiences. Australian and New Zealand Journal of Psychiatry, 42, 693–701. doi:10.​1080/​0004867080220343​4.CrossRefPubMed
go back to reference Breitborde, N. J. K., López, S. R., Chang, C., Kopelowicz, A., & Zarate, R. (2009). Emotional over-involvement can be deleterious for caregivers’ health. Social Psychiatry and Psychiatric Epidemiology, 44, 716–723. doi:10.1007/s00127-008-0492-0.CrossRefPubMed Breitborde, N. J. K., López, S. R., Chang, C., Kopelowicz, A., & Zarate, R. (2009). Emotional over-involvement can be deleterious for caregivers’ health. Social Psychiatry and Psychiatric Epidemiology, 44, 716–723. doi:10.​1007/​s00127-008-0492-0.CrossRefPubMed
go back to reference Breitborde, N. J. K., López, S. R., & Kopelowicz, A. (2010). Expressed emotion and health outcomes among Mexican-Americans with schizophrenia and their caregiving relatives. Journal of Nervous and Mental Disease, 198, 105–109. doi:10.1097/NMD.0b013e3181cc532d.CrossRefPubMed Breitborde, N. J. K., López, S. R., & Kopelowicz, A. (2010). Expressed emotion and health outcomes among Mexican-Americans with schizophrenia and their caregiving relatives. Journal of Nervous and Mental Disease, 198, 105–109. doi:10.​1097/​NMD.​0b013e3181cc532d​.CrossRefPubMed
go back to reference Charmaz, K. (2014). Constructing grounded theory (2nd ed.). Thousand Oaks, CA: Sage. Charmaz, K. (2014). Constructing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.
go back to reference Chen, W.-Y., & 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. doi:10.1080/15332985.2011.575712.CrossRef Chen, W.-Y., & 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. doi:10.​1080/​15332985.​2011.​575712.CrossRef
go back to reference Cuellar, I., Harris, L., & Jasso, R. (1980). An acculturation scale for Mexican American normal and clinical populations. Hispanic Journal of Behavioral Sciences, 2, 199–217. Cuellar, I., Harris, L., & Jasso, R. (1980). An acculturation scale for Mexican American normal and clinical populations. Hispanic Journal of Behavioral Sciences, 2, 199–217.
go back to reference Desai, P. R., Lawson, K. A., Barner, J. C., & Rascati, K. L. (2013). Estimating the direct and indirect costs for community-dwelling patients with schizophrenia. Journal of Pharmaceutical Health Services Research, 4, 187–194. doi:10.1111/jphs.12027.CrossRef Desai, P. R., Lawson, K. A., Barner, J. C., & Rascati, K. L. (2013). Estimating the direct and indirect costs for community-dwelling patients with schizophrenia. Journal of Pharmaceutical Health Services Research, 4, 187–194. doi:10.​1111/​jphs.​12027.CrossRef
go back to reference Dixon, L., Lyles, A., Scott, J., Lehman, A., Postrado, L., Goldman, H., & McGlynn, E. (1999). Services to families of adults with schizophrenia: From treatment recommendations to dissemination. Psychiatric Services, 50, 233–238. doi:10.1176/ps.50.2.233.CrossRefPubMed Dixon, L., Lyles, A., Scott, J., Lehman, A., Postrado, L., Goldman, H., & McGlynn, E. (1999). Services to families of adults with schizophrenia: From treatment recommendations to dissemination. Psychiatric Services, 50, 233–238. doi:10.​1176/​ps.​50.​2.​233.CrossRefPubMed
go back to reference Gater, A., Rofail, D., Tolley, C., Marshall, C., Abetz-Webb, L., Zarit, S. H., & Berardo, C. G. (2014). “Sometimes it’s difficult to have a normal life”: Results from a qualitative study exploring caregiver burden in schizophrenia. Schizophrenia Research and Treatment, 2014, 368215. doi:10.1155/2014/368215.PubMedCentralCrossRefPubMed Gater, A., Rofail, D., Tolley, C., Marshall, C., Abetz-Webb, L., Zarit, S. H., & Berardo, C. G. (2014). “Sometimes it’s difficult to have a normal life”: Results from a qualitative study exploring caregiver burden in schizophrenia. Schizophrenia Research and Treatment, 2014, 368215. doi:10.​1155/​2014/​368215.PubMedCentralCrossRefPubMed
go back to reference Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Piscataway, NJ: Aldine de Gruyter. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Piscataway, NJ: Aldine de Gruyter.
go back to reference González-Torres, M. A., Oraa, R., Arístegui, M., Fernández-Rivas, A., & Guimon, J. (2007). Stigma and discrimination towards people with schizophrenia and their family members. Social Psychiatry and Psychiatric Epidemiology, 42, 14–23. doi:10.1007/s00127-006-0126-3.CrossRefPubMed González-Torres, M. A., Oraa, R., Arístegui, M., Fernández-Rivas, A., & Guimon, J. (2007). Stigma and discrimination towards people with schizophrenia and their family members. Social Psychiatry and Psychiatric Epidemiology, 42, 14–23. doi:10.​1007/​s00127-006-0126-3.CrossRefPubMed
go back to reference Guarnaccia, P. J. (1998). Multicultural experiences of family caregiving: A study of African American, European American, and Hispanic American families. New Directions for Mental Health Services, 1998(77), 45–61. doi:10.1002/yd.23319987706.CrossRef Guarnaccia, P. J. (1998). Multicultural experiences of family caregiving: A study of African American, European American, and Hispanic American families. New Directions for Mental Health Services, 1998(77), 45–61. doi:10.​1002/​yd.​23319987706.CrossRef
go back to reference Guarnaccia, P. J., & Parra, P. (1996). Ethnicity, social status, and families’ experiences of caring for a mentally ill family member. Community Mental Health Journal, 32, 243–260. doi:10.1007/BF02249426.CrossRefPubMed Guarnaccia, P. J., & Parra, P. (1996). Ethnicity, social status, and families’ experiences of caring for a mentally ill family member. Community Mental Health Journal, 32, 243–260. doi:10.​1007/​BF02249426.CrossRefPubMed
go back to reference Guarnaccia, P. J., Parra, P., Deschamps, A., Milstein, G., & Argiles, N. (1992). Si Dios quiere: Hispanic families’ experiences of caring for a seriously mentally ill family member. Culture, Medicine and Psychiatry, 16, 187–215. doi:10.1007/bf00117018.CrossRefPubMed Guarnaccia, P. J., Parra, P., Deschamps, A., Milstein, G., & Argiles, N. (1992). Si Dios quiere: Hispanic families’ experiences of caring for a seriously mentally ill family member. Culture, Medicine and Psychiatry, 16, 187–215. doi:10.​1007/​bf00117018.CrossRefPubMed
go back to reference Gutiérrez-Maldonado, J., Caqueo-Urízar, A., & Kavanagh, D. J. (2005). Burden of care and general health in families of patients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 40, 899–904. doi:10.1007/s00127-005-0963-5.CrossRefPubMed Gutiérrez-Maldonado, J., Caqueo-Urízar, A., & Kavanagh, D. J. (2005). Burden of care and general health in families of patients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 40, 899–904. doi:10.​1007/​s00127-005-0963-5.CrossRefPubMed
go back to reference Hackethal, V., Spiegel, S., Lewis-Fernández, R., Kealey, E., Salerno, A., & Finnerty, M. (2013). Towards a cultural adaptation of family psychoeducation: Findings from three Latino focus groups. Community Mental Health Journal, 49, 587–598. doi:10.1007/s10597-012-9559-1.CrossRefPubMed Hackethal, V., Spiegel, S., Lewis-Fernández, R., Kealey, E., Salerno, A., & Finnerty, M. (2013). Towards a cultural adaptation of family psychoeducation: Findings from three Latino focus groups. Community Mental Health Journal, 49, 587–598. doi:10.​1007/​s10597-012-9559-1.CrossRefPubMed
go back to reference Hatfield, A. B. (1987). Families as caregivers: A historical perspective. In A. B. Hatfield & H. P. Lefley (Eds.), Families of the mentally ill (pp. 3–29). New York, NY: Guildford Press. Hatfield, A. B. (1987). Families as caregivers: A historical perspective. In A. B. Hatfield & H. P. Lefley (Eds.), Families of the mentally ill (pp. 3–29). New York, NY: Guildford Press.
go back to reference Heru, A. M. (2000). Family functioning, burden, and reward in the caregiving for chronic mental illness. Families, Systems, & Health, 18, 91–103. doi:10.1037/h0091855.CrossRef Heru, A. M. (2000). Family functioning, burden, and reward in the caregiving for chronic mental illness. Families, Systems, & Health, 18, 91–103. doi:10.​1037/​h0091855.CrossRef
go back to reference Jenkins, J. H., & Schumacher, J. G. (1999). Family burden of schizophrenia and depressive illness: Specifying the effects of ethnicity, gender, and social ecology. British Journal of Psychiatry, 174, 31–38. doi:10.1192/bjp.174.1.31.CrossRefPubMed Jenkins, J. H., & Schumacher, J. G. (1999). Family burden of schizophrenia and depressive illness: Specifying the effects of ethnicity, gender, and social ecology. British Journal of Psychiatry, 174, 31–38. doi:10.​1192/​bjp.​174.​1.​31.CrossRefPubMed
go back to reference Karnieli-Miller, O., Perlick, D. A., Nelson, A., Mattias, K., Corrigan, P., & Roe, D. (2013). Family members’ of persons living with a serious mental illness: Experiences and efforts to cope with stigma. Journal of Mental Health, 22, 254–262. doi:10.3109/09638237.2013.779368.CrossRefPubMed Karnieli-Miller, O., Perlick, D. A., Nelson, A., Mattias, K., Corrigan, P., & Roe, D. (2013). Family members’ of persons living with a serious mental illness: Experiences and efforts to cope with stigma. Journal of Mental Health, 22, 254–262. doi:10.​3109/​09638237.​2013.​779368.CrossRefPubMed
go back to reference Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.
go back to reference Magliano, L., Fiorillo, A., De Rosa, C., Malangone, C., Maj, M., & the National Mental Health Project Working Group. (2005). Family burden in long-term diseases: A comparative study in schizophrenia vs. physical disorders. Social Science and Medicine, 61, 313–322. doi:10.1016/j.socscimed.2004.11.064.CrossRefPubMed Magliano, L., Fiorillo, A., De Rosa, C., Malangone, C., Maj, M., & the National Mental Health Project Working Group. (2005). Family burden in long-term diseases: A comparative study in schizophrenia vs. physical disorders. Social Science and Medicine, 61, 313–322. doi:10.​1016/​j.​socscimed.​2004.​11.​064.CrossRefPubMed
go back to reference Marquez, J. A., & Ramírez García, J. I. (2011). Family caregivers’ monitoring of medication usage: A qualitative study of Mexican-origin families with serious mental illness. Culture, Medicine and Psychiatry, 35, 63–82. doi:10.1007/s11013-010-9198-3.CrossRefPubMed Marquez, J. A., & Ramírez García, J. I. (2011). Family caregivers’ monitoring of medication usage: A qualitative study of Mexican-origin families with serious mental illness. Culture, Medicine and Psychiatry, 35, 63–82. doi:10.​1007/​s11013-010-9198-3.CrossRefPubMed
go back to reference Murray-Swank, A. B., Lucksted, A., Medoff, D. R., Yang, Y., Wohlheiter, K., & Dixon, L. B. (2006). Religiosity, psychosocial adjustment, and subjective burden of persons who care for those with mental illness. Psychiatric Services, 57, 361–365. doi:10.1176/appi.ps.57.3.361.CrossRefPubMed Murray-Swank, A. B., Lucksted, A., Medoff, D. R., Yang, Y., Wohlheiter, K., & Dixon, L. B. (2006). Religiosity, psychosocial adjustment, and subjective burden of persons who care for those with mental illness. Psychiatric Services, 57, 361–365. doi:10.​1176/​appi.​ps.​57.​3.​361.CrossRefPubMed
go back to reference Padgett, D. K. (2008). Qualitative methods in social work research (2nd ed.). Thousand Oaks, CA: Sage. Padgett, D. K. (2008). Qualitative methods in social work research (2nd ed.). Thousand Oaks, CA: Sage.
go back to reference Richardson, M., Cobham, V., Murray, J., & McDermott, B. (2011). Parents’ grief in the context of adult child mental illness: A qualitative review. Clinical Child and Family Psychology Review, 14, 28–43. doi:10.1007/s10567-010-0075-y.CrossRefPubMed Richardson, M., Cobham, V., Murray, J., & McDermott, B. (2011). Parents’ grief in the context of adult child mental illness: A qualitative review. Clinical Child and Family Psychology Review, 14, 28–43. doi:10.​1007/​s10567-010-0075-y.CrossRefPubMed
go back to reference Roick, C., Heider, D., Toumi, M., & Angermeyer, M. C. (2006). The impact of caregivers’ characteristics, patients’ conditions and regional differences on family burden in schizophrenia: A longitudinal analysis. Acta Psychiatrica Scandinavica, 114, 363–374. doi:10.1111/j.1600-0447.2006.00797.x.CrossRefPubMed Roick, C., Heider, D., Toumi, M., & Angermeyer, M. C. (2006). The impact of caregivers’ characteristics, patients’ conditions and regional differences on family burden in schizophrenia: A longitudinal analysis. Acta Psychiatrica Scandinavica, 114, 363–374. doi:10.​1111/​j.​1600-0447.​2006.​00797.​x.CrossRefPubMed
go back to reference Smith, M. E., Lindsey, M. A., Williams, C. D., Medoff, D. R., Lucksted, A., Fang, L. J., & Dixon, L. B. (2014). Race-related differences in the experiences of family members of persons with mental illness participating in the NAMI Family to Family education program. American Journal of Community Psychology, 54, 316–327. doi:10.1007/s10464-014-9674-y.CrossRefPubMed Smith, M. E., Lindsey, M. A., Williams, C. D., Medoff, D. R., Lucksted, A., Fang, L. J., & Dixon, L. B. (2014). Race-related differences in the experiences of family members of persons with mental illness participating in the NAMI Family to Family education program. American Journal of Community Psychology, 54, 316–327. doi:10.​1007/​s10464-014-9674-y.CrossRefPubMed
go back to reference Solomon, P., & Draine, J. (1995). Subjective burden among family members of mentally ill adults: Relation to stress, coping, and adaptation. American Journal of Orthopsychiatry, 65, 419–427. doi:10.1037/h0079695.CrossRefPubMed Solomon, P., & Draine, J. (1995). Subjective burden among family members of mentally ill adults: Relation to stress, coping, and adaptation. American Journal of Orthopsychiatry, 65, 419–427. doi:10.​1037/​h0079695.CrossRefPubMed
go back to reference 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. doi:10.1023/a:1010465117848.CrossRefPubMed 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. doi:10.​1023/​a:​1010465117848.CrossRefPubMed
go back to reference Strauss, A. L., & Corbin, J. (1990). Basics of qualitative research. Newbury Park, CA: Sage. Strauss, A. L., & Corbin, J. (1990). Basics of qualitative research. Newbury Park, CA: Sage.
go back to reference 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, 1633–1638. doi:10.1176/appi.ps.52.12.1633.CrossRefPubMed 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, 1633–1638. doi:10.​1176/​appi.​ps.​52.​12.​1633.CrossRefPubMed
Metadata
Title
Perceptions of Subjective Burden Among Latino Families Caring for a Loved One with Schizophrenia
Authors
Mercedes Hernandez
Concepción Barrio
Publication date
01-11-2015
Publisher
Springer US
Published in
Community Mental Health Journal / Issue 8/2015
Print ISSN: 0010-3853
Electronic ISSN: 1573-2789
DOI
https://doi.org/10.1007/s10597-015-9881-5

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