675
Views
7
CrossRef citations to date
0
Altmetric
Research Articles

The family caregiving context among adults with disabilities: A review of the research on developmental disabilities, serious mental illness, and traumatic brain injury

, &
Pages 328-347 | Received 03 May 2016, Accepted 01 Sep 2016, Published online: 28 Sep 2016

References

  • Abramson, T. A. (2015). Older adults: The “panini sandwich” generation. Clinical Gerontologist, 38, 251–267. doi:10.1080/07317115.2015.1032466
  • Anderson, M. I., Parmenter, T. R., & Mok, M. (2002). The relationship between neurobehavioural problems of severe traumatic brain injury (TBI), family functioning and the psychological well-being of the spouse/caregiver: Path model analysis. Brain Injury, 16, 743–757. doi:10.1080/02699050210128906
  • Awad, A. G., & Voruganti, L. N. P. (2008). The burden of schizophrenia on caregivers: A review. PharmacoEconomics, 26, 149–162. doi:10.2165/00019053-200826020-00005
  • Barrio, C., & Dixon, L. (2012). Clinician interactions with patients and families. In J. A. Liberman & R. M. Murray (Eds.), Comprehensive care of schizophrenia: A textbook of clinical management (pp. 342–356). New York, NY: Oxford University Press.
  • Barrio, C., & Yamada, A.-M. (2010). Culturally based intervention development: The case of Latino families dealing with schizophrenia. Research on Social Work Practice, 20, 483–492. doi:10.1177/1049731510361613
  • 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
  • Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184–198. doi:10.1111/j.1365-2788.2005.00768.x
  • Brault, M. W. (2012). Americans with disabilities: 2010 ( Current Population Report No. P70-131). Washington, DC: U.S. Census Bureau.
  • Breitborde, N. J. K., López, S. R., Chang, C., Kopelowicz, A., & Zarate, R. (2009). Emotional over-involvement can be deleterious for caregivers’ health: Mexican Americans caring for a relative with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 44, 716–723. doi:10.1007/s00127-008-0492-0
  • 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
  • Bronfenbrenner, U. (1979). The ecology of human development: Experiments by design and nature. Cambridge, MA: Harvard University Press.
  • Bronheim, S., Goode, T., & Jones, W. (2006). Cultural and linguistic competence in family supports. Washington, DC: National Center for Cultural Competence, Georgetown University Center for Child Development.
  • Burke, M. M., Fish, T., & Lawton, K. (2015). A comparative analysis of adult siblings’ perceptions toward caregiving. Intellectual and Developmental Disabilities, 53, 143–157. doi:10.1352/1934-9556-53.2.143
  • Burke, M. M., Taylor, J. L., Urbano, R., & Hodapp, R. M. (2012). Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 117(1), 33–47. doi:10.1352/1944-7558-117.1.33
  • Caldwell, J. (2006). Consumer-directed supports: Economic, health, and social outcomes for families. Mental Retardation, 44, 405–417. doi:10.1352/0047-6765(2006)44%5B405:CSEHAS%5D2.0.CO;2
  • Caldwell, J., & Heller, T. (2007). Longitudinal outcomes of a consumer-directed program supporting adults with developmental disabilities and their families. Intellectual and Developmental Disabilities, 45, 161–173. doi:10.1352/1934-9556(2007)45%5B161:LOOACP%5D2.0.CO;2
  • Carlson, B. L., Foster, L., Dale, S. B., & Brown, R. (2007). Effects of cash and counseling on personal care and well-being. Health Services Research, 42(1), 467–487. doi:10.1111/j.1475-6773.2006.00673.x
  • 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. doi:10.1023/b:comh.0000040656.89143.82
  • Coon, D. W. (2003). Lesbian, gay, bisexual and transgender (LGBT) issues and family caregiving. San Francisco, CA: Family Caregiver Alliance, National Center on Caregiving.
  • Coon, D. W. (2007). Exploring interventions for LGBT caregivers: Issues and examples. Journal of Gay & Lesbian Social Services, 18, 109–128. doi:10.1300/J041v18n03_07
  • Crocker, A. G., Mercier, C., Lachapelle, Y., Brunet, A., Morin, D., & Roy, M.-E. (2006). Prevalence and types of aggressive behaviour among adults with intellectual disabilities. Journal of Intellectual Disability Research, 50, 652–661. doi:10.1111/j.1365-2788.2006.00815.x
  • Crowe, A., & Brinkley, J. (2015). Distress in caregivers of a family member with serious mental illness. The Family Journal, 23, 286–294. doi:10.1177/1066480715572967
  • Degeneffe, C. E., & Olney, M. F. (2008). Future concerns of adult siblings of persons with traumatic brain injury. Rehabilitation Counseling Bulletin, 51, 240–250. doi:10.1177/0034355207311319
  • DeVylder, J. E., & Lukens, E. P. (2013). Family history of schizophrenia as a risk factor for axis I psychiatric conditions. Journal of Psychiatric Research, 47, 181–187. doi:10.1016/j.jpsychires.2012.09.023
  • Dixon, L. B., Dickerson, F., Bellack, A. S., Bennett, M., Dickinson, D., Goldberg, R. W., … Kreyenbuhl, J. (2010). The 2009 Schizophrenia PORT psychosocial treatment recommendations and summary statements. Schizophrenia Bulletin, 36, 48–70. doi:10.1093/schbul/sbp115
  • Dixon, L. B., Lucksted, A., Medoff, D. R., Burland, J., Stewart, B., Lehman, A. F., … Murray-Swank, A. (2011). Outcomes of a randomized study of a peer-taught family-to-family education program for mental illness. Psychiatric Services, 62, 591–597. doi:10.1176/appi.ps.62.6.591
  • Drapalski, A. L., Marshall, T., Seybolt, D., Medoff, D., Peer, J., Leith, J., & Dixon, L. B. (2008). Unmet needs of families of adults with mental illness and preferences regarding family services. Psychiatric Services, 59, 655–662. doi:10.1176/ps.2008.59.6.655
  • Ergh, T. C., Rapport, L. J., Coleman, R. D., & Hanks, R. A. (2002). Predictors of caregiver and family functioning following traumatic brain injury: Social support moderates caregiver distress. Journal of Head Trauma Rehabilitation, 17, 155–174. doi:10.1097/00001199-200204000-00006
  • Foster, L., Dale, S. B., & Brown, R. (2007). How caregivers and workers fared in cash and counseling. Health Services Research, 42(1), 510–532. doi:10.1111/j.1475-6773.2006.00672.x
  • Friedrich, R. M., Lively, S., & Rubenstein, L. M. (2008). Siblings’ coping strategies and mental health services: A national study of siblings of persons with schizophrenia. Psychiatric Services, 59(3), 261–267. doi:10.1176/ps.2008.59.3.261
  • Gary, K. W., Arango-Lasprilla, J. C., & Stevens, L. F. (2009). Do racial/ethnic differences exist in post-injury outcomes after TBI? A comprehensive review of the literature. Brain Injury, 23, 775–789. doi:10.1080/02699050903200563
  • Glick, I. D., & Dixon, L. (2002). Patient and family support organization services should be included as part of treatment for the severely mentally ill. Journal of Psychiatric Practice, 8, 63–69. doi:10.1097/00131746-200203000-00002
  • 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, 77, 45–61. doi:10.1002/yd.23319987706
  • Hart, T., O’Neil-Pirozzi, T. M., Williams, K. D., Rapport, L. J., Hammond, F., & Kreutzer, J. S. (2007). Racial differences in caregiving patterns, caregiver emotional function, and sources of emotional support following traumatic brain injury. Journal of Head Trauma Rehabilitation, 22, 122–131. doi:10.1097/01.HTR.0000265100.37059.44
  • Hatfield, A. B., & Lefley, H. P. (2005). Future involvement of siblings in the lives of persons with mental illness. Community Mental Health Journal, 41(3), 327–338. doi:10.1007/s10597-005-5005-y
  • Heller, T., & Parker Harris, S. (2012). Disability through the life course. Thousand Oaks, CA: Sage.
  • Hernandez, M., & Barrio, C. (2015). Perceptions of subjective burden among Latino families caring for a loved one with schizophrenia. Community Mental Health Journal, 51, 939–948. doi:10.1007/s10597-015-9881-5
  • Hernandez, M., Barrio, C., & Yamada, A.-M. (2013). Hope and burden among Latino families of adults with schizophrenia. Family Process, 52, 697–708. doi:10.1111/famp.12042
  • Hoffmann, T., Bennett, S., & Del Mar, C. (2013). Evidence-based practice across the health professions. Chatswood, Australia: Churchill Livingstone.
  • Humphreys, I., Wood, R. L., Phillips, C. J., & Macey, S. (2013). The costs of traumatic brain injury: A literature review. ClinicoEconomics and Outcomes Research, 5, 281–287. doi:10.2147/CEOR.S44625
  • 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, 790–799. doi:10.1007/s10597-014-9799-3
  • Kim, H. W., Greenberg, J. S., Seltzer, M. M., & Krauss, M. W. (2003). The role of coping in maintaining the psychological well-being of mothers of adults with intellectual disability and mental illness. Journal of Intellectual Disability Research, 47, 313–327. doi:10.1046/j.1365-2788.2003.00493.x
  • Knight, B. G., & Sayegh, P. (2010). Cultural values and caregiving: The updated sociocultural stress and coping model. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 65, 5–13. doi:10.1093/geronb/gbp096
  • Kopelowicz, A., Zarate, R., Smith, V. G., Mintz, J., & Liberman, R. P. (2003). Disease management in Latinos with schizophrenia: A family-assisted, skills training approach. Schizophrenia Bulletin, 29, 211–228. doi:10.1093/oxfordjournals.schbul.a006999
  • Kopelowicz, A., Zarate, R., Wallace, C. J., Liberman, R. P., Lopez, S. R., & Mintz, J. (2012). The ability of multifamily groups to improve treatment adherence in Mexican Americans with schizophrenia. Archives of General Psychiatry, 69, 265–273. doi:10.1001/archgenpsychiatry.2011.135
  • Kreutzer, J. S., Rapport, L. J., Marwitz, J. H., Harrison-Felix, C., Hart, T., Glenn, M., & Hammond, F. (2009). Caregivers’ well-being after traumatic brain injury: A multicenter prospective investigation. Archives of Physical Medicine and Rehabilitation, 90, 939–946. doi:10.1016/j.apmr.2009.01.010
  • Langlois, J. A., Rutland-Brown, W., & Wald, M. M. (2006). The epidemiology and impact of traumatic brain injury: A brief overview. Journal of Head Trauma Rehabilitation, 21, 375–378. doi:10.1097/00001199-200609000-00001
  • López, S. R., Barrio, C., Kopelowicz, A., & Vega, W. A. (2012). From documenting to eliminating disparities in mental health care for Latinos. American Psychologist, 67, 511–523. doi:10.1037/a0029737
  • Lucksted, A., Stewart, B., & Forbes, C. B. (2008). Benefits and changes for Family to Family graduates. American Journal of Community Psychology, 42, 154–166. doi:10.1007/s10464-008-9195-7
  • Magaña, S., Seltzer, M. M., & Krauss, M. W. (2004). Cultural context of caregiving: Differences in depression between Puerto Rican and non-Latina White mothers of adults with mental retardation. Mental Retardation, 42, 1–11. doi:10.1352/0047-6765(2004)42%3C1:CCOCDI%3E2.0.CO;2
  • Magaña, S., & Smith, M. J. (2006). Health outcomes of midlife and older Latina and Black American mothers of children with developmental disabilities. Mental Retardation, 44, 224–234. doi:10.1352/0047-6765(2006)44%5B224:HOOMAO%5D2.0.CO;2
  • Magaña, S. M., Ramírez García, J. I., Hernández, M. G., & Cortez, R. (2007). Psychological distress among Latino family caregivers of adults with schizophrenia: The roles of burden and stigma. Psychiatric Services, 58, 378–384. doi:10.1176/appi.ps.58.3.378
  • 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
  • McClintock, K., Hall, S., & Oliver, C. (2003). Risk markers associated with challenging behaviours in people with intellectual disabilities: A meta‐analytic study. Journal of Intellectual Disability Research, 47, 405–416. doi:10.1046/j.1365-2788.2003.00517.x
  • Nabors, N., Seacat, J., & Rosenthal, M. (2002). Predictors of caregiver burden following traumatic brain injury. Brain Injury, 16, 1039–1050. doi:10.1080/02699050210155285
  • National Alliance for Caregiving & AARP Public Policy Institute. (2015). Caregiving in the U.S. 2015. Retrieved from www.caregiving.org/caregiving2015/
  • O’Toole, C. J., & Brown, A. A. (2002). No reflection in the mirror: Challenges for disabled lesbians accessing mental health services. Journal of Lesbian Studies, 7, 35–49. doi:10.1300/J155v07n01_03
  • Orsmond, G. I., Seltzer, M. M., Krauss, M. W., & Hong, J. (2003). Behavior problems in adults with mental retardation and maternal well-being: Examination of the direction of effects. American Journal on Mental Retardation, 108, 257–271. doi:10.1352/0895-8017(2003)108%3C257:BPIAWM%3E2.0.CO;2
  • Perkins, E. A., & Haley, W. E. (2010). Compound caregiving: When lifelong caregivers undertake additional caregiving roles. Rehabilitation Psychology, 55, 409–417. doi:10.1037/a0021521
  • Perlick, D. A., Straits-Troster, K., Strauss, J. L., Norell, D., Tupler, L. A., Levine, B., … Dyck, D. G. (2013). Implementation of multifamily group treatment for veterans with traumatic brain injury. Psychiatric Services, 64, 534–540. doi:10.1176/appi.ps.001622012
  • Pickett-Schenk, S. A., Cook, J. A., Steigman, P., Lippincott, R., Bennett, C., & Grey, D. D. (2006). Psychological well-being and relationship outcomes in a randomized study of family-led education. Archives of General Psychiatry, 63, 1043–1050. doi:10.1001/archpsyc.63.9.1043
  • Ramírez García, J., Hernández, B., & Dorian, M. (2009). Mexican American caregivers’ coping efficacy: Associations with caregivers’ distress and positivity to their relatives with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 44, 162–170. doi:10.1007/s00127-008-0420-3
  • Rizzolo, M., Hemp, R., & Braddock, D. (2006). Family support services in the United States. Minneapolis, MN: University of Minnesota Press.
  • Rizzolo, M. C., Hemp, R., Braddock, D., & Schindler, A. (2009). Family support services for persons with intellectual and developmental disabilities: Recent national trends. Intellectual and Developmental Disabilities, 47, 152–155. doi:10.1352/1934-9556-47.2.152
  • Rolland, J. S. (1994). Families, illness, & disability: An integrative treatment model. New York, NY: Basic Books.
  • Rotondi, A. J., Sinkule, J., & Spring, M. (2005). An interactive web-based intervention for persons with TBI and their families: Use and evaluation by female significant others. Journal of Head Trauma Rehabilitation, 20, 173–185. doi:10.1097/00001199-200503000-00005
  • Sallis, J. F., & Owen, N. (2002). Ecological models of health behavior. In K. Glanz, B. K. Rimer, & F. M. Lewis (Eds.), Health behavior and health education: Theory, research, and practice (3rd ed., pp. 462–484). San Francisco, CA: Jossey-Bass.
  • Sander, A. M., Davis, L. C., Struchen, M. A., Atchison, T., Sherer, M., Malec, J. F., & Nakase-Richardson, R. (2007). Relationship of race/ethnicity to caregivers’ coping, appraisals, and distress after traumatic brain injury. Neurorehabilitation, 22, 9–17.
  • Seeman, M. V. (2013). Spotlight on sibling involvement in schizophrenia treatment. Psychiatry: Interpersonal and Biological Processes, 76, 311–322. doi:10.1521/psyc.2013.76.4.311
  • Seltzer, M. M., Greenberg, J. S., Floyd, F. J., Pettee, Y., & Hong, J. (2001). Life course impacts of parenting a child with a disability. American Journal of Mental Retardation, 106, 265–286. doi:10.1352/0895-8017(2001)106<0265:LCIOPA>2.0.CO;2
  • Shen, C., Smyer, M., Mahoney, K., Simon-Rusinowitz, L., Shinogle, J., Norstrand, J., … Vecchio, P. (2008). Consumer-directed care for beneficiaries with mental illness: Lessons from New Jersey’s Cash and counseling program. Psychiatric Services., 59(11), 1299–1306. doi:10.1176/appi.ps.59.11.1299
  • 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
  • Talley, R. C., & Crews, J. E. (Eds.). (2012). Multiple dimensions of caregiving and disability: Research, practice, policy. New York, NY: Springer.
  • U.S. Census Bureau. (2012). Households and families: 2010 Census briefs. Retrieved from https://www.census.gov/prod/cen2010/briefs/c2010br-14.pdf
  • U.S. Department of Health and Human Services. (2009). Schizophrenia (NIH Publication No. 09-3517). Washington, DC: National Institute of Mental Health. Retrieved from http://www.nimh.nih.gov/health/publications/schizophrenia/nimh-schizophrenia-booklet.pdf
  • Veltman, A., Cameron, J. I., & Stewart, D. E. (2002). The experience of providing care to relatives with chronic mental illness. Journal of Nervous and Mental Disease, 190, 108–114. doi:10.1097/00005053-200202000-00008
  • Willging, C. E., Salvador, M., & Kano, M. (2006). Brief reports: Unequal treatment: Mental health care for sexual and gender minority groups in a rural state. Psychiatric Services, 57, 867–870. doi:10.1176/ps.2006.57.6.867
  • Woodman, A. C., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2015). Change in autism symptoms and maladaptive behaviors in adolescence and adulthood: The role of positive family processes. Journal of Autism and Developmental Disorders, 45, 111–126. doi:10.1007/s10803-014-2199-2
  • Yamaki, K., Hsieh, K., & Heller, T. (2009). Health profile of aging family caregivers supporting adults with intellectual and developmental disabilities at home. Intellectual and Developmental Disabilities, 47, 425–435. doi:10.1352/1934-9556-47.6.425

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.