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Family caregivers and Health Care Providers: Developing Partnerships for a Continuum of Care and Support

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Multiple Dimensions of Caregiving and Disability

Part of the book series: Caregiving: Research • Practice • Policy ((CARE))

Abstract

Contrary to popular opinion, most American families do not abandon family members with chronic disease and disability to paid professionals and paraprofessionals. Family caregivers “…constitute the largest group of care providers” in the United states (Parish et al., Mental Retardation 41(3):174–187, 2003), and as they provide the majority of long-term care in this country, the market value of their activity far exceeds that spent on formal health care and nursing home care (Vitaliano et al., Current Directions in Psychological Science 13:13–16, 2004). The number of family caregivers will continue to increase as our society changes with an aging populace and an escalating rate of chronic, debilitating health conditions (Carter, Preventing Chronic Disease 5(1):1–2, 2008). As the number of caregivers in society increases and the health of care recipients is dependent upon the ability of the family caregivers to operate competently as de facto health care providers, the health and well-being of family caregivers is a public health priority (Talley and Crews, American Journal of Public Health 97:224–228, 2007). Yet, most health care service delivery systems and practitioners fail to acknowledge and affirm the central role families play in extending health care services.

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References

  • Allman, R. M., Sawyer-Baker, P., Maisiak, R. M., Sims, R. V., & Roseman, J. M. (2004). Racial similarities and differences in predictors of mobility change over eighteen months. Journal of General Internal Medicine, 19, 1118–1126.

    Article  PubMed  Google Scholar 

  • Berry, J. W., Elliott, T., Grant, J., Edwards, G., & Fine, P. R. (in press). Does problem solving training for family caregivers benefit care recipients with severe disabilities? A latent growth model of the Project CLUES randomized clinical trial. Rehabilitation Psychology.

    Google Scholar 

  • Baker, P. S., Bodner, E. V., & Allman, R. M. (2003). Measuring life-space mobility in community-dwelling older adults. Journal of American Geriatric Society, 51, 1610–1614.

    Article  Google Scholar 

  • Billings, D. W., Folkman, S., Acree, M., & Moskowitz, J. (2000). Coping and physical health during caregiving: The roles of positive and negative affect. Journal of Personality and Social Psychology, 79, 131–142.

    Article  PubMed  Google Scholar 

  • Bond, J. T., Galinsky, E., & Swanberg, J. E. (1998). The 1997 national study of caregiving workforce. New York: Family and Work Institute.

    Google Scholar 

  • Braddock, D. (1999). Aging and developmental disabilities: Demographic and policy issues affecting American families. Mental Retardation, 37, 155–161.

    Article  PubMed  Google Scholar 

  • Brodaty, H., Green, A., & Koschera, A. (2003). Meta-analysis of psychoeducational interventions for caregivers of persons with dementia. Journal of the American Geriatrics Society, 51, 657–664.

    Article  PubMed  Google Scholar 

  • Brown, R., Pain, K., Berwald, C., Hirschi, P., Delehanty, R., & Miller, H. (1999). Distance education and caregiver support groups: Comparison of traditional and telephone groups. Journal of Head Trauma Rehabilitation, 14, 257–268.

    Article  PubMed  Google Scholar 

  • Carter, R. (2008). Addressing the caregiver crises. Preventing Chronic Disease, 5(1), 1–2.

    Google Scholar 

  • Chwalisz, K., & Stark-Wroblewski, K. (1996). The subjective experiences of spouse caregivers of persons with brain injuries: A qualitative analysis. Applied Neuropsychology, 3, 28–40.

    Article  PubMed  Google Scholar 

  • Donelan, K., Falik, M., & DesRoches, C. (2001). Caregiving: Challenges and implications for women’s health. Women’s Health Issues, 11, 185–200.

    Article  PubMed  Google Scholar 

  • Donelan, K., Hill, C. A., Hoffman, C., Scoles, K., Hoffman, P. H., Levine, C., & Gould, D. (2002). Challenged to care: informal caregivers in a changing health system. Health Affairs, 21, 222–231.

    Article  PubMed  Google Scholar 

  • Eibner, C. (2008). Invisible wounds of war: Quantifying the societal costs of psychological and cognitive injuries. Testimony presented before the Joint Economic Committee on June 12, 2008. Santa Monica, CA: Rand Corporation.

    Google Scholar 

  • Elliott, T., & Berry, J. W. (2009). Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injury: A randomized controlled trial. Journal of Clinical Psychology, 69, 406–422.

    Article  Google Scholar 

  • Elliott, T., & Kurylo, M. (2000). Hope over disability: Lessons from one young woman’s triumph. In C. R. Snyder (Ed.), The handbook of hope: Theory, measures, and applications (pp. 373–386). New York: Academic Press.

    Google Scholar 

  • Elliott, T., & Pezent, G. (2008). Family caregivers of older persons in rehabilitation. NeuroRehabilitation, 23, 439–446.

    PubMed  Google Scholar 

  • Elliott, T., & Rivera, P. (2003). The experience of families and their carers in healthcare. In S. Llewelyn & P.Kennedy (Eds.), Handbook of clinical dealth psychology (pp. 61–77). Oxford: Wiley.

    Google Scholar 

  • Elliott, T., & Shewchuk, R. (2002). Using the nominal group technique to identify the problems experienced by persons who live with severe physical disability. Journal of Clinical Psychology in Medical Settings, 9, 65–76.

    Article  Google Scholar 

  • Elliott, T., Shewchuk, R., & Richards, J. S. (2001). Family caregiver problem solving abilities and adjustment during the initial year of the caregiving role. Journal of Counseling Psychology, 48, 223–232.

    Article  Google Scholar 

  • Elliott, T., Shewchuk, R., Richards, J. S., & Chen, Y. (2003, April). Predicting changes in depression status in family caregivers of persons with recent spinal cord injuries. Paper presented at the conference conducted by the Centers for Disease Control entitled Safety in numbers: Working together from research into practice, Atlanta.

    Google Scholar 

  • Elliott, T., Brossart, D., Berry, J. W. & Fine, P. R. (2008). Problem-solving training via videoconferencing for family caregivers of persons with spinal cord injuries: A randomized clinical trial. Behaviour Research and Therapy, 46, 1220–1229.

    Article  PubMed  Google Scholar 

  • Elliott, T., & Rivera, P. (2003). The experience of families and their carers in healthcare. In S. Llewelyn & P.Kennedy (Eds.), Handbook of clinical health psychology (pp. 61–77). Oxford: Wiley & Sons.

    Google Scholar 

  • Elliott, T., Phillips, C., Patnaik, A., Naiser, E., Fournier, C., Miller, T., Hawes, C., & Dyer, J. (2011). Medicaid personal care services and caregivers’ reports of children’s health: The dynamics of a relationship. Health Services Research, 46, 1803–1821.

    Google Scholar 

  • Fiscella, K., Franks, P. & Shields, C. G. (1997). Perceived family criticism and primary care utilization: Psychosocial and biomedical pathways. Family Process, 36, 25–41.

    Article  PubMed  Google Scholar 

  • Fiske, V., Coyne, J., & Smith, D. A. (1991). Couples coping with myocardial infarction: An empirical reconsideration of the role of overprotectiveness. Journal of Family Psychology, 5, 4–20.

    Article  Google Scholar 

  • Fox, S. (2004). Older Americans and the Internet. Internet & American Life Project, Washington, DC 20036. http://www.pewinternet.org. Accessed 24 April 2012.

    Google Scholar 

  • Glueckauf, R. L., Fritz, S., Ecklund-Johnson, E., Liss, H., Dages, P., & Carney, P. (2002). Videoconferencing-based family counseling for rural teenagers with epilepsy: Phase 1 findings. Rehabilitation Psychology, 47, 49–72.

    Article  Google Scholar 

  • Grant, J., Elliott, T., Weaver, M. Bartolucci, A., & Giger, J. (2002). A telephone intervention with family caregivers of stroke survivors after hospital discharge. Stroke, 33, 2060–2065.

    Article  PubMed  Google Scholar 

  • Grant, J., Elliott, T., Weaver, M., Glandon, G., & Giger, J. (2006). Social problem-solving abilities, social support, and adjustment of family caregivers of stroke survivors. Archives of Physical Medicine and Rehabilitation, 87, 343–350.

    Article  PubMed  Google Scholar 

  • Hooker, K., Monahan, D., Bowman, S., Frazier, L., & Shifren, K. (1998). Personality counts for a lot: Predictors of mental and physical health of spouse caregivers in two disease groups. Journals of Gerontology, 53B, P73–P85.

    Article  Google Scholar 

  • Hufford, B. J., Glueckauf, R. L., & Webb, P. M. (1999). Home-base, interactive videoconferencing for adolescents with epilepsy and their families. Rehabilitation Psychology, 44, 176–193.

    Article  Google Scholar 

  • King, L. A., Scollon, C., Ramsey, C., & Williams, T. (2000). Stories of life transition: subjective well-being and ego development in parents of children with Down’s syndrome. Journal of Research in Personality, 34, 509–536.

    Article  Google Scholar 

  • Kinsella, G., Ong, B., Murtagh, D., Prior, M., & Sawyer, M. (1999). The role of the family for behavioral outcome in children and adolescents following traumatic brain injury. Journal of Consulting and Clinical Psychology, 67, 116–123.

    Article  PubMed  Google Scholar 

  • Knussen, C., Tolson, D., Swan, I., Stott, D., & Brogan, C. (2005). Stress proliferation in caregivers: The relationships between caregiving stressors and deterioration in family relationships. Psychology & Health, 20, 207–221.

    Article  Google Scholar 

  • Kramer, B. (1997). Gain in the caregiving experience: Where are we? What next? The Gerontologist, 33, 240–249.

    Google Scholar 

  • Levine, C., Halper, D., Peist, A., & Gould, D. A. (2010). Bridging troubled waters: Family caregivers, Transitions, and long-term care. Health Affairs, 29, 116–124

    Google Scholar 

  • Lollar, D. E., & Crews, J. (2003). Redefining the role of public health in disability. Annual Review of Public Health,24, 195–208.

    Google Scholar 

  • Long, M. P., Glueckauf, R. L., & Rasmussen, J. (1998). Developing family counseling interventions for adults with episodic neurological disabilities: Presenting problems, persons involved, and problem severity. Rehabilitation Psychology, 43, 101–117.

    Article  Google Scholar 

  • MaloneBeach, E., & Zarit, S. (1995). Dimensions of social support and social conflicts as predictors of caregiver depression. International Psychogeriatrics, 7, 25–38.

    Article  PubMed  Google Scholar 

  • Martin, J., & Parker, M. W. (2003). Understanding the importance of elder care preparations in the context of 21st century military service. Geriatric Care Management, 13, 3–7.

    Google Scholar 

  • Mechanic D. (1998). Public trust and initiatives for new health care partnerships. Milbank Quarterly, 76, 281–302.

    Article  PubMed  Google Scholar 

  • Metropolitan Life Insurance Company. (2004). Miles away: The MetLife study of long-distance caregiving. Westport: MetLife Mature Market Institute.

    Google Scholar 

  • Moen, P., Robison, J., & Fields, V. (2000). Women’s work and caregiving roles: A life course approach. In E. P. Stoller & R. C. Gibson (Eds.), Worlds of difference: Inequality in the aging experience (3rd ed.). Thousand Oaks: Pine Forge Press.

    Google Scholar 

  • National Alliance for Caregiving. (2009). Caregiving in the U.S. http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf. Accessed 23 April 2012.

    Google Scholar 

  • Navaie-Waliser, M., Feldman, P. H., Gould, D., Levine, C., Kuerbis, A., & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92, 409–413.

    Article  PubMed  Google Scholar 

  • Novack, T. A., & Richards, J. S. (1991). Coping with denial among family members. Archives of Physical Medicine and Rehabilitation, 72, 521.

    PubMed  Google Scholar 

  • Parish, S. L., Pomeranz-Essley, A., & Braddock, D. (2003). Family support in the United states: Financing trends and emerging initiatives. Mental Retardation, 41(3), 174–187.

    Article  PubMed  Google Scholar 

  • Park, C. L. & Folkman, S. (1997). Stability and change in psychosocial resources during caregiving and bereavement in partners of men with AIDS. Journal of Personality, 65, 421–447.

    Article  PubMed  Google Scholar 

  • Parker, M. (2002). Parent care: Preparation and practical considerations for military families CD. Tuscaloosa: University of Alabama.

    Google Scholar 

  • Parker, M., Baker, P. S., & Allman, R. M. (2001). A life-space approach to functional assessment of mobility in the elderly. Journal of Gerontological Social Work, 35(4), 35–55.

    Article  Google Scholar 

  • Parker, M. W., Call, V. R., Dunkle, R., & Vaitkus, M. (2002). “Out of sight” but not “out of mind”: Parent care contact and worry among military officers who live long distances from parents. Military Psychology, 14, 257–277.

    Article  Google Scholar 

  • Parker, M. W., Call, V. R., Toseland, R., Vaitkus, M., & Roff, L. (2003a). Employed women and their aging family convoys: A life course model of parent care assessment and intervention. Journal of Gerontological Social Work, 40(1), 101–122.

    Article  Google Scholar 

  • Parker, M. W., Roff, L., Toseland, R., & Klemmack, D. (2003b, March). The Hartford military parent care project: A psycho-social educational intervention with long distance parent care providers. Poster presented at First National Gerontological Social Work Conference, held in conjunction with Council of Social Work Education Annual Conference, Atlanta, GA.

    Google Scholar 

  • Parker, M. W., Church, W., & Toseland, R. W. (2006). Caregiving at a distance. In B. Berkman & S. D’Ambruoso (Eds.), Handbook on social work in health and aging (pp. 391–406). New York: Oxford University Press,

    Chapter  Google Scholar 

  • Prochaska, J. O., & DiClemente, C. C. (1983). Stages and processes of self-change of smoking: toward an integrative model of change. Journal of Consulting and Clinical Psychology, 51, 390–395.

    Article  PubMed  Google Scholar 

  • Quittner, A. L., Glueckauf, R., & Jackson, D. (1990). Chronic parenting stress: Moderating versus mediating effects of social support. Journal of Personality and Social Psychology, 59, 1266–1278.

    Article  PubMed  Google Scholar 

  • Reinhard, S. C., Krassner, E., & Houser, A. (2011). How the affordable care Act can help move states toward a high-performing system of long-term services and supports. Health Affairs, 30, 447–453.

    Google Scholar 

  • Rivara, J., Jaffe, K., Polissar, N., Fay, G., Liao, S., & Martin, K. (1996). Predictors of family functioning and change 3 years after traumatic brain injury in children. Archives of Physical Medicine and Rehabilitation, 77, 754–764.

    Article  PubMed  Google Scholar 

  • Rivera, P., Elliott, T., Berry, J., & Grant, J. (2008). Problem-solving training for family caregivers of persons with traumatic brain injuries: A randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 89, 931–941.

    Article  PubMed  Google Scholar 

  • Roberts, J., Brown, G. B., Streiner, D., Gafni, A., Pallister, R., Hoxby, H., et al. (1995). Problem-solving counselling or phone-call support for outpatients with chronic illness: Effective for whom? Canadian Journal of Nursing Research, 27(3), 111–137.

    PubMed  Google Scholar 

  • Roff, L., Toseland, R., Martin, J., Fine, C., & Parker, M. W. (2003). Family-social tasks in long distance caregiving with military families. Geriatric Care Management, 13, 23–29.

    Google Scholar 

  • Schulz, R. (2000). Handbook on dementia caregiving, evidence-based interventions for family caregivers. New York: Springer.

    Google Scholar 

  • Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association, 282, 2215–2219.

    Article  PubMed  Google Scholar 

  • Shewchuk, R., & Elliott, T. (2000). Family caregiving in chronic disease and disability: Implications for rehabilitation psychology. In R. G. Frank & T. Elliott (Eds.), Handbook of rehabilitation psychology (pp. 553–563). Washington: American Psychological Association Press.

    Chapter  Google Scholar 

  • Shewchuk, R., Richards, J. S., & Elliott, T. (1998). Dynamic processes in health outcomes among caregivers of patients with spinal cord injuries. Health Psychology, 17, 125–129.

    Article  PubMed  Google Scholar 

  • Soskolne, V., Acree, M., & Folkman, S. (2000). Social support and mood in gay caregivers of men with AIDS. AIDS & Behavior, 4, 221–232.

    Article  Google Scholar 

  • Talley, R. C., & Crews, J. E. (2007). Framing the public health of caregiving. American Journal of Public Health, 97, 224–228.

    Article  PubMed  Google Scholar 

  • Thompson, S. C., Medvene, L., & Freedman, D. (1995). Caregiving in the close relationships of cardiac patients: Exchange, power, and attributional perspectives on caregiver resentment. Personal Relationships, 2, 125–142.

    Article  Google Scholar 

  • Vitaliano, P. P., Zhang, J., & Scanlan, J. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129, 946–972.

    Article  PubMed  Google Scholar 

  • Vitaliano, P. P., Young, H., & Zhang, J. (2004). Is caregiving a risk factor for illness? Current Directions in Psychological Science, 13, 13–16.

    Article  Google Scholar 

  • Wade, S. L., Carey, J., & Wolfe, C. R. (2006a). An online family intervention to reduce parental distress following pediatric brain injury. Journal of Consulting and Clinical Psychology, 74, 445–454.

    Article  Google Scholar 

  • Wade, S. L., Carey, J., & Wolfe, C. R. (2006b). The efficacy of an online cognitive-behavioral family intervention in improving child behavior and social competence in pediatric brain injury. Rehabilitation Psychology, 51, 179–189.

    Article  Google Scholar 

  • Wagner, D., & Neal, M. (1994). Caregiving and work: Consequences, correlates and work responsibilities. Educational Gerontology, 20, 645–663.

    Article  Google Scholar 

  • Willer, B. S., Allen, K., Liss, M., & Zicht, M. (1991). Problems and coping strategies of individuals with traumatic brain injury and their spouses. Archives of Physical Medicine and Rehabilitation, 72, 460–464.

    PubMed  Google Scholar 

  • Williamson, G. M., & Schulz, R. (1995). Caring for a family member with cancer: Past communal behavior and affective reactions. Journal of Applied Social Psychology, 25, 93–116.

    Article  Google Scholar 

  • Wisensale, S. (2002). The inescapable balancing act: Work, family, and caregiving. Gerontologist, 42, 421–424.

    Google Scholar 

  • Ybema, J., Kuijer, R., Bruunk, B., DeJong, G, & Sanderman, R. (2001). Depression and perceptions of inequity among couples facing cancer. Personality and Social Psychology Bulletin, 27, 3–13.

    Article  Google Scholar 

  • Ybema, J., Kuijer, R., Hagedoorn, M., & Bruunk, B. (2002). caregiver burnout among intimate partners of patients with a severe illness: An equity perspective. Personal Relationships, 9, 73–88.

    Article  Google Scholar 

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Acknowledgment

This chapter was supported by grants to Timothy R. Elliott from the National Institute on Child Health and Human Development (1 R01 HD37661-01A3); the National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services, U.S. Department of Education (grant numbers H133B90016 and H133A021927); and the National Center for Injury Prevention and Control and the Disabilities Prevention Program, National Center for Environmental Health (grant number R49/CCR412718-01).

The contents of this chapter are solely the responsibility of the authors and do not necessarily represent the official views of the funding agencies.

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Elliott, T., Parker, M. (2012). Family caregivers and Health Care Providers: Developing Partnerships for a Continuum of Care and Support. In: Talley, R., Crews, J. (eds) Multiple Dimensions of Caregiving and Disability. Caregiving: Research • Practice • Policy. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-3384-2_9

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