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

Chapter
Part of the Caregiving: Research • Practice • Policy book series (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.

Keywords

Depression Beach Stake Iraq 

Notes

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.

References

  1. 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.PubMedCrossRefGoogle Scholar
  2. 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
  3. 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.CrossRefGoogle Scholar
  4. 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.PubMedCrossRefGoogle Scholar
  5. Bond, J. T., Galinsky, E., & Swanberg, J. E. (1998). The 1997 national study of caregiving workforce. New York: Family and Work Institute.Google Scholar
  6. Braddock, D. (1999). Aging and developmental disabilities: Demographic and policy issues affecting American families. Mental Retardation, 37, 155–161.PubMedCrossRefGoogle Scholar
  7. 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.PubMedCrossRefGoogle Scholar
  8. 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.PubMedCrossRefGoogle Scholar
  9. Carter, R. (2008). Addressing the caregiver crises. Preventing Chronic Disease, 5(1), 1–2.Google Scholar
  10. 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.PubMedCrossRefGoogle Scholar
  11. Donelan, K., Falik, M., & DesRoches, C. (2001). Caregiving: Challenges and implications for women’s health. Women’s Health Issues, 11, 185–200.PubMedCrossRefGoogle Scholar
  12. 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.PubMedCrossRefGoogle Scholar
  13. 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
  14. 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.CrossRefGoogle Scholar
  15. 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
  16. Elliott, T., & Pezent, G. (2008). Family caregivers of older persons in rehabilitation. NeuroRehabilitation, 23, 439–446.PubMedGoogle Scholar
  17. 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
  18. 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.CrossRefGoogle Scholar
  19. 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.CrossRefGoogle Scholar
  20. 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
  21. 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.PubMedCrossRefGoogle Scholar
  22. 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
  23. 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
  24. Fiscella, K., Franks, P. & Shields, C. G. (1997). Perceived family criticism and primary care utilization: Psychosocial and biomedical pathways. Family Process, 36, 25–41.PubMedCrossRefGoogle Scholar
  25. 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.CrossRefGoogle Scholar
  26. 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
  27. 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.CrossRefGoogle Scholar
  28. 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.PubMedCrossRefGoogle Scholar
  29. 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.PubMedCrossRefGoogle Scholar
  30. 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.CrossRefGoogle Scholar
  31. 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.CrossRefGoogle Scholar
  32. 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.CrossRefGoogle Scholar
  33. 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.PubMedCrossRefGoogle Scholar
  34. 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.CrossRefGoogle Scholar
  35. Kramer, B. (1997). Gain in the caregiving experience: Where are we? What next? The Gerontologist, 33, 240–249.Google Scholar
  36. Levine, C., Halper, D., Peist, A., & Gould, D. A. (2010). Bridging troubled waters: Family caregivers, Transitions, and long-term care. Health Affairs, 29, 116–124Google Scholar
  37. Lollar, D. E., & Crews, J. (2003). Redefining the role of public health in disability. Annual Review of Public Health,24, 195–208.Google Scholar
  38. 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.CrossRefGoogle Scholar
  39. MaloneBeach, E., & Zarit, S. (1995). Dimensions of social support and social conflicts as predictors of caregiver depression. International Psychogeriatrics, 7, 25–38.PubMedCrossRefGoogle Scholar
  40. 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
  41. Mechanic D. (1998). Public trust and initiatives for new health care partnerships. Milbank Quarterly, 76, 281–302.PubMedCrossRefGoogle Scholar
  42. Metropolitan Life Insurance Company. (2004). Miles away: The MetLife study of long-distance caregiving. Westport: MetLife Mature Market Institute.Google Scholar
  43. 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
  44. 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
  45. 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.PubMedCrossRefGoogle Scholar
  46. Novack, T. A., & Richards, J. S. (1991). Coping with denial among family members. Archives of Physical Medicine and Rehabilitation, 72, 521.PubMedGoogle Scholar
  47. 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.PubMedCrossRefGoogle Scholar
  48. 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.PubMedCrossRefGoogle Scholar
  49. Parker, M. (2002). Parent care: Preparation and practical considerations for military families CD. Tuscaloosa: University of Alabama.Google Scholar
  50. 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.CrossRefGoogle Scholar
  51. 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.CrossRefGoogle Scholar
  52. 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.CrossRefGoogle Scholar
  53. 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
  54. 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,CrossRefGoogle Scholar
  55. 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.PubMedCrossRefGoogle Scholar
  56. 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.PubMedCrossRefGoogle Scholar
  57. 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
  58. 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.PubMedCrossRefGoogle Scholar
  59. 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.PubMedCrossRefGoogle Scholar
  60. 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.PubMedGoogle Scholar
  61. 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
  62. Schulz, R. (2000). Handbook on dementia caregiving, evidence-based interventions for family caregivers. New York: Springer.Google Scholar
  63. 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.PubMedCrossRefGoogle Scholar
  64. 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.CrossRefGoogle Scholar
  65. 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.PubMedCrossRefGoogle Scholar
  66. Soskolne, V., Acree, M., & Folkman, S. (2000). Social support and mood in gay caregivers of men with AIDS. AIDS & Behavior, 4, 221–232.CrossRefGoogle Scholar
  67. Talley, R. C., & Crews, J. E. (2007). Framing the public health of caregiving. American Journal of Public Health, 97, 224–228.PubMedCrossRefGoogle Scholar
  68. 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.CrossRefGoogle Scholar
  69. Vitaliano, P. P., Zhang, J., & Scanlan, J. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129, 946–972.PubMedCrossRefGoogle Scholar
  70. Vitaliano, P. P., Young, H., & Zhang, J. (2004). Is caregiving a risk factor for illness? Current Directions in Psychological Science, 13, 13–16.CrossRefGoogle Scholar
  71. 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.CrossRefGoogle Scholar
  72. 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.CrossRefGoogle Scholar
  73. Wagner, D., & Neal, M. (1994). Caregiving and work: Consequences, correlates and work responsibilities. Educational Gerontology, 20, 645–663.CrossRefGoogle Scholar
  74. 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.PubMedGoogle Scholar
  75. 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.CrossRefGoogle Scholar
  76. Wisensale, S. (2002). The inescapable balancing act: Work, family, and caregiving. Gerontologist, 42, 421–424.Google Scholar
  77. 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.CrossRefGoogle Scholar
  78. 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.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2012

Authors and Affiliations

  1. 1.Department of Educational PsychologyTexas A&M UniversityCollege StationUSA
  2. 2.School of Social WorkUniversity of AlabamaTuscaloosaUSA

Personalised recommendations