Education and Support Programs for Family Caregivers: Current Practices Across Health-Care Scenarios

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

Abstract

Family caregiving in the United States occurs within the context of several important societal changes that impinge directly upon the experience and adjustment of ­persons who live with a chronic and debilitating health condition. In their day-to-day routines, families have more influence on the personal health of each member than any other individual or any health service provider (Elliott & Shewchuk, 2004). Unfortunately, family members are typically viewed as informal, ancillary factors in health service delivery and most health-care delivery systems overlook their role as front-line service providers for many persons who live with chronic and debilitating health-conditions.

Keywords

Depression Transportation Undercut Dadds 

Notes

Acknowledgments

This chapter was supported by grants from the National Institute on Child Health and Human Development (1 R01 HD37661-01A3), and from 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 from the National Center for Injury Prevention and Control and the Disabilities Prevention Program, National Center for Environmental Health (grant number R49/CCR412718-01). Its contents are solely the responsibility of the author and do not necessarily represent the official views of the funding agencies.

References

  1. Acton, G. J., & Kang, J. (2001). Interventions to reduce the burden of caregiving for an adult with dementia: A meta-analysis. Research in Nursing & Health, 24, 349–360.CrossRefGoogle Scholar
  2. Altman, B. A., Cooper, P. F., & Cunningham, P. J. (1999). The case of disability in the family: Impact on health care utilization and expenditures for nondisabled members. The Milbank Quarterly, 77, 39–73.PubMedCrossRefGoogle Scholar
  3. Bourgeois, M. S., Schulz, R., & Burgio, L. (1996). Intervention for caregivers of patients with Alzheimer’s disease: A review and analysis of content, process, and outcomes. International Journal of Human Development, 43, 35–92.CrossRefGoogle Scholar
  4. 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
  5. 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
  6. Bucher, J. A., & Houts, P. A. (1999). Problem-solving through electronic bulletin boards. Journal of Psychosocial Oncology, 16(3–4), 85–91.CrossRefGoogle Scholar
  7. Burgio, L., Corcoran, M., Lichstein, K., Nichols, L., Czaja, S., Gallagher-Thompson, D., et al. (2001). Judging outcomes in psychosocial interventions for dementia caregivers: The problem of treatment implementation. Gerontologist, 41, 481–489.PubMedGoogle Scholar
  8. Burman, B., & Margolin, G. (1992). Analysis of the association between marital relationships and health problems: An interactional perspective. Psychological Bulletin, 112, 39–63.PubMedCrossRefGoogle Scholar
  9. Campbell, T. L., & Patterson, J. M. (1995). The effectiveness of family interventions in the treatment of physical illness. Journal of Marital and Family Therapy, 21, 545–583.CrossRefGoogle Scholar
  10. Crewe, N. (1993). Spousal relationships and disability. In F. P. Haseltine, S. Cole, & D. Gray (Eds.), Reproductive issues for persons with physical disabilities (pp. 141–151). Baltimore: Paul H. Brookes Publishing.Google 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., et al. (2002). Challenged to care: Informal caregivers in a changing health system. Health Affairs, 21, 222–231.PubMedCrossRefGoogle Scholar
  13. Eisendorfer, C., Craja, S., Loewenstein, D., Rubert, M., Arguelles, S., Mitrani, V., et al. (2003). The effect of a family therapy and technology-based intervention on caregiver depression. The Gerontologist, 43, 521–531.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, 65, 406–422.PubMedCrossRefGoogle Scholar
  15. Elliott, T., Berry, J. W., & Grant, J. S. (2009). Problem-solving training for family caregivers of women with disabilities: A randomized clinical trial. Behaviour Research and Therapy, 47, 548–558.PubMedCrossRefGoogle Scholar
  16. 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 controlled trial. Behaviour Research and Therapy, 46, 1220–1229.PubMedGoogle Scholar
  17. Elliott, T., Rivera, P., & Tucker, E. (2004). Groups in behavioral health and medical settings. In J. L. DeLucia-Waack, D. Gerrity, C. Kalodner, & M. Riva (Eds.), Handbook of group counseling and psychotherapy (pp. 338–350). New York: Sage.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. (2004). Family adaptation in illness, disease, and disability: Implications for research, policy, and practice. In J. Racynski, L. Bradley, & L. Leviton (Eds.), Health and behavior handbook (Vol. II, pp. 379–403). Washington, D. C.: American Psychological Association Press.Google Scholar
  20. Elliott, T., Shewchuk, R., & Richards, J. S. (1999). Caregiver social problem-solving abilities and family member adjustment to recent-onset physical disability. Rehabilitation Psychology, 44, 104–123.CrossRefGoogle Scholar
  21. 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
  22. Frank, R. G. (1997). Lessons from the great battle: Health care reform 1992-1994. Archives of Physical Medicine and Rehabilitation, 78, 120–124.PubMedCrossRefGoogle Scholar
  23. Gallagher-Thompson, D., Arean, P., Rivera, P., & Thompson, L. (2001). A psychoeducational intervention to reduce stress in Hispanic caregivers. Clinical Gerontologist, 23(1–2), 17–32.CrossRefGoogle Scholar
  24. Gallagher-Thompson, D., & Coon, D. W. (2007). Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging, 22, 37–51.PubMedCrossRefGoogle Scholar
  25. Gallagher-Thompson, D., Coon, D., Solano, N., Ambler, C., Rabinowitz, Y., & Thompson, L. (2003). Change in indices of distress among latino and anglo female caregivers of elderly relatives with dementia: Site-specific results from the REACH national collaborative study. The Gerontologist, 43, 580–591.PubMedGoogle Scholar
  26. Gitlin, L., Winter, L., Corcoran, M., Dennis, M., Schinfeld, S., & Hauck, W. (2003). Effects of the home-environmental skill-building program on the caregiver-care recipient dyad: 6-month outcomes from the Philadelphia REACH initiative. The Gerontologist, 43, 532–546.PubMedGoogle 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., Giger, J., & Bartolucci, A. (2001). Social problem-solving telephone partnerships with family caregivers of persons with stroke. International Journal of Rehabilitation Research, 24(3), 181–189.PubMedCrossRefGoogle Scholar
  29. 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
  30. Haaga, D. A., & Stiles, W. (2000). Randomized clinical trials in psychotherapy research: Methodology, design, and evaluation. In C. R. Snyder & R. E. Ingram (Eds.), Handbook of psychological change: Psychotherapy processes and practices for the 21st Century (pp. 14–39). New York: Wiley.Google Scholar
  31. Hayes, A. M., Laurenceau, J. P., Feldman, G., Strauss, J., & Cardaciotto, L. (2007). Change is not always linear: The study of nonlinear and discontinuous patterns of change in psychotherapy. Clinical Psychology Review, 27, 715–723.PubMedCrossRefGoogle Scholar
  32. Horn, S. D. (1997). Clinical practice improvement methodology: Implementation and evaluation. New York: Faulkner & Gray.Google Scholar
  33. Houts, P. S., Nezu, A. M., Nezu, C. M., & Bucher, J. A. (1996). The prepared family caregiver: A problem-solving approach to family caregiver education. Patient Education and Counseling, 27, 63–73.PubMedCrossRefGoogle Scholar
  34. 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
  35. Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. Washington D. C.: National Academy Press.Google Scholar
  36. Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173–202.PubMedCrossRefGoogle Scholar
  37. King, A. C., Baumann, K., O’Sullivan, P., Wilcox, S., & Castro, C. (2002). Effects of moderate-intensity exercise on physiological, behavioral, and emotional responses to family caregiving: A randomized controlled trial. Journals of Gerontology, 57, M26–M36.PubMedGoogle Scholar
  38. Kramer, B. J. (1997). Gain in the caregiving experience: Where are we? What next? The Gerontologist, 37, 218–232.PubMedGoogle Scholar
  39. Lakdawalla, D. N., Bhattacharya, J., & Goldman, D. (2004). Are the young becoming more ­disabled? Health Affairs, 23(1), 168–176.PubMedCrossRefGoogle Scholar
  40. Lengnick-Hall, C. A. (1995). The patient as the pivot point for quality in health care delivery. Hospital & Health Services Administration, 40, 25–39.Google Scholar
  41. Levant, R. (2004). The empirically-validated treatment movement: A practitioner/educator perspective. Clinical Psychology: Science & Practice, 11, 219–224.CrossRefGoogle Scholar
  42. Leviton, L. C. (1996). Integrating psychology and public health: Challenges and opportunities. American Psychologist, 51, 42–51.CrossRefGoogle Scholar
  43. Lollar, D. J., & Crews, J. E. (2003). Redefining the role of public health in disability. Annual Review of Public Health, 24, 195–208.PubMedCrossRefGoogle Scholar
  44. Lovett, S., & Gallagher, D. (1988). Psychoeducational interventions for family caregivers: Preliminary efficacy data. Behavior Therapy, 19, 321–330.CrossRefGoogle Scholar
  45. Mahoney, D. F., Burns, R., & Harrow, B. (2000). From intervention studies to public policy: Translating research into practice. In R. Schulz (Ed.), Handbook on dementia caregiving: Evidenced-based interventions in family caregiving (pp. 249–281). New York: Springer.Google Scholar
  46. Mahoney, D. F., Tarlow, B., & Jones, R. (2003). Effects of an automated telephone support system on caregiver burden and anxiety: Findings from the REACH for TLC intervention study. The Gerontologist, 43, 556–567.PubMedGoogle Scholar
  47. Martire, L. M., Lustig, A., Schulz, R., Miller, G., & Hegelson, V. (2004). Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology, 23, 599–611.PubMedCrossRefGoogle Scholar
  48. Mechanic, D. (1998). Public trust and initiatives for new health care partnerships. The Milbank Quarterly, 76, 281–302.PubMedCrossRefGoogle Scholar
  49. Miller, D., Shewchuk, R., Elliott, T., & Richards, J. S. (2000). Nominal group technique: A process for identifying diabetes self-care issues among patients and caregivers. The Diabetes Educator, 26, 305–314.PubMedCrossRefGoogle Scholar
  50. Mittelman, M. S., Roth, D., Coon, D., & Haley, W. (2004). Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer’s disease. American Journal of Psychiatry, 161, 850–856.PubMedCrossRefGoogle Scholar
  51. Mittelman, M. S., Roth, D., Haley, W., & Zarit, S. (2004). Effects of a caregiver intervention on negative caregiver appraisals of behavior problems in patients with Alzheimer’s disease: Results of a randomized trial. Journal of Gerontology: Psychological Sciences, 59B, P27–P34.Google Scholar
  52. Moore, L. I. (1989). Behavioral changes in male spinal cord injured following two types of psychosocial rehabilitation experience. Unpublished doctoral dissertation: St. Louis University.Google Scholar
  53. Moore, J. E., & Chaney, E. F. (1985). Outpatient group treatment of chronic pain: Effects of spouse involvement. Journal of Consulting and Clinical Psychology, 53, 326–339.PubMedCrossRefGoogle Scholar
  54. 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
  55. Olkin, R. (1999). What psychotherapists should know about disability. New York: Guilford Press.Google Scholar
  56. Pakenham, K., Dadds, M., & Lennon, H. (2002). The efficacy of a psychosocial intervention for HIV/AIDS caregiving dyads and individual caregivers: A controlled treatment outcome study. AIDS Care, 14, 731–750.PubMedCrossRefGoogle Scholar
  57. Partnerships for Solutions. (2004). Chronic conditions: Making the case for ongoing care. Baltimore: Johns Hopkins University.Google Scholar
  58. Quittner, A. L., Opipari, L., Regoli, M., Jacobsen, J., & Eigen, H. (1992). The impact of caregiving and role strain on family life: Comparisons between mothers of children with cystic fibrosis and matched controls. Rehabilitation Psychology, 37, 275–290.CrossRefGoogle 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. Sahler, O., Fairclough, D., Phipps, S., Mulhern, R., Dolgin, M., Noll, R., et al. (2005). Using problem-solving skills training to reduce negative affectivity in mothers of children with newly diagnosed cancer: Report of a multisite randomized trial. Journal of Consulting and Clinical Psychology, 73, 272–283.PubMedCrossRefGoogle Scholar
  61. Sahler, O., Varni, J. W., Fairclough, D., Butler, R., Noll, R., Dolgin, M., et al. (2002). Problem-solving skills training for mothers of children with newly diagnosed cancer: A randomized trial. Journal of Developmental and Behavioral Pediatrics, 23, 77–86.PubMedGoogle Scholar
  62. 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, D. C.: American Psychological Association Press.CrossRefGoogle Scholar
  63. Sorensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42, 356–372.PubMedGoogle Scholar
  64. Steiner, V., & Pierce, L. (2002). Building a web of support for caregivers of persons with stroke. Topics in Stroke Rehabilitation, 9(3), 102–111.PubMedCrossRefGoogle Scholar
  65. Talley, R. C., & Crews, J. E. (2007). Framing the public health of caregiving. American Journal of Public Health, 97, 224–228.PubMedCrossRefGoogle Scholar
  66. Thoits, P. A. (1995). Stress, coping, and social support processes: Where are we? What next? Journal of Health and Social Behavior(suppl.), 53–79.Google Scholar
  67. Toseland, R., Blanchard, C., & McCallion, P. (1995). A problem solving intervention for caregivers of cancer patients. Social Science and Medicine, 40, 517–528.PubMedCrossRefGoogle Scholar
  68. Toseland, R., McCallion, P., Smith, T., Huck, S., Bourgeois, P., & Garstka, T. (2001). Health education groups for caregivers in an HMO. Journal of Clinical Psychology, 57, 551–570.PubMedCrossRefGoogle Scholar
  69. Tucker, J. A., & Reed, G. (2008). Evidentiary pluralism as a strategy for research and evidence-based practice in rehabilitation psychology. Rehabilitation Psychology, 53, 279–293.PubMedCrossRefGoogle Scholar
  70. U. S. Department of Health and Human Services. (2000). Healthy people 2010. Washington, D. C.: U. S. Department of Health and Human Services. Available at http://www.health-gov.healthypeople.
  71. 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
  72. Wade, S. L., Carey, J., & Wolfe, C. (2006). The efficacy of an online cognitive-behavioral family intervention in improving child behavior and social competence following pediatric brain injury. Rehabilitation Psychology, 51, 179–189.CrossRefGoogle Scholar
  73. Wagner, E. H., Austin, B. T., & Von Korff, M. (1996). Organizing care for patients with chronic illness. The Milbank Quarterly, 74, 511–544.PubMedCrossRefGoogle 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. Surgeon General’s Workshop on Women’s Mental Health, Workshop Report (November 30 – December 1, 2005). (2005). Washington, D. C.: Department of Health and Human Services.Google Scholar
  76. Zarit, S. H., & Pearlin, L. I. (1993). Family caregiving: Integrating informal and formal systems for care. In S. H. Zarit, L. I. Pearlin, & K. W. Schaie (Eds.), Caregiving systems: Informal and formal helpers (pp. 303–316). Hillsdale: Lawrence Erlbaum.Google Scholar

Copyright information

© Springer Science+Business Media, LLC 2011

Authors and Affiliations

  1. 1.Department of Educational Psychology, College of Education and Human DevelopmentTexas A&M University (TAMU)College StationUSA

Personalised recommendations