Skip to main content
SpringerLink
Log in

Accessibility of Caregiver Education and Support Programs: Reaching Hard-to-Reach Caregivers

  • Chapter
  • First Online:
Education and Support Programs for Caregivers

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

Abstract

Although family caregivers provide a tremendous amount of care to loved ones, they often carry out these activities with little to no formal training (McDonald, Stetz, & Compton, 1996; Navaie-Waliser et al., 2001; Navaie-Waliser, Feldman, et al., 2002). Lack of training and support for the caregiver often exacerbates the caregiver’s distress (Knight, Lutzky, & Macofsky-Urban, 1993; Gallo, Reichel, & Andersen, 1995; Schmall, 1995). Recent studies have shown that family caregivers experience considerable anxiety about the provision of care (Hennessy, John, & Anderson, 1999; Miller, Shewchuk, Elliot, & Richards, 2000; Silliman, Bhatti, Khan, Dukes, & Sullivan, 1996), have difficulty coping with psychological needs of patients and themselves (Hennessy et al., 1999), have concerns about decision making and communication problems with secondary support systems and the formal health-care system (Hennessy et al., 1999; Silliman et al., 1996), and feel less than adequately prepared to take on challenging tasks such as medication management (Miller et al., 2000).

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • 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(5), 349–360.

    Article  Google Scholar 

  • Andersen, R., & Newman, F. (1973). Societal and individual determinants of medical care utilization in the United States. Milbank Memorial Fund Quarterly, 51(1), 95–124.

    Article  Google Scholar 

  • Anderson, R. T., Bradham, D. D., Jackson, S., Heuser, M. D., Wofford, J. L., & Colombo, K. A. (2000). Caregivers’ unmet needs for support in caring for functionally impaired elderly persons: a community sample. Journal of Health Care for the Poor and Underserved, 11(4), 412–429.

    PubMed  Google Scholar 

  • Atlee, K. (2001). Market research report: Message testing. Bethesda: National Family Caregivers Association & National Alliance for Caregiving.

    Google Scholar 

  • Barusch, A. S., & Spaid, W. M. (1991). Reducing caregiver burden through short-term training: Evaluation findings from a caregiver support project. Journal of Gerontological Social Work, 17(1–2), 7–33.

    Article  Google Scholar 

  • Belmin, J., Hee, C., & Ollivet, C. (1999). A health education program lessens the burden of family caregivers of demented patients. Journal of the American Geriatric Society, 47(11), 1388–1389.

    Google Scholar 

  • Boothroyd, R. A., Kuppinger, A. D., Evans, M. E., Armstrong, M. I., & Radigan, M. (1998). Understanding respite care use by families of children receiving short-term, in-home psychiatric emergency services. Journal of Child and Family Studies, 7(3), 353–376.

    Article  Google Scholar 

  • Botsford, A. L. (1994). Caregiver support in rural areas: A stepping stone to case management for rural hospitals. Journal of Gerontological Social Work, 20(3–4), 147–165.

    Article  Google Scholar 

  • Bourgeois, M. S., Schulz, R., & Burgio, L. (1996). Interventions for caregivers of patients with Alzheimer’s disease: A review and analysis of content, process, and outcomes. International Journal of Aging and Human Development, 43(1), 35–92.

    Article  PubMed  Google Scholar 

  • Braithwaite, V. (1998). Institutional respite care: breaking chores or breaking social bonds? The Gerontologist, 38(5), 610–617.

    Google Scholar 

  • Brodaty, H. (1992). Carers: Training informal carers. In T. Arie (Ed.), Recent advances in psychogeriatrics (2nd ed.). Edinburgh: Churchill Livingstone.

    Google Scholar 

  • Brown, J. W., Chen, S. L., Mitchell, C., & Province, A. (2007). Help-seeking by older husbands caring for wives with dementia. Journal of Advanced Nursing, 59(4), 352–360.

    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(3), 257–268.

    Article  PubMed  Google Scholar 

  • Bruce, D. G., & Paterson, A. (2000). Barriers to community support for the dementia carer: A qualitative study. International Journal of Geriatric Psychiatry, 15(5), 451–457.

    Article  PubMed  Google Scholar 

  • Buckwalter, K. C., Davis, L. L., Wakefield, B. J., Kienzle, M. G., & Murray, M. A. (2002). Telehealth for elders and their caregivers in rural communities. Family & Community Health, 25(3), 31–40.

    Google Scholar 

  • Buckwalter, K. C., Gerdner, L., Kohout, F., Hall, G. R., Kelly, A., Richards, B., et al. (1999). A nursing intervention to decrease depression in family caregivers of persons with dementia. Archives of Psychiatric Nursing, 13(2), 80–88.

    Article  PubMed  Google Scholar 

  • Bullock, K., Crawford, S. L., & Tennstedt, S. L. (2003). Employment and caregiving: Exploration of African American caregivers. Social Work, 48(2), 150–162.

    PubMed  Google Scholar 

  • Calasanti, T., & King, N. (2007). Taking ‘women’s work’ ‘like a man’: Husbands’ experiences of care work. Gerontologist, 47(4), 516–257.

    PubMed  Google Scholar 

  • Carmichael, F., & Charles, S. (2003). The opportunity costs of informal care: Does gender matter. Journal of Health Economics, 22(5), 781–803.

    Article  PubMed  Google Scholar 

  • Chambers, M., & Connor, S. L. (2002). User-friendly technology to help family carers cope. Journal of Advanced Nursing, 40(5), 568–577.

    Article  PubMed  Google Scholar 

  • Chappell, N. L., Reid, R. C., & Dow, E. (2001). A typology of meanings based on the caregiver’s point of view. Journal of Aging Studies, 15(2), 201–216.

    Article  Google Scholar 

  • Coe, M., & Neufeld, A. (1999). Male caregivers’ use of formal support. Western Journal of Nursing Research, 21(4), 568–588.

    Article  PubMed  Google Scholar 

  • Colantonio, A., Cohen, C., & Pon, M. (2001). Assessing support needs of caregivers of persons with dementia: Who wants what? Community Mental Health Journal, 37(3), 231–243.

    Article  PubMed  Google Scholar 

  • Corbeil, R. R., Quayhagen, M. P., & Quayhagen, M. (1999). Intervention effects on dementia caregiving interaction: A stress-adaptation modeling approach. Journal of Aging and Health, 11(1), 79–95.

    Article  PubMed  Google Scholar 

  • Corcoran, M. A., & Gitlin, L. N. (1992). Dementia management: An occupational therapy home-based intervention for caregivers. American Journal of Occupational Therapy, 46(9), 801–808.

    PubMed  Google Scholar 

  • Cox, C. (1999). Race and caregiving: Patterns of service use by African-American and White caregivers of persons with Alzheimer’s disease. Journal of Gerontological Social Work, 32(2), 5–19.

    Article  Google Scholar 

  • Eaves, Y. D. (1999). Family recruitment issues and strategies: Caregiving in rural African Americans. Nursing Research, 48(3), 183–187.

    Article  PubMed  Google Scholar 

  • Farran, C. J. (2001). Family caregiver intervention research: Where have we been? Where are we going? Journal of Gerontological Nursing, 27(7), 38–45.

    PubMed  Google Scholar 

  • Farran, C. J., & Keane-Hagerty, E. (1994). Interventions for caregivers of persons with dementia: Educational support groups and Alzheimer’s association support groups. Applied Nursing Research, 7(3), 112–117.

    Article  PubMed  Google Scholar 

  • Gallagher-Thompson, D., Coon, D. W., Solano, N., Ambler, C., Rabinowitz, Y., & Thompson, L. W. (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. Gerontologist, 43(4), 580–591.

    Google Scholar 

  • Gallagher-Thompson, D., Solano, N., Coon, D., & Arean, P. (2003). Recruitment and retention of Latino dementia family caregivers in intervention research: Issues to face, lessons to learn. Gerontologist, 43(1), 45–51.

    PubMed  Google Scholar 

  • Gallo, J. J., Reichel, W., & Andersen, L. M. (1995). Handbook of geriatric assessment. Gaithersburg: Aspen Publishers, Inc.

    Google Scholar 

  • Gerdner, L. A., Hall, G. R., & Buckwalter, K. C. (1996). Caregiver training for people with Alzheimer’s based on a stress threshold model. Image Journal of Nursing Scholarship, 28(3), 241–246.

    Article  Google Scholar 

  • Gitlin, L. N., Corcoran, M., Winter, L., Boyce, A., & Hauck, W. W. (2001). A randomized controlled trial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily function of persons with dementia. Gerontologist, 41(1), 4–14.

    PubMed  Google Scholar 

  • Glueckauf, R. L., Ketterson, T. U., Loomis, J. S., & Dages, P. (2004). Online support and education for dementia caregivers: Overview, utilization, and initial program evaluation. Telemedicine Journal of E Health, 10(2), 223–232.

    Article  Google Scholar 

  • Hennessy, C. H., John, R., & Anderson, L. A. (1999). Diabetes education needs of family members caring for American Indian elders. Diabetes Educator, 25(5), 747–754.

    Article  PubMed  Google Scholar 

  • Hirsch, C. (1996). Understanding the influence of gender role on the assumption of family ­caregiving roles by men. International Journal of Aging and Human Development, 42(2), 103–121.

    Article  PubMed  Google Scholar 

  • Hoffmann, M. K. (2002). Self-awareness in family caregiving: A report on the communications environment. Bethesda: National Family Caregiver Association, Kensington, MD, & National Alliance for Caregiving.

    Google Scholar 

  • Houde, S. C. (2001). Men providing care to older adults in the home. Journal of Gerontological Nursing, 27(8), 13–19.

    PubMed  Google Scholar 

  • Kaye, L. W., & Appelgate, J. S. (1990). Men as caregivers to the elderly: Understanding and aiding unrecognized family support. Lexington: Lexington Books.

    Google Scholar 

  • Knight, B. G., Lutzky, S. M., & Macofsky-Urban, F. (1993). A meta-analytic review of interventions for caregiver distress: Recommendations for future research. Gerontologist, 33(2), 240–248.

    PubMed  Google Scholar 

  • Kramer, B. J. (2002). Men caregivers: An overview. In B. J. Kramer & E. H. Thompson (Eds.), Men as caregivers: Theory, research, and service implications. New York: Springer Publishing Co.

    Google Scholar 

  • Kramer, B. J., & Lambert, D. (1999). Caregiving as a life course transition among older husbands: A prospective study. Gerontologist, 39(6), 658–667.

    PubMed  Google Scholar 

  • Kutner, G. (2001). Caregiver identification study. Washington: American Association of Retired Persons.

    Google Scholar 

  • Laditka, S. B., Pappas-Rogich, M., & Laditka, J. N. (2001). Home and community-based services for well educated older caregivers: Gender differences in attitudes, barriers, and use. Home Health Care Services Quarterly, 19(3), 1–17.

    Article  Google Scholar 

  • Lilly, M. B., Laporte, A., & Coyte, P. C. (2007). Labor market work and home care’s unpaid caregivers: a systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work. The Milbank Quarterly, 85(4), 641–690.

    Article  PubMed  Google Scholar 

  • Loyd, M., & Carson, A. (2005). Culture shift: Empowerment and cooperative inquiry. Journal of Psychiatric and Mental Health Nursing, 12(2), 187–191.

    Article  Google Scholar 

  • McDonald, J. C., Stetz, K. M., & Compton, K. (1996). Educational interventions for family caregivers during marrow transplantation. Oncology Nursing Forum, 23(9), 1432–1439.

    PubMed  Google Scholar 

  • McMillan, S. C., Small, B. J., Weitzner, M., Schonwetter, R., Tittle, M., Moody, L., et al. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer: A randomized clinical trial. Cancer, 106(1), 214–222.

    Article  PubMed  Google Scholar 

  • Miller, D., Shewchuk, R., Elliot, T. R., & Richards, S. (2000). Nominal group technique: A process for identifying diabetes self-care issues among patients and caregivers. Diabetes Educator, 26(2), 305–314.

    Article  PubMed  Google Scholar 

  • Mohide, E. A., Pringle, D. M., Streiner, D. L., Gilbert, J. R., Muir, G., & Tew, M. (1990). A randomized trial of family caregiver support in the home management of dementia. Journal of the American Geriatric Society, 38(4), 446–454.

    Google Scholar 

  • Monahan, D. J., Greene, V. L., & Coleman, P. D. (1992). Caregiver support groups: Factors affecting use of services. Social Work, 37(3), 254–260.

    PubMed  Google Scholar 

  • Morgan, D. G., Semchuk, K. M., Stewart, N. J., & D’Arcy, C. (2002). Rural families caring for a relative with dementia: Barriers to use of formal services. Social Science and Medicine, 55(7), 1129–1142.

    Article  PubMed  Google Scholar 

  • Murphy, M. R., Escamilla, M. I., Blackwell, P. H., Lucke, K. T., Miner-Williams, D., Shaw, V., et al. (2007). Assessment of caregivers’ willingness to participate in an intervention research study. Research in Nursing & Health, 30(3), 347–355.

    Article  Google Scholar 

  • National Alliance for Caregiving and American Association for Retired Persons. (1997). Family caregiving in the US: Findings from a national survey. Washington: National Alliance for Caregiving.

    Google Scholar 

  • National Alliance for Caregiving & Center for Productive Aging. (2003). The Metlife study of sons at work balancing employment and eldercare. Westport: Mature Market Institute, Metlife.

    Google Scholar 

  • National Family Caregiver Association & National Alliance for Caregiving. (2001). Family caregivers self-awareness and empowerment project: A report on formative focus groups. Washington: Lake Snell Perry & Associates.

    Google Scholar 

  • National Family Caregivers Association (2000). Caregiver Survey 2000. Kensington, MD: National Family Caregivers Association. (www.nfcacares.org).

  • National Family Caregivers Association. (2001). Survey of self-identified family caregivers. Kensington, MD: National Family Caregivers Association. (www.thefamilycaregiver.org).

  • Navaie-Waliser, M., Feldman, P. H., Gould, D. A., Levine, C., Kuerbis, A. N., & Donelan, K. (2001). The experiences and challenges of informal caregivers: Common themes and differences among whites, blacks, and Hispanics. Gerontologist, 41(6), 1–9.

    Google Scholar 

  • Navaie-Waliser, M., Feldman, P. H., Gould, D. A., Levine, C., Kuerbis, A. N., & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable family caregivers. American Journal of Public Health, 92(3), 409–413.

    Article  PubMed  Google Scholar 

  • Navaie-Waliser, M., Spriggs, A., & Feldman, P. H. (2002). Informal caregivers as long-term care providers: Differential experiences by gender. Medical Care, 40(12), 1249–1259.

    Article  PubMed  Google Scholar 

  • Pedlar, D. J., & Smyth, K. A. (1999). Introduction: Caregiver attitudes, beliefs, and perceptions about service use. Journal of Applied Gerontology, 18(2), 141–144.

    Article  Google Scholar 

  • Pickett-Schenk, S. A. (2003). Family education and support: Just for women only? Psychiatric Rehabilitation Journal, 27(2), 131–139.

    Article  PubMed  Google Scholar 

  • Ripich, D. N. (1994). Functional communication with AD patients: A caregiver training program. Alzheimer Disease Association Disorders, 8(3), 95–109.

    Google Scholar 

  • Robinson, K., & Yates, K. (1994). Effects of two caregiver-training programs on burden and attitude toward help. Archives of Psychiatric Nursing, 8(5), 312–319.

    Article  PubMed  Google Scholar 

  • Rosswurm, M. A., Larrabee, J. H., & Zhang, J. (2002). Training family caregivers of dependent elderly adults through on-site and telecommunications programs. Journal of Gerontological Nursing, 28(7), 27–38.

    PubMed  Google Scholar 

  • Scharlach, A. E., Giunta, N., Chow, J. C., & Lehning, A. (2008). Racial and ethnic variations in caregiver service use. Journal of Aging and Health, 20(3), 326–346.

    Google Scholar 

  • Schmall, V. L. (1995). Family caregiver education and training: Enhancing self-efficacy. Journal of Case Management, 4(4), 156–162.

    PubMed  Google Scholar 

  • Silliman, R. A., Bhatti, S., Khan, A., Dukes, K. A., & Sullivan, L. M. (1996). The care of older persons with diabetes mellitus: Families and primary care physicians. Journal of the American Geriatric Society, 44(11), 1314–1321.

    Google Scholar 

  • Sorensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42(3), 356–372.

    PubMed  Google Scholar 

  • Stoltz, P., Uden, G., & Willman, A. (2004). Support for family careers who care for an elderly person at home – a systematic review. Scandinavian Journal of Caring and Sciences, 18(2), 111–119.

    Article  Google Scholar 

  • Teri, L. (1999). Training families to provide care: Effects on people with dementia. International Journal of Geriatric Psychiatry, 14(2), 110–119.

    Article  PubMed  Google Scholar 

  • Toseland, R. W., & Rossiter, C. M. (1989). Group interventions to support family caregivers: A review and analysis. Gerontologist, 29(4), 438–448.

    PubMed  Google Scholar 

  • Visser-Meily, A., van Heugten, C., Post, M., Schepers, V., & Lindeman, E. (2005). Intervention studies for caregivers of stroke survivors: A critical review. Patient Education and Counseling, 56(3), 257–267.

    Article  PubMed  Google Scholar 

  • Wagner, D. L. (1997). Comparative analysis of caregiver data for caregivers to the elderly: 1987 and 1997. Bethesda: National Alliance for Caregiving.

    Google Scholar 

  • Whittier, S., Scharlach, A. E., & Dal Santo, T. S. (2005). Availability of caregiver support services: Implications for implementation of the National Family Caregiver Support Program. Journal of Aging and Social Policy, 17(1), 45–62.

    Article  PubMed  Google Scholar 

Download references

Acknowledgment

The author would like to acknowledge the contributions of Lauren E. McCullough, M.S.P.H., Research Associate, and Jessica C. Smith, B.A., Senior Research Coordinator, at Advance Health Solutions, for assisting with literature reviews and editorial support.

Author information

Authors and Affiliations

  1. Advance Health Solutions, LLC, La Jolla, CA, USA

    Maryam Navaie

Authors
  1. Maryam Navaie
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Maryam Navaie .

Editor information

Editors and Affiliations

  1. Inst. Gerontology, State University of New York, Albany, Western Avenue 135, Albany, 12222, New York, USA

    Ronald W. Toseland

  2. Rosalynn Carter Inst. Caregiving, Georgia Southwestern State University, Oglethorpe, Georgia, USA

    David H. Haigler

  3. College of Human Ecology, School of Social Work, Syracuse University, Sims Hall, Syracuse, 13244, New York, USA

    Deborah J. Monahan

Rights and permissions

Reprints and permissions

Copyright information

© 2011 Springer Science+Business Media, LLC

About this chapter

Cite this chapter

Navaie, M. (2011). Accessibility of Caregiver Education and Support Programs: Reaching Hard-to-Reach Caregivers. In: Toseland, R., Haigler, D., Monahan, D. (eds) Education and Support Programs for Caregivers. Caregiving: Research, Practice, Policy. Springer, New York, NY. https://doi.org/10.1007/978-1-4419-8031-1_2

Download citation

Publish with us

Policies and ethics

Search

Navigation