Introduction

The research literature on family caregiving is vast and diverse. This section highlights some important areas of research on family caregiving, including studies of the prevalence of caregiving and the assistance provided by caregivers; studies of the psychological, social, health, and economic impact of caregiving; studies of individual differences in response to caregiving; studies of the effects of interventions or public policies on caregivers; and issues faced by caregivers for specific conditions or disabilities and populations.

  1. Descriptions of the prevalence of caregiving and assistance provided by caregivers.
  2. Studies of the psychological, social, health, and economic impact of caregiving.
  3. Studies of individual differences in response to caregiving.
  4. Studies of the effects of interventions and public policies on caregivers.
  5. Caregiving for specific conditions or disabilities and populations.
Descriptions of prevalence & assistance

ComfortingThe studies below provide information about the extent and variety of assistance provided by caregivers. They range from national samples that offer a “big picture” of caregiving activities (e.g., Ory et al., 1999; Wolff & Kasper, 2006) to more focused projects that describe caregiving for individuals with a particular disease or disability of interest (e.g., Emanuel et al., 1999; Gaugler et al., 2005; Haley et al., 2009).

References

Emanuel, E. J., Fairclough, D. L., Slutsman, J., Alpert, H., Baldwin, D., & Emanuel, L. L. (1999). Assistance from family members, friends, paid caregivers, and volunteers in the care of terminally ill patients. New England Journal of Medicine, 341, 956-963.

Gaugler, J. E., Hanna, N., Linder, J., Given, C. W., Tolbert, V., Kataria, R., & Regine, W. F. (2005). Cancer caregiving and subjective stress: A multi-site, multi-dimensional analysis. Psychooncology, 14, 771-785.

Haley, W. E., Allen, J. Y., Grant, J. S., Clay, O. J., Perkins, M., & Roth, D. L. (2009). Problems and benefits reported by stroke family caregivers: Results from a prospective epidemiological study. Stroke, 40, 2129-2133.

Ory, M. G., Hoffman, R. R., Yee, J. L., Tennstedt, S., & Schulz, R. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and non-dementia caregivers. The Gerontologist, 39, 177-186.

Wolff, J. L., & Kasper, J. D. (2006). Caregivers of frail elders: Updating a national profile. The Gerontologist, 46, 344-356. Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649-655.

Impact of caregiving

Studies of the psychological, social, health and economic impact of caregiving include topics such as:

  • The impact of caregiving strain on caregiver depression and quality of life (Roth et al., 2009).
  • The economic impact of caregiving (e.g., Feinberg et al., 2011; Langa et al., 2001).
  • The impact of caregiving strain on immune system functioning (e.g., Lovell & Wetherell, 2011).
  • Effects of caregiver strain on caregiver mortality (e.g., Roth et al., in press).

CaregiverThe literature on the mental and physical health impact of caregiving has also been summarized through meta-analysis (e.g., Pinquart & Sorensen, 2003).

References

Feinberg, L., Reinhard, S. C. Houser, A., & Choula, R. (2011). Valuing the invaluable: 2011 update: The growing contributions and costs of family caregiving. Available at http://hjweinbergfoundation.net/ficsp/documents/10/Caregivers-Save-the-System-Money-With-Uncompensated-Care.pdf

Langa, K.M., et al. (2001). National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine, 18, 770-778.

Lovell, B., & Wetherell, M. A. (2011). The cost of caregiving: Endocrine and immune implications in elderly and non-elderly caregivers. Neuroscience and Biobehavioral Reviews, 35(6), 1342-1352. doi:10.1016/j.neubiorev.2011.02.007

Pinquart, M. & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250-267.

Roth, D. L., Fredman, L., & Haley, W. E. (in press). Informal caregiving and its impact on health: A reappraisal from population-based studies. The Gerontologist.

Roth, D. L., Perkins, M., Wadley, V. G., Temple, E., & Haley, W. E. (2009). Family caregiving and emotional strain: Associations with psychological health in a national sample of community-dwelling middle-aged and older adults. Quality of Life Research, 18, 679- 688.

Responses to caregiving stress

Studies of individual differences in response to caregiving stress often utilize stress process models and categorize factors predictive of caregiver outcome. These studies have been essential for the development of translational research on caregiver interventions.  Examples of such studies are:

  • describing and evaluating stress and coping models of caregiving (e.g., Haley et al., 1987; Pearlin et al., 1990; Schulz et al., 2007)
  • the impact of a theoretically interesting construct—for example, women’s multiple roles-- on caregiver well-being (e.g., Martire et al., 2000)
  • particular individual difference variables, such as gender (e.g., Pinquart & Sorensen, 2006a) or race (e.g., Dilworth-Anderson et al., 2002)
  • the empirical correlates of caregiver health (e.g., Pinquart & Sorensen, 2007).

StressReferences

Dilworth-Anderson, P., Williams, I. C., & Gibson, B. E. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20-year review (1980-2000). The Gerontologist, 42, 237-272.

Haley, W.E., Levine, E.G., Brown, S.L., & Bartolucci, A.A. (1987). Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers. Psychology and Aging, 27, 323-330.

Martire, L. M., Stephens, M. A. P., & Townsend, A. L. (2000). Generality of women's multiple roles: Beneficial and detrimental consequences for psychological well-being. Psychology and Aging, 15, 148-156.

Pearlin, L. I., Mullin, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–594. Pinquart, M., & Sörensen,S. (2007). Correlates of physical health of informal caregivers: a meta- analysis. Journals of Gerontology Series B-Psychological Sciences & Social Sciences. 62, P126-37.

Pinquart, M., & Sorensen, S. (2006a). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. Journal of Gerontology: Psychological Sciences, 61B, P33-P45.

Schulz, R., Hebert, R. S., Dew, M. A., Brown, S. L., Scheier, M. F., Beach, S. R., et al. (2007). Patient suffering and caregiver compassion: New opportunities for research, practice, and policy. The Gerontologist, 47(1), 4-13.

Effects of interventions and policies

Studies of the effects of interventions and public policies on caregivers include:

  • randomized trials of caregiver interventions (e.g., Mittelman et al., 2006; Pinquart & Sorensen, 2006b; Askins et al., 2009; Stehl et al., 2009)
  • studies using quasi-experimental designs to evaluate interventions such as adult day care (e.g., Zarit et al., 1998)
  • translational research studies demonstrating the impact of caregiver interventions in community settings (e.g., Gitlin et al., 2010; Teri et al., 2005)
  • studies using administrative data to examine the effects of policies on caregivers (e.g., Levine et al., 2006).

Currently underway is the first comparative effectiveness trial, using a pragmatic RCT design, of two caregiver intervention programs: REACH OUT and Mary Mittelman’s NYUCI. Study in progress, Sept. 1, 2013 to Aug. 31, 2016. View abstract.

References

Askins M.A. ,Sahler O.J., Sherman, S.A. Fairclough D.L., Butler, R.W., Katz, E.R., Dolgin M.J., Varni, J.W., Noll, R.B., Phipps S. (2009). Report from a multi-institutional randomized clinical trial examining computer-assisted problem-solving skills training for English- and Spanish-speaking mothers of children with newly-diagnosed cancer. Journal of Pediatric Psychology, 34, 551-563.

Gitlin, L. N., Jacobs, M., & Earland, T. V. (2010). Translation of a dementia caregiver intervention for delivery in homecare as a reimbursable Medicare service: Outcomes and lessons learned. The Gerontologist, 43, 532-546.

Levine, C., Albert, S. M., Hokenstad, A., Halper, D. E., Hart, A. Y., & Gould, D. A. (2006). ”This case is closed”: Family caregivers and the termination of home health care services for stroke patients. Milbank Quarterly, 84, 305-331.

Luchsinger, J, Burgio, L, and Mittelman, M (Co-PIs). Northern-Manhattan Hispanic Caregiver Intervention Effectiveness Study (NHiCE): A Comparative Effectiveness Study.

Mittelman, M. S., Haley, W. E., Clay, O. J., & Roth, D. L. (2006). Improving caregiver well- being delays nursing home placement of patients with Alzheimer disease. Neurology, 67, 1592-1599.

Pinquart, M., & Sörensen, S. (2006b). Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics, 18, 577-595.

Stehl M.L., Kazak, A.E., Alderfer M.A., Rodriguez A., Hwang W.T., Pai A.L., Boeving A., & Rielly A. (2009). Conducting a randomized clinical trial of a psychological intervention for parents/caregivers of children with cancer shortly after diagnosis. Journal of Pediatric Psychology, 34, 803-816.

Teri, L., McCurry, S. M., Logsdon, R., & Gibbons, L. E. (2005). Training community consultants to help family members improve dementia care: A randomized controlled trial. TheGerontologist, 45, 802–811.

Zarit, S. H., et al. 1998. Stress reduction for family caregivers: Effects of adult day care use. Journal of Gerontology 53B(5): S267-77.

Specific conditions/disabilities

Within these major areas, researchers have been interested in caregiving for specific conditions or disabilities (e.g. AIDS, mental health disorders, stroke, cancer, traumatic brain injuries, multiple sclerosis, prematurity, asthma, sickle cell disease, intellectual disability) and populations (e.g. children, older adults, individuals of specific cultural and racial backgrounds)

  • As many once life-threatening diseases of childhood can now be managed as chronic conditions, the burdens of caregiving on parents have become more broadly delineated and understood. There is considerable research on the social, economic, and psychological impact of caring for an ill child on parents and siblings. A few evidence-based interventions for parents of ill children are also available (Askins et al., 2009; Stehl et al, 2009.)
  • The bulk of caregiver research to date has been conducted with older individuals living with conditions that are often associated with older age (e.g., Alzheimer’s Disease, stroke).
  • CaregiverAlthough caregivers of varying ages and backgrounds may need to perform similar activities, cultural differences may influence the way caregivers perceive and respond to their responsibilities. These factors will become progressively more important as a result of increased diversity in United States—ethnic/racial, but also SES, linguistic, sexual orientation, and religious affiliation. Caregiver reactions, coping strategies, distress levels, acceptance of symptoms, and attitudes toward clinicians and outside help may vary considerably across different cultures (Culture & Caregiving, 1992). Research has demonstrated differing beliefs, levels of support, and physical and emotional outcomes among caregivers from diverse cultural backgrounds.

References

Askins M.A., Sahler O.J., Sherman, S.A. Fairclough D.L., Butler, R.W., Katz, E.R., Dolgin M.J., Varni, J.W., Noll, R.B., Phipps S. (2009). Report from a multi-institutional randomized clinical trial examining computer-assisted problem-solving skills training for English- and Spanish-speaking mothers of children with newly-diagnosed cancer. Journal of Pediatric Psychology, 34, 551-563.

Cheng, H. Y., Ying, S., & Chau, J. P. (2014). The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: A systematic review and meta-analysis. Patient Education and Counseling,95, 30-44. doi: 10.1016/j.pec.2014.01.005

Henderson, J. N. (1992).  The power of support: Alzheimer's disease support groups for minority families. Aging, 363-364, 24-28.

Poritz, J. M. P., Elliott, T., & Pfeiffer, K. (in press). Family caregivers of stroke survivors. In L. Burgio, J. Gaugler, & D. Algase (Eds.), The Spectrum of Family Caregiving for Adults and Elders with Chronic Conditions. New York: Oxford University Press

Stehl M.L., Kazak, A.E., Alderfer M.A., Rodriguez A., Hwang W.T., Pai A.L., Boeving A., & Rielly A. (2009). Conducting a randomized clinical trial of a psychological intervention for parents/caregivers of children with cancer shortly after diagnosis. Journal of Pediatric Psychology, 34, 803-816.