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Construct Overview of Caregiver Burden

Please note that this section is an archive and is no longer being updated.

Most Frequently Cited Instruments
Instrument Summaries
  1. Zarit Burden Interview (ZBI)
  2. Caregiver Strain Index (CSI)

Source: Major Scientific Journal Publications
[October 2005]
Additional Resources
External Links

Background

Caregiver burden refers to the physical, psychological, social, and financial impact of caring for another person who is ill, disabled, or otherwise functionally impaired.1 Often the term is used in reference to "informal" caregivers (i.e., persons acting in an unpaid, non-professional capacity) such as family members. Informal caregivers are typically the subjects of research on caregiver burden.

The stresses of caregiving have been associated with several negative outcomes, including depression, anxiety, and poorer general health.2,3 Several studies have noted positive associations between caregiver burden and eventual placement of the caregiver recipient into nursing homes (for review see ref: 4). Factors that increase caregiver burden include both caregiver characteristics (e.g., age,5,6 gender,6 relationship to care recipient5,7) and care recipient characteristics (e.g., age, functional status8). Although the extent of caregiving responsibilities predicts caregiver burden, the process of caregiving and its consequences are mediated in part by subjective perceptions of burden.9 Thus, the experience of burden may differ between individuals with similar caregiving responsibilities.

VA Relevance

Utilization of informal (unpaid) caregivers is high among veterans with chronic disabling illness or injury.10-12 VA users in particular tend to be older and have poorer health status than the non-veteran and non-VA user populations.13,14 Research in VA populations has often focused on interventions that assist family caregivers and other informal caregivers in reducing burden. Beneficial intervention strategies may include both direct psychosocial support to caregivers and enhanced home-based health care.12,15,16 The relevance of interventions that benefit informal caregivers will likely increase as the average age of the adult veteran population advances.17

Measurement

Caregiver burden is typically assessed using self-report questionnaire and interview methods. Domains of caregiver burden that are typically assessed include social and occupational role strain, impact on physical health, financial burden, and emotional and psychological effects of caregiving.18 Commonly used instruments may not be as sensitive to the burden experienced by caregivers from ethnic minority populations, who may express burden in ways that are not emphasized by these measures.19

Some authors have criticized the practice of measuring caregiver burden per se, suggesting that generic measures of well-being (e.g., health status, social participation, etc.) or perceived stress may assess the same construct with the advantage of allowing for caregiver/non-caregiver comparisons.1,20 However, this position is controversial, and indeed some empirical evidence supports the conceptualization of caregiver burden and caregiver well-being as distinct, albeit related, constructs.21,22 The recent literature suggests that many authors have chosen to measure burden and well-being and/or quality of life separately.

Through literature review, METRIC identified two commonly used instruments for measuring caregiver burden. These are ranked according to number of citations, as determined by the ISI Web of Knowledge.23 What follows is a brief summary of each instrument and several applicable references.

Most Frequently Cited Instruments

[ISI Web of Knowledge, accessed Oct 2005]

  1. Zarit Burden Interview (ZBI)
    [830 Citations]
  2. Caregiver Strain Index (CSI)
    [273 Citations]
References
  1. George LK, Gwyther LP. Caregiver well-being: a multidimensional examination of family caregivers of demented adults. Gerontologist 1986;26:253-259. [Abstract]
  2. Pinquart M, Sorensen S. Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: a meta-analysis. Aging Ment Health 2004;8:438-449. [Abstract]
  3. Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry 2004;12:240-249. [Abstract]
  4. Chenier MC. Review and analysis of caregiver burden and nursing home placement. Geriatr Nurs 1997;18:121-126. [Abstract]
  5. LaLonde B, Kasprzyk D. Correlates of caregiver strain in home health care. Home Health Care Serv Q 1993;14:97-110. [Abstract]
  6. McCullagh E, Brigstocke G, Donaldson N, Kalra L. Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke 2005;36:2181-2186. [Abstract]
  7. Barnes CL, Given BA, Given CW. Caregivers of elderly relatives: spouses and adult children. Health Soc Work 1992;17:282-289. [Abstract]
  8. Given B, Stommel M, Collins C, King S, Given CW. Responses of elderly spouse caregivers. Res Nurs Health 1990;13:77-85. [Abstract]
  9. Reinhard SC, Horwitz AV. Caregiver burden: differentiating the content and consequences of family caregiving. J Marriage Fam 1995;57:741-750.
  10. Beckham JC, Lytle BL, Feldman ME. Caregiver burden in partners of Vietman War veterans with posttraumatic stress disorder. J Consult Clin Psychol 1996;64:1068-1072. [Abstract]
  11. Robinson-Whelen S, Rintala DH. Informal care providers for veterans with SCI: who are they and how are they doing? J Rehabil Res Dev 2003;40:511-516. [Abstract]
  12. Skelly MC, McAdoo CM, Ostergard SM. Caregiver burden at McGuire Veterans Administration Medical Center. J Gerontol Soc Work 1993;19:3-13.
  13. Kazis LE, Miller DR, Clark J, Skinner K, Lee A, Rogers W, Spiro A 3rd, Payne S, Fincke G, Selim A, Linzer M. Health-related quality of life in patients served by the Department of Veterans Affairs. Arch Intern Med 1998;158:626-632. [Abstract]
  14. Randall M, Kilpatrick KE, Pendergast JF, Jones KR, Vogel WB. Differences in patient characteristics between Veterans Administration and community hospitals: implications for VA planning. Med Care 1987;25:1099-104. [Abstract]
  15. Hughes SL, Weaver FM, Giobbie-Hurder A, Manheim L, Henderson W, Kubal JD, Ulasevich A, Cummings J; Department of Veterans Affairs Cooperative Study Group on Home-Based Primary Care. Effectiveness of team-managed home-based primary care: a randomized multicenter trial. JAMA 2000;284:2877-2885. [Abstract]
  16. VA Health Services Research & Development Service. Accessed October 2005. Available: http://www.hsrd.research.va.gov/
  17. VA Veteran Data and Information Web Site. Accessed October 2005. Available: http://www.va.gov/vetdata/
  18. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 1990;30:583-594. [Abstract]
  19. Calderon V, Tennstedt SL. Ethnic differences in the expression of caregiver burden: results of a qualitative study. J Gerontol Soc Work 1998;30:159-178.
  20. Chwalisz K, Kisler V. Perceived stress: a better measure of caregiver burden. Meas Eval Couns Dev 1995;28:88-98.
  21. Chappell NL, Reid RC. Burden and well-being among caregivers: examining the distinction. Gerontologist 2002; 42:772-780. [Abstract]
  22. Stull DR, Kosloski K, Kercher K. Caregiver burden and generic well-being: opposite sides of the same coin? Gerontologist 1994;34:88-94. [Abstract]
  23. ISI Web of Knowledge, Accessed October 2005. Available: http://isi01.isiknowledge.com/portal.cgi/wos/.


[created 15 October 2005]