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Family burden and quality of life

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Abstract

Providing care to family members dealing with chronic illness may result in feelings of burden or strain for caregivers that can diminish their quality of life. This article examines objective and subjective dimensions of family burden, and the extent to which illness characteristics and contextual variables have been found to contribute to caregiver stress for different chronic illnesses. After discussing some of the problems in the conceptualization and measurement of caregiving burden, it suggests several important directions for future research, including further clarification of generic versus specific factors affecting caregiver burden, greater understanding of contextual variables, the impact of other roles, and examining changes in caregiving demands over the illness course.

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References

  1. Biegel D, Sales E, Schulz R. Family Caregiving in Chronic Illness. Newbury Park, CA: Sage Publications, 1991.

    Google Scholar 

  2. Marsh D, Johnson D. The family experience of mental illness: Implications for intervention. Profess Psychol: Res Pract 1997; 28(3): 229–237.

    Google Scholar 

  3. Clausen J, Yarrow M. Paths to the mental hospital. J Soc Issues 1955; 11: 25–32.

    Google Scholar 

  4. Grad J, Sainsbury P. Mental illness and the family. Lancet 1963; 1: 544–547.

    Google Scholar 

  5. Greenberg JS, Greenley JR, McKee D, Brown R, Griffin-Francell C. Mothers caring for an adult child with schizophrenia. Family Relat 1993; 42: 205–211.

    Google Scholar 

  6. Hoenig J, Hamilton MW. The schizophrenic patient in the community and his effect on the household. Int J Soc Psychiatry 1966; 12: 165–176.

    Google Scholar 

  7. Thompson EH, Doll W. The burden of families coping with the mentally ill: An invisible crisis. Family Relat 1982; 31: 379–388.

    Google Scholar 

  8. Brody EM. Women in the middle and family, help to older people. Gerontologist 1981; 21: 471–480.

    Google Scholar 

  9. George L, Gwyther LP. Caregiver well-being: A multidimensional examination of family caregivers of demented adults. Gerontologist 1986; 26: 253–259.

    Google Scholar 

  10. Montgomery R, Gonyea J, Hooyman N. Caregiving and the experience of subjective and objective burden. Family Relat 1985; 34: 19–26.

    Google Scholar 

  11. Poulshock SW, Deimling GT. Families caring for elders in residence: Issues in the measurement of burden. J Gerontol 1984; 39: 230–239.

    Google Scholar 

  12. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980; 20: 649–655.

    Google Scholar 

  13. Schene AH, Tessler RC, Gamache GM. Caregiving in severe mental illness: Conceptualization and measurement. In: Knudsen HC, Thornicroft G (eds), Mental Health Service Evaluation, New York: Cambridge University Press, 1996; 296–316.

    Google Scholar 

  14. Schene AH, Tessler RC, Gamache GM. Instruments measuring family or caregiver burden in severe mental illness. Psychiat Psychiat Epidemiol 1994; 29: 228–240.

    Google Scholar 

  15. Braithwaite V. Caregiving burden: Making the concept scientifically useful and policy relevant. Res Aging 1992; 14(1): 3–27.

    Google Scholar 

  16. Maurin J, Boyd B. Burden of mental illness on the family: A critical review. Arch Psychiatr Nurs 1990; 4: 99–107.

    Google Scholar 

  17. Lefley HP. Family Caregiving in Mental Illness. Thousand Oaks, CA: Sage Publications, 1996.

    Google Scholar 

  18. Stommel M, Given C, Given B. The cost of cancer care to families. Cancer 1993; 71: 1867–1874.

    Google Scholar 

  19. Sales E, Schulz R, Biegel D. Predictors of strain in families of cancer patients: A review of the literature. J Psychosoc Oncol 1992; 10(2): 1–26.

    Google Scholar 

  20. Brannon A, Heflinger C, Bickman L. The caregiver strain questionnaire: Measuring the impact on the family of living with a child with serious emotional disturbance. J Emot Behav Disord 1997; 5(4): 212–222.

    Google Scholar 

  21. Kahana E, Biegel D, Wykle M. Family Caregiving Across the Lifespan. Thousand Oaks, CA: Sage Publications, 1994.

    Google Scholar 

  22. Pearlin L. Role strains and personal stress. In: Kaplan H (ed.), Psychosocial Stress: Trends in Theory and Research, NY: Academic Press, 1983; 3–32.

    Google Scholar 

  23. Pearlin L. The sociological study of stress. J Health Soc Behav 1989; 30: 241–256.

    Google Scholar 

  24. Noelker L, Townsend A. Perceived caregiving effectiveness: The impact of parental impairment, community resources and caregiver characteristics. In: Brubaker T (ed.), Aging, Health, and Family, Newbury Park, CA: Sage Publications, 1987; 58–79.

    Google Scholar 

  25. American Cancer Society. Facts and Figures, 1979.

  26. Sales E. Psychosocial impact of the phase of cancer on the family: An updated review. J Psychosoc Oncol 1991; 9(4): 1–26.

    Google Scholar 

  27. Northouse L. The impact of cancer on the family: An overview. Int J Psychiatry Med 1984; 14: 215–242.

    Google Scholar 

  28. Greenberg JS, Seltzer MM, Greenley JR. Aging parents of adults with disabilities: The gratifications and frustrations of later-life caregiving. Gerontologist 1993; 33: 542–550.

    Google Scholar 

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Sales, E. Family burden and quality of life. Qual Life Res 12 (Suppl 1), 33–41 (2003). https://doi.org/10.1023/A:1023513218433

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  • DOI: https://doi.org/10.1023/A:1023513218433

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