Elsevier

Clinical Psychology Review

Volume 19, Issue 7, November 1999, Pages 819-841
Clinical Psychology Review

Factors associated with caregiver burden in mental illness: A critical review of the research literature

https://doi.org/10.1016/S0272-7358(98)00076-2Get rights and content

Abstract

This article reviews caregiver burden studies that evaluated burden of care for a mentally ill relative using measurement instruments with established validity and reliability. The review identifies aspects of caregiving that are most burdensome to caregivers. It describes the nature of the relationships between variables and different dimensions of caregiver burden, and identifies mixed findings that are theoretically relevant to caregiver burden. The review discusses research findings in light of the methodological issues and research designs characterizing the literature, and briefly summarizes the effects of burden on the caregiver's life. Finally, it identifies advances made in this line of research in recent years and highlights areas that need further attention in future research work. Summary tables are included.

Section snippets

Literature review

Maurin and Boyd (1990) conducted a critical review of the caregiving literature in mental illness and provided a good evaluation of the methodological problems existing in this field of research. Methodological issues highlighted included the inconsistent use of theoretical and operational definitions, reliability and validity issues in the measurement of burden, problems in sampling, lack of theoretical frameworks, heterogeneity of the population studied, the absence of longitudinal research

Inclusion criteria

Study abstracts that included the word burden and any of the following words: family, caregiver, caretaker, or careprovider were identified through a computer search in the Psych Info system, 1967 to 1997. The reference sections of these studies were also verified to ensure that no burden studies were left out. Selected studies were designed to evaluate burden (behaviors and feelings specifically associated with mental illness) rather than distress (global picture of the caregivers' physical

Sample selection and characteristics

Respondents of the studies reviewed were mostly female caregivers (69%), and they averaged 52 years of age. Most of them were White (75%) and often resided with the ill relative (43%). Minority caregivers of the reviewed studies were Black. Caregivers usually had a high school diploma and an average family income of $25,000. Respondents were often parents of a severely mentally ill child (55%) or spouse of the ill relative (22%). Studies included in this review either recruited caregivers

Research findings

Three types of research findings were reported in the reviewed studies. Descriptive statistics present the relative occurrence of OB and SB and identify activities found most burdensome to caregivers. Correlations are computed between burden and different variables, as well as between OB and SB. Regression analyses identify the relationship between a specific variable and burden, while controlling for the confounding effects of other variables on burden. Findings about associations between

Recent advances in the research literature

In the last decade, advances in the research literature were made to overcome some of the methodological issues in the field of caregiving in mental illness. They include increased simultaneous control of variables influencing caregiver burden, the differentiation of OB and SB into dimensions of burden, and increased attention to validity and reliability issues in operationalizing caregiver burden. Less than 20% of the studies reviewed which were published prior to 1990 used regression

Future research

Areas that need further attention from researchers include the use of theoretical frameworks, the use of longitudinal research designs, the heterogeneity of the caregiver population, the replication of single study findings, and the theoretical definitions of burden concepts. Most studies reviewed were more or less exploratory in nature and did not attempt to test specific models of caregiver burden. However, many of them were implicitly based on a stress and coping framework, which suggests

Acknowledgements

The author thanks Dr. Gary Gerber and Dr. Catherine Lee, University of Ottawa, for their support, suggestions, and editorial assistance. Acknowledgements and thanks are also due to the two anonymous reviewers for their helpful comments on the original manuscript.

References (44)

  • S.L. Jones

    The association between objective and subjective caregiver burden

    Archives of Psychiatric Nursing

    (1996)
  • J.T. Maurin et al.

    Burden of mental illness on the familyA critical review

    Archives of Psychiatric Nursing

    (1990)
  • H.L. Provencher et al.

    Positive and negative symptom behaviors and caregiver burden in the relatives of persons with schizophrenia

    Schizophrenia Research

    (1997)
  • D.E. Biegel et al.

    Predictors of burden among lower socio-economic status caregivers of persons with chronic mental illness

    Community Mental Health Journal

    (1994)
  • M.W. Bulger et al.

    Burdens and gratifications of caregivingAppraisal of parental care of adults with schizophrenia

    American Journal of Orthopsychiatry

    (1993)
  • R.E. Clark

    Family costs associated with severe mental illness and substance use

    Hospital and Community Psychiatry

    (1994)
  • J.A. Clausen et al.

    The impact of mental illness on the family

    Journal of Social Issues

    (1955)
  • J. Cochrane et al.

    The mental health of informal caregivers in OntarioAn epidemiological survey

    American Journal of Public Health

    (1997)
  • J.A. Cook et al.

    Age and family burden among parents of offspring with severe mental illness

    American Journal of Orthopsychiatry

    (1994)
  • J.C. Coyne et al.

    Living with a depressed person

    Journal of Consulting and Clinical Psychology

    (1987)
  • C. Creer et al.

    The role of relatives

    Psychological Medicine

    (1982)
  • P. Crotty et al.

    Are schizophrenics a burden to their families? Significant others' views

    Health and Social Work

    (1986)
  • J.S. Gibbons et al.

    Schizophrenic patients and their familiesA survey in a psychiatric service based on a DGH unit

    British Journal of Psychiatry

    (1984)
  • H. Goldman

    Mental illness and family burdenA public health perspective

    Hospital and Community Psychiatry

    (1982)
  • J. Grad et al.

    The effects that patients have on their families in a community care and a control psychiatric service—A two year follow-up

    British Journal of Psychiatry

    (1968)
  • J.S. Greenberg et al.

    Factors associated with subjective burden in siblings of adults with severe mental illness

    American Journal of Orthopsychiatry

    (1997)
  • A.B. Hatfield

    Psychological costs of schizophrenia to the family

    Social Work

    (1978)
  • M.I. Herz et al.

    Brief versus standard hospitalizationThe families

    American Journal of Psychiatry

    (1976)
  • J. Hoenig et al.

    The schizophrenic patient in the community and his effect on the household

    The International Journal of Social Psychiatry

    (1966)
  • A.V. Horwitz et al.

    Ethnic differences in caregiving duties and burdens among parents and siblings of persons with severe mental illnesses

    Journal of Health and Social Behavior

    (1995)
  • S.L. Jones et al.

    Caregiver burdenWho the caregivers are, how they give care, and what bothers them

    Journal of Health and Social Policy

    (1994)
  • S.L. Jones et al.

    Effect of demographic and behavioral variables on burden of caregivers of chronic mentally ill persons

    Psychiatric Services

    (1995)
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