Abstract
The aim of this study was to develop a practical, comprehensive, and valid self-report measure of the experience of caring for a relative with a serious mental illness. The notion of caregiver ‘burden’ was rejected; instead caregiving was conceptualised within a ‘stress-appraisal-coping’ framework. A 66-item version of the Experience of Caregiving Inventory (ECI) was derived from analyses of responses from 626 caregivers, and then tested on an independent sample of 63 relatives of patients with schizophrenia recently in acute care. The extent to which the ECI complied with the stress-coping model was tested, especially the degree to which it, in association with coping, predicted psychological morbidity in carers. Ten sub-scales with good internal consistency resulted from our analyses, eight negative (difficult behaviours; negative symptoms; stigma; problems with services; effects on the family; the need to provide backup; dependency; loss) and two positive (rewarding personal experiences; good aspects of the relationship with the patient). The ECI, in conjunction with coping style, predicted a large proportion of the variance in the General Health Questionnaire (GHQ). We concluded that the ECI taps salient dimensions of caregiving distinct from, although linked with, coping and psychological morbidity. It has potential as a useful outcome measure for interventions aimed at promoting caregiver well-being.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Barusch AS (1988) Problems and coping strategies of elderly spouse caregivers. Gerontologist 28: 677–685
Bulger MW, Wandersman A, Goldman CR (1993) Burdens and gratifications of caregiving. Appraisal of parental care of adults with schizophrenia. Am J Orthopsychiatry 63: 255–265
Brugha T, Bebbington P, Tennant C, Hurry J (1985) The List of Threatening Experiences: a subset of 12 life event categories with considerable long-term contextual threat. Psychol Med 15: 189–194
Creer C, Wing JK (1974) Schizophrenia at home National Schizophrenia Fellowship, Surbiton
Creer C, Sturt E, Wykes T (1982) The role of relatives. In: Wing JK (ed) Long-term community care: experience in a London borough. Psychol Med [Monogr Suppl 2]: 29–39
Fadden G, Bebbington P, Kuipers L (1987) The burden of care: the impact of functional psychiatric illness on the patient's family. Br. J Psychiatry 150: 285–292
Folkman S, Lazarus RS (1985) If it changes it must be a process: study of emotion and coping during three stages of a college examination. J Pers Soc Psychol 48: 150–170
Goldberg DP, Hillier VF (1979) A scaled version and the General Health Questionnaire. Psychol Med 9: 139–145
Hatfield AB (1978) Psychological costs of schizophrenia. Soc Work 23: 355–359
Hoenig J, Hamilton MW (1966) The schizophrenic patient in the community and his effect on the household. Int J Soc Psychiatry 12: 165–176
Kuipers L, Bebbington P (1988) Expressed emotion research in schizophrenia: theoretical and clinical implications. Psychol Med 18: 893–909
Lazarus RS, Folkman S (1984) Stress appraisal, and coping. Springer, Berlin Heidelberg New York
MacCarthy B, Brown R (1989) Psychosocial factors in Parkinson's disease. Br J Clin Psychol 28: 41–52
Moos R, Moos B (1980) Family Environment Scale manual. Consulting Psychologists' Press, Palo Alto
Noh S, Turner RJ (1987) Living with psychiatric patients: implications for the mental health of family members. Soc Sci Med 25: 263–271
Pai S, Kaipur RL (1981) The burden on the family of a psychiatric patient: development of an interview schedule. Br J Psychiatry 138: 332–335
Pearlin L, Schooler C (1978) The structure of coping. Health Soc Behav 19: 2–21
Platt S (1985) Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales. Psychol Med 15: 383–393
Platt S, Weyman A, Hirsch S, Hewett S (1980) The Social Behaviour Assessment Schedule (SBAS) rationale, contents, scoring and reliability of a new interview schedule. Soc Psychiatry 15: 43–55
Rosen A, Hadzi-Pavlovic D, Parker G (1989) The Life Skills Profile: a measure assessing function and disability in schizophrenia. Schizophr Bull 15: 325–337
Schene AH (1990) Objective and subjective dimensions of family burden. Towards an integrative framework for research. Soc. Psychiatry Psychiatr Epidemiol 25: 289–297
Schene AH, Tessler RC, Gamache GM (1994) Instruments measuring family or caregiver burden in severe mental illness. Soc Psychiatry Psychiatr Epidemiol 29: 228–240
Turner D, Frankel BG, Lewin DM (1983) Social support: conceptualization, measurement, and implications for mental health. J Community Ment Health 3: 67–111
Vitaliano PP, Maiuro RD, Russo J, Becker J (1987) Raw versus relative scores in the assessment of coping strategies. J Behav Med 10: 1–18
Watson D, Clark LA, Tellegen A (1988) Development and validation of brief measures of positive and negative affect: the PANAS scales. J Pers Soc Psychol 54: 1063–1070
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
Szmukler, G.I., Burgess, P., Herrman, H. et al. Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory. Soc Psychiatry Psychiatr Epidemiol 31, 137–148 (1996). https://doi.org/10.1007/BF00785760
Accepted:
Issue Date:
DOI: https://doi.org/10.1007/BF00785760