Summary
With increasing rates of disability and a major shift from custodial to community care, there is an increasing reliance on families and other supporters of people of all ages with severe and chronic mental or physical disabilities. At the same time there is growing evidence about the potentially negative impact of caregiving on the health and well-being of family caregivers. There is little systematic knowledge about the prevalence of caregiving and its impact on the caregiver. In past research on caregivers, study samples have been small, mostly recruited from service providers or support organizations, and hence unrepresentative. Research has tended to focus on a particular disability. The present study is population-based and cross-diagnostic, based on the assumption that other factors besides type of disability are influential in determining the impact of caregiving on the family caregiver.
As the first stage in an integrated research and health promotion programme for informal caregivers, a random survey of Victorian households is being conducted by telephone. The study aims to provide information on the prevalence of caregiving and to establish the broad spectrum of caregiving roles in the community without using predefined exclusion criteria, to assess the impact of the experience of caregiving on the quality of life of caregivers, and to identify services and strategies used by caregivers which help to minimise the negative impact of caregiving. Findings from the first wave of data collection in this survey are presented.
Use of self-identification as the method of recruiting participants resulted in the inclusion of a broad diversity of special needs caregivers. In spite of this diversity, covering a spectrum of caring roles, there are clear differences between this group and a comparison group of general caregivers in relation to health and well-being. The self-report measures employed in this work appear to be useful pointers to quality of life of the caregivers in our community.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Preview
Unable to display preview. Download preview PDF.
References
Barusch HS (1988) Problems and coping strategies of elderly spouse caregivers. Gerontologist 28: 677–685
Baumgarten M (1989) The health of persons giving care to the demented elderly: a critical review of the literature. Clin Epidemiol 42(12): 1137–1148
Braithwaite V (1986) The burden of home care: how is it shared? Suppl Community Health Stud 10: 7–11
Braithwaite V (1990) Bound to care. Sydney, Allen&Unwin
Braithwaite V (1992) Caregiving burden: making the concept scientifically useful and policy relevant. Res Ageing 14(1): 3–27
Brodaty H, Gresham M (1989) Effect of a training programme to reduce stress in carers of patients with dementia. Brit Med J 299: 1375–1379
Draper BM, Poulos CJ, Cole AMD, Poulos RG, Ehrlich F (1992) A comparison of caregivers for elderly stroke and dementia victims. J Am Geriat Soc 40: 896–901
Dupont A (1986) Socio-psychiatric aspects of the young severely mentally retarded and the family. Brit J Psychiat 148: 227–234
Ellis BH, Miller KI, Given SW (1989) Caregivers in home health care situations: measurement and relations among critical concepts. Health Commun 1(4): 207–226
Fadden G, Bebbington P, Kuipers L (1987) The burden of care: the impact of functional psychiatric illness on the patient’s family. Brit J Psychiat 154: 768–775
Fiore J, Becker J, Coppel DB (1983) Social Network Interactions: A buffer or a stress. Am J Community Psychol 11: 423–439
Fitting M, Rabins P, Lucas MJ, Eastham J (1986) Caregivers for dementia patients: comparison of husbands and wives. Gerontologist 26: 248–252
Folkman S, Lazarus R, Gruen R, DeLongis A (1986) Appraisal, coping, health status and psychological symptoms. J Personality Soc Psychol 50: 571–579
Gallagher D, Lovett S, Zeiss A (1989) Interventions with caregivers of frail elderly persons. In: Ory MG, Bond K (eds) Ageing and Health Care. London, Routledge, pp 167–190
Gibson D (1984) Knowledge of community services amongst the aged. Australian J Society Issues 19: 3–13
Green H (1985) Informal carers. General Household Survey, 15, Supplement A, HMSO, London
Gwyther LP, George LK (1986) Caregivers for dementia patients: complex determinants of wellbeing and burden. Gerontologist 26: 245–247
Haley WE (1983) A family-behavioural approach to the treatment of the cognitively impaired elderly. Gerontologist 23: 18–20
Haley WE, Levine EG, Brown SL, Berry JW, Hughes GH (1987) Psychological, social and health consequences of caring for a relative with senile dementia. J Am Geriat Soc 35: 405–411
Harper S, Lund DA (1990) Wives, husbands and daughters caring for institutionalized and non-institutionalized dementia patients: towards a model of caregiver burden. Internat J Aging Human Devel 30(4): 241–262
Headey B, Wearing AJ (1981) Australians Priorities, Satisfactions and Wellbeing. University of Melbourne, Department of Community Welfare Service Monograph in Public Policy Studies No.4
Herrman H, Singh B, Schofield H, Eastwood R, Burgess P, Lewis V, Scotton R (1993) The health and wellbeing of informal caregivers: a review and study programme. Australian J Public Health 17: 261–266
Hoenig J, Hamilton MW (1966) The schizophrenic patient in the community and his effect on the household. Internat J Soc Psychiat 165–176
Hooyman NR, Kiyak HA (1991) Social Gerontology: a multidisciplinary perspective (2nd ed). Allyn and Bacon, Massachusetts
Horowitz A (1985) Sons and daughters as caregivers to older patients: difference in role performance and consequences. Gerontologist 25: 612–617
Jorm AF, Henderson S, Scott R, MacKinnon AJ, Korten AB, Christensen H (1993) The disabled elderly living in the community: care received from family and formal services. Med J Australia 158: 383–388
Jutras S, Veilleux F (1991) Informal caregiving: gender roles and care giving to the elderly: an empirical study. Sex Roles 25: 1–18
Kinnear D, Graycar A (1984) Ageing and family dependency. Australian J Society Issues 19: 13–26
Kinney JM, Stephens MAP (1989) Hassles and uplifts of giving care to a family member with dementia. Psychol Ageing 26: 273–278
Lawton MP, Kleban MH, Moss M, Rovine M, Glicksman A (1989) Measuring caregiving appraisal. J Gerontol 44: 61–67
Lefley HP (1987) Aging parents as caregivers of mentally ill adult children: an emerging social problem. Hospital Community Psychiat 38: 1063–1070
Levin E, Sinclair I, Gorbach P (1989) Families, services and confusion in old age. Avebury, Hants
MacCarthy B, Lesage A, Brewin CR, Brugha TS, Mangen S, Wing JK (1989a) Needs for care among the relatives of long-term users of day care. Psychol Med 19: 725–736
MacCarthy B, Kuipers L, Hurry J, Harper R, le Sage A (1989b) Counselling the relatives of the long-term adult mentally ill. I. Evaluation of the impact on relatives and patients. Brit J Psychiat 154: 768–775
Montgomery RJV, Gonyea JC, Hooyman NR (1985) Caregiving and the experience of subjective and objective burden. Family Rel 34: 19–25
Morris RG, Morris LW, Britton PG (1988) Factors affecting the emotional wellbeing of the caregivers of dementia sufferers. Brit J Psychiat 153: 147–156
O’Connor DW, Pollitt PA, Hyde JB, Brook CPB, Reiss BB, Roth M (1988) Do general practitioners miss dementia in elderly patients? Brit Med J 297: 1107–1110
Novak M, Guest C (1989) Caregiver response to Alzheimer’s disease. Internat J Aging Human Develop 28: 67–79
Pearlin LI, Mullan JT, Semple SJ, Skaff MM (1990) Caregiving and the stress process: An overview of concepts and their measures. Gerontologist 30(5): 563–594
Platt S (1985) Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales. Psychol Med 15: 383–389
Pratt C, Schmall V, Wright S (1986) Family caregivers and dementia: social casework. J Contemporary Soc Work, 67: 119–124
Pruchno RA, Potanishki SL (1989) Caregiving spouses: physical and mental health in perspective. J Am Geriat Soc 37: 697–705
Quayhagen MP, Quayhagen M (1988) Alzheimer’s stress: coping with the caregiving role. Gerontologist 28: 391–396
Romans-Clarkson SE, Clarkson JE, Dittmen ID, Flett R, Linsell C, Mullen PE, Mullin B (1986) Impact of a handicapped child on mental health of parents. Brit Med J 293: 1395–1397
Schene AH (1990) Objective and subjective dimensions of family burden: towards an integrated framework for research. Soc Psychiat Psychiat Epidemiol 25: 289–297
Schofield H, Herrman H (1993) Characteristics of carers in Victoria. Family Matters (34): 21–36
Schultz CL, Schultz NC (1990) Caring for family caregivers. Australian J Marriage Family 11: 84–93
Sherman BR, Cocozza JJ (1984) Stress in families of the developmentally disabled: a literature review of factors affecting the decision to seek out-of-home placements. Family Relations 33(1): 95–103
Smith IV, Birchwood MJ (1987) Specific and non-specific effects of education intervention with families living with a shizophrenic relative. Brit J Psychiat 150: 645–652
Stone R, Cafferata GL, Sangl J (1987) Caregivers of the frail elderly: a national profile. Gerontologist 27: 616–626
Thute B (1990) Child and parent predictors of family adjustment in households containing young developmentally disabled children. Family Relations 39(3): 292–297
Thrner D, Frankel BG, Lewin DM (1983) Social support: conceptualization, measurement and implication for mental health. Community Mental Health 3: 67–111
Wasow M (1985) Chronic schizophrenia and spouses and children compared. J Chronic Disabilities 38: 711–716
Watson D, Clark LA, Tellegen A (1988) Development and validation of brief measures of Positive and Negative Affect: The PANAS Scales. J Personality Soc Psychol 54: 1063–1070
Watson D, Pennebaker J (1989) Health complaints, stress and distress: exploring the central role of negative affectivity. Psychol Rev 96: 234–254
Wells Y, Jorm AF (1987) Evaluation of a special nursing home unit for dementia sufferers: a randomised controlled comparison with community care. Australian New Zealand J Psychiat 21: 524–531
Whittick JE (1988) Dementia and mental handicap: emotional distress in carers. Brit J Clin Psychol 27: 167–172
Zarit SH, Todd PA, Zarit JM (1986) Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist 26: 260–266
Zarit SH (1989) Issues and directions in family intervention research. In: Light E, Lebowitz BD (eds) Alzheimer’s disease treatment and familiy stress: directions of research. US Department of Health and Human Services, Public Health Services, ADAMHA & NIMH, pp 458–486
Zarit S, Toseland R (1989) Current and future direction in family caregiving research. Gerontologist 29: 481–483
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 1994 Springer-Verlag Berlin Heidelberg
About this paper
Cite this paper
Herrman, H., Schofield, H., Murphy, B., Singh, B. (1994). The Experiences and Quality of Life of Informal Caregivers. In: Orley, J., Kuyken, W. (eds) Quality of Life Assessment: International Perspectives. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-79123-9_10
Download citation
DOI: https://doi.org/10.1007/978-3-642-79123-9_10
Publisher Name: Springer, Berlin, Heidelberg
Print ISBN: 978-3-642-79125-3
Online ISBN: 978-3-642-79123-9
eBook Packages: Springer Book Archive