Research report, no. 16, 2008
The nature and impact of caring for family members with a disability in Australia
Home | Chapter 12 | Appendices
References
Access Economics. (2005). The economic value of informal care: Report by Access Economics Pty Limited for Carers Australia. Canberra: Carers Australia.
Andrews, G., Hall, W., Teesson, M., & Henderson, S. (1999). The mental health of Australians. Canberra: Mental Health Branch, Commonwealth Department of Aged Care.
Australian Bureau of Statistics. (2003). [Survey of Disability, Ageing and Carers data]. Unpublished raw data.
Australian Bureau of Statistics. (2004). Disability, ageing and carers, Australia: Summary of findings, 2003. (Cat. No. 4430.0). Canberra: Author.
Australian Institute of Health and Welfare. (2004). Carers in Australia: Assisting frail older people and people with a disability. Canberra: Author.
Ball, A. E., Russell, E. M., Seymour, D. G., Primrose, W. R., & Garratt, A. M. (2000). Problems in using health survey questionnaires in older patients with physical disabilities: Can proxies be used to complete the sf-36? Gerontology, 47, 334-340.
Barrera, M. J. (1981). Social support in the adjustment of pregnant adolescents. In B. H. Gottlieb (Ed.), Social networks and social support (pp. 69-96). Beverly Hills, CA: Sage.
Beach, S. R., Schulz, R., Williamson, G. M., Miller, L. S., Weiner, M. F., & Lance, C. E. (2005). Risk factors for potentially harmful informal caregiver behavior. Journal of the American Geriatric Society, 53, 255-261.
Beck, A. T., Steer, R. A., Ball, R., Ciervo, C. A., & Kabat, M. (1997). Use of the Beck Anxiety and Depression Inventories for primary care with medical outpatients. Assessment, 4, 211-219.
Berwick, D. M., Murphy, J. M., Goldman, P. A., Ware, J. E., Barsky, A. J., & Weinstein, M. C. (1991). Performance of a five-item mental health screening test. Medical Care, 29, 169-176.
Bittman, M., Fisher, K., Hill, P., & Thomson., C. (2005). The time cost of adult care. Electronic International Journal for Time Use Research, 2(1): 54-66.
Bittman, M., Hill, T., & Thomson, C. (2007). The impact of caring on informal carers' employment, income and earnings: A longitudinal approach. Australian Journal of Social Issues, 42(2), 255-277.
Bull, M. A. (1998). Losses in families affected by dementia: Coping strategies and service issues. Journal of Family Studies, 4(2), 187-199.
Burton, L. C., Zdaniuk, B., Schulz, R., Jackson, S., & Hirsch, C. (2003). Transitions in spousal caregiving. The Gerontologist, 43(2), 230-241.
Cannuscio, C. C., Jones, C., Kawachi, I., Colditz, G. A., Berkman, L., & Rimm, E. (2002). Reverberations of family illness: A longitudinal assessment of informal caregiving and mental health status in the nurses' health study. American Journal of Public Health, 92(8), 1305-1311.
Cochrane, J., Goering, P. N., & Rogers, J. M. (1997). The mental health of informal caregivers in Ontario: An epidemiological survey. American Journal of Public Health, 87(12), 2002-2007.
Cohen, P. N., & Petrescu-Prahova, M. (2006). Gendered living arrangements among children with disabilities. Journal of Marriage and Family, 68, 630-638.
Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, 385-396.
Conner, K. R., Conwell, Y., & Duberstein, P. R. (2001). The validity of proxy-based data in suicide research: A study of patients 50 years of age and older who attempted suicide. II: Life events, social support and suicidal behavior. Acta Psychiatrica Scandinavica, 104, 452-457.
Corman, H., & Kaestner, R. (1992). The effects of child health on marital status and family structure. Demography, 29(3), 389-408.
Cummins, R. A. (2001). The subjective well-being of people caring for a family member with a severe disability at home: A review. Journal of Intellectual and Developmental Disability, 26(1), 83-100.
Cummins, R. A., Hughes, J., Tomyn, A., Gibson, A., Woerner, J., & Lai, L. (2007). Australian Unity Wellbeing Index Survey: 17.1. The wellbeing of Australians: Carer health and wellbeing. Melbourne: Deakin University, Carers Australia and Australian Unity.
Cuskelly, M., & Gunn, P. (2003). Sibling relationships of children with Down syndrome: Perspectives of mothers, fathers, and siblings. American Journal on Mental Retardation, 108, 234-244.
Cuskelly, M., & Hayes, A. (2004). Disability: Characteristics, contexts and consequences. In J. M. Bowes & A. Hayes (Eds.), Children, families, and communities: Contexts and consequences (3rd ed., pp. 21-39). South Melbourne: Oxford University Press.
Dautzenberg, M., Diederiks, J., Philipsen, H., Stevens, F., Tan, F., & Vernooij-Dassen, M. (2000). The competing demands of paid work and parent care. Research on Aging, 22, 165-87.
Deimling, G. T., Smerglia, V. L., & Schaefer, M. L., (2001). The impact of family environment and decision-making satisfaction on caregiver depression. Journal of Aging and Health, 13(1), 47-71.
Department of Family and Community Services. (2000). Annual report 1999-2000. Canberra: Author.
Department of Family and Community Services. (2001). Annual report 2000-01. Canberra: Author. Retrieved 7 February 2008, from http://www.fahcsia.gov.au/annualreport/2001
Department of Family and Community Services. (2002). Annual report 2001-02. Canberra: Author. Retrieved 7 February 2008, from http://www.fahcsia.gov.au/annualreport/2002
Department of Family and Community Services. (2003). Annual report 2002-03. Canberra: Author. Retrieved 7 February 2008, from http://www.fahcsia.gov.au/annualreport/2003
Department of Family and Community Services. (2004). Annual report 2003-04. Canberra: Author. Retrieved 7 February 2008, from http://www.fahcsia.gov.au/annualreport/2004/index.htm
Department of Family and Community Services. (2005). Annual report 2004-2005. Canberra: Author. Retrieved 7 February 2008, from http://www.fahcsia.gov.au/annualreport/2005
Department of Families, Community Services and Indigenous Affairs. (2006). Annual report 2005-2006. Canberra: Author. Retrieved 7 February 2008, from http://www.fahcsia.gov.au/annualreport/2006
Department of Families, Community Services and Indigenous Affairs. (2007). Annual report 2006-2007. Canberra: Author. Retrieved 7 February 2008, from http://www.fahcsia.gov.au/annualreport/2007
de Vaus, D. (2004). Diversity and change in Australian families: Statistical profiles. Melbourne: Australian Institute of Family Studies.
Edwards B., & Clarke V. (2004). The psychological impact of a cancer diagnosis on families: The influence of family functioning and patients' illness characteristics on depression and anxiety. Psycho-oncology, 13(8), 562-576.
Edwards, B., & Clarke, V. (2005). The validity of the family relationships index as a screening tool for psychological risk in families of cancer patients. Psycho-oncology, 14(7), 546-554.
Ekwall, A. K., Sivberg, B., & Hallberg, I. R. (2005). Loneliness as a predictor of quality of life among older caregivers. Journal of Advanced Nursing, 49(1), 23-32.
Ellis, B. H., Bannister, W. M., Cox, J. K., Fowler, B. M., Shannon, E. D., Drachman, D., et al. (2003). Utilization of the propensity score method: An exploratory comparison of proxy-completed to self-completed responses in the Medicare Health Outcomes survey. Health and Quality of Life Outcomes, 1, 47-59.
Epstein, N. B., Bishop, D., Ryan, C., Miller, I., & Keitner, G. (1993). The McMaster model: View of healthy family functioning. In F. Walsh (Ed.), Normal family processes (pp. 138-160). New York: Guilford Press.
Essex, E. L., & Hong, J. (2005). Older caregiving parents: Division of household labor, marital satisfaction, and caregiver burden. Family Relations, 54(3), 448-460.
Gath, A., & Gumley, D. (1986). Family background of children with Down's syndrome and of children with a similar degree of mental retardation. British Journal of Psychiatry, 149, 161-171.
Glezer, H., & Wolcott, I. (2000). Conflicting commitments: Working mothers and fathers in Australia. In L. Haas, P. Hwang, & G. Russell (Eds.), Organizational change and gender equity (pp. 43-56). London: Sage.
Goldberg, D., & Williams, P. (1991). A user's guide to the General Health Questionnaire. Windsor: NFER-Nelson.
Goode, K. T., Haley, W. E., Roth, D. L., & Ford, G. R. (1998). Predicting longitudinal changes in caregiver physical and mental health: A stress process model. Health Psychology, 17(2), 190-198.
Graeffe, D. R., & Lichter, D. T. (1999). Life course transitions of American children: Parental cohabitation, marriage, and single motherhood. Demography, 36(2), 205-217.
Gray, M., & Hughes, J. (2005). Caring for children and adults: Differential access to family-friendly work arrangements. Family Matters, 70, 18-25.
Hales, C. (2007). Crisis or commotion: An objective look at evidence on caregiving in families. Family Matters, 76, 18-23.
Hamilton, M. (1967). Development of a rating scale for primary depressive illness. British Journal of Social and Clinical Psychology, 6, 278-296.
Hawley, D., & De Haan, L. (1996). Towards a definition of family resilience: Integrating individual and family perspectives. Family Process, 35, 283-298.
Heady, B., Warren, D., & Harding, G. (2006). Families, incomes and jobs: A statistical report of the HILDA Survey. Melbourne: Melbourne Institute of Applied Economic and Social Research.
Henz, U. (2004). The effects of informal care on paid-work participation in Great Britain: A lifecourse perspective. Ageing & Society, 24(60), 851-880.
Higgins, D. J., Bailey, S. R., & Pearce, J. C. (2005). Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9(2), 125-137.
Highet, N. J., McNair, B. G., Davenport, T. A., & Hickie, I. B. (2004). How much more can we lose? Care and family perspectives on living with a person with depression. Medical Journal of Australia, 181(7), S6-S9.
Hilton, B. A. (1994). Family communication patterns in coping with early breast cancer. Western Journal of Nursing Research, 16(4), 366-391.
Hirst, M. (2003). Caring-related inequalities in psychological distress in Britain during the 1990s. Journal of Public Health Medicine, 25(4), 336-343.
Hirst, M. (2005). Carer distress: A prospective, population-based study. Social Science Medicine, 61(3), 697-708.
Hughes, J. (2007). Caring for carers: The financial strain of caring. Family Matters, 76, 32-33.
Idler, E. L., & Benyamini, Y. (1997). Self-rated health and mortality: A review of twenty-seven community studies. Journal of Health and Social Behavior, 38, 21-37.
International Wellbeing Group. (2006). Personal Wellbeing Index (4th ed.). Melbourne: Australian Centre on Quality of Life, Deakin University. Retrieved 4 March 2008, from http://www.deakin.edu.au/research/acqol/instruments/wellbeing_index.htm
Jenkinson, C., & McGee, H. (1998) Measuring health status: A brief but critical introduction. Oxford: Radcliffe Medical Press.
Jenson, J., & Jacobzone, S. (2000). Care allowances for the frail elderly and their impact on women care-givers (OECD Labour Market and Social Policy Occasional Paper No. 41). Paris: OECD.
Jokinen, N. S., & Brown, R. I. (2005). Family quality of life from the perspective of older parents. Journal of Intellectual Disability Research, 49(10), 789-793.
Judd, N. (2004). The Naomi Judd interview. Today's Carer Magazine.
Kemper, K. J., & Babonis, T. R. (1992). Screening for maternal depression in pediatric clinics. American Journal of Diseases of Children, 146, 876-878.
Kim, D., Subramanian, S. V., & Kawachi, I. (2006). Bonding versus bridging social capital and their associations with self rated health: A multilevel analysis of 40 us communities. Journal of Epidemiology and Community Health, 60, 116-122.
Kissane, D. W., & Bloch, S. (2002). Family focused grief therapy. Buckingham: Open University Press.
Kissane, D. W., Bloch, S., Burns, W. I., McKenzie, D. P., & Posterino, M. (1994). Psychological morbidity in the families of patients with cancer. Psycho-oncology, 3, 47-56.
Kissane, D. W., McKenzie, M., McKenzie, D. P., Forbes, A., O'Neill, I., & Bloch, S. (2003). Psychosocial morbidity associated with patterns of family functioning in palliative care: Baseline data from the Family Focused Grief Therapy controlled trial. Palliative Medicine, 17(6), 527-537.
Kruijshaar, M. E., Barendregt, J., Vos, T., de Graaf, R., Spijker, J., & Andrews, G. (2005). Lifetime prevalence estimates of major depression: An indirect estimation method and a quantification of recall bias. European Journal of Epidemiology, 20, 103-111.
Lanzi, R. G., Pascoe, J. M., Keltner, B., & Ramey, S. L. (1999). Correlates of maternal depressive symptoms in a national head start program sample. Archives of Pediatric and Adolescent Medicine, 153, 801-807.
Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer.
Lee, C., & Gramotnev, H. (2007). Transitions into and out of caregiving: Health and social characteristics of mid-age Australian women. Psychology and Health, 22, 193-209.
Lin, N., Dean, A., & Ensel, W. (1986). Social support, life events and depression. Sydney: Academic press.
Lovibond, P. F., & Lovibond, S. H. (1995). The structure of negative emotional states: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behaviour Research and Therapy, 33, 335-343.
Magliano, L., Fiorillo, A., Malangone, C., De Rosa, C., Maj, M., & National Mental Health Project Working Group. (2006). Social network in long-term diseases: A comparative study in relatives of persons with schizophrenia and physical illnesses versus a sample from the general population. Social Science and Medicine, 62, 1392-1402.
Marks, N. F., Lambert, J. D., & Choi, H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective US national study. Journal of Marriage and Family, 64(3), 657-667.
Martin, J. M., & Cole, D. A. (1993). Adaptability and cohesion of dyadic relationships in families with developmentally disabled children. Journal of Family Psychology, 7(2), 186-196.
Mathews, R. (2005). The resilient child. InPsych: The Bulletin of the Australian Psychological Society Ltd, 27(2), 20-22.
McNair, D. M., Lorr, M., & Droppleman, L. F. (1971). Profile of mood states: Revised. San Diego: Educational and Industrial Testing Service.
McPherson, C. J., & Addington-Hall, J. M. (2003). Judging the quality of care at the end of life: Can proxies provide reliable information? Social Science and Medicine, 56, 95-109.
Mitrani, V. B., Lewis , J. E., Feaster, D. J., Czaja, S. J., Eisdorfer, C., Schulz, R., & Szapocznik, J. (2006). The role of family functioning in the stress process of dementia caregivers: A structural family framework. The Gerontologist, 46(1), 97-105.
Montes, G., & Halterman, J. (2007). Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119(5), e1040-e1046.
Moos, R. H., & Moos, B. S. (1986). Family Environment Scale manual. Palo Alto, CA: Consulting Psychologists Press.
Murphy, B. (2000). Role reversal, role conflict and role relinquishment: The impacts for women of caring for an ageing parent. Healthsharing Women, 10(4), 6-9.
National Community Services Data Committee. (2006). National community services data dictionary. Version 4 (Cat. no. HWI 91). Canberra: Australian Institute of Health and Welfare.
NATSEM. (2004). Who's going to care? Informal care and an ageing population. Report prepared for Carers Australia. Canberra: National Centre for Social and Economic Modelling, University of Canberra.
Neal, M. B., Ingersoll-Dayton, B., & Starrels, M. E. (1997). Gender and relationship differences in caregiving patterns and consequences among employed carers. Gerontologist, 37(6), 804-816.
Neugarten, B. L., Havighurst, R. J., & Tobin, S. S. (1961). The measurement of life satisfaction. Journal of Gerontology, 16, 134-143.
Olson, D. H. (1993). Circumplex model of marital and family systems: Assessing family functioning. In F. Walsh (Ed.), Normal family processes (pp. 104-137). New York: Guilford Press.
Olson, D. H., Sprenkle, D. H., & Russell, C. S. (1979). Circumplex model of marital and family systems: I. Cohesion and adaptability dimensions, family types, and clinical applications. Family Process, 18(1), 3-28.
Olson, D. H., & Tiesel., J. W. (1991). FACES II update: Linear scoring and interpretation. St Paul, MN: Family Social Science.
Ozone, S., Saeki, T., Inoue, S., Mantani, T., Okamura, H., & Yamawaki, S. (2005). Family functioning and psychological distress among Japanese breast cancer patients and families. Support Care Cancer, 13, 1044-1050.
Pakenham, K. I. (1998). Couple coping and adjustment to multiple sclerosis in care receiver-carer dyads. Family Relations, 47(3), 269-277.
Patten, S. B. (2003). Recall bias and major depression lifetime prevalence. Social Psychiatry and Psychiatric Epidemiology, 38, 290-296.
Pavalko, E., & Artis, J. (1997). Women's caregiving and paid work: Causal relationships in later midlife. Journal of Gerontology: Social Sciences, 52b, s170-179.
Pearlin, L., Lieberman, M., Menaghan, E., Menaghan, E., & Mullan, J. (1981). The stress process. Journal of Health and Social Behavior, 22, 337-356.
Penrod, J. D., Kane, R. A., Kane, R. L., & Finch, M. D. (1995). Who cares? The size, scope, and composition of the caregiver support system. The Gerontologist, 35(4), 489-497.
Perlesz, A., Kinsella, G., & Crowe, S. (2000). Psychological distress and family satisfaction following traumatic brain injury: Injured individuals and their primary, secondary and tertiary carers. Journal of Head Trauma Rehabilitation, 15(3), 909-929.
Pierre, U., Wood-Dauphinee, S., Korner-Bitensky, N., Gayton, D., & Hanley, J. (1998). Proxy use of the Canadian sf-36 in rating the health status of the disabled elderly. Journal of Clinical Epidemiology, 51(11), 983-990.
Pinquart, M., & Sorensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250-267.
Pinquart, M., & Sorensen, S. (2004). Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: A meta-analytic comparison. Aging and Mental Health, 8(5), 438-449.
Pinquart, M., & Sorensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. Journal of Gerontology: B. Psychological Science and Social Science, 61(1), P33-45.
Pinquart, M., & Sorensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. Journal of Gerontology: B. Psychological Science and Social Science, 62B(2), 126-137.
Pressman, L. J., Loo, S. K., Carpenter, E. M., Asarnow, J. R., Lynn, D., McCracken, J. T., et al. (2006). Relationship of family environment and parental psychiatric diagnosis to impairment in ADHD. Journal of the American Academy of Child and Adolescent Psychiatry, 45(3), 346-354.
Pruchno, R. A., & Patrick, J. H. (1999). Mothers and fathers of adults with chronic disabilities: Caregiving appraisals and well-being. Research on Aging, 21, 682-713.
Pruchno, R. A., Patrick, J. H., & Burant, C. J. (1996). Aging women and their children with chronic disabilities: Perceptions of sibling involvement and effects on well-being. Family Relations, 45(3), 318-326.
Radloff, L. S. (1977). The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401.
Reichman, N. E., Corman, H., & Noonan, K. (2004). Effects of child health on parents' relationship status. Demography, 41(3), 569-584.
Risdal, D., & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research and Practice for Persons with Severe Disabilities, 29(2), 95-103.
Robins, G., Pattison, P., Kalish, Y., & Lusher, D. (2007). An introduction to exponential random (p*) graph models for social networks. Social Networks, 29, 173-191.
Roth, D. L., Mittelman, M. S., Clay, O. J., Madan, A., & Haley, W. E. (2005). Changes in social support as mediators of the impact of a psychosocial intervention for spouse caregivers of persons with Alzheimer's disease. Psychology and Aging, 2005(4), 634-644.
Ryff, C. D., & Keyes, C. L. M. (1995). The structure of psychological wellbeing revisited. Journal of Personality and Social Psychology, 69, 719-727.
Saunders, P. (2006). The costs of disability and the incidence of poverty (Social Policy Research Centre Discussion Paper No. 147). Sydney: Social Policy Research Centre, University of New South Wales.
Savage, S., & Bailey, S. (2004). The impact of caring on caregivers' mental health: A review of the literature. Australian Health Review, 27(1), 111-117.
Sawyer, M. G., Arney, F. M., Baghurst, P. A., Clark, J. J., Graetz, B. W., Kosky, R. J., et al. (2000). The mental health of young people in Australia: Child and adolescent component of the National Survey of Mental Health and Wellbeing. Canberra: Mental Health and Special Programs Branch, Commonwealth Department of Health and Aged Care.
Schofield, H., Bloch, S., Herrman, H., Murphy, B., Nankervis, J., & Singh, B. (Eds.). (1998). Family caregivers: Disability, illness and ageing. Melbourne: Allen and Unwin in association with the Victorian Health Promotion Foundation.
Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. Journal of the American Medical Association, 282(23), 2215-2219.
Social Security Act 1991 (Cth). Retrieved 7 February 2008, from http://www.austlii.edu.au/au/legis/cth/consol_act/ssa1991186
Spicer, I. (2007). Disability and family carers. Family Matters, 76, 30-31.
Spielberger, C. D., Gorsuch, R. L., Lushene, R., Vagg, P. R. & Jacobs, G. A. (1983). Manual for the State-Trait Anxiety Inventory. Palo Alto, CA: Consulting Psychologists Press.
Spiess, C. K., & Schneider, U. (2002). Midlife caregiving and employment: An analysis of adjustments in work hours and informal care for female employees in Europe (Policy Implications for Europe ENEPRI Working Paper No. 9). Brussels: European Network of Economic Policy Research Institutes.
Todorov, A., & Kirchner, C. (2000). Bias in proxies' reports of disability: Data from the national health interview survey on disability. American Journal of Public Health, 90(8), 1248-1253.
Tolhurst, P. (2001). Supporting carers for older Australians. Work & Family, 26, pp. 3-4.
Treasury. (2007). Intergenerational report 2007: Circulated by The Honourable Peter Costello, MP, Treasurer of the Commonwealth of Australia. Canberra: Author. Retrieved 22 February 2008, from http://www.treasury.gov.au/igr/IGR2007.asp
Urbano, R. C., & Hodapp, R. M. (2007). Divorce in families of children with Down syndrome: A population-based study. American Journal on Mental Retardation, 112(4), 261-274.
Vitaliano, P. P., Scanlan, J. M., Zhang, J., Savage, M. V., Hirsch, I. B., & Siegler, I. C. (2002). A path model of chronic stress, the metabolic syndrome, and coronary heart disease. Psychosomatic Medicine, 64, 418-435.
Vitaliano, P. P., Zhang, J., & Scanlan, J. M. (2003). Is caregiving hazardous to one's physical health? A meta-analysis. Psychological Bulletin, 129(6), 946-972.
Wade, S. L., Carey, J., & Wolfe, C. R. (2006). An online family intervention to reduce parental distress following pediatric brain injury. Journal of Consulting and Clinical Psychology, 74, 445-454.
Ware, J. E., Kosinski, M., & Gandek, B. (2002). SF-36 health survey: Manual and interpretation guide. Lincoln, RI: QualityMetric Incorporated.
Watson, D., Clark, L. A. & Tellegen, A. (1988). Development and validation of brief measures of positive and negative affect: The PANAS scales. Journal of Personality and Social Psychology, 54, 1063-1070.
Williams, E. (1996). Forfeiting their futures ... To care: A report on younger carers' contribution and needs. ACT: Carers Association of Australia.
Witt, W. P., Riley, A. W., & Coiro, M. J. (2003). Childhood functional status, family stressors, and psychosocial adjustment among school-aged children with disabilities in the United States. Archives of Pediatric and Adolescent Medicine, 157, 687-695.
Home | Chapter 12 | Appendices
