Bibliographies
The following bibliography has been compiled from the Australian Family & Society Abstracts database and other resources held in the Institute's library. Where available a link to the document on the Web is provided. Most items can be borrowed from the Institute's library via the inter library loan system. Online publications in PDF format require Adobe Acrobat Reader.
Updated October 2009
Carers and caring
Carer involvement project: Gathering lived experience (PDF 1.6 MB).
K. Cassar Bartolo and F. Sanders
ARAFEMI, May 2008
The Peer Mentoring Project aims to develop an evidence-based and replicable peer mentoring support service for carers of people with a mental illness. This service provides one-on-one support based both at the inpatient unit and another community health service within the Northern (Melbourne) region. The report presents knowledge and practical tips around carer needs, peer support and mentoring models. It identifies service gaps and to assist in the design of a workable model the report also presents a map of Victorian carer peer support services and relevant mentoring models nationally.
Children and young people with a disability belong with their families (PDF 1.0 MB).
(2007). Verick, M.
Family (Families Australia), 8 , 20-21.
The prevalence of profound or severe disability in Australian children is gradually increasing. Most of these children are cared for by their families. This article reports that families often require financial assistance and services to care for children with a disability. It discusses the educational, health and social services requirements of these families. In addition to the disability support services provided under the Commonwealth State / Territory Disability Agreement (CSTDA), there is a need for early intervention services and for families to have a break from constant caring.
Crisis or commotion? An objective look at evidence on caregiving in families (PDF 944 KB).
(2007). Hales, C.
Family Matters, 76, 18-23.
There are nearly 500,000 primary carers in Australia, who provide informal care to disabled or aged family members. This article summarises Australian data on the prevalence, role, motivations, assistance needs, and relationship effects of providing informal care. The different studies included in this article highlight the nature of role, responsibility, and obligation, and the importance of supportive and financial assistance. The article concludes with policy implications in the face of an ageing population and conflicting employment and caring demands.
Disability and family carers (PDF 126 KB).
(2007). Spicer, I.
Family Matters, 76, 30-31.
This article summarises many of the issues faced by families during lifelong care of family members with disabilities. Issues include the effect on other relationships, competing caring roles, social isolation, reduced labour force participation, increased expenditures, care planning, limited respite services, and longer life expectancy of disabled family members due to advances in medical and other services and the impact on ageing parents - all of which emphasise the need for support and alternative care arrangements for these at risk families.
(2007).
Canberra, ACT: Australian Institute of Health and Welfare.
This report presents data from the Commonwealth State / Territory Disability Agreement National Minimum Data Set, as collected from government funded services between 1 July 2005 and 30 June 2006. It includes the characteristics of service users, types of disabilities, income source, accommodation, age, and gender; informal carers and their support needs; service outlets; and service usage. This report also includes a special section on service users with autism, in comparison with other service users.
Diverse strategies for diverse carers: The cultural context of family carers in NSW (PDF 192 KB).
(2006). Cardona, B., Chalmers, S., Neilson, B.
Parramatta, NSW: Centre for Cultural Research, University of Western Sydney for the Department of Ageing, Disability and Home Care.
This research into the everyday experiences of carers from culturally and linguistically diverse (CALD) and Anglo Australian backgrounds aimed to increase awareness and understanding of the diversity of caring experiences, and the inter relationship of cultural, socio economic and gender issues in shaping these experiences. The report examines cultural dimensions of family responsibility towards the elderly, factors influencing service use and non use, caregiver burden, workforce development issues, under utilisation of services, language barriers, dealing with disability issues, carers and mental health issues, notions of entitlements and citizenship rights, and carers in a global and cross cultural context.
(2007). Edwards, B., Higgins, D., Zmijewski, N.
Family Matters, 76, 8-17.
The Families Caring for a Person with a Disability Study is a collaborative project between the Australian Institute of Family Studies and the Australian Government Department of Families, Community Services and Indigenous Affairs, in which 1002 Australian carers were interviewed on the physical, emotional, social, family relationship, financial, and labour force impacts of caring. This article introduces the study, describing its aims and methodology, and presents initial findings on the social lives of carers. Though face to face social contact among carers is broadly comparable to that of the general population, some groups of carers experience much lower contact. The study considers risk factors, such as poor health and family members with high needs disabilities, and explores factors in the desire for more social contact.
(2007). Murray, S.
Family Matters, 76, 24-29.
Family members provide the vast majority of care for young people with disabilities. This article considers the care provided by parents during a child's transition from school, based on in-depth interviews with mothers of eight young women aged 16-24 years, with severe or profound disabilities, from regional areas of Tasmania and suburban areas of Victoria. The mothers describe their efforts to find suitable day programs and the changes in government health and financial services offered once the child is considered to be of adult age. Unlike non-disabled young people leaving school, severely disabled young people and their families do not experience a transition as such, but rather a continuation of care and dependence.
(2007). Taskforce on Care Costs (TOCC).
Balmain, NSW: Taskforce on Care Costs.
The Taskforce on Care Costs (TOCC) was established in November 2003 with the aim of investigating the financial cost of care and how it affects workforce participation. It also aimed to promote reforms within a policy framework of financial sustainability, equity and choice. This report provides information on the work / care dynamic for carers of the aged and people with a disability. Its purpose is to provide a holistic picture of the experience of combining work and aged and disability care, which includes the financial cost of care and the personal, community and economic impacts of care on workforce participation. It argues that there is a need for urgent attention by policy makers and employers to relieve the current work / care tensions experienced by Australians caring for a person who is aged or has a disability. The report makes findings in relation to combining work and aged and disability care, and makes recommendations for change.
Identifying carer needs for support and advocacy (PDF 122 KB).
ARAFEMI Research Report 1 July 2007
Carers lived experience of supporting someone with a mental illness provides vital information on what help is needed to care more effectively and how we can raise the carer voice. This paper is part of a service evaluation and carer consultation conducted by ARAFEMI.
My life as a budget item: Disability, budget priorities and poverty in Tasmania.
(2006). Hinton, T.
Hobart, Tas: Social Action and Research Centre, Anglicare Tasmania, and online.
This research explored the circumstances of the working age population of people with disabilities living on low incomes in Tasmania during 2005 - 2006. Information about the daily lives of 48 people reliant on the Disability Support Pension, and 20 carers was gathered. This report looks at the number of people with disabilities in Tasmania, poverty and disability, the policy context, the service system, regional issues, sources of income, employment, discrimination, additional costs, Welfare to Work, education and training, volunteering, living in the community, becoming disabled, personal care and support services, assistive technology, mobility and other equipment, housing, access to health services, participation and exclusion, social needs and social isolation, transport, the costs of caring, managing finances, being in control, and living in hardship.
The nature and impact of caring for family members with a disability in Australia.
Edwards, B., Higgins, D. J., Gray, M., Zmijewski, N., & Kingston, M. (2008).
(AIFS Research Report No. 16). Melbourne: Australian Institute of Family Studies and Department of Families, Housing, Community Services and Indigenous Affairs. (140 pages).
The analysis is based upon data from a nationally representative survey, conducted in 2006, of 1,002 carers who receive an Australian Government payment directed towards carers (Carer Payment and/or Carer Allowance). Carers were selected from a random sample of 5,000 carers from Centrelink records who, at June 2006, were receiving Carer Payment and/or Carer Allowance.The aims of this report are to: examine the effect of caring on family and social relationships;document the social, emotional, physical and financial impact on families of caring for a person with a disability; examine the effect of caring on labour force status.
Parents of adults with an intellectual disability (PDF 1.7 MB).
(2006). Cuskelly, M.
Family Matters, 74, 20-25, and online.
There are an increasing number of adults with an intellectual disability living into middle and old age, and often these adults are cared for by their parents in the family home. Individuals who live in other accommodation generally still receive both practical and emotional support from their parents. This article reviews the literature, details some of the demands and strains experienced by parents of adults with an intellectual disability, and examines factors that research suggests may affect parents' capacities to cope with these.
(2007).
Ringwood Nth, Vic: InterACT.
The aim of this resource book is to help parents of children with chronic illness, disability, mental illness, or a life threatening illness to find the support they need in the medical and community systems. The book also provides advice on how parents can care for themselves and their families during times of stress. It covers pre diagnosis, immediately after diagnosis, empowerment, grievance policies, the voice of your child, hospital admissions, public versus private, specialists, pharmacies, developing a care plan for your child, emergency medical plan, calling an ambulance, coping strategies, logistics, financial considerations, interpreters, transition, hospital personnel terminology, case management, early intervention, respite, going to school, transport, key sources of support, family and friends, taking care of yourself, caring for the whole family, the non primary carer's perspective and siblings. The book includes a list of publications, resources and services in Victoria.
Where to now? TOCC 2006 final report (PDF 3.4 MB).
(2006). Bourke, J.
Balmain, NSW: Taskforce on Care Costs, and online.
The Taskforce on Care Costs is a national body established to assess the financial cost of care and its effect on workforce participation. This report is intended to advise Government on solutions to Australia's financial cost of care, how that affects workforce participation, and then presents key findings and recommendations on the following aspects: reimbursement of all or part of the care costs paid by employees for children; tax revenue benefit in extending the child care tax rebate to registered care and elder and disability care costs; extension of reimbursement of care costs to include elder and disability care costs and its anticipated effect of increased workforce participation; and the flexibility of reimbursement payments.