The effects of caring

The latest material added to the Australian Institute of Family Studies library database is displayed, up to a maximum of 30 items. Where available online, a link to the document is provided. Many items can be borrowed from the Institute's library via the Interlibrary loan system.

See more resources on The effects of caring in the AIFS library catalogue

Intellectual disability and autism : socioeconomic impacts of informal caring, projected to 2030.

Schofield D, Zeppel M, Tanton R, Veerman J, Kelly S, Passey M and Shrestha R
British Journal of Psychiatry v. 215 no. 5 Nov 2019: 654-660
This article estimates the projected economic costs of informal care for people with intellectual disability or autism spectrum disorders over the next 15 years. It calculates lost income, lost tax to federal government, and increased welfare payments, from 2015 to 2030, based on data from the Australian Bureau of Statistics' Surveys of Disability, Ageing and Carers. The estimates highlight the high cost of caring for individuals and the government, and how these costs will only increase significantly in the near future.

Identifying the social costs of tobacco use to Australia in 2015/16

Whetton S, Tait R, Scollo M, Banks E, Chapman J, Dey T, Abdul Halim S, Makate M, McEntee A, Muhktar A, Norman R, Pidd K, Roche A and Allsop S
Perth, WA : National Drug Research Institute, Curtin University, 2019.
This report provides estimates on the costs of tobacco use to Australian society. It looks into the costs of premature mortality and wasted life years, stillbirths, hospitalisation and morbidity, primary care and patient medical costs, long term care and informal care, workplace absenteeism and presenteeism, expenditure on tobacco by dependent smokers, smoking cessation medications, fires and litter, and reduced quality of life. Revenue impacts are also considered, and the methodology used is also described in detail. The findings highlight the immense burden of smoking on individuals and society, despite its declining prevalence over recent decades. The estimated tangible cost of tobacco use to Australia in 2015/16 is $19.2 billion, with estimated intangible costs of a further $117.7 billion. The greatest share of the costs of smoking are borne by smokers, former smokers and their families.

Insights into hardship and disadvantage in Perth, Western Australia: the 100 Families WA baseline report

Seivwright A and Flatau P
Perth, WA : 100 Families WA, 2019.
100 Families WA is a three-year collaborative research project that aims to identify what works to address entrenched disadvantage in families in Western Australia. This report presents findings from the first wave of surveys, which were conducted in 2018/19 with 400 clients of the partner social service agencies. The survey asked about demographics, family and household composition, income, material deprivation, social and personal connections, health status, employment status, mental health outcomes, substance use, wellbeing and quality of life, and adverse life experiences. It also included several open-ended questions: 'what would you do with a spare $100?', 'what does a good day look like for you?', 'what do you need to be safe and well?', and 'what is the one thing that would make the biggest positive change in your life?' To describe the respondents: over a quarter were single adults, over half had children in their care, and nearly a fifth had other family care responsibilities. The findings describe families facing high rates of homelessness, financial stress, food insecurity, chronic health and mental health conditions, and experience of domestic violence - highlighting how this disadvantage spans multiple domains of socioeconomic wellbeing and is deep and persistent.

'This is our life now, our new normal' : a qualitative study of the unmet needs of carers of stroke survivors.

Denham A, Wynne O, Baker A, Spratt N, Turner A, Magin P, Janssen H, English C, Loh M and Bonevski B
PLoS ONE v. 14 no. 5 2019: Article e0216682
This article explores the support needs of carers of stroke survivors, drawing on interviews with 24 carers in the Hunter region of New South Wales. The participants discussed their unmet needs and service preferences, and issues relating to social relationships and support, the adequacy of information, taking care of oneself, and accessing appropriate services. The participants were largely the female spouses of stroke victims. Many of the carers expressed feeling isolated and alone, and many reported preferences for services and interventions related to connectivity and inclusion.

Biomedical health profiles of unpaid family carers in an urban population in South Australia.

Stacey A, Gill T, Price K and Taylor A
PLoS ONE v. 14 no. 3 2019: Article e0208434
This article compares the health of carers and the general population, using data from the North West Adelaide Health Study for adults aged 40 years old and over. It investigates whether informal family carers show different biomedical profiles and whether there is an association between the caregiving role, risk factors and chronic conditions. Information collected includes personal characteristics such as income and employment, general health, stress and mental health, health risk factors such as physical activity and alcohol use, chronic conditions, blood pressure, blood pictures and Vitamin D, inflammatory biomarkers, and body mass index. The findings reveal some differences in the biomedical health profiles of carers and non-carers, and highlight the prevalence of poor health among adults called on to provide care.

Carers of older Australians

Australia. Royal Commission into Aged Care Quality and Safety
Adelaide, S. Aust. : Royal Commission into Aged Care Quality and Safety, 2019.
This paper presents an overview of the role of family members and friends in providing informal and unpaid care to older people in Australia. It looks at the number and characteristics of carers, the types of care tasks provided, role of carers in supporting older people, the personal and economic impacts of caring, carer support needs, and the range of supports and services currently available. This paper has been prepared to help inform the work of the Royal Commission into Aged Care Quality and Safety.

Raising the alarm: carers need care too

Butterfly Foundation
Crows Nest, NSW : Butterfly Foundation, 2019
This report looks into the experiences of carers caring for someone with an eating disorder. It presents findings from a study involving a survey of 468 carers and interviews with 13 carers, when investigated the impacts of being a carer, their experiences of accessing support, and the types of support needed. The findings highlight the long-lasting negative impacts of caring on relationships with partners and other children, mental and physical health, and finances and careers. The participants also raised the importance of connecting with other carers to feel validated and share advice. The findings will help inform the advocacy work of the Butterfly Foundation for Eating Disorders.

Entrenched disadvantage in Western Australia: health, economic and social impacts.

Seivwright A, Callis Z and Flatau P
Perth, WA : 100 Families WA, 2019.
100 Families WA is a three-year research project that aims to identify what works to address entrenched disadvantage in families in Western Australia. The first wave of surveys were conducted in 2018/19 with 400 clients of the partner agencies. This paper presents the first findings on the participants' characteristics and circumstances, and compares them with those of the general population. Topics include: health, disability, caring responsibilities, employment rate, sources of support, material deprivation, neighbourhood satisfaction, and food insecurity. Overall, the findings indicate that community service clients are experiencing significant health, economic and social impacts that act to further impede a transition from entrenched disadvantage. The project is a collaboration between community service agencies, the University of Western Australia, and the families experiencing entrenched disadvantage.

Understanding the social and emotional needs of carers: final report

Hill T and Broady T
Sydney, NSW : Social Policy Research Centre, UNSW Sydney, 2019.
This rapid literature review was commissioned to help the NSW Carers Advisory Council learn more about the socio-emotional health and wellbeing of carers and how they can best be supported. It investigates the impact of caring over time and the particular concerns of young carers, older carers, culturally and linguistically diverse (CALD) carers, and Aboriginal and Torres Strait Islander carers. It briefly reviews the evidence on what works to support carers' social and emotional wellbeing, including respite care, education and training, counselling, support groups, practical help in the home, physical exercise, and technological interventions. Though there is a lack of evidence on the effectiveness of interventions for carers, some broad policy principles and options can be made.

Service needs and uptake amongst children in out-of-home care and their carers

Walsh P, Eastman C, Katz I and McHugh M
Ashfield, NSW : NSW Dept. of Family and Community Services, 2018.
The report looks into the service needs of children and young people in out-of-home care and their carers in New South Wales, including use of health and behavioural services, changes over time, and barriers to service utilisation. The report draws on the first two waves of data from the Pathways of Care Longitudinal Study (POCLS) from New South Wales, supplemented with a review of the Australian and international literature on service engagement. It looks at use of specialist services such as paediatricians and speech pathologists, as well as universal services such as dentists and general practitioners, and formal and informal supports for carers. Overall, the findings indicate that the children in the POCLS study are faring relatively well, with their wellbeing improving over time and good access to services.

How big is the gap in wellbeing between marginalised and non-marginalised young people as they approach adolescence? Evidence from a national survey of 9-14 year old Australians.

Redmond G, Huynh J and Maurici V
Child Indicators Research v. 11 no. 2 Apr 2018: 459-485
This article investigates how wellbeing varies among disadvantaged young people. It compares the wellbeing of non-marginalised young people and young people from five marginalised groups: young people with disability, young carers, materially disadvantaged young people, young people from non-English speaking background, and Indigenous young people. Data is taken from the Australian Child Wellbeing Project, for 5,440 children and young people aged from 9-14 years old. The findings indicate that young carers, the materially disadvantaged, and young people with a disability are at particular risk of experiencing low wellbeing, in particular for 13-14 year olds than 9-12 year olds. However, half of the young people reporting the lowest levels of wellbeing were not in any of the marginalised groups studied here, indicating that health promotion efforts can be directed at all young people rather than targeting specific groups.

From child care to elder care: findings from the Australian Longitudinal Study on Women's Health

Tooth L, Loxton D, Chan H, Coombe J, Dobson A, Hockey R, Townsend N, Byles J and Mishra G
Newcastle, N.S.W. : Women's Health Australia, 2018.
This report examines the nature and impact of informal caregiving by women across the life course, collating new and previous findings from 'Women's Health Australia - the Australian Longitudinal Study on Women's Health' (ALSWH). The study aims to assist policy makers and health care providers better identify present and future caregivers and provide recommendations for policy. It assesses patterns of caregiving, the socio-demographic factors associated with caregiving patterns, and the impact of caregiving on social, employment and health outcomes of caregivers - comparing the four cohorts of women aged from 18 to 97 years old who are taking part in the study, and drawing upon both quantitative and qualitative data. Sections include: use and perceptions of formal child care; caring for children and paid work participation; caring for grandchildren or other people's children; providing care for someone with long-term illness, disability or frailty; relationship and sociodemographic status and caregiving; transitions to and from caregiving; impacts on health behaviour and health service use; providing and needing care; and caring for multiple generations - women in the 'sandwich generation'.

Carers NSW 2018 carer survey: summary report

Carers NSW (Organization)
North Sydney, NSW : Carers NSW, 2018.
Advocacy body Carers NSW conducts a biennial survey on the characteristics and needs of carers in New South Wales, to help inform their work. This report presents the findings of the 2018 survey, which involved 1,706 current carers and 124 former carers. Participants provided information on their demographic characteristics, relationship to care recipient, care recipient needs, length of time care recipients could take care of themselves if left alone, motivation for caring, help with care work, length of care role, hours of care per week, carer health and wellbeing, carer recognition, employment status and impact on employment, use of supports and barriers to support use, satisfaction with services, sources of support, service and support needs, satisfaction with personal relationships, and knowledge of person centred approaches and individualised funding. Consistent with previous surveys, the typical respondent was a female primary carer aged between 45 and 64 years and not in paid work, and the typical care recipient was an adult son with a physical disability.

The super bias: an insecure future

Council on the Ageing (NSW) Inc.
Sydney, N.S.W. : COTA NSW, 2018.
This report highlights how the economic disadvantage faced by women throughout their working lives is greatly magnified in their retirement years, and presents recommendations for reforming superannuation and income policy. It draws on findings from the 2017 COTA NSW survey of 7,600 older people on work, income, and housing security, supplemented by national statistics. Sections of the report include: women's superannuation gap; women's work and the gender pay gap; caring is still women's unpaid work; women live on less income; and housing and income security.

Parent-related stress of male and female carers of adolescents with intellectual disabilities and carers of children within the general population : a cross-sectional comparison.

Patton K, Ware R, McPherson L, Emerson E and Lennox N
Journal of Applied Research in Intellectual Disabilities v. 31 no. 1 Jan 2018: 51-61
Carers of children with intellectual disability experience high rates of stress. This article investigates whether demographic and social characteristics play a mediating role, comparing two types of carers: those who care for an adolescent with an intellectual disability and carers of children within the general population. Data was taken from the Household, Income and Labour Dynamics in Australia (HILDA) study and the Ask study. The findings indicate that social support, relationship status, and financial status help buffer parenting-related stress.

Young carers.

Warren D and Edwards B
The Longitudinal Study of Australian Children annual statistical report 2016. Melbourne, Vic. : Australian Institute of Family Studies, 2017: 85-117
Children growing up in a household with a person with a disability, long-term illness or frailty due to old age may take on caring responsibilities beyond what adults would normally expect of children and what most children would expect to do within the family. This chapter provides new insights into the lives of these young carers, using data from 'Growing Up in Australia, the Longitudinal Study of Australian Children' (LSAC) for young people aged 14-15 years old. It investigates what proportion of these young people spend time caring for another person, what type of help they provide, who they provide care for, how much time they spend providing care, how this differs according to individual and household characteristics, and whether caring limits young peoples' academic achievement. The study finds that almost 40% of LSAC participants are young carers, and that providing some form of care for someone is a normal part of many young peoples' lives. However, intensive care work does undermine young peoples' education, with young carers having significantly lower scores in NAPLAN reading and numeracy than their peers.

Self-reported physical and mental health of Australian carers : a cross-sectional study.

Hussain R, Wark S, Dillon G and Ryan P
BMJ Open v. 6 no. 9 2016: e011417
This article investigates the physical and mental health of carers in rural New South Wales. A survey was conducted with 222 informal carers living in rural regions, and compared to the general population. The study finds that these carers experience significantly poorer health, with very high rates of depressive symptoms and psychological distress in particular. Younger carers also experienced a greater health burden than older carers. Though the study was self-selected, self-reported, and had few male participants, the findings highlight the health concerns of this population and the need for targeted supports.

Carers NSW - 40 years of carers surveys in NSW: 1976-2016

Carers NSW (Organization)
North Sydney, NSW : Carers NSW, 2016.
Advocacy body Carers NSW has been conducting surveys into the needs of carers in New South Wales for forty years. This report highlights themes and trends from this body of work, from its first report in 1976 - as the NSW Council on the Ageing - to its most recent survey in 2016. Although society has changed in many significant ways over the past 40 years, these surveys demonstrate that Australian society still relies heavily on family and friend carers to provide necessary support and that some of the issues these carers face have yet to be addressed.

Carers NSW 2016 carer survey: main report

Carers NSW (Organization)
North Sydney, NSW : Carers NSW, 2016.
Advocacy body Carers NSW conducts a biennial survey on the characteristics and needs of carers in New South Wales, to help inform their work. This report presents the findings of the 2016 survey, which involved 1,958 carers and 123 former carers. Participants provided information on their demographic characteristics, relationship to care recipient, care recipient needs, length of time care recipients could take care of themselves if left alone, motivation for caring, help with care work, length of care role, hours of care per week, carer health and wellbeing, carer recognition, employment status and impact on employment, use of supports and barriers to support use, satisfaction with services, sources of support, service and support needs, satisfaction with personal relationships, and knowledge of person centred approaches and individualised funding. Over 80% of these carers were female, and almost half were aged between 45 and 64 years. Infographic of selected findings are also available on the survey website.

Dual care in Australia: the predictors and impacts of combining informal care with other child care responsibilities

Falkiner A
2016.
"This thesis examines the experiences of dual carers in Australia, who combine informal caring responsibilities with other child caring responsibilities ... Dual carers will constitute an integral part of our ability to meet Australia's increased caring needs, and we currently know very little about what characteristics make people more likely to become dual carers. We also know little about how dual caring impacts upon those providing it. This thesis addresses this lack of knowledge by examining and analysing the predictors and impacts of providing dual care. It finds that dual carers are unique from other Australians who have no caring responsibilities, and those who provide only informal care or child care separately. To identify the predictors and impacts of dual caring, this research performs quantitative, longitudinal analysis of a nationally representative data set, the Household, Income and Labour Dynamics in Australia (HILDA) survey. Cross-sectional analysis is also performed on data from the 2011 Australian Census ... The key impacts of the provision of dual care identified by this thesis are: lowering of life satisfaction, reductions in physical and mental health and wellbeing, decreases in labour force participation and employment, and increases in relationship breakdown."--Author abstract.

The dynamics of informal care provision in an Australian household panel survey: previous work characteristics and future care provision

Nguyen H and Connelly L
Bentley, WA : Bankwest Curtin Economics Centre, 2016.
This paper explores the dynamics of informal care provision choices among working age Australians, using data from the Household, Income and Labour Dynamics in Australia (HILDA) Survey. It examines the impact of previous work characteristics, security, and flexibility and compares care that is provided to people who cohabit and people who reside elsewhere, as well as between the provision of care as the primary caregiver, or in a secondary caring role.

Carers - doing it tough, doing it well

Kemp B, King S, Paleologos Z, Bellamy J and Mollenhauer J
Sydney, N.S.W. : Anglicare Diocese of Sydney, 2016.
In this report, Anglicare Sydney highlights the positive impact of support programs for older carers and calls for the government to secure their funding in face of changes due to the National Disability Insurance Scheme (NDIS). The report presents evaluation findings from two of Anglicare Sydney's programs - the Support Coordination Program (SCP) - a case-managed service designed to provide support over a period of 12 months and develop transition planning for carers over the age of 60 years who are caring for an adult son or daughter with a disability - and the Respite Options Program (ROP) - which provides in-home and day centre respite for carers under the age of 65 years. Evaluation data was collected over a number of years and looked at improved service use, support for social contact, stress and wellbeing, family relations and conflict, and satisfaction with life, health, financial situation, and housing. Government funding of these programs will cease as funds are redirected towards the NDIS - however, carer needs and supports are not formally recognised as part of NDIS packages.

Who cares and does it matter for the labour market?: a longitudinal analysis of the labour force status of Indigenous and non-Indigenous carers

Hunter B, Gray M and Crawford H
Canberra, ACT : Centre for Aboriginal Economic Policy Research, 2016.
Around 12% of the working-age population in Australia - at any one time - are providing unpaid informal care to a person with a disability, long-term illness, or frailty, with a resultant impact also on their labour force availability. Since Indigenous Australians experience higher rates of severe or profound disability than other Australians, they also experience heavy caring burdens. However, there is little research on how this affects employment in this group. Using new data from the Australian Census Longitudinal Dataset, this paper estimates and compares the effects of providing unpaid care on the rates of paid employment of Indigenous and non-Indigenous Australians. It also examines how labour force status changes in association with starting as a carer and exiting from caring.

Are the kids alright?: young Australians in their middle years : final summary report of the Australian Child Wellbeing Project

Redmond G, Skattebol J, Saunders P, Lietz P, Zizzo G, O'Grady E, Tobin M, Thomson S, Maurici V, Huynh J, Moffat A, Wong M, Bradbury B and Roberts K
Australia : Australian Child Wellbeing Project, 2016.
This document summarises the final report of the Australian Child Wellbeing Project. The project explored children and young people's perspectives on what is important for their wellbeing, and was conducted by a team of researchers from Flinders University of South Australia, the University of New South Wales, and the Australian Council for Educational Research. The report describes the methods and findings of the project, which drew upon in-depth discussions with over 100 young people and a national survey of over 5,400 young people in school years 4, 6 and 8 regarding family, health, friends, school, neighbourhood, material, and life satisfaction factors. The project found that most young people in their middle years are doing well. However, a significant proportion of participants had low wellbeing and are missing out on opportunities - in particular, young people with disability, young carers, materially disadvantaged young people, culturally and linguistically diverse young people, Indigenous young people, young people in rural and remote areas, and young people in out of home care.

Are the kids alright?: young Australians in their middle years : final report of the Australian Child Wellbeing Project

Redmond G, Skattebol J, Saunders P, Lietz P, Zizzo G, O'Grady E, Tobin M, Thomson S, Maurici V, Huynh J, Moffat A, Wong M, Bradbury B and Roberts K
Australia : Australian Child Wellbeing Project, 2016.
This is the final report of the Australian Child Wellbeing Project. The project explored children and young people's perspectives on what is important for their wellbeing, and was conducted by a team of researchers from Flinders University of South Australia, the University of New South Wales, and the Australian Council for Educational Research. The report describes the methods and findings of the project, which drew upon in-depth discussions with over 100 young people and a national survey of over 5,400 young people in school years 4, 6 and 8 regarding family, health, friends, school, neighbourhood, material, and life satisfaction factors. Analysis is also included for young people in five marginalised groups - young people with disability, young carers, young people who are materially disadvantaged, culturally and linguistically diverse young people, and Indigenous young people - as well as some limited analysis for young people in rural and remote areas and young people in out of home care. Particular themes include bullying, marginalisation, affluence and deprivation, and family health, and their association with wellbeing.

The lived experience of caring for an Australian military veteran with Posttraumatic Stress Disorder.

Waddell E, Pulvirenti M and Lawn S
Qualitative Health Research v. 26 no. 12 Oct 2016: 1603-1613
Posttraumatic stress disorder (PTSD) is a common mental health condition for military veterans; yet, little is known about how partners experience and cope with these caring relationships. This thesis explores the lived experience of these carers, drawing on interviews with 20 female partners of male veterans living in South Australia.

Young adult carers : a literature review informing the re-conceptualisation of young adult caregiving in Australia.

Day C
Journal of Youth Studies v. 18 no. 7 2015: 855-866
This article explores the existence, extent and nature of informal young adult caregiving in Australia, to provide a foundation for the re-conceptualisation of this group as a distinct carer cohort at risk of significantly reduced future life opportunities. In this article, young adult carers are defined as individuals aged between 18 and 25 years who provide unpaid care or support to family members living with chronic illness or disability. Topics include definitions, the complex nature and extent of young adult caregiving in Australia, caregiving motivations, how they are differentiated from their non-carer peers, and their unmet civil rights.

Care roles and employment decision-making : the effect of economic circumstance.

Austen S, Jefferson T, Lewin G, Ong R and Sharp R
Journal of Industrial Relations v. 57 no. 5 Nov 2015: 665-685
This article examines how older women workers' intentions to leave work are affected by carer responsibilities, and how this association varies according to their economic circumstances. Using a new model of household production, it analyses data from the Australian Mature Age Women in Aged Care (MAWAC) survey.

The lived experience of caring for an Australian military veteran with Posttraumatic stress disorder (PTSD).

Waddell E
2015.
Posttraumatic stress disorder (PTSD) is a common mental health condition for military veterans; yet, little is known about how partners experience and cope with these caring relationships. This thesis explores the lived experience of these carers, drawing on interviews with 20 female partners of male veterans living in South Australia.

Language reversion among people with dementia from culturally and linguistically diverse backgrounds : the family experience.

Tipping S and Whiteside M
Australian Social Work v. 68 no. 2 2015: 184-197
Culturally and linguistically diverse (CALD) older people with dementia, along with their families, face many unique challenges and have unique needs. One such challenge is language reversion, an issue that has received little research attention. This paper presents the findings of an exploratory study of the experiences of family members of people with language reversion emanating from dementia. Using a qualitative, phenomenological approach, in-depth interviews were conducted with seven participants. The study found that the presence of language reversion created additional challenges for family members of someone with dementia, particularly if the family member did not share the person's first language. Community-based aged care services have the potential to offer valuable support, but barriers of negative past experiences, lack of communication, stigma, cultural understanding, and locality need to be overcome. While further research is recommended, these findings have implications for both policy and social work practice in community-based aged care with CALD populations. (Journal article)
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