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1997, Australian and New Zealand Journal of Public Health
Research on family caregiving has been based largely on small samples, often drawn from support organisations or services, and has tended to focus on particular disability groups. Our study was population-based and included all ages and disabilities. As the first stage in a longitudinal research and health promotion program for informal caregivers, a statewide random survey of over 26 000 households was conducted by telephone: 78 per cent of self-identified carers ( N = 976) agreed to participate in a one-hour interview. This paper presents a sociodemographic profile of Australian caregivers. Four types of relationship between carers and care recipients (adult offspring, spouses, parents and other relatives and friends) provide the framework for results. Group differences were observed on most characteristics: for example, age, living arrangements, work status and duration of care. Care recipient characteristics, including difficult behaviours and need for assistance, are also reported, as well as use of and need for community services. What the findings reflected most was the heterogeneity of both caregivers and care recipients and the diversity of caregiving roles and circumstances.
Health & Social Care in The Community, 2020
The term family caregiver is used to describe a person who provides care and assistance (without pay) to a family member or close friend who has a disability, chronic condition or long-term illness and is in need of help with daily living activities (e.g. walking, eating, bathing) and nursing activities (e.g. taking medication and attending medical appointments) while living at home. In most instances family caregivers provide most of the hands-on-care as well as domestic work such as shopping, cooking and other daily living activities for their care recipient (Gillick, 2013), often for years without a reasonable break, recognition, reasonable financial support and often without reliable backup or assistance. Family caregivers, also referred to as 'informal caregivers' by virtue of their unpaid, voluntary care work
Social Science & Medicine, 1997
The analysis reported here aims to establish the household prevalence of caregiving in Australia, drawing on a large scale, longitudinal survey conducted as part of the Victorian Carers Project. Comparisons are made with a national survey conducted by the Australian Bureau of Statistics and with Canadian and U.K. findings. Three aspects of caregiving are investigated: reported household prevalence, taking account of differences in definitions used in various surveys; the extent of intergenerational exchanges involved in caregiving; and the time dimensions of caregiving, in terms of duration and patterns of cessation of caregiving over time. A high degree of consistency is found in prevalences of caregiving and implications for the development of policies and programs to support caregivers are raised concerning levels of caregiving, approaches to identifying carers, targeting of services and promotion of caregiving, and the spread of the experience of caregiving across the lifecycle and between generations, ill 1997 Elsevier Science Ltd
The New Zealand medical journal, 2010
To identify the characteristics and demographics of the New Zealand caregiver and their unmet support needs. During December 2007-August 2008, 300 caregivers were recruited to participate throughout New Zealand. Mixed methods data were collected by telephone, using two well validated scales: Centre for Epidemiology Studies Depression and Caregivers Reaction Assessment. Caregivers were also asked open-ended questions regarding their support and additional help needed. Analysis was by descriptive statistics and General Inductive approach Caregivers aged 30-39 had the highest depression, while a larger group shared the highest stress (ages 30-59). Caregivers commonly discussed adverse effects of caregiving on lifestyle, health and financial situations. Lack of information and assistance were concerns, and respite was inadequate. Overall, less than 1% of caregivers of people under the age of 65 and 4% of caregivers of older people were happy with the support received. Caregivers wanted ...
PsycEXTRA Dataset
Who provides care for people with a disability? Outline of the report Carer Payment 2 Carer Payment and Carer Allowance policy background Carer Allowance Growth in the payments Characteristics of people receiving Carer Payment Characteristics of people receiving Carer Allowance SECTION B: The Families Caring for a Person with a Disability Study 3 Method and sample Overview of the sampling procedure and fieldwork Representativeness of the sample The interview schedule Statistical analyses for the report 4 Demographic characteristics of families, finances and service use The demographic characteristics of carers Characteristics of people with a disability Demographic characteristics of other family members in the household The financial situation of the household use of services Conclusion SECTION C: Family relationships and support networks 5 Literature review The dimensions of family functioning Family functioning in the face of stress Relationship separation and caring for a person with a disability Support networks in families caring for a person with a disability Conclusion 6 Empirical findings on relationships, family functioning and supports for carers Supports for the person with a disability and their carer Carers' relationships Family functioning Relationship breakdown Conclusion iv AuSTRALIAN INSTITuTE OF FAMILy STuDIES SECTION D: The mental and physical health of families caring for a person with a disability 7 Literature review Mental health Physical health Conclusion 8 Empirical findings on the mental health of carers The mental health of carers and the general population Timing of carers' first depressive episode Demographic and caring characteristics and carers' mental health Family functioning The availability of support people The mental health of other family members Conclusion 9 Mental health of other family members, including the person with a disability Gender and family members' experience of depression Timing of family members' first depressive episode Demographic and caring characteristics and family members' mental health Family members' experience of depression and carers' depression Family functioning Conclusion 10 Empirical findings on the physical health of carers Care needs of the person with a disability Caring for more than one person with a disability unmet support needs Family functioning SECTION E: Labour force participation 11 Selected labour market issues for female carers: Literature review and empirical findings SECTION F 12 Conclusion
2013
What is known about this topic • Informal care-giving can be burdensome and is often associated with negative outcomes for health, well-being and quality of life.
BMC Health Services Research, 2021
Background: Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity. Methods: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent's demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity. Results: Five point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35-59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected. Conclusions: Our study indicates that both low-and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia.
Background: The world is facing many socio-demographic changes, such as an increased average life expectancy and the presence of chronic and non-communicable diseases, which in turn, leads to an enhanced dependency on others. Consequently, the demand for informal caregivers has significantly increased during the past few years. Caring for a dependent person is linked to a series of burdens that often leads to physical, psychological and emotional difficulties. Taking into consideration the difficulties faced by informal caregivers, knowing in which areas of functioning they need more guidance may help to relieve their burden. Therefore, the main goal of this study is to better understand the needs and competencies of the informal caregiver when caring for a dependent person in the different self-care domains. Methods: cross-sectional study using face-to-face interviews. Descriptive and inferential statistics alongside non-parametric statistical techniques such as the Mann-Whitney te...
2006
This article reports on an exciting new collaborative study between the Institute and the Australian Government Department of Families, Community Services and Indigenous Affairs (FaCSIA) focusing on how families care for a person with a disability. It describes the study aims and methodology and then explores the social lives of carers to provide a demonstration of this study of 1002 carers, nationally.
Journal of Compassionate Health Care, 2017
Background: Informal care is taking an increasingly important role in our health care system, and an improvement in our understanding of caregiving experiences and outcomes has become more relevant. The Lifelines informal care add-on study (Lifelines ICAS) was initiated within the Lifelines Cohort Study to cover the large heterogeneity in the caregiver population and to investigate the complex interplay among the characteristics of the caregiver, care recipient, and care situation and positive and negative caregiver outcomes. In this paper, we discuss the study design and data collection procedures of Lifelines ICAS, provide a detailed overview of its measures, and describe the caregiver study population. Methods: Lifelines participants who participated in the 2nd Lifelines follow-up questionnaire were asked whether they provided informal care. Subsequently, they were invited to participate in Lifelines ICAS. Descriptive statistics were used to describe all informal caregivers in the 2nd Lifelines follow-up questionnaire and to describe the subsample of informal caregivers participating in Lifelines ICAS. Results: A total of 11,651 Lifelines participants were self-identified as an informal caregiver and provided basic information about their care situation. A subsample of 965 informal caregivers participated in Lifelines ICAS and completed a comprehensive questionnaire about their care situation. In this subsample, the average age of caregivers was 53 years (SD 9.8), 75% were female, and 56% cared for a parent (in-law). Care recipients were on average 68 years old (SD 23.5), and 64% were female. Discussion: Considering that informal caregivers are a huge resource for our health care system, Lifelines ICAS enables the study of differences among caregivers, care recipients, and care situations, as well as the study of common characteristics and features across caregiver groups. Notably, data from the Lifelines Cohort Study and Lifelines ICAS are available to all researchers on a fee-for-service basis, and Lifelines ICAS data may be enhanced by one or more follow-up measurements or linkages with other data sources.
International Journal of Social Economics, 2009
Purpose-The perception among carers and health professionals is that the health care system remains limited in its effectiveness and accessibility to non-institutionalized people with a mental illness. The objective of this study is to determine the effect of the care recipient's main disabling condition (either physical or mental) on the carer's perceived need for assistance in their role as carer. Design-Based on the data collected from the Australian Survey of Disability, Ageing and Carers, the investigation involved the non-institutionalized recipients of care with profound and severe disabilities, aged 15 years and over, residing in private dwellings and their primary informal carers. Findings-Regression analysis revealed that carers of those with a mental disability were 2.7 times more likely to report care needs unmet compared to carers of those with a physical disability. Further analysis using interactions showed that carers who were the adult children of mentally disabled parents reported a comparatively very large amount of perceived unmet need. Originality/value-If equity is measured in terms of perceived need rather than finite resources a case is made that primary carers of people with a mental disability experience greater burdens in care.
Singapore Medical Journal, 2019
Introduction: Many older people rely on caregivers for support. Caring for older people can pose significant burdens for caregivers yet may also have positive effects. This study aimed to assess the impact on the caregivers and to determine factors associated with caregivers who were burdened. Methods: This was a cross-sectional study of 385 caregivers of older people who attended a community clinic in Malaysia. Convenience sampling was employed during the study period on caregivers who were aged ≥ 21 years and provided ≥ 4 hours of unpaid support per week. Participants were asked to complete a self-administered questionnaire, which included the Carers of Older People in Europe (COPE) index and the EASYCare Standard 2010 independence score. The COPE index was used to assess the impact of caregiving. A highly burdened caregiver was defined as one whose scores for all three COPE subscales were positive for burden. Care recipients' independence was assessed using the independence score of the EASYCare Standard 2010 questionnaire. Multiple logistic regression was used to determine the factors associated with caregiver burden. Results: 73 (19.0%) caregivers were burdened, of whom two were highly burdened. Caregivers' median scores on the positive value, negative impact and quality of support scales were 13.0, 9.0 and 12.0, respectively. Care recipients' median independence score was 18.0. Ethnicity and education levels were found to be associated with caregiver burden. Most caregivers gained satisfaction and felt supported in caregiving. Ethnicity and education level were associated with a caregiver being burdened.
Journal of Advanced Nursing, 1986
Research on the informal carer: a selected literature review This paper gives a selected review of the available research on the role of the family in caring for elderly or handicapped relatives in the community. In particular, studies which describe who the carers are, the nature of their responsibilities and the physical and emotional costs of caring are examined. The implications of the findings from these studies and the recommendations made for improved care are discussed. A need for further research in this area is identified, particularly from a nursing perspective.
2016
Characteristics of the Informal Caregiver: An Integrative Literature Review by Jonanna R. Bryant MSN, Walden University, 2011 MS, Cairn University, 2005 BSN, College of New Rochelle, 1991 Project Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Nursing Practice Walden University May 2016 Abstract The needs of the informal caregiver can be difficult to determine apart from those related to caring for the terminally ill loved one. Often, informal caregivers’ individual needs are lost because of their day-to-day responsibility and care of their terminally ill loved one. The purpose of this project was to discover the characteristics of informal caregivers of the terminally ill. An integrated literature review was conducted using the Fineout-The needs of the informal caregiver can be difficult to determine apart from those related to caring for the terminally ill loved one. Often, informal caregivers’ individual needs are lost because of their day-to-day ...
The Medical journal of Australia, 2009
To compare the mental health and vitality of people caring for a family member with a disability with those of the general population. Second, to identify factors experienced by carers that put them at risk of poor mental health and vitality. Cross-sectional design where logistic and multiple regression analyses were used to compare rates of mental health problems and vitality between carers and the general population while controlling for demographic characteristics. In addition, logistic and multiple regression using data from the survey of carers were used to identify risk factors for poor mental health and vitality that were particular to caregiving. A randomly selected representative survey of 1002 carers from the Australian Centrelink administrative database (June 2006) who received government payments to care for a person with a disability or severe medical condition, or a person who was frail aged. A sample of 10,223 non-carers was drawn from the fourth wave of the Household...
Health & Social Care in the Community, 2015
Important features of consumer-directed home-based support services for people aged 65 years and over Forbes and Meredith Gresham (HammondCare), Megan Corlis and Helen Radoslovich (Helping Hand), and Sue McKechnie (Resthaven Incorporated) for their valuable input into the study. The authors are grateful to the older Australians and informal carers who participated in the study. Mary Luszcz kindly provided feedback on the wording and selection of attributes. Leonard Gray was a chief investigator on the original research grant application on which this study is based.
2020
Executive Summary In the January 2001 Speech from the Throne, the Government of Canada made a laudable promise to take steps to enable parents to provide care to a gravely ill child without fear of sudden income or job loss. However, parents caring for gravely ill children represent a small minority of Canadians who care for relatives or friends with a long-term health or physical limitation. Furthermore, income and job loss are not the only costs caregivers commonly experience. In 1996, 2.85 million Canadians provided care to at least one person with a chronic health problem or disability. Most caregivers were: • middle-aged women • employed full time • caring for more than one person • caring for a parent (but significant proportions cared for distant kin or friends) • caring for more than two years • not living with the person for whom they cared • not primary caregivers Caregiving has significant implications for caregivers' lives: • more than half made adjustments to their...
Health & Social Care in the Community, 2014
Caring for a family member ill or with a disability may adversely impact the caregiver's employment, financial and social situation, and physical and emotional well-being. • The responsibility falls disproportionately upon women. • Caregivers benefit from supportive and flexible employment policies, culturally appropriate services, social support and financial assistance. • Most respondents were concerned about inadequate/uncertain income (90%) followed by social (77%), physical (63%) and emotional (57%) consequences.
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