Carers
This 2005 report from Roseanne Hepburn for Carers Victoria found that although very few Indigenous people identify as carers, many have significant care responsibilities. Their stories show the legacies of colonisation, dispossession and racism, and a strong need for culturally appropriate support and respite.
This article describes the Carer Life Course Framework developed by Deanna Pagnini as part of the Carers Mental Health Project, a three-year project undertaken by Carers NSW to enhance carers’ wellbeing and reduce the negative impacts of caring for people with a mental illness or disorder.
Carers Australia represents the needs and interests of carers at the national level through advocacy, influencing government policy and providing information and education for carers. Their website provides information about Carers Australia's work in the areas of research, policy, and advocacy.
Carers Victoria supports carers and raises awareness of carers' issues. The site has a wealth of resources including training details, stories from carers and 'Surviving the Maze', a collection of practical guides and information sheets.
Consumer, Carer and Community Participation Resource
This resource has been developed to assist primary health agencies increase the participation of consumers, carers and the community in their health service. It contains information and resources developed for four workshops that focused on three key themes: the connection between consumer participation, health promotion and community development; engaging newly arrived communities; and consumer participation and chronic disease management.
This is a United Kingdom site aimed at consumers, carers, families and health professionals. It offers information and support on a range of illnesses and conditions, with the focus on people sharing their experiences in written, audio and video form.
Experiences and Needs of People Caring for Those with High Prevalence Mental Health Disorders
The Network for Carers of People with a Mental Illness and beyondblue recently conducted a joint project investigating the experiences of carers and families of people who have anxiety, depression, or an eating disorder. This article summarises the main issues and considers them in of terms of relevant government policies and initiatives.
Family caregivers, patients and physicians: ethical guidance to optimize
A new position paper from the American College of Physicians (ACP) provides ethical guidance to physicians for developing mutually supportive patient-physician-caregiver relationships.
Finding consumers and carers: a guide to sourcing consumers
Looking for a Consumer Organisation?
This directory compiled by the Victorian Quality Council allows health services to search for consumer organisations with members willing to become involved in quality improvement. Each entry includes contact details for the organisation along with its aims and activities. Entries are listed both alphabetically by name and by category. Other features of the site include lists of other directories, peak bodies and links to useful websites.
Multiple Sclerosis Australia strives to enhance the quality of life of people with multiple sclerosis and reduce the impact of MS on the families and carers of those with multiple sclerosis
On the Receiving End: A Consumer’s Perspective of Care in the Community
This article explores the consumer experience of Hospital in the Home (HITH) through the prism of the author’s and her family’s experience with post acute discharge practices and palliative care in the home. It raises issues concerning home care’s impact on the lives of consumers and their carers. Will families and communities be able to provide the support their unwell members require? How will people without family and friends to ‘help out’ cope?
Participation in your Health Service System
Victorian Consumers, Carers, and the Community Working Together with their Health Service and the Department of Human Services: Consultation Paper. This consultation was held to help develop a consumer participation policy for use across the Victorian health care system.
This paper describes a study to evaluate the impact of the standards about participation on practice in an adult mental health service. Hospital and community files were audited for evidence of participation and for surveys of carers and consumers relating to the quality of participation. The audits were undertaken before and after the introduction standards.
The Importance of Carer Representation and Participation in Policy Development: A Carer’s Experience
Carers NSW receives requests from federal, state and local governments and agencies for carers to represent Carers NSW on various committees, consultations and forums. In response to this, Carers NSW has recently launched a pilot ‘best practice’ model of carer representation. The Carer Representation Program (CRP) enhances the advocacy work of Carers NSW. CRP representatives are provided with ongoing training and a support model that includes briefing and debriefing by policy staff. Carers NSW is piloting the program for one year with 13 carer representatives from a range of caring situations. This article describes Anna Maria Delloso’s experience of participating in the Carers NSW Carer Representation Program pilot.
WA Health Consumer, Carer and Community Engagement Framework
This framework was developed to assist WA Health and professionals working in the WA health system to implement meaningful and effective consumer, carer and community engagement strategies. The framework covers engagement at four levels: individual patient interaction; department, program or service level; area health level; and WA Health level. A number of tools aimed at helping services implement the framework are included.
Wanting to be Heard and Included: Carers’ Experiences of Hospitals
How included do carers feel when supporting someone while in hospital and after discharge? The growing practice to minimise hospital stays led Carers Queensland to explore carer experiences in dealing with hospital staff and managing their caring role post-discharge. This article reports the findings of a statewide study and implications for improved practices.
Pat McLean has cared for her mum, who has advanced dementia, and more recently, her husband Gordon, who at 44, had a heart attack. Short-term in duration, but long-term in impact, Pat's situation reflects a type of care that is often underestimated. Although caring is often linked with chronic or long-term situations, short-term care can be very intense, often leaving the carer with little or no support and a life of unknowns. Pat's doctorate thesis focuses on the lives of women with partners who have had a heart attack and the lifelong pressures and anxieties they face.
