AIHW logo
METEOR logo
Our sites
AIHW GEN Aged Care Data Aboriginal and Torres Strait Islander
Health Performance Framework
Indigenous Mental Health and
Suicide Prevention Clearinghouse
Australian Mesothelioma Registry Housing data Regional Insights for Indigenous Communities
Contact FAQs
  • Find metadata
    • Find metadata
    • Getting started
    • Data set specifications
    • Indicator sets
    • Data quality statements
    • Data dictionary archives
  • Metadata management
    • Metadata management
    • Data standards
    • Registration authorities
    • Registration statuses
  • How to use METEOR
    • How to use METEOR
    • First steps
    • Using My Page
    • Downloading and printing
    • FAQs
    • About METEOR
  • Learn about metadata
    • Learn about metadata
    • Metadata explained
    • How to create metadata
    • Metadata development resources

Person—informal carer existence indicator, code N

Identifying and definitional attributes

Metadata item type:Help on this termData Element
Short name:Help on this termInformal carer existence indicator
Synonymous names:Help on this termInformal carer availability, Informal carer existence flag, Carer arrangements (informal)
METEOR identifier:Help on this term320939
Registration status:Help on this term
  • Community Services (retired), Standard 29/04/2006
  • Disability, Superseded 29/02/2016
  • Health, Superseded 17/10/2018
Definition:Help on this term

Whether a person has an informal carer, as represented by a code.

Data element concept attributes

Identifying and definitional attributes

Data element concept:Person—informal carer existence indicator
METEOR identifier:Help on this term320937
Registration status:Help on this term
  • Community Services (retired), Standard 02/05/2006
  • Disability, Superseded 29/02/2016
  • Health, Superseded 17/10/2018
Definition:Help on this term

Whether a person has an informal carer.

Object class:Help on this termPerson
Property:Help on this termInformal carer existence indicator

Value domain attributes

Identifying and definitional attributes

Value domain:Yes/no/not stated/inadequately described code N
METEOR identifier:Help on this term301747
Registration status:Help on this term
  • ACT Health (retired), Candidate 08/08/2018
  • Children and Families, Standard 22/11/2016
  • Community Services (retired), Standard 14/02/2006
  • Disability, Standard 07/10/2014
  • Early Childhood, Standard 21/05/2010
  • Health, Standard 21/09/2005
  • Homelessness, Standard 23/08/2010
  • Housing assistance, Standard 10/02/2006
  • Independent Hospital Pricing Authority, Standard 01/11/2012
  • Indigenous, Standard 13/03/2015
Definition:Help on this termA code set representing 'yes', 'no' and 'not stated/inadequately described'.

Representational attributes

Representation class:Help on this termCode
Data type:Help on this termNumber
Format:Help on this termN
Maximum character length:Help on this term1
Permissible values:Help on this term
ValueMeaning
1Yes
2No
Supplementary values:Help on this term
ValueMeaning
9Not stated/inadequately described

Collection and usage attributes

Guide for use:Help on this term

CODE 9    Not stated/inadequately described

This code is not for use in primary data collections.

Data element attributes

Collection and usage attributes

Guide for use:Help on this term

Informal carers may include those people who receive a pension or benefit for their caring role and people providing care under family care agreements. Excluded from the definition of informal carers are volunteers organised by formal services and paid workers.

This metadata item is purely descriptive of a client's circumstances. It is not intended to reflect whether the informal carer is considered by the service provider to be capable of undertaking the caring role. The expressed views of the client and/or their carer should be used as the basis for determining whether the client is recorded as having an informal carer or not.

When asking a client whether they have an informal carer, it is important for agencies or establishments to recognise that a carer does not always live with the person for whom they care. That is, a person providing significant care and assistance to the client does not have to live with the client in order to be called an informal carer.

Collection methods:Help on this term

Agencies or establishments and service providers may collect this item at the beginning of each service episode and /or assess this information at subsequent assessments.

Some agencies, establishments/providers may record this information historically so that they can track changes over time. Historical recording refers to the practice of maintaining a record of changes over time where each change is accompanied by the appropriate date.

Examples of questions that have been used for data collection include:

Home and Community Care NMDS

‘Do you have someone who helps look after you?’

Commonwealth State/Territory Disability Agreement NMDS

‘Does the service user have an informal carer, such as family member, friend or neighbour, who provides care and assistance on a regular and sustained basis?

Comments:Help on this term

Recent years have witnessed a growing recognition of the critical role that informal support networks play in caring for frail older people and people with disabilities within the community. Not only are informal carers responsible for maintaining people with often high levels of functional dependence within the community, but the absence of an informal carer is a significant risk factor contributing to institutionalisation. Increasing interest in the needs of carers and the role they play has prompted greater interest in collecting more reliable and detailed information about carers and the relationship between informal care and the provision of and need for formal services.

This definition of informal carer is not the same as the Australian Bureau of Statistics (ABS) definition of principal carer, 2003 Survey of Disability, Ageing and Carers and primary carer used in the 1998 survey. The ABS definitions require that the carer has or will provide care for a certain amount of time and that they provide certain types of care.

The ABS defines a primary carer as a person of any age who provides the most informal assistance, in terms of help or supervision, to a person with one or more disabilities. The assistance has to be ongoing, or likely to be ongoing, for at least six months and be provided for one or more of the core activities (communication, mobility and self care). This may not be appropriate for community services agencies wishing to obtain information about a person's carer regardless of the amount of time that care is for, or the types of care provided.

Information such as the amount of time for which care is provided can of course be collected separately but, if it were not needed, it would place a burden on service providers.

Source and reference attributes

Origin:Help on this term

Australian Institute of Health and Welfare

National Health Data Committee

National Community Services Data Committee

Reference documents:Help on this term

Australian Bureau of Statistics (ABS) 1993 Disability, Ageing and Carers Survey and 2003 Survey of Disability, Ageing and Carers.

Australian Institute of Health and Welfare (2005) Commonwealth State/Territory Disability Agreement National Minimum Data Set collection (CSTDA NMDS) Data Guide: 2005-06.

National HACC Minimum Data Set User Guide Version 2 July 2005. Home and Community Care (HACC) Program.

Relational attributes

Related metadata references:Help on this term
Supersedes Person (requiring care)—carer availability status, code N
  • Community Services (retired), Superseded 29/04/2006
  • Health, Superseded 04/07/2007
Has been superseded by Person—informal carer existence indicator, yes/no/not stated/inadequately described code N
  • Disability, Standard 29/02/2016
  • Health, Standard 17/10/2018
Implementation in Data Set Specifications:Help on this term
All attributes +

Cardiovascular disease (clinical) DSSHealth, Superseded 22/12/2009

DSS specific attributes +

DSS specific information:

Informal carers are now present in 1 in 20 households in Australia (Schofield HL. Herrman HE, Bloch S, Howe A and Singh B. ANZ J PubH. 1997) and are acknowledged as having a very important role in the care of stroke survivors (Stroke Australia Task Force. National Stroke Strategy. NSF; 1997) and in those with end-stage renal disease.

Absence of a carer may also preclude certain treatment approaches (for example, home dialysis for end-stage renal disease). Social isolation has also been shown to have a negative impact on prognosis in males with known coronary artery disease with several studies suggesting increased mortality rates in those living alone or with no confidant.


Cardiovascular disease (clinical) DSSHealth, Superseded 01/09/2012

DSS specific attributes +

DSS specific information:

Informal carers are now present in 1 in 20 households in Australia (Schofield HL. Herrman HE, Bloch S, Howe A and Singh B. ANZ J PubH. 1997) and are acknowledged as having a very important role in the care of stroke survivors (Stroke Australia Task Force. National Stroke Strategy. NSF; 1997) and in those with end-stage renal disease.

Absence of a carer may also preclude certain treatment approaches (for example, home dialysis for end-stage renal disease). Social isolation has also been shown to have a negative impact on prognosis in males with known coronary artery disease with several studies suggesting increased mortality rates in those living alone or with no confidant.


Cardiovascular disease (clinical) NBPDSHealth, Superseded 17/10/2018

DSS specific attributes +

DSS specific information:

Informal carers are now present in 1 in 20 households in Australia (Schofield HL. Herrman HE, Bloch S, Howe A and Singh B. ANZ J PubH. 1997) and are acknowledged as having a very important role in the care of stroke survivors (Stroke Australia Task Force. National Stroke Strategy. NSF; 1997) and in those with end-stage renal disease.

Absence of a carer may also preclude certain treatment approaches (for example, home dialysis for end-stage renal disease). Social isolation has also been shown to have a negative impact on prognosis in males with known coronary artery disease with several studies suggesting increased mortality rates in those living alone or with no confidant.


Commonwealth State/Territory Disability Agreement NMDS - 1 July 2006Community Services (retired), Superseded 14/12/2008

DSS specific attributes +

DSS specific information:

It is recognised that two or more people may equally share the caring role (e.g. mother and father) however, for the purposes of this collection, characteristics are only requested for one of these carers.

It is also recognised that the roles of parent and carer, particularly in the case of children, are difficult to distinguish. Parents of children should generally be recorded as a carer if they provide more care to their child than would be typical of the care provided to a child of the same age without a disability.


Commonwealth State/Territory Disability Agreement NMDS (July 2008)Community Services (retired), Superseded 11/11/2009

DSS specific attributes +

DSS specific information:

It is recognised that two or more people may equally share the caring role (e.g. mother and father) however, for the purposes of this collection, characteristics are only requested for one of these carers.

It is also recognised that the roles of parent and carer, particularly in the case of children, are difficult to distinguish. Parents of children should generally be recorded as a carer if they provide more care to their child than would be typical of the care provided to a child of the same age without a disability.


Disability Services NMDS 2009-10Community Services (retired), Superseded 15/12/2011

DSS specific attributes +

Implementation start date: 01/07/2009

DSS specific information:

It is recognised that two or more people may equally share the caring role (e.g. mother and father) however, for the purposes of this collection, characteristics are only requested for one of these carers.

It is also recognised that the roles of parent and carer, particularly in the case of children, are difficult to distinguish. Parents of children should generally be recorded as a carer if they provide more care to their child than would be typical of the care provided to a child of the same age without a disability.


Disability Services NMDS 2010-11Community Services (retired), Superseded 15/12/2011

DSS specific attributes +

Implementation start date: 01/07/2010

DSS specific information:

It is recognised that two or more people may equally share the caring role (e.g. mother and father) however, for the purposes of this collection, characteristics are only requested for one of these carers.

It is also recognised that the roles of parent and carer, particularly in the case of children, are difficult to distinguish. Parents of children should generally be recorded as a carer if they provide more care to their child than would be typical of the care provided to a child of the same age without a disability.


Disability Services NMDS 2011-12Community Services (retired), Superseded 13/03/2013

DSS specific attributes +

Implementation start date: 01/07/2011

DSS specific information:

It is recognised that two or more people may equally share the caring role (e.g. mother and father) however, for the purposes of this collection, characteristics are only requested for one of these carers.

It is also recognised that the roles of parent and carer, particularly in the case of children, are difficult to distinguish. Parents of children should generally be recorded as a carer if they provide more care to their child than would be typical of the care provided to a child of the same age without a disability.


Disability Services NMDS 2012-14Community Services (retired), Standard 13/03/2013

DSS specific attributes +

Implementation start date: 01/07/2012

Implementation end date: 30/06/2014

DSS specific information:

In the DS NMDS this data item refers to whether someone, such as a family member, friend or neighbour, has been identified as providing regular and sustained care and assistance to the person requiring support.

Informal carers include those people who receive a pension or benefit for their caring role but do not include paid or volunteer carers organised by formal services. This includes a host family or foster care situation where the family is paid to care for a service user.

A carer is someone who provides a significant amount of care and/or assistance to the person on a regular and sustained basis. ‘Regular’ and ‘sustained’ in this instance means that care or assistance has to be ongoing, or likely to be ongoing for at least 6 months.

Excluded from the definition of carers are paid workers or volunteers organised by formal services (including paid staff in funded group homes).

It is recognised that two or more people may equally share the caring role (e.g. mother and father) however, for the purposes of this collection, characteristics are only requested for one of these carers.

It is also recognised that the roles of parent and carer, particularly in the case of children, are difficult to distinguish. Carers of children may consider they are a carer (as well as a parent) if they provide more care to their child than would be typical of the care provided to a child of the same age without a disability.

This data item is purely descriptive of a service user’s circumstances. It is not intended to reflect whether the carer is considered by the funded agency capable of undertaking the caring role.

In line with this, the expressed views of the service user and/or their carer should be used as the basis of determining whether the service user is recorded as having a carer or not.

When asking a service user about the availability of a carer, it is important to recognise that a carer does not always live with the person for whom they care. That is, a person providing significant care and assistance to the person may not live with the person in order to be called a carer.


Disability Services NMDS 2014-15Community Services (retired), Incomplete 23/04/2014
Disability, Superseded 29/02/2016

DSS specific attributes +

Implementation start date: 01/07/2014

Implementation end date: 30/06/2015

DSS specific information:

In the Disability Services Minimum Data Set (DS NMDS), this data item refers to whether someone, such as a family member, friend or neighbour, has been identified as providing regular and sustained care and assistance to the person requiring support.

Informal carers include those people who receive a pension or benefit for their caring role but do not include paid or volunteer carers organised by formal services. This includes a host family or foster care situation where the family is paid to care for a service user.

A carer is someone who provides a significant amount of care and/or assistance to the person on a regular and sustained basis. ‘Regular’ and ‘sustained’ in this instance means that care or assistance has to be ongoing, or likely to be ongoing for at least 6 months.

Excluded from the definition of carers are paid workers or volunteers organised by formal services (including paid staff in funded group homes).

It is recognised that two or more people may equally share the caring role (e.g. mother and father) however, for the purposes of this collection, characteristics are only requested for one of these carers.

It is also recognised that the roles of parent and carer, particularly in the case of children, are difficult to distinguish. Carers of children may consider they are a carer (as well as a parent) if they provide more care to their child than would be typical of the care provided to a child of the same age without a disability.

This data item is purely descriptive of a service user’s circumstances. It is not intended to reflect whether the carer is considered by the funded agency capable of undertaking the caring role.

In line with this, the expressed views of the service user and/or their carer should be used as the basis of determining whether the service user is recorded as having a carer or not.

When asking a service user about the availability of a carer, it is important to recognise that a carer does not always live with the person for whom they care. That is, a person providing significant care and assistance to the person may not live with the person in order to be called a carer.


Implementation in Indicators:Help on this term
Used as Numerator

National Disability Agreement: g-Labour force participation rate for carers aged 15-64 of people with disability, 2010Community Services (retired), Superseded 15/12/2011

National Disability Agreement: h-Proportion of carers of people with disability accessing support services to assist in their caring role (h-interim), 2010Community Services (retired), Superseded 15/12/2011

National Disability Agreement: h-Proportion of carers of people with disability accessing support services to assist in their caring role (h-interim), 2011Community Services (retired), Superseded 05/03/2012

National Disability Agreement: h-Proportion of carers of people with disability accessing support services to assist in their caring role (h-interim), 2012Community Services (retired), Superseded 23/05/2013

Used as Denominator

National Disability Agreement: g-Labour force participation rate for carers aged 15-64 of people with disability, 2010Community Services (retired), Superseded 15/12/2011

National Disability Agreement: h-Proportion of carers of people with disability accessing support services to assist in their caring role (h-interim), 2010Community Services (retired), Superseded 15/12/2011

Help
Downloading

The download may take a while, please wait.

Do not refresh the screen until the download is complete.

<Title>

<body>
<footer>
  • View
  • Show less
  • Print view
  • Download
  • Word™
  • Pdf
  • Advanced Download
  • Review
  • Compare items
© Australian Institute of Health and Welfare
Version 1.0.0+20220531.2