Identifying and definitional attributes
|Metadata item type:||Data Element|
|Short name:||Informal carer existence indicator|
|Synonymous names:||Informal carer availability, Informal carer existence flag, Carer arrangements (informal)|
Whether a person has an informal carer, as represented by a code.
|Data Element Concept:||Person—informal carer existence indicator|
Value domain attributes
|Maximum character length:||1|
Collection and usage attributes
|Guide for use:|
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:|
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.
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?
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
Australian Institute of Health and Welfare
National Health Data Committee
National Community Services Data Committee
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.
|Related metadata references:|
Supersedes Person (requiring care)—carer availability status, code N
Has been superseded by Person—informal carer existence indicator, yes/no/not stated/inadequately described code N
|Implementation in Data Set Specifications:|
|Implementation in Indicators:|