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Person—informal carer existence indicator, yes/no/not stated/inadequately described 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 term621393
Registration status:Help on this termHealth, Standard 17/10/2018
Disability, Standard 29/02/2016
Definition:Help on this term

An indicator of whether a person has an informal carer, as represented by a code.

Data Element Concept:Person—informal carer existence indicator

Value domain attributes

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
Supplementary values:Help on this term
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 (HACC) MDS

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

Disability Services 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 carer or primary carer used in the Survey of Disability, Ageing and Carers (SDAC). 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. In SDAC, a carer is defined as a person of any age who provides any informal assistance, in terms of help or supervision, to an older person or someone who has a disability or a long-term health condition. This assistance has been, or is likely to be, ongoing for at least six months. A primary carer is someone aged 15 years and over who provides the most informal assistance to a person with disability with one or more of the core activities of mobility, self-care and communication. These definitions 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

Submitting organisation:Help on this term

Australian Institute of Health and Welfare

Relational attributes

Related metadata references:Help on this term

Supersedes Person—informal carer existence indicator, code N Health, Superseded 17/10/2018, Disability, Superseded 29/02/2016, Community Services (retired), Standard 29/04/2006

Implementation in Data Set Specifications:Help on this term
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Dementia NBPDS Health, Candidate 15/11/2021

Disability Services NMDS 2015–16 Disability, Superseded 28/09/2016

DSS specific attributes +

Disability Services NMDS 2016–17 Disability, Superseded 15/12/2017

DSS specific attributes +

Disability Services NMDS 2017–18 Disability, Superseded 05/07/2019

DSS specific attributes +

Disability Services NMDS 2018–19 Disability, Standard 05/07/2019

DSS specific attributes +
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