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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

This data element should be recorded at the beginning of each HACC service episode. The agency should also assess the currency of this information at subsequent assessments/re-assessments within any given HACC service episode and should update the agency’s record of the client’s Informal carer availability if necessary.

Reporting requirements:

Agencies are required to report the most recent Informal carer availability that the agency has recorded for the client.

Information provided by the agency about the person’s Informal carer availability will be considered to be at least as up to date as the Date of last update reported for the person. This is in line with the request that agencies assess and update the information they have about the client’s Informal carer availability at the beginning of each HACC service episode as well as at subsequent assessments/re-assessments within any given HACC service episode.

If the agency’s system or records do not provide sufficient information to accurately report on this data element, the agency should use code 9 Not stated/inadequately described.

The data element Informal carer availability, uses the same categories as the NCSDD V3, 2005.

The National Health Data Dictionary (NHDD) includes a data element named Carer Availability which is used within the Community Nursing Minimum Data Set (CNMDSA). However, there are significant differences in the CNMDSA data element and the HACC MDS data element of the same name. These differences relate to differences in the information needed (and considered appropriate for collection) by community nurses and that needed (and considered appropriate for collection) by the broader range of HACC-funded agencies. There are also differences in the scope of information collected through this data element in both data sets. The HACC MDS includes a separate data element Carer residency status which provides information about whether the person identified as the main or primary Carer lives with the person with whom they care or not. This information is included within the classification used by the CNMDSA Carer Availability data element.

The CNMDSA data element is also intended to relate more directly to the agency’s assessment process. As such, it relies on the service provider’s assessment as to whether a client is in need of a Carer, and the service provider’s assessment as to whether a ‘potential’ Carer is capable or willing to undertake the caring role. While this may be appropriate to a community nursing context, it is considered inappropriate to apply these same assumptions and expectations to the broader HACC field.

Future developments in the HACC MDS and the CNMDSA may need to see the data elements converge more; or may require a much clearer distinction between the two given their distinct and largely incompatible intentions (i.e. client reported availability versus a service provider assessment of availability, need and adequacy).

The resolution of these inconsistencies will be a priority for future developments of the HACC MDS and the CNMDSA. The resolution of such inconsistencies is particularly important as the HACC program is a major source of funding for many community nursing agencies and these agencies are required to report on the data elements included in the HACC MDS.