Carer definition
Participants were asked the question "Is the proposed definition of carer adequate and appropriate?" This section of the policy was debated more than any other section. Many different ideas of who is a carer and concepts that should be included or deleted were presented.
As the definition is crucial in determining who is included in the Policy, the results of this area are reported in more detail than other sections. All participants' comments have been considered in the re-development of the Policy. A slim majority of participants supported the definition in the draft Policy. The results are outlined in Table Three below.
| Definition | Individuals | Organisations |
|---|---|---|
| Supported | 56 (51.4%) | 12 (54.5%) |
| Not supported | 40 (36.7%) | 5 (22.7%) |
| Did not respond | 13 (11.9%) | 5 (22.7%) |
One of the reasons that there was so much debate about this topic is that the definition attempted to capture as many caring situations as possible. The variety of carers who responded to this question examined it from their own perspective. Every care situation is unique and the variety of responses reflected this uniqueness.
For example, some people thought that the only "real" carers are those people who look after someone (usually their child) for most of their lives. Such carers called themselves "life long carers" in comparison to people who may be looking after someone at the end of their lives (for example, a frail aged person with a medical condition).
Many carers wanted the concept of a regular, continuous and on-going commitment to be included in the definition, yet people caring for someone with a mental illness indicated that the support they provide is episodic rather than regular and wanted this reflected.
Participants raised more examples of where carers may be providing intermittent rather than regular and on-going care including people who support their care recipient when living in an institution such as a nursing home, or relatives who provide regular phone contact and advocate on behalf of their relative with a disability.
Many carers believe it is not essential to live with a person to be considered a carer and wanted the support they provide to be recognised and included in the definition. This feeling was not unanimous, as other participants believed the complexity of care provided is a critical component of the definition.
Many participants responded to the description of tasks provided about the carers' role, commenting that it only reflected physical tasks and was not a comprehensive picture. They stated that the list defined what a carer does (to a limited extent), but not who a carer is.
They commented that it did not take into account the emotional and sometimes spiritual support provided and the context in which caring happens, that is, that carers care for a person, because of their relationship with and love for the person, rather than simply doing things for them. This led to some participants suggesting more caring activities be added and others suggesting they be removed to focus on the caring relationship.
Another theme that emerged was whether or not to include paid carers in the definition. (They were specifically excluded in the definition contained in the draft Policy). Participants indicated a difference between people who were employed to provide care for another person who was covered by an industrial award, and family members who may be paid for a few hours to provide specific services, and then spend many more hours assisting their relative in an unpaid capacity.
The latter situation tended to occur more within Indigenous families. The majority of participants felt very strongly that the policy should only include carers who are not paid and that people who were paid should be called by a name other than 'carer', such as 'support worker'. A small number of participants stated that workers in this field also deserve recognition.
Meetings
The range of issues raised by people attending the meetings was very similar to those raised in the written consultations, although the frequency with which an issue was raised varied. For example almost half of the discussion groups suggested that paid workers be called by a name other than 'carer'. There was a strong desire from these participants to reclaim the name 'carer', so that it applied only to unpaid carers.
Again terms such as 'support worker' were suggested as an alternative for paid workers rather than 'carer.' Alternatively, a few discussion groups (3) saw the name of 'carer' is irrelevant as they were not concerned about what they were called.
Almost half the meetings discussed the list of caring activities presented and advised that it was inadequate. They wanted it changed or expanded to include the concept of love for the person being cared for.
Focus Groups
Both the focus group for Indigenous carers and the focus group for carers from culturally and linguistically diverse backgrounds raised a similar issue, which was that people from their respective communities were not likely to identify with the word 'carer'. In addition both groups stated that the care recipient was unlikely to identify or acknowledge they were being 'cared for'.
Particularly for people from Indigenous communities, it was stated that caring is not identified or labelled as 'caring' for a particular person, but just happens as part of family life and family responsibilities. It was stated that whichever family member is available will perform whichever caring activities are required.
Last updated February 2009