3.3: Including the Carer
The current situation
"I need to know what you are trying to achieve for my son and how you are planning to do it. I need to understand the treatment that he is receiving so that I can play my part in his recovery programme. What I do not need to know are the personal details of what takes place between him and the professionals concerned."(1)
(Quote from a member of Rethink whose son has a serious mental illness)
The Consumer and Carer survey and Consumer and Carer focus groups suggested that psychiatrists generally did not involve the carer in patient consultations. While 42% of carers reported that they had been involved in some decision-making tasks, only 25% of carers have been involved in the development of a self-management care plan in collaboration with the psychiatrist and the patient.
Studies show that health care professionals perceive carers as a hindrance to the recovery process of patients and therefore exclude their involvement, often using privacy and confidentiality as a reason.(2) The literature identifies that, generally, carers are expected to support the patient with very little education and support themselves.(2)
The family as an asset (3)
Cultural differences
In some cultures the family is an integral part of the health and treatment process of the patient. This is the case for Māori patients where the family plays the central role in daily life including illness. An essential element of care is the inclusion of the whole family/whānau. Family members need to be present for health assessments to avoid miscommunication within the family and for a clear understanding of the needs of the patient to deal with their chronic condition.(4) It should be remembered that while the importance of the family should not be underestimated for Māori patients and other cultural groups, all people with chronic conditions rely extensively on family and friends for practical support and well-being.
Why involve the carer?
|
Advantages of involving the carer |
Disadvantages of not involving the carer |
|
Significant support structure to patients |
Lack of information for service planning and provision |
|
Contribute valuable knowledge and experience |
Potential mental illness to carer with implications of less support to the patient |
|
Recognise signs and symptoms of a relapse |
High levels of distress for carers when they are ignored |
|
Can manage/support the patient with medication regimes, community involvement, social relationships |
If not informed and educated, families can unwittingly be a hindrance to recovery |
|
Can be an invaluable support to the clinician |
The clinician usually only knows the patient when unwell and not the idiosyncrasies of the person |
|
Family knows the patient as a person and when the patient is well, has tremendously valuable information |
Clinicians usually have only a limited time to spend with the person and that may be perhaps once or twice a month, so it is important to make the most of each consultation |
|
The family may be the only constant in the patient’s life |
Not to include the carer is to ignore the most valuable resource available to the clinicians involved |
|
The family’s only vested interest is for their loved one to recover and keep well |
|
Key issues for mental health carers
The first ever national survey of mental health carers in Australia was completed in 2009 by the Mental Health Council of Australia and the findings were documented in Adversity to Advocacy: the Lives and Hopes of Mental Health Carers.(5) The report highlights fifteen key issues affecting Australia’s mental health carers. For the report card click here http://www.mhca.org.au/documents/CEP%20report%20cardLR.pdf and for the full report visit the following link. http://www.mhca.org.au/documents/publications/MHCA%20CEP%20webLR.pdf
Key issues from this report relevant to chronic condition self-management are summarised in the table below.
|
Key issues identified by mental health carers in the survey |
How the issue is currently being addressed |
What the survey tells us about the real experience of mental health carers |
|
Issue 1 Listen to and respect carers (and their perspective)
|
The need to increase respect for carers (part of the new House of Representatives Inquiry announced on 1 May 2009). This has been a consistent theme in both national and state mental health strategies for more than a decade.
|
The common view among carers is that they are neither listened to nor respected. The rhetoric of including carers as part of the care ‘team’ for the consumer is not borne out in reality. Often this leaves carers trapped, excluded, feeling unable to provide adequate care, but also unable to find the services needed for the person they are caring for. |
|
Issue 4 Knowledge and information for carers
|
The workshops to inform this survey were initiated by FaHCSIA* partially out of concern to provide more information to mental health carers about available programs and services. Increasing mental health literacy has been identified as an important target in the National Health and Hospitals Reform Commission recommendations, and is implied in most Australian mental health strategies. * Australian Government Department of Families, Housing, Community Services and Indigenous Affairs |
One of the most debilitating aspects of being a mental health carer is the sense of isolation and helplessness. Knowledge of services such as Commonwealth Carelink is minimal at best. Carelink’s understanding of mental health also varies greatly from office to office. Knowledge of peer support options also seems very patchy, with many carers meeting for the first time at the local workshops. Carers reported that the knowledge of how to care for someone with a mental illness was rarely available at first onset of illness. |
|
Issue 6 Support systems, services and processes established for carers
|
This is a recommendation made by the National Health and Hospitals Reform Commission, and echoes the sentiment in previous national mental health plans about engaging more directly with carers.
|
The need for more carer-led support programs for carers was raised in many workshops. The infrastructure to support carers is generally very weak, with some exceptions. Overall, mental health carer organisations are very poorly resourced. Health services have also generally failed to invest in robust systems to enable engagement with the carer sector. Carers often use their own resources and pay their own way in order to participate in policy and service development activities. |
Reflective exercise
Reflect on your own practice of including carers as part of a collaborative process and record your thoughts under the headings:
References
- Carers and confidentiality in mental health issues involved in information sharing. Royal College of Psychiatrists. August 2004.
- Harvey C, Ning L, Callander R, Leggatt M, Stephens J, Gooding P, Woodhouse S. Privacy and confidentiality issues paper. National Mental Health Consumer and Carer Forum. September 2009.
- Clinicians, Carers and Confidentiality DVD. Reach Out Southern Mental Health.
- National Advisory Committee on Health and Disability. Meeting the needs of people with chronic conditions. Wellington, New Zealand, 2007.
- Adversity to Advocacy: The Lives and Hopes of Mental Health Carers. Mental Health Council of Australia, 2009. Available from http://www.mhca.org.au/
