Carers identified?

3.4 Continued impediments to identification

Page last updated: 2010

The literature acknowledges the importance of carers as partners in the delivery of services to people with a mental illness and primarily focuses on impediments to inclusion. These continue to include:

  • Use of the term carer (3.4.1)
  • Privacy and confidentiality (3.4.2)
  • Lack of training in a carer oriented approach to clinical practice (3.4.3)
  • Organisational structures and cultures that impede 'carer friendly' practice (3.4.4).

3.4.1 Use of the term carer

Becoming a carer is usually not based on a conscious decision of the carer but on an event in the life of someone else. Sometimes the onset of caring is very sudden, for instance when one's partner, child or parent is involved in an accident and is seriously injured. In other cases, especially with the development of mental illness, it may be a slower process, particularly in situations complicated by substance abuse where diagnosis can take some time. Here the carer begins by giving slight assistance but may end up with a heavy care load. For most people caring is a matter of course.

Carers do not tend to think of themselves as carers but rather as the mother of a person with a mental illness or the child of a parent with a mental illness who has never known any other situation. They are often referred to as 'hidden carers' and are not identified by schools or health services. That makes it difficult to reach them and to provide them with the recognition and support they need. This situation is compounded when the carers are children.

In undertaking both this and our previous Identifying the Carer Project in 2007 the practical difficulties that can arise when using the term 'carer' were highlighted. The term carer was seen as controversial. It was reported that some carers disliked it because it implied they did not 'care' before the person they support became unwell or because it unhelpfully professionalised the relationships. Others did not recognize that the 'regular and substantial' support they provided entitled them to specific 'carer's rights' such as carer assessments. Others queried as to when their role of a mother, father, wife, husband, partner, neighbour or friend ended and the role of 'carer' began? Equally, it was noted, there are consumers who do not recognise their carers as such and who do not want them involved with their mental health care. Top of page

This position was reported as far back as 1997 in the Pfizer Journal, Perspectives on Health care and Biomedical Research which was devoted to care-giving in America. This document describes how carers define themselves differently depending on their relationship to the consumer. The adult child will come to see himself as a carer before a spouse does, because the spouse will see their role as a good husband or wife, and the parent will see the role as that of a good parent. The carer designation often does not come in until a crisis changes the situation. It clicks in at different times for people in different relationships.

The Journal goes on to state, "Carers do not self–identify or seek out carer organizations because the word is not well recognized."

Identification is a major issue for young carers. If young carers do not identify – or are not identified by others as carers – they and the person for whom they are caring, can miss out on the support that may be available.

The 2009 Carers Australia Budget Submission states:

In most countries community awareness of young carers is very limited, even among those in the health, education and social service professions who have most regular contact with the families of young carers. The idea that young people, even children under age 10, are undertaking caring responsibilities goes against general societal norms where children should themselves be looked after, rather than looking after someone. As a result those administering adult services often fail to recognise that a young person is taking an active caring role in the family, often excluding them from discussion about patient treatment or services for the family and, as a result, their particular needs are ignored...

...Young carers have also reported that they are often not recognised as carers 'by adults in authority'. Increasing identification of young carers requires legislative frameworks of equity and fairness with developed welfare support, community awareness and respect. It also requires clear pathways of referral to supporting organisations for those most likely to be in contact with families. Top of page

Use of the term 'carer is also a problem for Indigenous communities. Carers Australia convened a roundtable with Indigenous elders and Indigenous support workers. The report of these discussions indicated that identification of carers is difficult because:

  • Indigenous carers are more likely to be women and less likely to see themselves as 'carers' because caring 'for their own' is what they do;
  • an individual carer is likely to be caring for several people across generations; and
  • often people with a disability or mental illness have low status in Indigenous communities, and consequently carers also have a low status
Other issues that impact on identification of Indigenous carers are:
  • the cultural background of Indigenous carers , including their kinship relationships; and
  • lack of cultural awareness and competent practices of many mainstream services, which means in urban centres Indigenous people are unlikely to access the service.
However there are few services and supports in communities to call on, especially in regional and remote centres. This makes identification even more important as it is likely to result in significant increases in carer burden.

The Social Policy Research Centre at the University of New South Wales has been commissioned to determine what information is known about Indigenous carers and what further information is needed. It is hoped that this study will also examine mechanisms for identification. Top of page

3.4.2 Confidentiality

The issue of confidentiality is frequently cited as an impediment by Australian clinicians as a reason for not sharing information. If this position is adopted it negates the need to identify people with whom one might have concerns about sharing information.

It appears that the protection and use of information in general, and specifically in relation to carers, is deeply embedded in ethics and professional codes, policy and law, values and professional practice.

Health professionals believe in the right of an individual's privacy in relation to his or her psychiatric condition, and are trained in 'patient confidentiality' rather than information sharing (Leggatt, 2001). They are concerned to keep the trust of the patient (British Medical Association, 1999) and fear being sued (Montgomery, 1997; Leggatt, 2001), although litigation is rare (Department of Health, 2001). Yet rights to confidentiality are not absolute, may be breached in cases of societal and public interest (W v Edgell, 1990), and need to reflect social responsibilities (Etzoni, 1999). Backlar (2001) contends that although in Western societies confidentiality in healthcare is implied and broadly assumed, providers should be clear about what information can be divulged to families and under what circumstances the patient has privacy rights. Furlong and Leggatt (1996) suggest a conceptual framework is needed to balance the rights and interests of patients with the needs and responsibilities of carers. Confidentiality is seen as a particularly taxing ethical issue when the family's involvement appears justified but the service user is withholding consent (Szmukler and Bloch, 1997).

Mental health service consumers face particular restrictions on their private lives. The right to privacy is essential in the interests of maintaining self–respect and enabling human interaction without constant social breakdown (Nagel, 1998 cited in Backlar, 2001). Top of page

Patient privacy and autonomy are frequently espoused as vital components of mental health recovery. However, privacy and autonomy principles are subject to restrictions when there are:

  • Doubts about an individual's capacity to make rational judgements;
  • Public and personal safety considerations;
  • Treatment criteria of mental health legislation (where a person is detained on an involuntary basis); and
  • Groups of people with severe mental illness who could not survive without significant assistance from others.
The carer's need for information to support the caring role further threatens consumer autonomy and privacy. Firstly, the consumer may have no choice about the identity of the carer, or the right to refuse to have one. The position is further complicated by the following.
  • Disaffected and abusive relationships.
  • Connotations of overprotection associated with the term carer, that conflict with the ethos of independence fostered by community care.
  • Potential vested interests exist in close relationships (Brazier,1992).
Beauchamp and Childress (1994) observe that professional organisations impose obligations to ensure the trustworthiness of their members. However, traditionally, professional codes have been generated without scrutiny or acceptance by patients and the public (Beauchamp and Childress, 1994). Many are now being revised with stakeholder assistance (namely consumers, carers and mental health professionals). As a result, professionals with entrenched attitudes could be seen to be breaching the new guidance of their own professional bodies. Top of page

The Australian Law Reform Commission undertook a review of privacy law in 2008 and recognized that disclosure of information to 'a person responsible for an individual' can occur within privacy law. The need for legislative reform in this area was also recognized by the 2009 House of Representatives Inquiry into Better Support for Carers. Recommendation 14 of that report called for investigation of whether privacy and mental health legislation 'adequately allows carers to be involved in the treatment of the individuals for whom they care'.

In theory, clinicians now run the risk of carer litigation where harm to carers (Zinn, 2003) or depriving carers of information to enable them to exercise their role (S v City, 2002) can be shown as a result of failures to communicate appropriately.

SANE Research investigating the effects of caring for someone with a mental illness, 2007 produced the SANE Guide for Families, the essential resource for families, friends and other carers of people with a mental illness. The Guide explains how everyone in a family can be affected, the services available, and the skills needed to help support their relative's recovery.

The Guide does not address the issue of identification per se, however, drew attention to the need for this and the role that 'confidentiality' plays in excluding carers from services. The report states:

"Many health professionals still exclude family carers from treatment planning, and withhold information, inappropriately citing confidentiality. This is despite changes to legislation and new policies on inclusion of carers. Health professionals need training and supervision to ensure these attitudes to family carers are improved."

Diane Froggat, in examining issues of confidentiality and privacy in Families as Partners in Mental Health Care states: Top of page

The difficulty arises when those who are caring for a severely ill person are told by the clinician that he or she cannot discuss the patient. In most cases carers are not looking for personal details of the clinical relationship, but only for information that will help them carry out their responsibilities as caregivers. This is not privileged information unless the patient has specifically asked the clinician not to talk to his/her relatives about anything, a circumstance that is very rare in the families who bring their relative to treatment.

The concept of confidentiality is often a concern to clinicians training in mental health. One effective way of raising the profile of the needs of carers that has been reported, has been to involve carers directly in the teaching and training process to 'tell their story' of their own experience. Carers are usually very willing to do this and clinicians repeatedly report this has major impact on how they go on to engage families following the training in family interventions. One main component of the model is information sharing between the consumer and the family members.

This often takes the form of the consumer describing to the other family members their experience of being unwell. During this process, information about the service and the particular difficulty the consumer identifies is discussed. With this approach both the consumer and the carer have control over what information is divulged. However, the evidence base for this work maintains that, by encouraging greater effective communication between people who significantly influence each other, outcomes for both parties are dramatic. Service satisfaction through a positive experience is well known to enhance future relationships between consumers, carers and clinicians.

The development of a specific carer standard in the revised National Standards for Mental Health, 2010, that requires services to actively engage with carers highlights the urgency of finding mechanisms to address this situation. Top of page

3.4.3 Lack of training in a carer oriented approach to clinical practice

Public mental health services in Australia are generally delivered by teams of people from different disciplines subject to different professional codes. The literature acknowledges that little examination or discussion has occurred regarding these differences. Given the critical impact of the carer and consumer relationship, professional skill in managing the interface is of utmost importance, particularly in situations where consent for involvement is an issue.

This stance is supported by Experts by Experience (EbE), a group of service users and carers who advise National Institute for Mental Health in England on their concerns. An unpublished discussion paper (2003) noted:

...Handling tensions between users and carers should be regarded as a core skill for mental health professionals and included in all qualifying training programmes and continuing professional development.

Staff training remains primarily individually focused however the evidence in the mental health area for adopting a partnership approach to care that is inclusive of the consumer and their carers is overwhelming. Changing training and practice to a partnership approach is not a simple matter. Legislation and standards now mandate behaviour that clinicians are not adequately trained to provide at this point in time.

Changing training programs is a protracted activity and whilst it will have benefits in the long term, the literature indicates that strategies are required to facilitate change in current clinical practice to be more carer and family focussed.

Recent literature from centres that have incorporated 'Family Interventions' (the name given to programs that utilise the methods used in the research), now document the barriers to implementation and how they are attempting to meet these challenges. Top of page

While some patients and families reject this intensive form of help, most welcome it. The major challenges to be tackled for new models of evidence–based mental health service delivery to be implemented, relate to the training of the workforce and changing the organizational culture to accommodate a radically different way of working.

Carers Australia in their submission to the Senate Inquiry into Mental Health, (2007) highlight the fact that a major plank in the successful implementation of any carer participation policy is the planned and coordinated education of mental health professionals and service providers driven by governments and professional bodies.

They clearly state that the present level of education provided in some states and territories through staff orientation, in–service seminars, targeted workforce training, psychiatric trainee education and general practitioner education under the Better Outcomes in Mental Health program is inadequate to achieve and sustain culture change regarding carers. They were optimistic however, that with the funding now available through the COAG National Action Plan on Mental health (2006–2011) across national and state and territory levels this may now improve. Also, DoHA and the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) are funding local and community programs through the COAG national action plan.

Workforce training for professionals who deliver mental health care need to address a number of key barriers carers encounter. Formal protocols for identification are considered key in overcoming these barriers.

Carers Australia acknowledge that general practitioners, mental health professionals in public and private sectors, and other key primary and acute health care providers need skills, knowledge and the right attitude to build partnerships with carers. This will require an ongoing education strategy through undergraduate, postgraduate and continuing education programs targeted to professionals delivering specific programs or employed in public and private mental health systems. Top of page

There are now excellent and effective training programmes that have been developed in the UK and America, where mental health clinicians – psychiatric nurses, psychologists, occupational therapists, social workers, a few psychiatrists and family carers – have been trained in the methods developed from the research studies. These programs have also been tried in Australia but have been largely unsupported, and have not developed to any great extent.

Set out below, are two models of working with families that have developed from the evidence–base reported in the literature and for which training manuals ('Family Work Manual' – Falloon et al, 2006 and 'The Management of Major Mental Illness with Families in Group Interaction' – Lambert and Leggatt, 1999) are now available.

  • Behavioural Family therapy. This model has been adapted and is being implemented as 'Building Family Skills Together,' in conjunction with North West Area Mental Health Service, the Centre for Psycho–Social Research and the Bouverie Centre. All of these services are located In Victoria.

  • Multiple Family Groups. A research project was implemented through the Inner West Area Mental health Service in Victoria, and the results of this work have been published (Bradley G et al, 2006). Multiple family groups have been commenced in two other Victorian Mental Health Services. Top of page

3.4.4 Organisational change necessary to accommodate new ways of working

Margaret Leggatt in her article, New thinking and acting for turbulent and challenging times, 2010, sees organizational change as probably the greatest challenge to identification and engagement with family members and other carers.

In brief, the major barriers that have to be overcome are:
  • changing outdated clinical attitudes to families as the cause of mental illness
  • implementing better methods of case–load management
  • finding resources, both in terms of funding but significantly more important has been the need to gain the support of management. Once this occurs, funding seems to become available.
  • finding 'culture change carriers' who will advocate and push for innovation
  • making time available to implement the change process
  • finding ways to ensure sustainability; this has happened primarily through ongoing clinical supervision to build and maintain confidence and expertise.
Leggatt goes on to say that there is now substantial literature from clinical researchers in other countries where family work has been implemented, who have confronted and overcome the barriers to this implementation (Brooker C, 2001; Drake et al, 2001; Fadden G, 2006; Grol and Wensing, 2004).

One method for overcoming these barriers is to undertake a 'Barrier Analysis' as described by Leggatt in the chapter Meeting the Challenges in Families as Partners in Mental Health Care.

A 'barrier analysis' enables major individuals and groups that are critically important in making changes within an organization to be identified. This type of analysis can be undertaken by groups comprising clinicians, consumers and carers. Top of page

When the National Institute of Clinical Studies (NICS) used this process in Australia they identified the following individuals and groups as most important to making change succeed:

  • Area managers;
  • Directors on clinical services;
  • Team leaders/program managers;
  • Frontline clinicians (interdisciplinary case managers);
  • Doctors; and
  • "Known obstructors".
It is clearly very critical that known obstructors are identified and involved if change is to occur. Focus groups with frontline clinical staff were also seen as an important tool in addressing the barriers to implementing changes in clinical practice towards a partnership model of care.

Leggatt also notes the importance of involving experts in family interventions when making changes in clinical practice. Dr Grainne Fadden, in a workshop in Melbourne in 2005 emphasized the following key principles to ensure change occurs:

  • Evolving family work into routine clinical practice is a practice that takes time and perseverance.
  • Central funding is needed to get family work started – not necessarily to have it in the longer term.
  • Model of intervention should be relatively simple and part of the workload of all clinicians.
  • Ongoing supervision of clinicians after training is vital.
  • Uptake of the intervention by clinicians will be minimal at first (working in depth with only one or two families if working with a single family model, or one group if a "multi–family group" model is adopted.Top of page
The literature reports that consumers, family or carers and clinicians working together collaboratively, provide an excellent opportunity for incentive–based learning. Staff start to find that they are 'thanked' by families, rather than having to cope with families that are angry, frustrated, and therefore seen as difficult and 'dysfunctional.' Less staff burn–out, less absenteeism, and fewer resignations have also been reported. Including the family and other carers is much more satisfying in that they are now 'allies', and not 'enemies.' Clinicians also find that issues such as confidentiality disappear when carers become part of the treatment and care team. Cost effectiveness of these interventions has been reported in several cases, including in Australia (Mihalopoulos, 2004).

Family Interventions are a proven way of helping families stay together. Rather than focussing treatment solely on the consumer, new ways of thinking and acting must incorporate the consumer's social network, most particularly his or her family and friends. This is undoubtedly in the consumer's best interests for optimum recovery.

Diane Froggatt in her introduction to Families as Partners in mental health Care, A Guidebook for Implementing Family Work (2007), provided the following quote:

Asked about what single change would substantially improve quality of psychiatric care, Professor Julian Leff replied: "Listening to and implementing what patients and their carers want." In answer to what single area of psychiatric practice was most in need of development, he replied: "Including the family in any consideration of the patient's problems, needs and strengths"