Minimising collateral damage: family peer support and other strategies

Margaret S Leggatt
Med J Aust 2007; 187 (7): S61. || doi: 10.5694/j.1326-5377.2007.tb01340.x
Published online: 1 October 2007

The impact on family members of a young person developing a mental illness, such as psychosis, or a mood, personality or eating disorder, is extremely distressing. This first exposure to symptoms of mental illness is difficult for families to grasp.1,2 There is no obvious cause. Families often cope through denial (“It’s just a stage he or she is going through.”), or they experience grief and loss at the adverse changes in their son or daughter. Furthermore, mental illness in young people is often complicated by drug and alcohol misuse.3 Families feel unprepared and inept. Research indicates that some strategies used by family members that may not have been effective in controlling the patient’s symptoms lead to further distress. Self-sacrifice (“giving up my life to care for my child”) is an example.4 Intrafamilial conflicts develop as the family struggles to comprehend the strange behaviour in their offspring. Family members may give up social contacts and employment, resulting in isolation and financial strain.

Most young people with mental illness live with family members, who become the primary carers — an unremitting task if the illness results in disability and social dislocation. Interviews with family carers soon after admission of their child to an early-intervention service found that over two-thirds (77.7%) suffered psychiatric levels of anxiety and depression.5

Yet, in spite of these research findings, and the experience of many mental health workers, not to mention the expressions of distress from families themselves, the needs of family members are still largely ignored.

Families and young people are often reluctant to seek out or accept “psychiatric” help. They do not know what to expect. Access to services sensitive to young people and their families can be a complicated, lengthy and frustrating process.6 Doctors have difficulty accommodating the needs of family carers for a variety of reasons. These include issues of patient confidentiality, and the time restraints that prevent the longer consultations needed for giving family carers information and training in how to manage the complexities of mental illness behaviour.

Family carers who remain uninvolved in the treatment and care of their son or daughter, and who are emotionally unsupported during these initial phases, can develop poor coping techniques, making optimal management of complex situations difficult to achieve.

What do family carers say they need?

ORYGEN Youth Health, a clinical mental health service for young people aged 15–24 and their families, services a catchment area of about one million people in the north-west regions of Melbourne. ORYGEN clinical services comprise: the Early Psychosis Prevention and Intervention Centre (EPPIC), which provides treatment for young people experiencing a first episode of psychosis, and Youthscope, which provides treatment for a range of non-psychotic mental health disorders.

In May 2001, parents, grandparents and siblings of clients at ORYGEN Youth Health attended a focus group to explore the needs of family carers. The main issues for families, regardless of the psychiatric diagnosis, were:

The recommendation from the focus group that families should be supported and can learn coping strategies from each other, became the basis for the “Families Helping Families” project at ORYGEN.

Families Helping Families

Contact with families is often minimal after the initial clinical assessment. This may relate to the perceived need to preserve patient confidentiality. Moreover, heavy caseloads make it difficult to find the time to help families, and there may be a lack of confidence in knowing just how to help families. Family peer-support “workers” employed in a clinical service would be able to overcome some of these problems.

A program for training peer-support workers was developed at ORYGEN Youth Health. The training consists of seven 90-minute sessions:

  1. Learning ways to use their “lived experiences” to help other families.
  2. Telephone or face-to-face support, using interpreters to facilitate communication for families with cultural differences.
  3. Guidelines for the management of emotional distress.
  4. Guidelines for the management of illness behaviour.
  5. Informing families about mental health services.
  6. Understanding “boundary issues” — how to work with clinical staff.
  7. Running a family support group.

The Families Helping Families project has three components:

Our service believes in including family carers as part of the treatment and care team. Many families are diffident and difficult to engage.7 Family peer-support workers play an important role in helping families engage with the service.

These phone calls are made without having to ask the patient’s consent. Family carers need support in their own right and are entitled to receive all the help they need.

There are exceptions; the family may be unaware that their son or daughter has been admitted. If there are valid reasons for not wanting the family to be involved, or the family has a history of extreme difficulties (eg, intrafamilial sexual abuse), case managers will request that the family not be contacted until further notice.

Young people need to be reassured that family peer-support workers receive no information about them, and therefore cannot breach confidentiality.


Through the Families Helping Families program, families gain useful information and support from other families experiencing similar situations. If it becomes apparent that the problems of mental illness are ongoing, doctors can refer families to support organisations. The SANE Australia Helpline (1800 18 SANE (7263)) and the SANE website ( provide information about family support groups and organisations. SANE also has a wide range of publications on many topics which family members find useful.

Difficulties for doctors arise if young people are adamant that family members are not to be contacted, but most young people if asked, particularly when acute symptoms of mental illness have subsided, are willing to have their family involved (Box 1).

Doctors may be approached by anxious family members when their son or daughter refuses their request to seek medical assistance. It is not helpful to the family to be just told to “bring him or her in”. If they could, they would. And it is impossible for doctors to give treatment without actually seeing the young person. Box 2 gives suggestions for dealing with this problem, as well as the best ways for parents to describe the behavioural changes of incipient mental illness.

Collaboration with clinicians in treatment and care in the early stages of mental illness, supported by the experiential sharing and emotional support gained from family peer-support workers, develops the personal and social resources that families need to enhance their caring role.

In turn, many families who feel valued and empowered by professional services have the incentive to improve mental health care by raising community awareness — through speaking in schools, churches, clubs, other organisations, and through targeted political advocacy.

Families need to be heard and supported at an early stage, so that much of the unnecessary trauma experienced by young people with mental illnesses and their families can be alleviated.

2 Engaging with family members

When a young person is reluctant to seek help for mental illness

Helping family members describe behavioural change

Psychiatric disorders and drugs and alcohol

  • Margaret S Leggatt

  • Family Participation Project, ORYGEN Youth Health, Melbourne, VIC.


Competing interests:

Salaries of the carer consultants were augmented with a grant from the Donkey Wheel Foundation, and Aitken, Walker & Strachan, Solicitors.

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  • 2. Addington J, Coldham EL, Jones B, et al. The first episode of psychosis: the experience of relatives. Acta Psychiatr Scand 2003; 108: 285-289.
  • 3. Ryglewicz H. Psychoeducation for clients and families: a way in, out and through, in working with people with dual disorders. Psychosoc Rehabil J 1991; 15: 79-89.
  • 4. McNab C, Haslam N, Burnett P. Expressed emotion, attributions, utility beliefs, and distress in parents of young people with first episode psychosis. Psychiatry Res 2007; 151: 97-106.
  • 5. Scottish Schizophrenia Research Group. The Scottish First Episode Schizophrenia Study IV. Psychiatric and social impact on relatives. Br J Psychiatry 1987; 150: 340-344.
  • 6. Etheridge K, Yarrow L. Pathways to care in first episode psychosis. J Psychiatr Ment Health Nurs 2004; 11: 125-128.
  • 7. James C, Cushway D, Fadden G. What works in engagement of families in behavioural family therapy? A positive model from the therapist perspective. J Mental Health 2006; 15: 355-368. DOI: 10.1080/09638230600700805
  • 8. Clark K, North A. Legality of disclosure by Victorian psychiatrists of patient information to carers. Psychiatry Psychol Law 2007; 14: 147-167.


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