The PATS peer support program: prevention/early intervention for adolescents who have a parent with mental illness.

PATS (Paying Attention to Self) is a peer support program for adolescent children of parents with a diagnosed mental illness. The program aims to promote positive mental health, reduce the likelihood of mental health difficulties, increase young people's coping skills and empower them to meet their own and their families' needs. PATS combines peer support, group work, high levels of youth participation, a wide range of ongoing activities, and opportunities to develop useful life skills with lots of fun along the way. Central to the success of PATS is the belief that programs shaped by young people, for young people, will be attractive to young people.

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We know that mental illness is widespread in the Australian community and that it impacts not only upon the individual directly affected, but also upon those close to them (Maybery et al. 2005). When a parent is affected by mental illness, there can be serious implications for the children (Beardslee, Versage & Gladstone 1998; Chang, Steiner & Ketter 2000; Lapalme, Hodgins & LaRoche 1997). For teenagers, the impact of parental mental illness comes at a formative and challenging time of life, when they are negotiating the rigours of adolescent development. The issues they face can result in disconnection from family, friends, school and their communities. Additionally, they are at higher risk for the onset of mental illness themselves (Clarke et al. 2001; Lieb et al. 2002).

PATS supports young people in this position by ensuring that they are informed about their parents' mental illness and the services and resources available to both the family and themselves. In addition, strategies for dealing with stigma, promoting positive and healthy attitudes and helping adolescents connect with school, family and friends are explored. Evidence supports the notion that a prevention or early intervention approach that targets mental health during the adolescent years is both an appropriate and efficacious response, with both short-term and life span benefits (Durlak & Wells 1997; Guo & Harstal1 2004). The Centre for Adolescent Health's experience in running programs for adolescents suggests that such programs must acknowledge the inherent strengths and resilience of young people and the wider adolescent experience to be effective.

This paper provides an overview of the issues faced by adolescents dealing with parental mental illness and describes the PATS peer support program. The quotations included in the text are extracts from the reflections of four PATS participants who have written about their experiences with PATS and coping with their situation. One of them has written in the third person.

Young people living with parental mental illness

The risk of developing mental illness

It has recently been estimated that 22% of Victorian children and adolescents (or approximately 250,000) live in homes where a parent is affected by mental illness (Maybery et al. 2005). Adolescents in this situation are at significantly increased risk of developing mental health issues themselves (Clarke et al. 2001; Lieb et al. 2002). Estimates of increased risk vary across studies. Lapalme, Hodgins & LaRoche (1997) concluded that the offspring of parents with a mental illness are four times more likely to develop a mood disorder when compared to the offspring of parents without a mental illness. Chang, Steiner & Ketter (2000) reported that half of the offspring of parents with bipolar disorder will develop psychiatric conditions themselves. Using life table estimates, Beardslee, Versage & Gladstone (1998) predicted that by the age of 20, the child of a parent with a mood disorder has a 40% chance of experiencing an episode of major depression. By the age of 25, that rises to 60%. Higher severity of parental mental illness not only indicates a greater risk for offspring, but can also result in an earlier age of onset and a more complicated course of illness.

Young people in the 'caring' role

Young people with a parent affected by mental illness may take on significant daily responsibilities in the family home, caring not only for the affected parent, but also for other family members (Hargreaves et al. 2005). Many young people in this situation can be categorised as "young primary carers", defined as "someone up to 25 years of age who is the main provider of care and support for a parent ... who has a chronic illness" (Carers Australia 2001b, p.6). In 2001, it was estimated that there were 388,800 carers under the age of 26 years in Australia, representing 17% of all carers. Of these, 18,800 were primary carers. Young carers have been a hidden and unsupported group in Australian communities. "If the basic rights and needs of young carers were met, the negative effects associated with their caring role could be significantly reduced" (Carers Australia 2001a, p.3). There is a great need to both support and empower this important group of young people.

   My mum had depression and I spent a lot of my childhood years
   taking care of my little brothers and being "mum" while trying to
   be a normal kid.

   ... her parents spilt up. Little did she know this was the day she
   was to be an adult. No-one made her, yet no-one explained anything
   to her. She was only 11 and she was doing things that not even
   20-year-olds would be doing.

Knowing what to do

Young people can be poorly equipped to respond to these challenges. Affected parents often perceive their children as too young to understand their mental illness and needs (Handley et al. 2001). Many young people find it difficult to even talk about their parent's condition. They struggle to understand and recognise the signs of illness, making it significantly more difficult for them to cope with their situation. Receiving conflicting information from uninformed sources can further compound their difficulties (Handley et al. 2001).

   Never knowing what was going on behind closed doors and only being
   told little; the yelling and screaming, things being thrown around
   when she lay in bed to sleep ... When she asked the reply was "you
   "re too young to understand what is going on".

Many young people want to help their parents and families and are in an ideal position to do so, but young people need skills and information about coping with and caring for their parent, if they are to be healthy and offer effective help to others.

Stigma

Young people in families dealing with mental illness may be confronted by fear, misunderstanding and prejudice. Many people report that the stigma associated with their illness is as distressing as the symptoms and contributes to loneliness, distress and discrimination against them (Hocking 2003). For the children of affected parents, stigma by association can result in comparable experiences and lasting negative psychological effects (Ostman & Kjellin 2002). These findings suggest that addressing stigma is as important as addressing mental illness itself.

   I also changed schools, which made it easier to make a new start. I
   don't tell anyone about my Dad, not cause I'm ashamed, but because
   they don't understand.

Effects on young people

A spectrum of needs has been identified for young people who have a parent affected by mental illness. Some individuals derive positive benefits from managing their parent's situation. Many develop resilience, resourcefulness, specialised knowledge, confidence and maturity (Kinsella, Anderson & Anderson 1996). But this is rarely the complete picture. While individuals can be resilient and appear well, they may, at the same time, be vulnerable and in need of support or protection from risk of harm (Falkov 2004). Dealing with familial mental illness can result in reduced engagement with family, peers, school and the wider social setting. Key relationships with family members, especially with the parent affected by mental illness, are often adversely affected. A study by Carers Australia (2001a) identified many negative consequences for young people who are unsupported in the carer's role. These include: socioeconomic disadvantage, isolation, low levels of health and emotional wellbeing, impaired psychosocial development, limited friendships, difficulties developing intimate relationships, low participation and achievement at school and in employment, difficulties making the transition to independence and a lack of opportunities and choices (Carers Australia 2001a).

What is PATS?

PATS was conceived by the Centre for Adolescent Health at the Royal Children's Hospital as a prevention/early intervention program for adolescents who have a parent with a diagnosed mental illness. The program targets young people 12-18 years of age and has features designed to respond to the wide range of issues they face. PATS is based on a systematic approach incorporating peer support and group work complemented by a range of ongoing activities and opportunities for wider participation and skills development (see Figure 1).

Program aims

PATS aims to reduce the likelihood of onset of mental health difficulties and to increase young people's coping skills to help them meet their own and their families' needs.

PATS provides knowledge about mental health and illness and promotes healthy relationships with peers, family, school and community. PATS also develops personal, social, communication and leadership skills through meaningful participation, not just in social activities but also through organisational roles in the program. The ultimate aim is to empower adolescent participants so that they are better able to identify, create and utilise opportunities in their wider lives. PATS also offers support for parents and other family members by providing informal counselling and referral to appropriate services. In addition, the program performs a respite role for both adolescents and their families by giving participants quality time away from their families and the space to do what young people do (Hargreaves et al. 2005).

Peer support at the CAH

PATS is based on a model of peer support (see Figure 1) that was pioneered by the Chronic Illness Peer Support Program (Olsson et al. 1998). This concept brings together young people who share common health and wellbeing concerns. Using adolescent development and youth participation principles, young people and health professionals work in partnership to generate a sense of community, belonging and acceptance (Olsson et al. 2005). The model is designed to encourage support at both the group level and between individuals through discussion, reflection, exploration, skills development and socialising. In the peer support group, participants are given the opportunity to familiarise themselves with a small group and are introduced to the program culture. A range of ongoing activities offer leadership and organisational roles and provide opportunities to participate in larger groups.

[FIGURE 1 OMITTED]

How do young people join PATS?

Entry into the program is by referral from a worker or a family member, or by self-referral. The health professional meets with each young person individually and with their family and/or worker(s), prior to the young person joining a peer support group. The interview is an important opportunity to introduce young people to the program and for them to decide if they wish to participate. Using standard interview questions and their experience of running groups, the health professional is able to assess an individual's level of development with regard to maturity and cognitive ability. This information also informs the process of assembling a group.

The peer support group program

PATS is based on an initial eight-week peer support group-work program. The peer support groups are made up of four to eight young people and facilitated by a health professional (a mental health worker, youth worker or social worker) and a peer leader (trained young person who has a parent affected by mental illness). The group meets for two hours, once a week for eight weeks. The health professional and peer leader work together with the participants to generate the content of the weekly meetings. This cooperative approach ensures that focus is maintained on strategies for addressing stigma, and on knowledge about mental health and mental illness, while also addressing individuals' particular needs and issues.

   As she learnt new things, she incorporated them in her life and
   Lyric now had a reason to smile. Her school was much more
   understanding, her father put less pressure on her ... She knew the
   places to call if she needed help or if her mother had an episode.
   Even though it was still hard, things felt like they had been
   lifted off her shoulders. Most importantly, she stopped blaming
   herself and stopped getting so upset with her mother, because she
   knew her mother's illness was not her mother's fault and that she
   was not insane.

The peer support group dynamic

PATS provides participants with the opportunity to share their personal experiences and be supported by other young people in an atmosphere of safety and security. In order to bring together a productive mix of personalities, information gathered during the individual interviews is considered. The health professional and peer leader help the young people to support each other and establish some simple ground rules that emphasise mutual respect, while maintaining a relaxed and informal atmosphere among the group. They help build connectedness between young people in the group by applying three principles--normalisation, acceptance and decreasing isolation:

* Normalisation recognises that many families are affected by mental illness and acknowledges that this can result in a range of reactions, emotions and effects, including positive effects, for the young person and the family.

* Acceptance assists the young person to come to terms with the parent's illness.

* Decreasing isolation helps the young person realise that they are not alone. In recognition of the energy and exuberance of youth, the fun factor is encouraged during all activities. This approach balances the often serious and sensitive nature of young people's issues. PATS philosophy is that if an activity is enjoyable, participants are more likely to keep turning up and joining in.

   I came to the realisation that I wasn't the only one out there and
   having someone to talk to that fully understood what I was on about
   really helped. I made some really good friends and we had a ball
   catching up each week and sharing our stories and just having a
   laugh.

Promoting mental health and knowledge about mental illness

Education about mental illness is vital for the young people who participate in PATS. This fosters better relationships within families by increasing the young person's understanding of their parent's behaviour. PATS prioritises demystifying mental illness by providing knowledge about mental illness and information about the risk factors, causes and services available. This ensures that participants are better able to help themselves and their families should issues arise (Commonwealth Department of Health and Aged Care 2000; Jorm et al. 1997).

   I went to PATS and they helped me to understand what mental illness
   is and how it affects people like my Dad.

It is important for young people to understand that mental health has both positive and negative dimensions and that mental illness is only part of the total picture (Kinsella, Anderson & Anderson 1996). Healthy thinking and positive coping strategies are consistently promoted throughout the program.

   As time goes on it gets easier. If you can focus all the energy of
   your hurt and pain into something positive it helps. Remember, you
   are never really alone; there are people out there to help ... I
   make myself go for walks and I feel better. I also write and
   draw--even if you think you can't, it's worth giving it a try.

Participation and support

PATS offers participants much more than a once-off eight-week program. A range of activities provide opportunities for participation in larger groups, leadership roles, maintaining existing friendships and creating new ones, maintaining support networks and continuing skills development. These activities typically involve high levels of youth participation, such as responsibility for planning and decision-making.

PATS social and recreational activities

Social and recreational activities are organised for participants on a regular basis throughout the year. These provide opportunities to maintain friendships, access support after the eight-week program has finished and meet young people from other groups and regions. Importantly, they provide an opportunity for young people to be actively involved in organisation and coordination roles.

Peer leaders

The role of the peer leader is crucial to the peer support group. Peer leaders are given responsibility for the social aspects of the groups, organising activities and getting the participants mingling and talking. They function as a positive role model for the group and are in an ideal position to promote the sharing of personal experiences and coping strategies. Peer leaders actively combine with the health professional to monitor and facilitate the progress of individuals in the group, throughout the eight weeks.

   She did a couple more groups, and then she did ... leadership
   training and became a peer leader for PATS. That was a totally
   different experience. She wasn't now there for herself. She was
   there to share the information that she picked up with others, to
   be a form of support and to be the stepping-stone, as her peer
   leader was to her when she did her first group.

Leadership training

Leadership training gives young people the opportunity to further develop their knowledge, skills and confidence. The training covers peer support, knowledge about mental health and illness, communication skills, group dynamics, leadership skills, public speaking and activity planning. Leadership training is a prerequisite to becoming a peer leader. Experienced peer leaders help plan and deliver the training.

Reference committee

The reference committee provides an important level of participation in the program. It is composed of the health professional and experienced PATS participants, most of whom have completed the leadership training. It functions as an overseeing and consultative body where program policies and initiatives are both generated and reviewed. The committee sets the agenda for social and recreational activities and is actively involved in the staff recruitment process. In addition, the committee is asked to contribute to the development of a wide range of youth-oriented projects and policies in the community.

Advocacy

PATS has a strong commitment to advocacy on a broader political and community level. Peer leaders and reference committee members are supported to take on the role of disseminating information and knowledge in the community. Activities undertaken by young people include speaking at conferences, co-facilitating workshops, taking on leadership roles at youth camps, media appearances, drama performances, and writing magazine articles and health information resources. If education about and awareness of mental illness in the community were improved, the level of stigma and discrimination experienced by people with mental illness and their families could be dramatically reduced (Ministry of Health 2003).

   She's been speaking about her experience at conferences and in
   public. She got to go to a conference in Sydney to speak, and also
   Queensland. She also went on a couple
   of camps. She recorded a song she wrote about her mother and was
   asked to put it on an Australian hip hop album. She was in many
   theatre productions. She won a Youth Leadership of the Year award.

Beyond managing mental illness

Benefits and risks of peer support

Peer support programs are based on the premise that bringing young people together in a group format provides an opportunity for them to meet new people and establish friendships (Bettencourt et al. 1998; Milburn 1996; Olsson et al. 2005). This process can reduce feelings of isolation as young people realise that there are others with comparable experiences and issues. This experience can generate a sense of belonging and enhance social connectedness. Peer support projects commonly report that the sharing of experiences enables participants to see alternative perspectives and solutions to problems, and encourages them to develop and apply coping skills (Turner 1999). Outcomes for peer-based interventions include learning to socialise, share, comfort, help and empathise with others.

   At PATS, I met other teenagers in the same situation as me. It
   didn't make my parent well, but it helped me understand more about
   their illness. I learnt that how I feel is important too and that
   there are other people out there going through the same thing, and
   I had a bit of fun along the way.

However, there are also potential risks (Olsson et al. 2005). In the PATS program, these include exposing participants to disturbing information about mental illness, the development of social networks within PATS at the expense of external networks, and the development of a subculture in which participants see themselves as different from "normal" young people. By monitoring individuals' responses to knowledge about mental illness, offering individual and group support as necessary, encouraging frank discussions around these topics and applying the principles of "normalisation", these risks are acknowledged, effectively managed and have not been problematic.

Benefits and costs of youth participation

Youth participation lies at the core of the PATS approach. Participation provides a multitude of opportunities for individual development, involvement and leadership that are meaningful, rewarding and attractive to many young people (Canadian Health Network 2001). The Australian Youth Foundation (1996, p.1) defines youth participation as

   ... developing partnerships between young people and adults ... so
   that young people can take a valued position in our society and the
   community as a whole can benefit from their contribution, ideas and
   energies.

To achieve meaningful participation, young people should be given opportunities to make contributions to causes in which they believe and which they perceive to be part of a "grand purpose". They need the skills and resources to do the task well, be heard and encouraged to make decisions. When young people work with others to contribute to a bigger whole, powerful connections between participants and their communities can result (Wierenga et al. 2003). The core benefits to be gained from involving young people in these processes are empowerment, a sense of belonging and confidence in their ability to master their environment (Eccles & Gootman 2002; Franklin 2000).

It must be acknowledged that some levels of youth participation can be tokenistic and ineffective. Roger Hart (1992) proposed a 'Ladder of Participation' that consisted of eight steps of participation ranging from "manipulation" at the bottom to "youth initiated and decision-making shared with adults" at the top. The PATS approach aims to provide a range of meaningful and effective youth participation up to and including the highest level. But this comes at a cost. It imposes an intensive workload on program staff, which requires significant resources and support.

Engaging and sustaining adolescents in mental health programs

Engaging adolescents can be challenging. Many young people do not seek professional advice about mental illness, either for themselves or their parents (Rickwood et al. 2005). Many adolescent health needs are unique, and generic health support is not always an effective solution. Respect, empowerment, trust, confidentiality and honesty are essential factors for connecting with young people (Sanci & Young 1995). PATS is co-run by young people, for young people, which ensures that it addresses specific adolescent health needs and issues. The peer support framework respects and acknowledges young people as a source of knowledge and strategies for dealing with their issues. In this way, PATS empowers, enables and engages adolescents.

   ... PATS also helped because it wasn't some EXPERT giving his/her
   opinion. It was kids telling honest stories and sharing solutions.

PATS sustains individuals' engagement by offering opportunities to participate in meaningful activities that both provide and demand commitment to increasing levels of youth participation. Young people can see for themselves that the value and benefit of participating in the program go beyond managing parental mental illness.

   Every little thing Lyric has done has been more than a learning
   experience. It has been a life-changing experience. It has opened
   doors.

Conclusion

PATS is a comprehensive prevention/early intervention program developed in response to an identified need to support young people who have a parent with a diagnosed mental illness. Many adolescents in this numerically significant but largely overlooked group provide an important support role within their own families and communities, often at the expense of their own development and future prospects (Carers Australia 2001a). They need options for support from services within the community. The PATS program is designed specifically to engage, support and empower adolescents. It achieves this by acknowledging that young people are themselves a resource, and by utilising a peer support framework that incorporates high levels of youth participation. Additionally, the program maintains a flexible approach by including content negotiated between the facilitators and participants. This enables the program to meet a diverse range of individual needs while ensuring that participants have access to information about mental illness, health promoting strategies and stigma. Furthermore, PATS provides young people with a support structure that offers ongoing opportunities for meaningful participation and personal development. By recognising and responding to the adolescent experience, PATS not only engages young people who are managing an often difficult and sensitive situation, it also sustains that engagement and provides participants with a wide range of ongoing benefits.

   If you were to ask Lyric, "If you could start your life over, would
   you?', she would say "NO". She doesn't want ANYTHING to change. She
   does not regret anything. She only wishes she heard about PATS
   earlier.

ACKNOWLEDGMENTS

The authors would like to thank:

PATS participants whose reflections are included in this paper. These reflections and other written contributions can be found at <http://www. rch.org.au/pats>.

PATS workers, peer leaders, reference committee and participants.

The Victorian Health Promotion Foundation (VicHealth), beyondblue and the Victorian Department of Human Services (Mental Health Branch).

PATS is currently running in:

Ballarat: Centacare

Cheltenham: Southern Mental Health Association

Geelong: Glastonbury Family Services

Lilydale: Youth Services, Shire of Yarra Ranges

Melbourne: The Centre for Adolescent Health, Royal Children's Hospital

Pakenham: Youth Services, Cardinia Shire Council

Rye: YMCA Shepparton Mental Illness Fellowship

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AUTHORS

John Hargreaves coordinated the PATS evaluation and is currently Research Officer with the Adolescent Health and Social Environments Program.

Lyndal Bond was Principal Investigator of the PATS evaluation and is currently Associate Director and Program Leader of Evaluating the Health Effects of Social Interventions, Medical Research Council Social and Public Health Sciences Unit, Glasgow, Scotland

Matt O'Brien was Victorian Coordinator of PATS at the Centre for Adolescent Health and is currently a project coordinator with headspace, the National Youth Mental Health Foundation.

Danielle Forer was PATS Coordinator at the Centre for Adolescent Health and is currently Group Work Advocate, Foundation House, Victorian Foundation for the Survivors of Torture.

Liz Davies was Manager of Community Programs at the Centre for Adolescent Health and is currently Health Promotion Manager, Toi Te Ora--Public Health (NZ).