Quality of life

"Families in which a parent has a mental illness are at increased risk of experiencing poverty, housing problems, family disruption and disorganisation, marital conflict, reduction of social and leisure activities, disruption of children's schooling and isolation as a result of the parental illness (AICAFMHA 2001)".

As noted in the Australian Infant, Child, Adolescent and Family Mental Health Association's (AICAFMHA's) most recent report on children of parents with a mental illness, all of the above problems can contribute to family breakdown or the perceived need to remove children from their parent's care, yet the legal framework of Australia supports the notion that, wherever possible, children should be brought up by their own families. To further compound the problem, most parents experience high levels of stigma and discrimination because of their mental illness and often find that their role as parent is undermined. Because of this, many parents attempt to cope with the trauma of their mental illness without outside support. Furthermore, some parents fear support services because of the potential for their children to be removed from their care and therefore will not access them.

Until recently, there has been little research interest in the needs of children who have a parent (or parents) with a mental illness. As part of this lack of data, there have been no routine enquires to determine the number of children in this situation. However, as of 1991 in Australia it was roughly estimated that 27,000 children were affected. This estimate was based on the number of women aged between twenty and forty five, the incidence and age of the onset of schizophrenia and affective disorders and data on the proportion of women with such disorders who have children (Gottesman 1991). This lack of data is not unique to Australia: studies from many western countries report that no statistics are available to indicate the proportion of people with a mental illness who are also parents (Cowling 1999).

'At risk' children
Research indicates that a child of a person with a mental illness has an increased risk of:

Recognising children's resilience
Not all children of people with a mental illness will face difficulty. While there are risks associated with having a parent with a mental illness, every family's situation is different and there is a range of outcomes possible for the children. Children can develop significant strengths as a result of living with a parent with a mental illness. For example, through experiencing a challenging situation these children are potentially better able to cope with other difficult life experiences (Kinsella et al. 1996). These children may also develop a strong sense of autonomy which subsequently can help them become more emotionally competent. Factors that can help increase resilience include: a stable, cohesive family with limited marital discord and separation; a strong and extensive external support system; a close friend or other person to confide in; being older at the time of first onset of parental mental illness (older children and adolescents can more easily 'objectify' the illness as separate from their parent's personality, and themselves); good knowledge of mental illness; and good coping abilities and good problem solving abilities.

On the other hand, factors that contribute to greater risk involve: a hostile or chaotic home environment with poor communication; a lack of external supports; being younger at time of first onset of parental mental illness (children less than ten years old are more likely to use negative coping skills); parents having a severe or long duration of illness; child feeling responsible for their parent's illness; and/or marital discord.

Experiences of the children
The experience of having a parent with a mental illness is unique for each child. Some experiences which children of parents with a mental illness may report are:

Reduced continuity of care and disruption to home life: Children who have a parent with a mental illness can experience reduced continuity of care because of their parent's fluctuating behaviour or illness, or because their parent may leave the home as a result of hospitalisation (Cowling 1996). The other 'well' parent can be unavailable to their children due to marital discord or divorce, or because of the increased attention given to the parent with the mental illness. Home life can also be disrupted if the child or children are physically removed (or fear that they will be removed) from their home by welfare agencies for 'protective' purposes.

Lack of communication: As noted by Lancaster (1999), the difficulties with information processing that are associated with mental illness means that it may be difficult for a child to communicate with the parent, resulting in a struggle to make sense of often confusing information: "for example, a parent suffering from delusions may confuse their child by telling them that he is not their father but is really Jesus Christ, or a parent who is paranoid may inadvertently frighten their child by speaking about people watching or following them" (p 16).

Limited Support and Feelings of Isolation: Children may feel isolated from their parents and not have any other supportive adult to discuss their fears, anxieties and other issues with. They can feel isolated from other children and the child may deliberately restrict other children's access to their home to avoid any possibility of embarrassment. The family as a whole can feel isolated from the community because of stigma and lack of understanding.

Disruption to school life: Changes in accommodation may result in regular changes in schools. Children may also miss time at school or leave school at a premature age, as they are required to work or care for their parent.

Lack of information: Children often have a lack of knowledge and understanding about their parent's illness. This can result in the child having irrational concerns about developing mental illness themselves, feeling self-blame, or feeling guilty about leaving their parent or about having positive things happening to them.

Increased responsibilities: The child or children may find themselves 'parenting the parent' There is often a reversal of the normal parent-child relationship, with the eldest child frequently taking on the role of 'parent'. They may not only parent the mother or father, but often the younger children in the family too. Additional responsibilities can involve cooking, doing laundry and other household chores, defusing emotional situations, trying to promote a happy family image to the community, providing physical care or managing household affairs and generally working hard to try to 'make things right'.

Prevention strategies and interventions for children
Children of parents with a mental illness, by virtue of their increased vulnerability, have special needs that must be recognised and met. Several factors have hindered the recognition of these needs.

Providing support for the parent(s)
With the shift of mental health care to the community, together with changed approaches in treatment, it is estimated that a significant proportion of women with a mental illness (and to a lesser extent men) are likely to have children and actively care for them (Caton et al. 1998). Thus, it has become increasingly important to recognise the specific needs of this group.

Parents with a mental illness not only have a range of additional responsibilities associated with day-to-day parenting; they may also have an intense and often realistic fear of losing custody of their child (Nicholson et al. 1998; Kulkarni 1996). The stress and helplessness of this situation can hamper recovery.

Although there is an increased recognition that people with mental illness have normal desires to form relationships and have children, there is still a stigma attached to being a mother or father with a mental illness.

Pregnancy can increase the risk of relapse for women with a mental illness, particularly during the last three months of pregnancy and in the first two months after birth.

It is important to address the needs of the parent so as to enable them to effectively care for their children. Parents could benefit from:

Fostering a supportive community
'It is very easy for people to criticise me for how I bring up Ben. But what I really need is their understanding and practical help. Rather than just pointing out the problems, I wish they would pitch in and give me a hand, like giving Ben a bath or something.'
Kate, a mother with schizophrenia

To combat the isolation experienced by children and adults in families where a parent has a mental illness, prevention and interventions must go beyond the immediate family.

Interventions need to include the extended family (such as grandparents, aunts and uncles) who often play a critical role in caring for the children for periods when the parents are not able to do so (Caton et al. 1998).

The important role of the school system must be recognised in providing both supports to the child and opportunities for educating all children about mental illness (Cowling 1996). Teachers can be educated to be supportive and understanding of the problems facing these children. It may be necessary to inform the child's teacher (particularly in primary school) so that potential behavioural and learning difficulties can be addressed.

References

For a list of references for this quality of life section on Children of Parents with a Mental Illness, click here.

The Schizophrenia Fellowship recently auspiced ON FIRE! which is a program that promotes the mental health and wellbeing of young people living in Sydney, whose parents or siblings have mental health issues. To find out more about ON FIRE! click here.

To ensure the information presented here is in line with current research and best practice, this section will be updated regularly, so make sure you bookmark this page and return often. If you would like to be alerted to updates automatically, join our free mailing list. We also encourage you to email us with your views on the 'quality of life' content, whether you are a consumer, carer or mental health professional. The Guidelines were developed using a collaborative approach and we would like to ensure that any updates to this section are also carried out in a collaborative manner, so your views are very important to us.

This section on 'quality of life' proudly sponsored by:







			Children of parents with a mental illness "Families in which a parent has a mental illness are at increased risk of experiencing poverty, housing problems, family disruption and disorganisation, marital conflict, reduction of social and leisure activities, disruption of children's schooling and isolation as a result of the parental illness (AICAFMHA 2001)". As noted in the Australian Infant, Child, Adolescent and Family Mental Health Association's (AICAFMHA's) most recent report on children of parents with a mental illness, all of the above problems can contribute to family breakdown or the perceived need to remove children from their parent's care, yet the legal framework of Australia supports the notion that, wherever possible, children should be brought up by their own families. To further compound the problem, most parents experience high levels of stigma and discrimination because of their mental illness and often find that their role as parent is undermined. Because of this, many parents attempt to cope with the trauma of their mental illness without outside support. Furthermore, some parents fear support services because of the potential for their children to be removed from their care and therefore will not access them. Until recently, there has been little research interest in the needs of children who have a parent (or parents) with a mental illness. As part of this lack of data, there have been no routine enquires to determine the number of children in this situation. However, as of 1991 in Australia it was roughly estimated that 27,000 children were affected. This estimate was based on the number of women aged between twenty and forty five, the incidence and age of the onset of schizophrenia and affective disorders and data on the proportion of women with such disorders who have children (Gottesman 1991). This lack of data is not unique to Australia: studies from many western countries report that no statistics are available to indicate the proportion of people with a mental illness who are also parents (Cowling 1999). 'At risk' children Research indicates that a child of a person with a mental illness has an increased risk of: Developing schizophrenia or other mental illnesses (Lancaster 1999). First-degree biological relatives of individuals with schizophrenia have a 10 per cent risk for developing schizophrenia and an increased risk of psychopathology more generally (Hodgkinson et al 2001). Developing emotional and behavioural problems, social and educational problems, and disturbances in interpersonal functioning (Lancaster 1999). Developing negative coping strategies. These differ according to the child's developmental stage. For example, babies may be less responsive and more withdrawn, primary school children may have low self-esteem and be anxious, and adolescents may experience low self-confidence, isolation and feelings of responsibility. Recognising children's resilience Not all children of people with a mental illness will face difficulty. While there are risks associated with having a parent with a mental illness, every family's situation is different and there is a range of outcomes possible for the children. Children can develop significant strengths as a result of living with a parent with a mental illness. For example, through experiencing a challenging situation these children are potentially better able to cope with other difficult life experiences (Kinsella et al. 1996). These children may also develop a strong sense of autonomy which subsequently can help them become more emotionally competent. Factors that can help increase resilience include: a stable, cohesive family with limited marital discord and separation; a strong and extensive external support system; a close friend or other person to confide in; being older at the time of first onset of parental mental illness (older children and adolescents can more easily 'objectify' the illness as separate from their parent's personality, and themselves); good knowledge of mental illness; and good coping abilities and good problem solving abilities. On the other hand, factors that contribute to greater risk involve: a hostile or chaotic home environment with poor communication; a lack of external supports; being younger at time of first onset of parental mental illness (children less than ten years old are more likely to use negative coping skills); parents having a severe or long duration of illness; child feeling responsible for their parent's illness; and/or marital discord. Experiences of the children The experience of having a parent with a mental illness is unique for each child. Some experiences which children of parents with a mental illness may report are: Reduced continuity of care and disruption to home life: Children who have a parent with a mental illness can experience reduced continuity of care because of their parent's fluctuating behaviour or illness, or because their parent may leave the home as a result of hospitalisation (Cowling 1996). The other 'well' parent can be unavailable to their children due to marital discord or divorce, or because of the increased attention given to the parent with the mental illness. Home life can also be disrupted if the child or children are physically removed (or fear that they will be removed) from their home by welfare agencies for 'protective' purposes. Lack of communication: As noted by Lancaster (1999), the difficulties with information processing that are associated with mental illness means that it may be difficult for a child to communicate with the parent, resulting in a struggle to make sense of often confusing information: "for example, a parent suffering from delusions may confuse their child by telling them that he is not their father but is really Jesus Christ, or a parent who is paranoid may inadvertently frighten their child by speaking about people watching or following them" (p 16). Limited Support and Feelings of Isolation: Children may feel isolated from their parents and not have any other supportive adult to discuss their fears, anxieties and other issues with. They can feel isolated from other children and the child may deliberately restrict other children's access to their home to avoid any possibility of embarrassment. The family as a whole can feel isolated from the community because of stigma and lack of understanding. Disruption to school life: Changes in accommodation may result in regular changes in schools. Children may also miss time at school or leave school at a premature age, as they are required to work or care for their parent. Lack of information: Children often have a lack of knowledge and understanding about their parent's illness. This can result in the child having irrational concerns about developing mental illness themselves, feeling self-blame, or feeling guilty about leaving their parent or about having positive things happening to them. Increased responsibilities: The child or children may find themselves 'parenting the parent' There is often a reversal of the normal parent-child relationship, with the eldest child frequently taking on the role of 'parent'. They may not only parent the mother or father, but often the younger children in the family too. Additional responsibilities can involve cooking, doing laundry and other household chores, defusing emotional situations, trying to promote a happy family image to the community, providing physical care or managing household affairs and generally working hard to try to 'make things right'. Prevention strategies and interventions for children Children of parents with a mental illness, by virtue of their increased vulnerability, have special needs that must be recognised and met. Several factors have hindered the recognition of these needs. People with a mental illness are not usually identified as parents and thus the existence of their children may not be acknowledged. Mental health providers may view people as patients rather than family members and therefore rarely ask questions about parental status or childcare responsibility. Parenting is not considered a mental health issue. Parenting skills are only assessed when children are deemed at risk of out-of-home placement. They are not routinely incorporated into the psychosocial rehabilitation process (Blanch et al. 1994). The considerable needs of the parent overshadow the needs of the child and the impact of the parent's illness on the child may not be known (Pietsch et al. 1996). The issue of stigma can make it difficult to engage and maintain trust with these families (Pietsch et al. 1996). Providing support for the children Both formal and informal support from within and outside the family is essential for the promotion of good mental health and the prevention of problems in families where a parent has a mental illness (Kinsella et al. 1996; Cowling 1996). Luntz (1995) has recommended the development of programs to increase children's resilience by providing a safe environment in which skills and support networks can be developed, and information provided. Children could benefit from: social support systems including having someone available they can trust to talk about their fears, guilt and confusion; a safe environment in which to learn how to make friends; advocacy on the child's behalf with school, other agencies, and possibly the parent; an understanding of the parent's mental illness; counselling if necessary to address low self-esteem or lack of confidence; a range of recreational activities; and continuity of care with least disruption to home and school when the parent is hospitalised. (Garely et al. 1997; Cowling 1996). Providing support for the parent(s) With the shift of mental health care to the community, together with changed approaches in treatment, it is estimated that a significant proportion of women with a mental illness (and to a lesser extent men) are likely to have children and actively care for them (Caton et al. 1998). Thus, it has become increasingly important to recognise the specific needs of this group. Parents with a mental illness not only have a range of additional responsibilities associated with day-to-day parenting; they may also have an intense and often realistic fear of losing custody of their child (Nicholson et al. 1998; Kulkarni 1996). The stress and helplessness of this situation can hamper recovery. Although there is an increased recognition that people with mental illness have normal desires to form relationships and have children, there is still a stigma attached to being a mother or father with a mental illness. Pregnancy can increase the risk of relapse for women with a mental illness, particularly during the last three months of pregnancy and in the first two months after birth. It is important to address the needs of the parent so as to enable them to effectively care for their children. Parents could benefit from: social support groups; education on parenting (such as setting up routines) and parent support groups; continuity of relationship with a supportive worker; reassurance about the quality of their parenting; being able to ask for help without feeling a failure or fear of having their children removed; quality care for their children; and a suitable visiting place for when their children come to the hospital. (Cowling 1996) Fostering a supportive community 'It is very easy for people to criticise me for how I bring up Ben. But what I really need is their understanding and practical help. Rather than just pointing out the problems, I wish they would pitch in and give me a hand, like giving Ben a bath or something.' Kate, a mother with schizophrenia To combat the isolation experienced by children and adults in families where a parent has a mental illness, prevention and interventions must go beyond the immediate family. Interventions need to include the extended family (such as grandparents, aunts and uncles) who often play a critical role in caring for the children for periods when the parents are not able to do so (Caton et al. 1998). The important role of the school system must be recognised in providing both supports to the child and opportunities for educating all children about mental illness (Cowling 1996). Teachers can be educated to be supportive and understanding of the problems facing these children. It may be necessary to inform the child's teacher (particularly in primary school) so that potential behavioural and learning difficulties can be addressed. References For a list of references for this quality of life section on Children of Parents with a Mental Illness, click here. The Schizophrenia Fellowship recently auspiced ON FIRE! which is a program that promotes the mental health and wellbeing of young people living in Sydney, whose parents or siblings have mental health issues. To find out more about ON FIRE! click here. To ensure the information presented here is in line with current research and best practice, this section will be updated regularly, so make sure you bookmark this page and return often. If you would like to be alerted to updates automatically, join our free mailing list. We also encourage you to email us with your views on the 'quality of life' content, whether you are a consumer, carer or mental health professional. The Guidelines were developed using a collaborative approach and we would like to ensure that any updates to this section are also carried out in a collaborative manner, so your views are very important to us. This section on 'quality of life' proudly sponsored by: