Children living with a mentally ill parent

By Jaimie Byrne
Often when a family member comes for counseling due to the mental illness of a loved one,
they are trying to find solutions and strategies to get their loved one to accept their illness,
take responsibility for their actions or get into treatment; when this does not happen naturally
in families where a mental illness exists, the home can become quite chaotic, disorganized,
and filled with tension. Spouses often find it extremely frustrating and taxing when their ill
partner is unable to seek help for their illness and consequently is also unable to contribute to
chores, child rearing, family events and daily routines.
Parents of adult children with a mental illness will often extend the duration of their parental
responsibilities such as providing room and board, taxiing to doctors appointments, raising
grandchildren and providing financial support. When a family environment becomes chaotic,
we sometimes go into survival mode and try to cope as best we can from day to day. Often
we try to hide this chaos from the children involved; we try to shelter them as best we can in
order to protect them. Unfortunately these days our children are learning very quickly and are
very intuitive. This can make it very difficult for a parent or grandparent to hide the mental
illness from the child.
What to do then?
How do we help our children so that they can cope with the illness in the family without
hiding it from them?
Difficulties for Children
The majority of children who have a parent with a mental illness find it difficult to cope
because they do not have the maturity and coping tools to deal with certain complex
situations. Often children are faced with
Being separated time and again from a parent that needs to be hospitalized for treatment or
that is unable to provide consistent care.
Feelings of insecurity and anxiety due to the unstable relationship with their parent.
Not being properly looked after.
Maltreatment and abuse.
Becoming parentified by having to take care of an ill parent or younger siblings.
Feelings of worry, fear or shame because of their parents illness and behavior.
Teasing or bullying by other children
Hearing unkind and upsetting things about their ill parent.

When a child is faced with these situations and feelings and has not yet learned appropriate
coping tools to deal with them, a number of problems may arise. Often children will
withdraw and isolate themselves as they develop feelings of anxiety faced with an
unpredictable environment. These children may also find it difficult to concentrate on a task
or on school work due to their anxiety levels. Children can also develop behavior problems
when faced with situations and feelings that they are not prepared for.
Children will often learn maladaptive behaviors and coping tools from their ill parent (i.e.:
temper tantrums, hitting, lying, bullying, manipulation, etc) Children may also feel anger
or frustration due to their family situation which can be exhibited in physical or verbal
aggression.
Problems that children may develop
Behavior problems
Anxiety
Confusion
Role reversal/ Parentification
Attachment issues According to the American Academy of Child and Adolescent Psychiatry,
Children of parents with mental illness are at risk for developing mental illnesses,
particularly if both parents are mentally ill. The risk for developing a psychiatric illness
may be even greater if a parent has Bipolar disorder, an anxiety disorder, ADHD,
schizophrenia, substance use disorder, or depression, or if the childs family environment is
inconsistent and unpredictable. The Brown University Child and Adolescent Behavior Letter
(2003).
There are many contributing factors to a childs outcome, if a child has a parent with a mental
illness; they are surely at a higher risk for developing problems due to the instability and
emotional rollercoaster that they may experience in their childhood. As many of our members
can attest to, living with someone with a mental illness can be quite a challenge; however
when we have a set of tools and knowledge to work from, the daily challenges can be more
easily managed.
What can I do to decrease risk factors for my child?
Provide Knowledge: The most important thing a family member can do for a child that has a
parent with a mental illness is to educate the child on the illness. Children develop anxiety
and worry when they observe behaviors that are unusual. Explaining to a child that a parent
has these behaviors due to an illness and that there is nothing to be scared about will help to
ease anxiety.
There are many resources for parents on how to talk to your children about mental illness;
these can be very helpful when trying to find the appropriate words to use. Remember that
mental illness is an illness like any other and many children can relate to being sick.

Provide a stable environment: It is often very difficult to provide a stable environment when
one parent is unpredictable and schedules are continually being challenged and changed. It is
important to try to provide predictability for a child; to commit to a routine. Children need a
sense of predictability to feel secure and to develop an innate sense of security in life.
Seek psychotherapy: Seeing a professional on a regular basis can be quite helpful to not only
the child but to all family members. Having a designated, impartial person to talk to and to
work out our difficulties with can be extremely beneficial. Children can feel supported and
understood as they work through their more difficult feelings associated with having a parent
with a mental illness.
Nurture the relationship with the ill parent: It is extremely important for children to have a
positive connection with their parents. Often when a parent is unable to properly care for their
child due to their mental illness, the relationship becomes strained. Children can become
fearful or anxious around their ill parent and even feel unloved. It is important for the
caregivers to make extra efforts to maintain the relationship between parent and child, so that
the child can grow up feeling secure and loved.
Maintain a strong relationship with a healthy adult: When a child experiences instability due
to a parents mental illness, it becomes important for the child to have appropriate role
models. If a parent is unable to provide a sense of security for their child or to attend to their
emotional needs appropriately, having a stable and secure relationship with another adult can
help the child to develop a sense of security and more easily be able to separate a parents
behaviors due to the illness from negative feelings towards the child.
Healthy peer relationships: It is helpful for children to have healthy friendships with their
peers for many reasons; they learn negotiation skills, they learn how to be in a peer
relationship as opposed to a parent/child relationship and they develop trusting bonds that
will help them to cope through difficult times.
For children of parents with a mental illness, it often helps to observe and interact with their
friends in order to develop a more encompassing view of the world than they would have if
kept isolated.
Foster healthy interests outside of the home: Often children of parents with a mental illness
are not adequately socialized with peers and rarely have the opportunity to partake in sporting
events or cultural activities on a regular basis due to lack of organization or chaos in family
functioning. It is always important for children to develop their personal interests outside of
the family in order to learn how to properly separate and develop a strong sense of identity
and self.
Children can also learn tools to cope with their daily environment and the stresses of living
with a parent with a mental illness. As with any difficulty in life, it is much easier to deal with
once we understand it fully and then learn to deal with it appropriately.
References Helping children and teens living with mentally ill parents. (2002).
Brown University Child & Adolescent Behavior Letter, 18(7), 1. Leschied, A. W., Chiodo, D.,
Whitehead, P. C., & Hurley, D. (2005).

The relationship between maternal depression and child outcomes in a child welfare sample:
implications for treatment and policy. Child & Family Social Work, 10(4), 281-291. Orel, N.
A., Groves, P. A. & Shannon L. (2003).
Positive Connections: a programme for children who have a parent with a mental illness.
Child and Family Social Work, 8, 113-122.

Children of Parents with 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
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carried out in a collaborative manner, so your views are very important to us.
This section on 'quality of life' proudly sponsored by:

Be the Best Parent You Can Be

Mental health conditions can affect any person regardless of gender, age, health status and
income, and that includes people who have or want to have children of their own. Parenting is
both greatly rewarding and a daunting task for anyone, but it poses some particular
challenges for people with a mental health condition. Here, you will find information about
parenting and mental illness, where to go to get help for you and your family, and how to
support yourself and your children.
Everyone can improve on their parenting skills. Consider taking a parenting class to learn the
basics and lessen the anxiety of being a parent. Parentingwell.org is a web site especially for
parents with mental illness. It includes an online community, tips and tools and other
resources. For perspective on all of the roles being a parent entails, visit the Parenting section
of the Temple University Collaborative on Community Inclusion website.
My Mental Illness and My Child
My Child's Mental Health
Talking to My Child
Caring for Children
Could I Lose My Child?
Legal Issues
Keeping Families Intact

What impact does a parent's mental illness have on

children?
The effect of a parent's mental illness on children is varied and unpredictable.[1] Although
parental mental illness poses biological, psychosocial and environmental risks for children,
not all children will be negatively affected, or affected in the same way. The fact that a parent
has mental illness alone is not sufficient to cause problems for the child and family. Rather, it
is how the mental health condition affects the parent's behavior as well as familial
relationships that may cause risk to a child. The age of onset, severity and duration of the
parent's mental illness, the degree of stress in the family resulting from the illness, and most
importantly, the extent to which parents' symptoms interfere with positive parenting, such as
their ability to show interest in their children, will determine the level of risk to a child. The
child's age and stage of development is also important.

Will my child have a mental health condition as well?

Mental health conditions are not contagious, but research shows that some mental health
conditions may have a genetic link. Bipolar disorder, for example, has long been shown to
run in families. Other people may pass on hereditary traits that make a mental health disorder
more likely without passing on a specific disorder.
Because you have a mental health condition does not mean that your child will have a mental
health condition. But because of your own experiences, it may help you be better attuned to
the psychological challenges that parenting can bring.
Risk Factors

Children whose parents have a mental illness are at risk for developing social, emotional
and/or behavioral problems. An inconsistent and unpredictable family environment, often
found in families in which a parent has mental illness, contributes to a child's risk. Other
factors that place all children at risk, but particularly increase the vulnerability of children
whose parents have a mental illness, include:

Poverty

Occupational or marital difficulties

Poor parent-child communication

Parent's co-occurring substance abuse disorder

Openly aggressive or hostile behavior by a parent

Single-parent families

Families at greatest risk are those in which mental illness, a child with their own difficulties,
and chronically stressful family environments are all present. Many of these factors, however,
can be reduced through preventive interventions. For example, poor parent-child

communication can be improved through skills training, and marital conflict can be reduced
through couple's therapy.
The Prevention Perspective

Whether or not children of parents with mental illness will develop social, emotional, or
behavioral problems depends on a number of factors. These include the child's genetic
vulnerability, the parent's behavior, the child's understanding of the parent's illness, and the
degree of family stability (for example, the number of parent-child separations). Preventive
interventions aimed at addressing risk factors and increasing children's protective factors
increase the likelihood that they will be resilient, and grow and develop in positive ways.
Effective prevention strategies help increase family stability, strengthen parents' ability to
meet their children's needs, and minimize children's exposure to negative manifestations of
their parent's illness.[2]
Protective Factors

Increasing a child's protective factors helps develop his or her resiliency. Resilient children
understand that they are not responsible for their parent's difficulties, and are able to move
forward in the face of life's challenges. It is always important to consider the age and stage of
development when supporting children. Protective factors for children include:

A parent's warm and supportive relationship with his or her children

Help and support from immediate and extended family members

A sense of being loved by their parent

Positive self-esteem

Good coping skills

Positive peer relationships

Interest in and success at school

Healthy engagement with adults outside the home

An ability to articulate their feelings

Parents who are functioning well at home, at work, and in their social
relationships

Parental employment

References:

1. Joanne Nicholson, Elaine Sweeny, and Jeffrey Geller. Mothers With Mental Illness: I. The
Competing Demands of Parenting and Living With Mental Illness. Psychiatric Services. May
1998. Vol. 49. No. 5.

2. Ibid.

How do I talk to my child about my mental health condition?

How you talk to your child about your mental health condition will depend on the age and
maturity of your child and your willingness to open up to him or her.
In general, children, especially as they grow older, are very astute and knowledgeable about
their surroundings. They can sense emotional changes and can often tell if something is
hidden from them without their knowledge. Some children may be able to fully understand
what it means to have a mental health condition. In talking with children you can help them
to know how to cope when you are not feeling well. And, a child may be able to support you
in your recovery by reminding you when to take your medications or help you stay on track.
Your decision to talk to your child about your condition should also take into account your
readiness. Parents often want to appear invincible and strong to their children, as they think it
is the parents' role to care for a sick child and not the other way around. The decisions you
make should be made with both parent and child in mind.
Before proceeding, you should always talk to your doctor or therapist about the best ways to
bring this information up. You may want to consider the possibility of inviting a child to a
session to explore this information.

What can I expect from my child?

Your child might experience some of these feelings:

Anger - Your child may be angry at you for having a mental health
condition. The child may think that it was your fault that you had a mental
health condition and that it is your fault that they will experience a harder
life. Your child might also be angry at external forces, such as a higher
power or the world, for unfairly hurting you or your family. Your child may
also be angry at him or herself. If you notice anger problems in your child,
you should talk to your therapist or doctor about arranging for your child
to join in sessions.

Fear - Your child might be scared about what the future will bring. Your
child might be afraid about how your mental health condition will change
your relationship. They might be afraid about your ability to take care of
them. Your child may also be scared about what others will think if they
found out that you have a mental health condition. Sit down and talk to
your child about these issues, reassure them you still love them.

Guilt - Your child may blame himself or herself for your mental health
condition, especially in cases or anxiety or depression. Your child may
express guilt by taking over an inordinate amount of household duties.
Your child may try and hide his or her own problems so as not to make
your life any worse.

Shame - Despite efforts to educate the public about mental illness,

mental illness is still often a stigmatized and misunderstood condition.
Your child might be embarrassed. He or she might think that your
condition will have negative impacts on his or her social life and might be
worried.

Sadness - Children can become very sad when they learn that a loved
one, especially a parent, is hurt or sick. You should talk to your doctor
about ways to cope with sadness and ways to know when sadness
becomes depression.

Anxiety - Your child may become overanxious or worried about you if he

or she learns that you have a mental health condition. These children tend
to be overly helpful and may miss out on their own lives.

Relief - For some children, learning that you have a mental health
condition might be a relief. It might help explain behaviors or incidents
that they experienced that they previously could not understand.

Supportiveness - Your child may be very supportive of your mental

health, regardless of his or her previous attitudes toward mental illness.
Often, having mental illness in a family can change someone's orientation
toward mental illness.

How can I care for a child while caring for myself?

In addition to being a parent, you are also a person of your own. Your recovery plans and
activities should always include time for yourself that is relaxing and beneficial.
If you have a crisis action plan or a psychiatric advance directive, you should designate
someone to help with your parenting duties. If your child is old enough, you should discuss
your plan with your child and identify resources and options together for handling things
when you are not well.

Could I lose my child because I have a mental health

condition?
A higher proportion of parents with serious mental illness lose custody of their children than
parents without mental illness. There are many reasons why parents with a mental illness risk
losing custody, including the stresses their families undergo, the impact on their ability to
parent, economic hardship, and the attitudes of mental health providers, social workers and
the child protective system. Supporting a family where mental illness is present takes extra
resources that may not be available or may not be offered. Also, a few state laws cite mental
illness as a condition that can lead to loss of custody or parental rights. One unfortunate result
is that parents with mental illness might avoid seeking mental health services for fear of
losing custody of their children. Studies that have investigated this issue report that:

Only one-third of children with a parent who has a serious mental illness
are being raised by that parent.

In New York, 16 percent of the families involved in the foster care system
and 21 percent of those receiving family preservation services include a
parent with a mental illness.

Grandparents and other relatives are the most frequent caregivers if a

parent is psychiatrically hospitalized, however other possible placements
include voluntary or involuntary placement in foster care.[1]

The major reason states take away custody from parents with mental illness is the severity of
the illness, and the absence of other competent adults in the home.[2] Although mental
disability alone is insufficient to establish parental unfitness, some symptoms of mental
illness, such as disorientation and adverse side effects from psychiatric medications, may
demonstrate parental unfitness. A research study found that nearly 25 percent of caseworkers
had filed reports of suspected child abuse or neglect concerning their clients.[3]
The loss of custody can be traumatic for a parent and can exacerbate their illness, making it
more difficult for them to regain custody. If mental illness prevents a parent from protecting
their child from harmful situations, the likelihood of losing custody is drastically increased.
Legal Issues

All people have the right to bear and raise children without government interference.
However, this is not a guaranteed right. Governments may intervene in family life in order to
protect children from abuse or neglect, imminent danger or perceived imminent danger.
When parents are not able, either alone or with support, to provide the necessary care and
protection for their child, the state may remove the child from the home and provide
substitute care.
Adoption and Safe Families Act
The Federal Adoption and Safe Families Act, Public Law 105-89 (ASFA) was signed into law
November 19, 1997. This legislation is the first substantive change in federal child welfare
law since the Adoption Assistance and Child Welfare Act of 1980, Public Law 96-272.4 It is
intended to achieve a balance of safety, well-being and permanency for children in foster
care. It requires that state child welfare agencies make "reasonable efforts" to prevent the
unnecessary placement of children in foster care and to provide services necessary to reunify
children in foster care with their families. ASFA establishes expedited timelines for
determining whether children who enter foster care can be moved into permanent homes
promptly-their own familial home, a relative's home, adoptive home, or other planned
permanent living arrangement.
While ASFA is designed to protect children, it also includes provisions pertaining to parental
rights. For example, under ASFA, parents have the right to receive supports and services to
help them retain custody and keep their families intact. The child welfare system must
provide these services according to an individualized plan that has been developed and
agreed upon by all parties to ensure parents with mental illnesses are not discriminated
against due to their illness. A plan with parental input also helps ensure that, when

appropriate, efforts are made by state welfare agencies to promote family permanency,
including establishing whether children in foster care can be moved into a permanent living
situation.
Helping Families Stay Intact

Parental mental illness alone can cause strain on a family; parental mental illness combined
with parental custody fears can cause even greater strain. Such strain, as well as the lack of
specialized services for families in the child welfare system and the overall stigma associated
with mental illness, makes it difficult for families to get the help they need. With the right
services and supports though, many families can stay together and thrive. The following
efforts by advocates can help families living with mental illness maintain custody and stay
intact:

Help parents become educated about their rights and obtain legal
assistance and information.

Advocate for parents as services plans are developed, and assist adult
consumers to develop their own self-care plans and advance directives to
strengthen their parenting skills and manage their own illness.

Enable parent-child visitation during psychiatric hospitalization to maintain

the bond between parent and child.

Train child protective services workers to better understand parental

mental illness.

Educate the legal system about advances in the treatment of serious

mental illness.

Advocate for increased specialized services for parents with serious

mental illnesses available through the court system.

References:

1. Network practical tools for changing environment. Making the Invisible Visible: Parents
with Psychiatric Disabilities. National Technical Assistance Center for State Mental Health
Planning. Special Issue Parents with Psychiatric Disabilities. Spring, 2000.
2. Roberta Sands. "The Parenting Experience of Low-Income Single Women with Serious
Mental Disorders. Families in Society." The Journal of Contemporary Human Services. 76
(2), 86-89. 1995.
3. Joanne Nicholson, Elaine Sweeny, and Jeffrey Geller. Mothers With Mental Illness: II.
Family Relationships and the Context of Parenting. May 1998. Vol. 49. No. 5.
4. Ibid.

RELATED CHAPTER
Safeguarding Children Visiting Psychiatric Wards and Special Hospitals Procedure.

AMENDMENT
This chapter was updated throughout In November 2014, and should be re-read. The link to
Bolton local guidance was also updated.

Contents
1. Introduction
2. Key Definitions
3. Responding to Concerns
4. Teenage Parents and Pregnant Teenagers
5. Possible Effects of Parental Mental Ill Health
6. Collaboration Between Health and Children's Social Care
7. Safeguarding Children Before and Immediately After Birth
8. Staff Safety
9. Additional Local Guidance
Appendix 1: Definitions and Common Terms of Mental Illness
Appendix 2: Assessment Toolkit

1. Introduction
This practice guidance aims to assist all agencies working with children, with adults who are
parents/carers or with pregnant women and their partners in identifying situations where
action is needed to safeguard a child or promote their welfare as a result of the adult's mental
ill health.
Mental ill health in a parent or carer does not necessarily have an adverse impact on a child's
development. Just as there is a range in severity of illness, so there is a range of potential
impact on families. The majority of parents with a history of mental ill health present no risk
to their children, however even in cases of low level concern, the needs of the child/ren
should be paramount.

It is important to recognise other issues that can exacerbate the risk presented by mental
health issues. For example, the presence of drug or alcohol dependency and domestic
violence and abuse in addition to mental health problems with little or no family or
community support would indicate an increased likelihood of risk of harm to the child, and to
the parents' mental health and wellbeing. Relying on a diagnosis is not sufficient to assess
levels of risk. This requires an assessment of every individual's level of impairment and the
impact on the family.
It is essential that the diagnosis of a parent/carer's mental health is not seen as defining the
level of risk. Similarly, the absence of a diagnosis does not equate to there being little or no
risk. An assessment should consider the impact on the child of behaviour and support
services.
"A structured assessment of mother's ability and capacity to parent child x is not undertaken.
The evidence that mother's parenting is compromised by her use of drugs and mental illness
never feature in the work with mother."
Quote from a Manchester Serious Case Review
There is also a well-established relationship between mental ill health and domestic violence
and abuse. Between 50% and 60% of women mental health service users have experienced
domestic violence, and up to 20% will be experiencing current abuse. Domestic violence and
abuse is one of the most prevalent causes of depression and other mental health difficulties in
women.

2. Key Definitions
'Parent' may refer to biological and non-biological parents, carers including grandparents,
pregnant women and their partners and any adult who has regular responsibility for the care
of a child or young person (this may not necessarily mean that the adult in this context has
Parental Responsibility in legal terms).
The term "mental ill health" is used to cover a wide range of conditions, from
eating disorders, mild depression and anxiety to psychotic illnesses such as
schizophrenia or bipolar disorder. A glossary of some of the most common
conditions is included in Appendix 1: Definitions and Common Terms of Mental
Illness.

3. Responding to Concerns
The most effective response to children and families affected by mental ill health comes
through all agencies adopting a holistic whole family approach. This is based on coordinating
the support provided by adult and children's services to a single family "at risk" in order to
secure better outcomes for the children and adults through the use of targeted, specialised and
whole family approaches to addressing family needs.

Fundamental to this approach is good inter-agency practice characterised by:

Routine enquiry;

Robust inter-agency communication and information sharing;

Joint assessment of need;

Joint planning; and

Action in partnership with the family.

CAF processes should support this and, where necessary, Child in Need and Child Protection
Assessment and planning processes.
In any situation where there is a perceived conflict between the interests of the adult and
those of the child, all agencies must treat the child's needs and safety as paramount. Agencies
also have a responsibility to adopt a non-discriminatory, open and supportive approach and
ensure adequate advocacy is provided to the parent. While services should recognise diversity
and respect an individual's ethnic, religious and cultural needs and personal preferences, but
this should not excuse worrying behaviours as culturally normal.
Most children with additional needs due to an adult's mental ill health are considered under
the CAF processes and without the intervention of Children's Social Care. However, all
agencies must be alert to the potential risks to children of parental mental ill health and must
consider its impact on the safety and well being of the children and the need for specialist
assessment, consulting other agencies as necessary.
Agencies should also be sensitive to the fact that mental ill health may be only
one of the factors affecting parenting and the children's well being. As stated
above, there is an established relationship between mental ill health and
domestic violence and abuse. There is also a relationship between mental ill
health and substance misuse.

Professionals working with adults experiencing mental ill health who are parent/carers or
their partners should establish:

Whether a CAF has already been completed and whether there is a Lead
Professional, by contacting the relevant CAF Team (see Local Contact
Details - to follow);

Whether Children's Social Care is already involved (see Local Contact

Details).

Where there is a Lead Professional or Social Worker, professionals working with the
parent/carer or their partner should provide any additional information they may hold and
contribute to the child's plan, including by attending relevant meetings.

Where there is no existing Lead Professional or Social Worker and the professional believes
that the child has additional needs requiring some level of support from other agencies, they
should consider the need for a CAF or a referral to Children's Social Care. In some cases, the
child or young person may have additional needs because their life is in some way restricted
as they are young carers, taking responsibility for a person who is experiencing mental ill
health.
If a CAF is required, professionals should seek the parent's/carer's consent and follow the
CAF process.
Where a non-urgent referral to Children's Social Care is being considered, professionals
should discuss their concerns with Children's Social Care and proceed as agreed.
In any case where there is believed to be an imminent risk of Significant Harm, Children's
Social Care must be contacted immediately in accordance with the Making Referrals to
Childrens Social Care Procedure.
Please note that under this procedure, any telephone referral must be followed up within 24
hours with a written referral.
Professionals should follow their own agency's safeguarding procedures. They should consult
their line manager or agency safeguarding lead if they are uncertain about the need to refer to
Children's Social Care. Children's Social Care offers a consultation service about the
appropriateness of making a referral.
Throughout their involvement with the adult and children, professionals must
continually review the impact of mental ill health on parenting capacity and the
safety and well being of the children.

4. Teenage Parents and Pregnant Teenagers

When dealing with teenage parents or pregnant teenagers experiencing mental ill- health, it is
important to consider and assess the needs of the teenage mother or father as well as the
potential impact on the parenting of their child(ren) or unborn baby. Consideration needs to
be given as to whether the teenager is a Child in Need or a child at risk of Significant Harm in
their own right, as well as undertaking an assessment of the needs of their child or unborn
baby.
Multi-agency assessment and planning should follow the processes outlined above for both
the teenage parent(s) and their child. Where a CAF is required for the teenager, there may be
agencies that can offer specific support to the teenager(s), such as CAMHS (Child and
Adolescent Mental Health Service for 16/17 years olds), Teenage Pregnancy Personal
Advisers or Mental Health Advisers.

5. Possible Effects of Parental Mental Ill Health

Depression and anxiety are common and at any one time one in six adults may be affected.
Psychotic disorders are much less common with about one in two hundred individuals being
affected. Parents with mental ill health may neglect their own and their children's physical,
emotional and social needs. Their children may have caring responsibilities, which are
inappropriate to their age and may have an adverse effect on the children's development.
Some forms of mental ill health may blunt parents' emotions and feelings or cause them to be
"unavailable" or not responsive to the child; or to behave in bizarre or violent ways towards
their children or environment.
Research has found that:

Approximately 30% of adults with mental ill health have dependent

children;

At any one time, about 10,000 children and young people are caring for a
parent with mental ill health;

25% of children subject to Child Protection Conferences has a parent with

mental ill health;

33% of children with emotional and behavioural disorders have a parent

with a mental health problem;

Post-natal depression can be linked to both behavioural and emotional

problems in the children of affected mothers.

The stigma and oppression associated with mental ill health can of themselves impair
parenting capacity and children can carry the burden of covering for parental behaviour.
Children, aware of the social stigma, may be reluctant to talk about family problems or seek
support.
At the extreme, a child may be at risk of severe injury, profound neglect, or even
death. A study of 100 reviews of child deaths where abuse or neglect had been a
factor in the death, showed clear evidence of parental mental illness in one third
of cases.
Protective Factors:

Parental mental ill health will be less likely to have an adverse effect on a child when:

The ill health is mild or short-lived;

There is another parent or family member who can help;

There is no other family disharmony;

The child has wider support from extended family, friends, teachers or
other adults;

A secure base the child feels a sense of belonging and security;

Good self-esteem an internal sense of worth and competence;

A sense of self-efficacy a sense of mastery and control, along with an

accurate understanding of personal strengths and limitations;

At least one secure attachment relationship;

Access to wider supports such as extended family and friends;

Positive nursery, school and or community experiences.

Note: An older child may seem more resilient but they can also be vulnerable in
other ways. The risk to an older child is a different risk but they are not
necessarily at less risk.
Indicators of increased risk:

A significant history of violence is a risk indicator for children, as is parental noncompliance with services and treatment.
Children most at risk of Significant Harm are those who:

Feature within parental delusions (i.e. false beliefs);

Are built into the parent's suicidal plans;

Become targets of parental aggression or rejection;

Are being profoundly neglected physically and/or emotionally as a result of

the parent's mental illness;

Are newborn infants whose mother has a severe mental illness or

personality disorder;

Has a parent who is expressing thoughts of harming their child e.g. in

severe depression;

Who is involved in his/her parents obsessive-compulsive behaviours;

Who has caring responsibilities inappropriate to his/her age;

Who may witness disturbing behaviour arising from the mental health
problems (e.g. self-harm, suicide, disinhibited behaviour, violence,
homicide);

Who does not live with the unwell parent, but has contact (e.g. formal
unsupervised contact session or the parent sees the child in visits to the
home or on overnight stays);

Who is socially isolated because they feel unable to either bring other
children home, or understand or have the words to explain what is
happening at home to adults;

Is an unborn child of a pregnant woman with any previous and/or postpartum major mental health problem.

The following factors may impact upon parenting capacity and increase concerns that a child
may have suffered or is at risk of suffering significant harm:

History of mental health problems with an impact on the sufferers

functioning;

Maladaptive coping strategies;

Misuse of drugs, alcohol, or medication;

Severe eating disorders;

Self-harming and suicidal behaviour;

Lack of insight into illness and impact on child, or insight not applied;

Non-compliance with treatment;

Poor engagement with services;

Previous or current compulsory admissions to mental health hospital;

Mental health problems deemed long term untreatable, or untreatable

within time scales compatible with childs best interest;

Mental health problems combined with domestic abuse and/or relationship

difficulties;

Mental health problems combined with isolation and/or poor support

networks;

Mental health problems combined with criminal offending (forensic);

Non-identification of the illness by professionals (e.g. untreated postnatal

depression can lead to significant attachment problems);

Previous referrals to LA childrens social care for other children.

6. Collaboration Between Health and Children's Social Care

In relevant cases, close collaboration and liaison between the mental health professionals
working with the parents or carers and Children's Social Care is essential.
When working with a parent, the mental health professional should contact Children's Social
Care to establish if they are involved, seeking the parent's consent if appropriate.
They should also contact Children's Social Care if they are uncertain about whether a
particular concern constitutes a safeguarding issue. If in doubt they should share their
concerns.
Joint assessments and joint visits should be undertaken between the agencies to facilitate
assessments and safeguard children. Where they are known to be involved, Children's Social
Care should be invited to and attend relevant meetings, e.g. CPA planning and review,
discharge meetings, etc.
Similarly, mental health professionals should be invited to meetings convened by Children's
Social Care, either as part of an enquiry and assessment or as part of a continuing
intervention. Such meetings can include Strategy Discussions; "professionals meetings";
Child Protection Conferences, Core Groups and other planning or review meetings. If invited,
mental health professionals involved with the child's parent or carer should attend these
meetings or, if this is not possible, contribute by means of a written report.
Please note that a strategy discussion should always be considered when a child might be at
risk due to an adult's acute mental health needs.
Consistent with usual standards of good practice, where they have been involved
in joint working, neither agency should cease their involvement without
informing the other and without an assessment of the implications for the child.
This is particularly the case where patients have delusional systems or suicide
plans which include their children.

7. Safeguarding Children Before and Immediately After Birth

See also Pre-Birth Assessments Procedure.
There may be concerns about a pregnant woman's ability to provide safe and appropriate care
to a child. These may arise from her current mental health, her past history and/or her family
circumstances. In addition, or alternatively, the concerns may arise due to her partner's mental
health or past history.
Parents who are concerned about their own mental health or the impact on their children
should speak to their GP. Practitioners who have concerns about a parent or carer's mental
health should consult with the Community Mental Health Teams. If this concern involves

concern about the welfare of the child then a referral should be made as described above to
Childrens Social Care.
Special consideration should be given to pre-birth planning for pregnant mothers who have a
current severe and enduring mental illness, or a past history of a severe mental illness,
whether this occurred after a previous childbirth or is unrelated to childbirth. These women
are more likely to have parenting problems and to deteriorate after delivery.
The relevant Mental Health Trust should be involved with all pregnant women with a past or
current episode of severe depression, bipolar disorder or schizophrenia. Professionals from
other agencies working with such women should confirm that this is the case. They should be
referred to the perinatal clinic as soon as the pregnancy is known, to obtain advice on
treatment as early as possible in pregnancy and assessment of potential parenting problems.
Where the concerns are rooted in the pregnant woman's partner's mental health, the
pregnancy should trigger a multi- disciplinary/multi-agency review and planning meeting
arranged by the relevant Mental Health Trust under the CPA arrangements. Consideration
should be given to the effect of the pregnancy and parenthood on expectant partners and risks
and needs assessments should take account of the pregnancy.
Any concerns about potential parenting problems should be discussed with the parent(s),
when appropriate, and support offered. In some cases the assessment of potential parenting
problems will conclude that there is a need for Children's Social Care to be involved. The
parent(s) should be made aware of any referrals to other agencies and their consent to
engagement identified. However, where parents fail to consent and/or where there is a risk of
Significant Harm to the baby, any necessary referrals to Children's Social Care must be made
without their consent as set out in the Making Referrals to Childrens Social Care Procedure.
Where Children's Social Care is already involved with other children in the family, the
responsible Social Worker should be informed of the pregnancy as soon as possible.
Where Children's Social Care is not already involved and a referral is considered appropriate,
a completed Referral Form should be sent to them soon after 20 weeks gestation, to allow an
Assessment to be completed. Where required, the aim will be to complete and, if necessary,
convene an Initial Child Protection Conference by 32 weeks' gestation.
More detailed guidance can be found in the section on Pre-Birth Assessments Procedure.

8. Staff Safety
Staff from all agencies should have regard for the safety of their colleagues in making a home
visit or an assessment, and information about people who are known to represent a threat
should be shared as part of any referral or joint working. This includes risk assessments being

made and shared across agencies. Workers should seek advice from their managers and
adhere to the Health and Safety Policy of their agency.
Where Children's Social Care staff are aware that an adult they wish to assess is vulnerable
because of a current or previous mental disorder, they should take the precaution of
discussing the implications with the relevant mental health professionals and vice versa.

9. Additional Local Guidance

Bolton;

Manchester;

Rochdale;

Salford;

Stockport;

Tameside;

Trafford;

Wigan to follow.

Appendix 1: Definitions and Common Terms of Mental Illness

There have been many attempts at defining mental illness and definitions vary depending on
the severity of the symptoms. The Mental Health Act 1983 does not offer clear definitions of
mental illness and as yet there is no university agreed definition.
The Health of the Nation booklet: "Mental Illness - What does it mean?" (HMSO) states:
"There are many different types of mental illness. Often these involve feelings of depression,
anxiety and confusion - all of which most people get some time or other, particularly after a
distressing life event such as bereavement. But with mental illness these feelings occur to
such an extent for such a long period of time that they make it very difficult for a person to
cope with everyday life."
Some of the definitions below are also taken from that booklet.
Anxiety states

phobic, panic and general anxiety disorders in which anxiety symptoms, such as worry,
tension, over breathing and giddiness, cause significant distress and disability.

Bi-polar disorder
causes profound changes in mood, from severe depression and lethargy to
elation and over-activity.
Borderline personality disorder

A serious mental illness characterised by pervasive instability in moods, interpersonal

relationships, self-image, and behaviour. This instability often disrupts family and work life,
long-term planning, and the individual's sense of self-identity.
Originally thought to be at the "borderline" of psychosis, people with borderline
personality disorder suffer from a disorder of emotion regulation. While less well
known than schizophrenia or bipolar disorder, BPD is more common, affecting 2%
of adults, mostly young women. There is a high rate of self-injury without suicide
intent, as well as a significant rate of suicide attempts and completed suicide in
severe cases. Patients often need extensive mental health services and account
for about 20% of psychiatric hospitalisations.
Dementia
leads to a decline in a person's intellectual functioning and memory. People can
become very confused. Their memory for current events is impaired, but they
are often able to recall scenes from many years ago with great clarity.
Depressive Disorder
a condition in which feelings like depression, loss of interest, reduced energy,
suicidal thoughts, and sleep and appetite disturbance go beyond normal mood
changes.
Dual diagnosis

The term 'dual diagnosis' covers a broad spectrum of mental health and substance misuse
problems that an individual might experience concurrently. The nature of the relationship
between these two conditions is complex. Examples are:

Primary psychiatric illness leading to substance misuse;

Substance misuse that alters or worsens the course of psychiatric illness;

Intoxication and/or substance dependence leading to psychological

symptoms;

Substance misuse and/or withdrawal that leads to psychiatric symptoms

or illness.

Although this definition talks about illness and substance misuse, the term is also
used when two psychiatric illnesses are concurrent. It is sometimes applied in
other health settings to convey the presence of two or more conditions e.g.
learning disability and mental illness.

Eating Disorders

include Anorexia Nervosa, a condition that leads to severe weight loss, and Bulimia
Nervosa, a condition that combines over-eating with vomiting and 'purging'. Both disorders
are characterised by an extreme fear of being fat.
Mental illness in pregnancy
Pregnancy does not protect from mild or severe mental illness. All disorders can
occur during this time.
Neurosis
The booklet only briefly mentions neurosis and states that it is a broad term to
describe anxiety and depression and that it has been used in such a vague way
for so long that it is being used less and less.
Personality Disorders
are deeply ingrained patterns of behaviour which are inconsistent and
inflexible responses to a broad range of personal and social situations. They may
be associated with distress and problems in social functioning. There are several
types of personality disorder. For example, some people are so shy or dependent
that they find it distressing and difficult to make friends.

Other helpful definitions:

Postnatal Mental Illness

Depression can occur during and after pregnancy. It affects about one in
10 mothers. Severe depression is particularly common after childbirth
whereas mild depression is not more common after childbirth. The onset
may be sudden or gradual, and the effects vary from mild to severe. Risks
during the postnatal period include suicidal acts and harm to the infant,
which makes this an important disorder to identify and treat;

Psychosis after childbirth: Psychosis is very much more common after

childbirth and bipolar disorder is particularly common. The onset is often
sudden and, in the case of bipolar disorder, particularly close to birth.
Psychosis after childbirth affects about one mother in 500. The behaviour
of the mother may become increasingly bizarre and disturbing to those
around her and she may lose touch with reality.

Psychosis

Your ability to distinguish between what is real and what is imaginary is seriously affected.
You might hear people saying things when no one is speaking - 'hearing voices' - which
sound quite real to you. Or you may develop strong persistent beliefs of 'delusions,' which are
unbelievable to others around you who you know well.
Schizophrenia
a condition that affects the most basic mental functions that give people their
sense of individuality, uniqueness and direction. It can cause them to hallucinate

(e.g. hear voices), develop feelings of bewilderment and fear, and to believe that
their deepest thoughts, feelings and acts may be known to, or controlled by
others.
Severe and Enduring Mental Health Problems.
A mental disorder (i.e. psychotic disorders including schizophrenia, bipolar
disorder or severe neurotic conditions and personally disorders) of such intensity
that it disables people from functioning adequately as determined on the basis of
their culture and background.

Appendix 2: Assessment Toolkit

Children's Services Professionals

This first set of prompts is intended to assist all professionals delivering a service to children,
adolescents and their families when they are assessing parenting capacity:

Observation of behaviour of the parent where there is a mental health

concern (prolonged depression);

What are your observations? (Care of the child(ren), support from partner,
care of self, support systems, environment, etc);

Have you observed any concerning behaviour regarding the children?

Have you consulted with other agencies which may be involved e.g. Young
Carers, General Practitioner, Children's Centre, school nurse, Health
Visitor?

Does the parent have a known history of mental health problems?

Ask the parent about their view of their mental health problem;

Ask the parent it they have received treatment from their General
Practitioner or a Consultant Psychiatrist for their mental health problem
(record details of diagnosis, drug treatment, in-patient treatment).

NB: Children should be consulted about their thoughts and feelings. Have you
spoken to the children? What do they feel about the situation? What support do
they need? Have they been given an age appropriate explanation and
reassurance about their parent/ carers mental health problem?
Mental health professionals

This second set of prompts is intended to assist all mental health professionals (i.e. all staff,
both community and hospital based, involved in the delivery of mental health services) in
assessing parenting capacity:

What is the nature of the mental disorder or illness that affects the care of
the child(ren), e.g. psychosis, depression, personality disorder?

Does the effect of the mental disorder or illness impair the care of the
child(ren) (e.g. physical care, emotional care, stimulation, appropriate care
arrangements)?

What awareness does the parent have about the effect of their mental
health problem on the care and well being of their child(ren)?

What informal support systems are available for the care of the child(ren)?
(partner, family, voluntary agencies);

What formal support systems are available for the care of the child(ren)?
(Health Visitor, General Practitioner, Homecare, Child minder, Day
Nursery, School nurse);

Have you observed any concerning behaviour regarding the child(ren)?

Have you considered whether a CAF is required?

Have you checked whether a CAF has been completed and if there is a
Lead Professional?

Have you consulted with other agencies for example Young Carers' Project,
Health Visitor, Midwife, Family Centre, General Practitioner or Children's
Social Care when considering home leave from wards, discharge plans
etc?

Given that mental health professionals may have vital information that
could explain things to the child you should consider giving an age
appropriate explanation to the child, offering support or information that
would help them understand and asking them what support they want and
need.

Child and Adolescent Psychiatry and Mental Health main menu

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Articles

Research
Open Access
Challenges of caring for children with mental disorders: Experiences and views of
caregivers attending the outpatient clinic at Muhimbili National Hospital, Dar es
Salaam - Tanzania

Joel Semel AmbikileEmail author and

Anne Outwater

Child and Adolescent Psychiatry and Mental Health20126:16

DOI: 10.1186/1753-2000-6-16
Ambikile and Outwater; licensee BioMed Central Ltd. 2012
Received: 22 December 2011
Accepted: 4 May 2012
Published: 5 July 2012

Abstract
Background

It is estimated that world-wide up to 20% of children suffer from debilitating mental illness.
Mental disorders that pose a significant concern include learning disorders, hyperkinetic
disorders (ADHD), depression, psychosis, pervasive development disorders, attachment
disorders, anxiety disorders, conduct disorder, substance abuse and eating disorders. Living
with such children can be very stressful for caregivers in the family. Therefore, determination
of challenges of living with these children is important in the process of finding ways to help
or support caregivers to provide proper care for their children. The purpose of this study was
to explore the psychological and emotional, social, and economic challenges that parents or
guardians experience when caring for mentally ill children and what they do to address or
deal with them.
Methodology

A qualitative study design using in-depth interviews and focus group discussions was applied.
The study was conducted at the psychiatric unit of Muhimbili National Hospital in Tanzania.
Two focus groups discussions (FGDs) and 8 in-depth interviews were conducted with
caregivers who attended the psychiatric clinic with their children. Data analysis was done
using content analysis.
Results

The study revealed psychological and emotional, social, and economic challenges caregivers
endure while living with mentally ill children. Psychological and emotional challenges
included being stressed by caring tasks and having worries about the present and future life of
their children. They had feelings of sadness, and inner pain or bitterness due to the disturbing
behaviour of the children. They also experienced some communication problems with their
children due to their inability to talk. Social challenges were inadequate social services for
their children, stigma, burden of caring task, lack of public awareness of mental illness, lack
of social support, and problems with social life. The economic challenges were poverty, child
care interfering with various income generating activities in the family, and extra expenses
associated with the childs illness.

Conclusion

Caregivers of mentally ill children experience various psychological and emotional, social,
and economic challenges. Professional assistance, public awareness of mental illnesses in
children, social support by the government, private sector, and non-governmental
organizations (NGOs) are important in addressing these challenges.
Keywords
Parents challenges Caregivers challenges Children Mental disorders Mental
illness Africa Tanzania

Background
The onset and chronic presence of mental illness in the family can be a stressful event or a
crisis for family members [1]. Moving from a crisis to recovery in such families has been
found to be influenced by their interactions with mental health professionals. Families that
have ongoing contact with the mental health professionals are more likely to recover from the
crisis and cope with the situation. Home based treatment programs for children and
adolescents with mental disorders appear to be an effective and sustainable strategy for
meeting mental health needs in this group [2]. These programs would also be cost effective in
countries where the health system is overburdened with infectious diseases and where
psychiatric inpatient-care is limited. However, the success of such interventions requires
compliance of patients and parents, and support from highly skilled therapists.
Parents and guardians play a major role in helping children grow and develop to their full
potential. As children grow in the families they most significantly depend on their parents or
guardians for basic needs support such as food, shelter, education, protection and care at all
times but especially during life difficulties and times of crisis. Mental disorders in childhood
and adolescence can be chronic and very disturbing, requiring proper attention, help and
support from caregivers [3]. Thus, parents or guardians and relatives living with children with
mental illness have additional responsibilities and roles to care for them as they do for other
healthy children. In this study children means any male or female persons not more than
twelve years of age, and a parent is a biological mother or father or anybody who assumes
that role. The importance of family support for the growth and development of children and
the role it plays as a determinant of whether children will receive mental health care or not,
can not be overemphasized [4].
From the past until now the World Health Organization (WHO) mental health programme has
not given due weight to child and adolescent psychiatry as compared to adults and the elderly
[3]. Yet from a demographic and epidemiologic point of view, mental disorders in children
and adolescents represent an important area that needs proper attention. It is estimated that up
to 20% of children and adolescents suffer from debilitating mental illness [5].
There are various ways in which child and adolescent mental disorders can be considered.
One way is looking at these disorders in a priority manner based on their frequency of
occurrence, degree of impact, therapeutic possibilities, and long term care effects [3]. From
this perspective, child and adolescent mental disorders that pose a significant concern include

learning disorders, hyperkinetic disorders (ADHD), depression and its associated suicide.
Others include psychosis, pervasive development disorders, attachment disorders, anxiety
disorders, conduct disorder, substance abuse and eating disorders.
Specialized mental health services for children have not yet been established in Tanzania [6].
The few existing mental health facilities in the country are mainly for adults. Children with
mental disorders are treated in general wards and alongside adult mental patients. Psychiatric
patients (including children and adolescents) are exempt from cost sharing charges for
treatment. Medication is available but not always due to limited government support. When
not available, parents or guardians are supposed to buy medicine for their children from
private pharmacies. Moreover, the country lacks health care workers who are specialized in
child and adolescent mental health. There are very few special schools for children with
disabilities including those with mental disorders. Initiatives to advocate for social welfare of
children with disabilities are taking place and the government is aware of that.
The major aim of this study was to explore challenges parents or guardians experienced while
caring for their mentally ill children. Specifically, it aimed at identifying the psychological,
emotional, and social problems they faced by living with a mentally ill child in the family,
ways in which child mental illness interfered with economic activities in the family, and
determining ways through which parents or guardians addressed these challenges.
Parents and guardians as main family care takers play a vital role in caring for mentally ill
individuals including children and adolescents. Learning the challenges they face in caring
for children and adolescents with mental illness is the first step in identifying ways to
improve support for such caregivers. It is crucial that children receive appropriate care and
support at home and during the outpatient visit to the hospital in order to meet their mental
health needs. The scarcity of published studies in this area in Tanzania underscores the
importance of this study to contribute towards better understanding of challenges faced when
caring for mentally ill children. This study reports the psychological and emotional, social,
and economic challenges parents and caregivers experienced and their reaction to the
situation.

Methods
The study was conducted at the Psychiatric Unit of Muhimbili National Hospital (MNH) in
Dar es Salaam, the economic centre and fastest growing city in Tanzania with a population of
more than 3 million people. It has three districts namely Ilala, Kinondoni and Temeke. MNH
is located in Ilala and is the nation government referral hospital with the highest specialized
health services. It is a place where patients with complicated health problems from all over
the country can be found. The psychiatric unit is one of the departments in the directorate of
clinical services at MNH. Unlike other departments which receive referrals from all over the
country, this unit only caters for patients who are referred from the three districts. Psychiatric
services at this unit are provided in two major forms depending on age. Firstly, it is provided
for adults who receive either inpatient or outpatient care, and more serious patients who
require long term hospitalization are referred to Mirembe hospital located in Dodoma region

which is a specialized national psychiatric hospital. Secondly, there is child and adolescent
care which is usually provided on the outpatient basis. A special day has been allocated every
week (Thursday) for children and adolescents to be seen by health care providers. According
to the records obtained at the unit, about 30 children and adolescents were seen every week.
Respondents were parents or guardians who brought their children to attend the weekly
outpatient psychiatric clinic at the unit. Convenience and purposive sampling methods was
used. Respondents were recruited through the identified child and adolescent nurse counselor
working at the psychiatric unit. The first author worked together with the counselor in
recruiting respondents while waiting for their children to be seen by the health care providers.
The inclusion criterion was a parent or guardian who had lived for at least six months with
the mentally ill child. This was considered an adequate period for having reasonable
experience. Parents/guardians who met this criterion and consented were included in the
study.
Focus group discussions (FGDs) and in-depth interviews were used to gather data. A semistructured interview guide was used to interview respondents. All interviews were audiorecorded and a note book was used to take field notes. During FGDs the moderator (author)
led the discussion and kept the conversation flowing while the research assistant was
recording the interviews and taking field notes. Basic demographic data was also collected
from respondents after conducting the interviews. All interviews were transcribed verbatim.
Two FGDs and 8 in-depth interviews were conducted. The first FGD was attended by 5
respondents (all were mothers) and the second one by 6 respondents (3 fathers and 3
mothers). Eight in-depth interviews were conducted with 7 biological mothers and one
grandmother. Conducting in-depth interviews was stopped when no more information could
be obtained from caregivers. The purpose of using FGDs was to help get general information
and ideas that were further explored during in-depth interviews.
Analysis of data was done by using content analysis which consisted of reading and rereading the text, manual coding in the margins, and through memos, synthesizing and
grouping of data in relatively exhaustive categories [7]. Data was analyzed in the original
language (Swahili) in order to minimize the possibility of losing the original meaning of
concepts. Analysis of data was done by the two authors and whenever there was a
discrepancy in forming codes, categories or themes discussions were done to reach a
consensus. Additionally, the analysis process was audited by a third person who was not part
of the study but who is conversant with qualitative methods. Translation into English was
done for what was included in the report.
The ethical approval of the study was obtained from the Research and Publications
Committee of Muhimbili University of Health and Allied Sciences and permission to conduct
the study was obtained from Muhimbili National Hospital. Written informed consent was
sought from all participants prior to interview sessions.

Results
The respondents demographic data and their childrens particulars are
summarized in Table1.
Table 1

Caregivers demographic data and childrens particulars

ID. NO

CHILD
MARIT TYPE OF LEVEL OF
CHILDS
SE AG
OCCUPATI S AGE
AL
CAREGIV EDUCATI
DIAGNO
X E
ON
(YRS) /
STATUS
ER
ON
SIS
SEX

ID10501J
Aii
F

33

Married

Mother

STD VII

Home
Mother

10/F

Autism

F10424JA
F
ii

37

Married

Mother

STD VII

Home
Mother

11

Mental
retardation

STD VII

Home
Mother

7/F

Seizure
disorder &
ADHD

9/F

Seizure
disorder &
Mental
retardation

8/M

Autism &
Seizure
disorder

3/F

Seizure
disorder &
Mental
retardation

F10424JA
i

ID10501J
Ai
F

33

Widow

Mother

F10424JA
iii
ID10430J
Ai
F

36

Single

Mother

STD VII

Petty
Business

None

Home
Mother

F10424JA
iv
ID10430J
Aii
F

60

Married

Mother

F10424JA
v

ID10502J
A

51

Widow

Grandmoth
er

STD VII

Home
Mother

ID. NO

ID10503J
A

ID10504J
A

ID10506J
A

CHILD
MARIT TYPE OF LEVEL OF
CHILDS
SE AG
OCCUPATI S AGE
AL
CAREGIV EDUCATI
DIAGNO
X E
ON
(YRS) /
STATUS
ER
ON
SIS
SEX

F10508JA
M
i

33

39

42

Married

Married

Married

38 Separated

None

Petty
Business

Mother

Form IV

Catering and
Decoration

Mother

Bachelors
Degree

Police
Officer

STD VII

Vehicle
mechanic

Mother

Father

10/F

Epilepsy &
Learning
disability

11/F

Autism &
Seizure
disorder

5/M

ADHD &
Seizure
disorder

11/M

ADHD &
Mental
retardation

F10508JA
F
ii

26

Widow

Mother

None

Home
Mother

8/M

Seizure
disorder &
Mental
retardation

F10508JA
M
iii

38

Married

Father

Bachelors
Degree

Engineer

5/M

Autism

STD VII

Home
Mother

STD VII

Petty
Business

STD VII

Home
Mother

F10508JA
F
iv

F10508JA
M
v

F10508JA
F
vi

37

45

40

Married

Married

Married

Mother

Father

Mother

Epilepsy &
12/M
mental
retardation

9/F

Mental
retardation
& Epilepsy

11/M

Autism &
Seizure
disorder

NB: STD means standard (used to indicate the level of primary education e.g. STD VII
means primary education level 7, which is the highest level of primary education in
Tanzania).
Psychological and emotional challenges

Four major themes emerged from the study that explain the psychological and emotional
challenges that parents experience in the everyday life of caring for the mentally ill child.
These were: disturbing thoughts, emotional disturbance, unavoidable situation, and
communication problems.
A number of respondents revealed having disturbing thoughts about living with a mentally ill
child. They expressed being stressed by the explicit behaviour of the child that caused
problems not only for the parent but also to people nearby such as neighbours. Behaviours of
the children that were of particular concern to parents were being aggressive, destructive,
restless or hyperactive, making noise, and lack of proper eating skills. A father of a child with
autistic disorder explained:
" It is very true, its a problem, there is a problem because the way he is you can clearly see
that he completely does not fit in the community. His actions are different and, of course, not
accepted by other people. You may decide to go with him to some place, for example if you
look at the appearance of my own child you may think he is just okay. But his actions are so
disgusting (kukera) that you cant go with him anywhere; to church or so, he just has to
remain at home, its really a problem. {F10508JAiii}"
Worrying about the future life of the child was another form of disturbing thought that some
parents experienced due to the inability of the child to accomplish personal and social needs
such as self-care and education. They showed these concerns when the child could not do
certain developmental tasks expected at specific ages such as feeding, toileting, bathing, and
dressing, as expressed by a mother of a child with autistic disorder:
" Truly, what I am afraid of is that it will be more difficult later in life. This is what makes
me fail to sleep all the days, I keep thinking only about that and my husband and I quarrel
about that everyday. Just imagine, now you have to wash her since she soils herself with
faeces and urine, now when she grows up it will become a very big task, it will really become
a big task. My greatest concern is after menarche (kuvunja ungo); what I am thinking of is
after menarche and this is a big test. {ID10501JAi}"
Parents were also disturbed by the complexity of caring responsibilities that demanded a lot
of work and being available most of time to meet the daily needs of the child. The issues
about how to handle the child and ensure security if the parent died was expressed by one
father of a child with mental retardation and epilepsy:
" I accept to be meek and gentle because I know it is God who has intended for the matter
to be like this, but its a big burden to me because that child is always restless. He can not
even sit down with others for a minute, he likes seeing himself wandering and he feels good.

So in the process of wandering he gets lost, and there we are staying near the road. Therefore
the mother doesnt do anything other than looking after (kumwangalia) the child all the days
of her life for two years now, and we dont know what will happen in the future.
{F10508JAv}"
A mother of a child with ADHD and seizure disorder said,
" Until now I dont know how my childs condition will be if, lets say I die. This is because I
dont have any sister, mother, or father who can take care of my child in that condition
lets say I die now, I dont think she will be in a better condition {ID10501JAi}"
Living with a mentally ill child was described as emotionally distressful by parents. Varying
degrees of emotional distress were experienced which included having feelings of sadness
and inner pain or bitterness. Parents experienced these negative emotions due to disturbing
behaviour of the children, extra care-giving responsibilities, family and social problems
caused by the child, and peoples perception about families having a mentally ill child. A sad
mother of a child with autism explained:
" I really somehow grieve (sononeka), I just accepted it (having a mentally ill child), but I
really grieve because I really suffer (pata shida) a lot from this childnow when I look at
this child with disability and the challenges of care, it makes me grieve {ID410501JAii}"
Parents described living with or having a mentally ill child as a disturbing and yet
unavoidable situation. They had to accept it since they had no other alternative. They viewed
their caring duty for the child as very difficult and distressing. This was stated by some
participants when they were responding to the question about how they generally viewed the
situation of having a mentally ill child at home. One mother of a child with autistic disorder
said,
" Really I have accepted it because I have already been given, but its a big task, its a very
big task to care for a child with mental disability. {F10424JAi}"
Another mother of a child with mental retardation and seizure disorder emphasized:
" yes we have been disgusted (tunakerwa), but God has already planned it for you, and
you have no any other way . {F10508JAii}"
The inability of the child to express needs was another source of psychological and emotional
distress associated with living with mentally ill children. This caused parents to be unable to
understand the child especially when he/she had problems. Sometimes when the child went
out, he/she was mistreated by other people and returned home crying. When he/she was asked
by the parent to explain what happened he/she couldnt explain, as expressed by a father of a
child with autism:

" The challenge I face is that that child can not express his needs Sometimes he may be
sick and you dont know, he just cries, when he has problems he just ends up crying. Now you
dont know why he is crying, and sometimes when you touch him and feel that he is hot then
you may guess that this could be malaria and take him to hospital. But when he has like
stomach ache you cant understand, you just see him crying, {F10508JAiii}"
Social challenges

Caring for a child with mental illness was found to be associated with many social
challenges. Social services, stigma and caring responsibilities were areas which posed major
concerns for parents. Other important issues included a lack of public awareness, social
support, and social life.
Inadequate social services for children with mental disorders was the most challenging issue
for parents. They were concerned about education for the child and to a lesser degree hospital
care. The most distressing aspect was inability of the child to acquire education due to an
inadequate number of schools. Parents spent a lot of time looking for schools that could
accommodate the child as explained by a mother of a child with mental retardation and
seizure disorder:
" I was told to take her to Uhuru Mchanganyiko (primary school for children with
various disabilities); I went there because she has mental and visual problems. When I got
there they told me they would not accept the child and that I should take her to Mtoni Special
School (another school for disabled children). Until now, when I go to Mtoni special school
they tell me there is no vacancy. There are no school opportunities for these children or their
schools are very few, you see. {F10424JAiv}"
Parents whose children were lucky to be recruited in the special schools were experiencing
other problems. Their children could not understand anything that was taught at school and
had transport problems especially because of the traffic congestion in the city of Dar es
Salaam. They could not take their children to school because they could not afford bus fare,
as explained by the mother of a child with autism and seizure disorder:
" She goes to school but she doesnt understand she just goes to school but there is
nothing she understands at school {ID10504JA}"
Another mother of a child with autism and seizure disorder added:
" The first difficult thing about it is that I havent found the school. Money is needed, as he
(the child) is supposed to stay there (at school) because we can not afford for him going and
coming back since we are not able to. Schools like Buguruni require having money.
{ID10430JAii}"
With regard to health care services, parents were generally satisfied with services at the MNH
Psychiatric Unit, as expressed by the mother of a child with epilepsy and learning disability:

" The service she (the child) receives is really good, they do their best at the hospitalI am
satisfied with this service. {ID10503JA}"
However parents complained about: long waiting periods before they were seen by the
doctor, spending too little time with the doctor, out of stock medications, lack of speech
therapists in the country, and lack of proper facilities such as toilets. A mother of a child with
seizure disorder and mental retardation complained:
" With hospital services, for example it is very far where I come from, you can arrive there
(at the clinic) maybe at 8:00AM. From that time you may see the doctor may be at 11:00AM.
So it really becomes a problem because you sometimes leave home before the child had tea.
Now you stay there with the child until 11:00AM, it becomes a problemI would like that if
we just get there we should be seen early, then we leave. Sometimes you may stay there for a
long time and because of hunger the child starts troubling you, it really is a problem. I was
not happy with that thing, the toilet, it should have been a squat toilet (choo cha chini) (as
opposed to western type) the normal one, that would have been good. {ID10430JAi}"
Living with mentally ill children was found to be associated with stigma. Parents were
troubled by the mentally ill child being mistreated, discriminated against and segregated in
the community. Sometimes the child was told words that made him/her feel bad. Parents were
laughed at and told bad things about the child.
The child was mistreated by people in various ways. Sometimes he/she was labelled and
made fun of at school, considered to be useless and even rejected by the parent because of the
disability. A mother of a child with epilepsy and learning disorder explained:
" My child is in primary school, she goes to school and comes back complaining that she
is being called a crazy person (tahira). She really feels bad (anajisikia vibaya) and when she
comes to the hospital she tells her doctors {ID10503JA}"
Parents were sometimes held responsible for the childs behaviour. They were thought to be
spoiling the child by not being strict enough when the child was behaving strangely.
Furthermore, some parents were told they had caused the child to become mentally ill as a
means of getting rich and becoming successful in life (it is common to see disabled children
with their parents in the streets begging). A father of a child with ADHD and mental
retardation explained with sadness:
" Let me add to what I have said. It is true, according to the prevailing situation when
people see those children the majority of them say we have caused them to become sick as
way of getting money and becoming successful in life. {F10508JAi}"
The burden of caring for the mentally ill child was found to be mainly borne by the mother.
Mothers complained about the role that fathers played in everyday care of the child. They
expressed that some fathers were only supporting the child financially and others did not care

at all. The grandmother who was taking care of the child with seizure disorder and mental
retardation whose mother was dead commented:
" Now the burden of care is upon me. The father doesnt love her (the child) very much.
Sometimes you may tell him that you have a problem with the child and he will tell you to just
wait. Now thats just like totally not being involved in the care of the child. {ID10502JA}"
Ignorance about mental disorders was perceived by caregivers to be common in the
community. Some children with mental illness and their parents suffered stigma and
mistreatment out of ignorance. A mother of a child with autism and seizure disorder
explained:
" The public should understand these children. If you go with her to some place everybody
is surprised, you know, even the child wonders why they get surprised at her. They really
dont understand and I dont know how. They think its something that does not exist
{ID10504JA}"
Parents in this study expressed their concern about not receiving the needed support from
neighbours and people in the community. Some people could not even give help when they
found the child in a critical condition like having seizures. One mother of a child with autism
complained that people sitting in the commuter bus would not help her by giving her a seat
when she was standing with the child on her back.
" I have to carry the child from home, board the bus somebody in the bus may see you
carrying the child while you are standing without even letting you sit. {F10424JAi}"
The social life of parents was found to be disrupted by the presence of a mentally ill child in
the family. Sometimes parents avoided going with the child to social gatherings such as
church because of the childs disturbing behaviour. Parents also experienced conflicts in the
community and sometimes were even accused when the child destroyed somebodys
property. This created tension and resulted in lack of peace especially with people like
neighbours. Sometimes the love life of a mother was affected for reasons related to having a
mentally ill child. One mother of a child with ADHD and seizure disorder who avoided
having another child with a new partner in case she was overwhelmed by caring
responsibilities explained:
" Who knows? He (the partner) went to see his friends there they said to him, How
can you stay with a woman and just take care of her child? After all she (the child) is crazy,
and so on. She doesnt want to have a child with you, I dont know what! Then that person
(the partner) ran away from me, we were staying in the same room. {ID10502JA}"
It was noted that mentally ill children were vulnerable and suffered mistreatment from people
by being beaten, pushed, and burned. The child who could not speak seemed to be more
vulnerable since he/she could not mention a person who was responsible for the cruel action
when parents wanted to know. A mother of a child with ADHD and seizure disorder said,

" may be she (the child) goes and touches somebodys property, or in doing so she makes
somebodys water dirty. The owner will come out with anger and will beat the child with a
fist in the head or pinch her knowing that the child will not say. The child comes back crying
and when you ask her she doesnt understand you. {F10424JAiii}"
These children were also reported to be at risk of being physically and sexually abused such
as being burned or raped as explained by a mother of a child with seizure disorder and mental
retardation:
" for example, one day I left my child with the house girl. She dared to take the spoon that
she was using for frying and applied it on the childs skin. When I came back I found the
child with marks of wounds on the bodythere is another child in the neighbourhood
who is also disabled. That day her mother went to the field in the morning leaving the child
still asleep with instructions to follow her to the field. When that child got out to follow her
mother there was a man nearby who called her into his house and did to her a very bad thing
(shedding tears), just last weekhe raped her. We really need to be very close to these
children. The issue of being raped makes us to be with them so that they dont suffer such
actions {F10424JAiv}"
Economic challenges

Three major themes emerged that explained how living with a mentally ill child interfered
with economic activities of the families. These were: existing poverty, interference with
various income generating activities, and extra expenditure due to the illness.
Poverty was revealed by parents as being responsible for their inability to meet certain
important needs of the mentally ill child. Some parents were house wives who did not have
any means of earning income and depended solely on their partners; those who did not have
partners expected to get help from other people, especially relatives. This was a problem if
they could not get the help they needed. They (including fathers) could not manage buying
drugs for their children when they did not receive them at the hospital. They also could not
afford bus fare to attend the clinic with their children on the day of their appointment. A
mother of a child with autism explained:
" From here you may go to the hospitals drug unityou may find that you get only one
type of drugs while you have a prescription of two or three drugs If you go to a (private)
pharmacy you find that its 500 shillings (US$ 0.36) per pill. Now with our income in this
situation; house rent, water bills, everything, transport charges, you may reach a point where
I once spoke with my mouth, and may God forgive me, that instead of giving me these
problems he should have taken him (the child), I reached that point {F10508JAi}"
Daily life and activities of parents in this study were very much affected by the presence a
mentally ill child. Much time was spent looking after the child and as a result they were not
able to do other important activities such as business. Income generation in the family was

affected and this further escalated family poverty as explained by a mother of a child with
seizure disorder and mental retardation:
" Care responsibilities for such children are very cumbersome; you need to stay with them
for a very long time so that you watch over them from morning till evening. Your activities
will be limited only to the home environment; you cant go out for activities to earn a living
apart from being home. {F10424JAiv}"
Measures to address challenges

Parents expressed various ways they used in order to address the challenges they were facing
by living with a mentally ill child. A variety of coping mechanisms were employed in
different situations depending on what seemed to be helpful to the parents. They sought
professional and spiritual help (from religion and traditional healers). One mother whose
child is afflicted with autism and seizure disorder expressed:
" It is the hospital, its the hospital that has helped her (the child) to be honest. If it was not
for the hospital her condition would have been worse. I have done everything I could; I have
not stopped going to the hospital since she begun having the problem. It is 11years now she
is on medication {ID10504JA}"
Other measures parents took included training the child to do what she/he could not do such
as toilet training and speaking, involving other family members such as siblings in the care of
the child, and seeking information about the childs disorder from sources like the internet.
Due to the nature of some disorders and the behaviour displayed by the child, some
caregivers tried to control the childs environment for safety reasons.
The focus group discussions and in-depth interviews served as psychological relief for
parents as they had the opportunity for somebody to listen to them. After a FGD one
respondent who had a child with autism gave a comment which was supported by the rest:
" Just having somebody listen to you like this makes you feel better. {FN10508JA}"
This was also the case at the end of an in-depth interview with another respondent whose
child was afflicted with ADHD and seizure disorder:
" Thank you very much Mr. Joel (the author), I am also happy because I have at least had
someone to listen to me, I have never had such opportunity. {ID10506JA}"

Discussion
The findings of this study revealed various psychological, social and economic challenges
that parents experienced in living with a mentally ill child. Some of the key themes found in
the peer review literature with respect to experiences and needs of families of individuals
with mental illness [8] also emerged in this study.

Psychological and emotional challenges

The psychological and emotional challenges experienced by parents in this study are similar
to what was found in the United States [9] where mothers of children with serious mental
illness had concerns about the future of their children due to the childs special needs, erratic
or worsening of behaviour, and long term consequences. Similar stressful experiences were
also reported by parents of children with autism [10] and intellectual disability [11, 12].
Emotional experience of sadness, and inner pain or bitterness associated with having a
mentally ill child differs from a previous study in the United States [9], where emotional
strain was expressed by mothers as having fears, frustrations, and guilt in dealing with the
childs behaviour and attitude. Parents had similar communication problem with their
children as in the United States and United Kingdom [13, 14]. Lack of speech and language
therapists is a problem experienced not only in a low income country, but in high income
countries as well.
Providing psychological and emotional support for caregivers of mentally ill children should
be considered to give them some relief from distress. One of the ways to achieve this is
creating the environment for health professionals to be working closely with caregivers to
effectively treat their childrens mental illness [15]. Provision of information through
booklets on how to manage the child can be helpful [12]. Nurses can also play a role in
providing social and emotional support [9]. Working closely with mental health professionals
facilitates recovery of families with mentally ill children from crises and coping with the
situation [1].
Social challenges

Challenges of inadequate social services experienced by parents in this study are similar to
research conducted in the United Kingdom [14] but different from another study [10] where
parents reported high proportion of their autistic children living in residential provisions
including weekly boarding at the school. This entails the need for the government, private
sector, and non-governmental organizations to consider school expansion programs for
people with disabilities such as children with mental disorders.
Parents in this study were actually advocating for boarding schools for their children, though
this contradicts with the existing evidence that home based treatment program for children
and adolescents with mental disorders appears to be an effective and sustainable strategy for
meeting their mental health needs [2]. Since the success of home based care interventions
requires compliance of patient and parents, and support from highly skilled therapists [2],
provision of professional support to caregivers could alleviate the burden of care. Respite
services, which no parent reported receiving, might be helpful in these cases since it is one of
the perceived needs of families in dealing with challenging behaviour of children [16]. Other
interventions such as establishing day care centres for such children could bring relief to
caregivers as it would save much time spent to look after them and in turn this precious time
could be used for other productive activities. Moreover, systems such as hospitals and schools
need to connect in evidence based practice for effective interventions such as reaching
children in their natural settings, designing interventions that fit into these contexts, and

working with families and local communities [4]. Special education for such children is very
important as far as parents in this study were concerned.
Stigma experienced in this study has also been reported in other settings [3, 17, 18]. Public
awareness programs about children with mental disorders at all levels of society is necessary
in order to reduce stigma. Structure of mental health services need to be improved to reduce
issues of dissatisfaction by clients. More speech therapists need to be trained and made
available.
The vulnerability of mentally ill children for being physically and sexually abused is an
important issue that needs to be well addressed. Tanzania ratified the Convention on the
Rights of the Child in 1991 and since then children have survival rights, development rights,
protection rights, participation rights, and the right not to be discriminated against. However
these rights have often been violated by the community, parents, and guardians. Particularly,
deficiencies in enforcement of the laws concerning children have contributed to denial of
these rights. [19]. Although some legal actions against perpetuators of child abuse were
reported in this study, more efforts are needed for the government and local communities to
protect these children. Enforcement of laws that protect children need to be strengthened
[20]. Measures need to be taken to promote the rights of the child such as mobilizing the
community against harmful traditional practices and making parents accountable for caring
for their children [19]. All these measures are in accordance with the Universal Declaration of
Human Rights [21].
Economic challenges

The economic challenges that caregivers experienced in this study were mainly due to
poverty, child care interfering with various activities such as business, and extra expenses
associated with the illness. Similar poverty challenges were experienced by families of
children with intellectual disabilitties in United Kingdom [22] when they were compared to
families without such a child. Child care interfering with various activities corresponds with a
study in Australia [23] where caregivers experienced disruption to achieve their own
goals/dreams. Challenges due to poverty could be addressed by providing financial
assistance, food and clothing [24]. But the best way to help these caregivers may be to
facilitate acquisition of adequate time for them to do their own income generating activities.
This can be achieved by providing respite services and establishing day care centres for their
ill children so that they do not spent so much time looking after them, and by providing loans
and perhaps training them to start some form of business. These are actually some of the
ideas they suggested during the interviews, and the government, private sector, and NGOs
could investigate the possibility of providing such economic support.
Measures to address challenges

Parents took various measures in order to deal with challenges they faced in living with the
mentally ill child. They sought professional assistance from the hospital, spiritual help from
their religious leaders and traditional healers, and involved other family members in child
care. They also trained the child to do self-care, sought information from the internet,

received advice from experienced parents, and tried to control the childs environment. These
measures correspond with some accommodation variables of the eco-cultural model [25]
which explains how families respond and cope with having a member with chronic disability.
Limitations of the study

This study explains experiences of caregivers in the given setting and nature of disorders
suffered by their children. It is at the readers discretion to see how the results can be applied
in other similar settings and circumstances.

Conclusion
Caregivers of children with mental disorders experience many psychological, social, and
economic challenges. These include stress, worries, sadness, grief, bitterness, inadequate
special schools for their ill children, stigma, lack of social support, disruption in social life
and poverty. Professional assistance, public awareness of mental illnesses in children, social
and financial support by the government, private sector, and NGOs are important in
addressing these challenges.

Abbreviations
ADHD:

Attention Deficit Hyperactive Disorder

DSM-IV-TR:

Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, Text Revision. (A
classification system of mental disorders published by the American Psychiatric
Association {APA} that includes all currently recognized mental health disorders.)
FGDs:

Focus group discussions

IEC:

Information, Education, and Communication

MNH:

Muhimbili National Hospital

NGOs:

Non Governmental Organizations

WHO:

World Health Organization

ID10430JAi/ F10508JAi:

Represents a quote from the participants

ID:

stands for in-depth interview and F for focus group discussion. The following two
digits in each case stand for the year of interview the next one digit is for the month
and the other next two digits for the date. The following capital letters (JA) stand for
initials of the name of the moderator and the last small letters (i or ii), if any, stands
for whether it was the first or second interview/discussion done on that same day.
Example: ID10430JAi:

means in-depth interview conducted in the year 2010 on April 30th. The moderator
was Joel Ambikile and it was the first in-depth interview on that day.

Declarations
Acknowledgment

Much appreciation goes to the Embassy of Germany in Tanzania who provided financial
support for this study through the Germany Academic Exchange Service (DAAD) program. A
lot of thanks go to Dr. Columba Mbekenga for the important role she played in auditing the
whole process of data analysis. Dr. Khadija Malimas contribution to research proposal
writing was helpfu. Mr. Masunga Kidula Iseselo helped in data collection and conducting
interviews. Finally, thanks go to Muhimbili National Hospital where the study was
conducted.
Competing interests

The authors declare that they have no competing interests.

Authors contributions

JSA did all the work from research proposal development, data collection and analysis, and
report writing. Dr. AO supervised the whole work from proposal development, ensuring
proper data collection instruments, relevant data analysis method, and adherence to ethical
issues and paper writing skills. She was involved in the step by step process of data analysis
and formation of themes.
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Remodelling the Village: Supporting

Parents with Mental Illness
By Donna Hardaker
Network, Winter 2007
It takes a whole village to raise a child.
Yoruba proverb
This familiar proverb describes the duality of the life stage of parenting: when adults who are
raising dependent children are themselves dependent on their community for resources, time,
help and knowledge. When parents have a mental illness, what does the village look like?
For some it is a ghost town of isolation, poverty and fragmented resources. For others it is a
comprehensive and rich network of people and services pulling together to support the
fledgling family. This disparity exists in Ontario because there is no formal or integrated
system of assistance, education and support for parents who have a mental illness. Parents
manage as best they can with available supports, a situation that for many creates an uphill
battle to provide materially and emotionally for their children.
What does it mean to be a parent and to have a mental illness? Research shows that parents
who have mental illness are at greater risk of poverty and isolation, two significant social
determinants of health. Poverty occurs because of difficulty maintaining steady employment
through episodes of illness, and subsequent reliance on government income supports.
Isolation happens because of breakdown in social supports: extended family may be
estranged, friends may have drifted away, and marital relationships may not be able to
withstand the strain when a partner has a mental illness.
Parents with mental illness feel as much boundless joy, boiling frustration and bone-deep
worry as other parents. And they often experience this with an extra layer of guilt, fear and
loss that other parents may not experience guilt for not being like other parents, fear of
losing their children, and loss of the dream of offering their children a normal childhood.
Angela Perin (not her real name) was a loving, patient and joyful mother. She was in a stable
and loving marital relationship with her childrens father, who was well-employed and
devoted to her and their children. She had supportive friends and extended family. Her boys
were healthy and thriving. Perin had severe anxiety which she hid from the outside world as
she coped with it, coupled with depression due to post-traumatic stress disorder (PTSD) that
surfaced shortly after the birth of her second child. She organized her life with her two small
children so that she could stay inside when she needed to, screen phone calls, and limit social
time. She and her husband searched for a house that had a large, fenced backyard so that her
two boys could play safely while she watched from inside the house.
Perin was terrified that her children would be taken away from her by child welfare if they
knew about the extent of the anxiety and depression she lived with every day. She was afraid
to tell her psychotherapist about her suicidal and homicidal thoughts. I lived in a personal
hell, bravely smiling through the day and playing Lego with my boys while battling the
chattering sounds in my head. At that time I believed that medication was for crazy people
and crazy people were not allowed to keep their children. The stigma and the fear of being

marked unstable forced Perin into a form of hiding. It would be years before she received the
medication she needed to begin to truly feel well.
Perins fear of losing her children was not unfounded even though it was unlikely in her case.
Removing children from the parent happens too often when parents have a mental illness,
according to Eliana Suarez, who worked until recently on an Assertive Community Treatment
team at the Canadian Mental Health Association (CMHA), Toronto Branch. Now a PhD
student in social work at the University of Toronto, Suarez believes that adult mental health
services can play a key role in keeping families together, if mental health workers integrate
parenting into the treatment plan for their clients. Mental health agencies, as members of the
village surrounding the parent, can view their clients not just as people with a mental illness,
but also as parents. In an unpublished research paper, Suarez suggests a model of case
management that uses parenting as an element of recovery, where the client develops
structured plans and goals. Just as the ability to maintain stable housing, maintain self care
and symptom control, build social relationships and find meaningful activity are aspects of
recovery already used in case management for people with serious mental illness, so
parenting could be added to this list. Parents could be identified, assessed for need, and
supported to develop competence, especially in the ability to coordinate services for their
families between the mental health and the child welfare systems.
The fractured village that surrounded Wendy Houle did not meet her familys needs. Houle
believes that her family fell though the cracks between adult mental health services and
childrens aid services. Houle has severe depression, physical ailments and also has been
through a transgender experience. Houle fathered four children in a marriage before
transgendering from male to female, and battled severe depression during the separation and
divorce from the mother of the children. Houle then received custody of the children, and as a
single parent with severe depression, found that social service agencies were fragmented and
seemed to be fighting against each other instead of working together to help her family stay
intact.
The social worker just crossed her arms and asked me, So what can we do for you? and I
had to ask her back, What do you have to help us? But there was no answer. Their services
sound great on pamphlets, but it was like pulling teeth to find out what they can do for you.
The Ministry of Community and Social Services recommended more service time for us, but
we never got it.
When Houle needed hospitalization because she was suicidal, the children were taken into
care by the childrens aid society. Wendy believes that with greater cooperation between the
service agencies, her family could have had fewer separations and trauma. Her children, who
are now all over 18, have said that Houles depression was more troubling to them than her
transgender process. Houle currently uses services at CMHA, Sault Ste. Marie Branch, where
the staff are wonderful, she says. They know about me and they know my children. They
are very supportive and understanding.
The primary goal of the child welfare system is protection of the child, says Michael Shultz,
City of Toronto branch manager for the Catholic Childrens Aid Society (CCAS). But the
child protection worker wears two hats, he continues. Theres the authority role that is
engendered in the power to remove a child. Then there is the helping role. The art of being a
good child welfare worker is being able to balance those roles. Removal of children is viewed
as a last resort. According to Shultz, most families that CCAS is in contact with are intact.

Shultz sees his workers facing significant challenges. There are times when others in the
community expect child welfare to deal with all these complex issues that require a teamwork
approach with collateral community services. He believes that communication between
service agencies is key. Yet there are no formal cross-system structures to ensure this
communication takes place in all cases. His staff often need to create their own links between
service systems. One child welfare worker, for example, attends meetings that include the
parent and the parents mental health worker, to guarantee that they are all on the same
page. Shultz says that this kind of engagement, although highly effective, is also very timeconsuming and eats up the limited resources of his agency. It also is dependent on the energy,
resourcefulness and creative thinking of individual staff. Not all families may be so lucky to
be assigned a worker who can apply this kind of effort.
David Clodman, a social worker at the Centre for Addiction and Mental Health (CAMH),
agrees that the separate hierarchies, budgets, standard operating procedures, responsibilities
and accountabilities of the mental health and child welfare systems present significant
barriers to integration in service delivery. There doesnt seem to be a focused effort in Ontario
to overcome those barriers, he observes, unlike the transformation initiative in British
Columbia, where the BC Ministry of Children and Family Development has implemented
legislation and policy devoted to the integration of family services. He says its hard to
convince administrators of the value of labour-intensive programs that bridge the two systems
when the successes are evident mostly in the long term.
In the meantime, Clodman says, We need to work harder at trying to integrate services by
training our [mental health] workers to ask basic questions like: Is there a child at home?
When you leave the hospital will you be moving back into the role of caring for someone
else? I dont think our system is traditionally geared to asking these kinds of questions.
These questions may be the perfect place for adult mental health workers to start
implementing Suarezs ideas about parenting as a recovery issue and a rehabilitative factor in
the outpatient treatment plan.
When formal supports dont exist in the village, people with mental illness must create their
own or find alternatives. Jeanette Law of Sault Ste. Marie, a single mother of two, was
diagnosed with clinical depression, seasonal affective disorder (SAD) and PTSD when she
was 24. She had no family supports and relied on a friend to take care of her children while
she was hospitalized.
My friend was amazing. She had little ones of her own, but took mine while I was in the
hospital. And when I got out and if she didnt see me for a while, she might come over and do
dishes for me, or she might sit with me while I did my dishes. She might remind me that I
needed a bath because self-care was a big problem. Or shed say, lets go do something with
the kids. She helped me so much. I dont know what I would have done without her.
Law describes the fear of losing her children: If you are in the hospital for four to six weeks
and youre afraid that your kids wont be there when you get out, youre going to be sicker
for longer. That stress is there. So a lot of people dont say Im suicidal and I need
hospitalization. They just stay home and suffer, and the kids are suffering in the long run.
Law believes that many parents dont get the treatment they need and the hospitalization they
may require because they are afraid of losing their children.

Law also credits a program of parental relief provided by the Childrens Aid Society with
preventing more frequent hospitalizations. Every few months she would request parental
relief and her children would be taken to a foster home for the weekend so she could get
some rest. As a single parent she was on duty 24-7 and desperately needed the break. They
let me check out the foster home and make sure it was nice. I wasnt going to leave my kids
just any place.
Jennifer Jacobson, who has bipolar disorder, relies on her parents. She has experienced the
trauma of being separated from her son while hospitalized during a manic episode when he
was just 18 months old. My parents brought my son to the hospital and at first it didnt faze
me because I was so manic, but when I got back under control, I was very embarrassed. It
was terrible.
Jacobson was separated from her husband at the time of her hospitalization and relied heavily
on her parents for support. She lived with them until she was able to return to work and
eventually purchase her own home. She still keeps a room in her parents house with spare
clothes for her and her son. She is able to maintain her privacy and independence, with the
security of having a safe place to stay if she becomes unwell.
Sandy Russell of Sarnia, Ontario, lives with anxiety and depression. She also parents a child
with severe mental illness. Russell has three sons, and a daughter who has been diagnosed
with schizophrenia. When Russell was hospitalized for depression when the children were
young, it was very hard on the family, especially on her daughter who relied on Russell for
almost all her needs. When asked if she experienced any discrimination because of her
depression, Russell mentions reactions from her daughters school: They occasionally
dismissed me as a flake in the school system because they knew of my depression. But
Russell believes that parents with mental illness need to be open about their illness and, even
though it can be difficult, to ask for help.
Doris Bazinet would agree. She is a client of CMHA, Cochrane-Timiskaming Branch and the
mother of two daughters. Her severe anxiety and agoraphobia, which hit when her eldest
daughter was two years old, have prevented her from doing many things that most parents
take for granted. At one point she didnt leave the house for three years, and she still doesnt
go outside her house alone. Her mental illness began very suddenly and changed her life
drastically: I had been a very outgoing person, then I became just this person at home. If
someone came to the door I wouldnt answer it. Strangers were a no-no. Even now I can see
the strain this puts on my husband.
Bazinet feels sad and very guilty that she wasnt able to participate in her childrens lives the
way she wanted to. I wasnt one of those parents always helping out at the school. And I feel
now that I kind of interfere with my childrens plans I mean, heres mom and she cant do
anything outside on her own.
Robin is Bazinets 19-year-old daughter, in her first year at Nipissing University. Robin
believes that her childhood was pretty normal. I was too young to know my mom any
differently. Robins experience of her mothers significant challenges and needs are balanced
by what Robin perceives as rewards. Whereas many of Robins friends regretted not having
time with their parents, those friends thought that Robin was lucky to have a mom to hang out
with. Im really thankful because a lot of my friends parents are hardly ever home. My mom
is around for everything, and shes my best friend.

Bazinet and her family are very open about her mental illness. All Robins friends know
about it, as do their neighbours and friends. Robin says its not embarrassing at all, and she
did research on her own to better understand what her mother was going through. Bazinet
suggests that families be open and not ashamed of the parent who has the mental illness. Its
amazing how many other people you find when youre open about it, people who appreciate
your openness. They often tell me that its nice to know that somebody else is going through
it too. Ive always been a very caring person who likes to help others. Ive missed out on so
much of that. I hope sharing my story can help somebody.
While mental health researchers and clinicians have developed a better understanding of
mental illness as a family issue, our adult mental health, childrens welfare and legal systems
have not changed in stride to meet family needs. The separate and sometimes adversarial
nature of these systems is a far cry from the model of a whole village working together for
the well-being of children and their parents. It will be difficult to integrate, but not
impossible, as the British Columbia experience has shown. A way needs to be found to
educate, encourage and support informal relationships of family, friends and neighbours, in
order to minimize the need for formal services. Whether a parent has social supports in the
community should not be based on luck.
Ontario needs to overcome the challenges of building villages so that every child, especially
those whose parents have a mental illness, can receive the uninterrupted nurturing of a caring
community.
Donna Hardaker is a community mental health analyst with CMHA Ontario.

FATHERS
In her work with adults with severe and persistent mental illness, Eliana Suarez found that
generally mothers never gave up trying to keep connected to their children and expressed a
keen desire to be competent parents. Sadly, she rarely found that fathers with mental illness
stayed in contact with their children. Fathers seem to accept a concept of themselves as
being unable to work, unable to support themselves and unable to be a father.
David Carmichael, who does not fit this common male pattern, found that he had to fight to
be recognized as a father by social welfare systems. When Carmichael was first diagnosed
with severe depression, he didnt believe he was ill enough to apply and be accepted for longterm disability benefits from his employer. Instead he ended up on welfare, and eventually on
the Ontario Disability Support Program (ODSP).
Carmichael has joint custody of his two daughters and has had his battles with ODSP officials
to be recognized as a participating parent in their lives. Initially, on welfare he received
benefits for a single male, amounting to $361 per month. David appealed and eventually
received additional benefits to support his daughters. On ODSP, he applied for and received
benefits to help with his daughters, until another hearing determined that David was overpaid,
even though legally he has to live in a two-bedroom apartment to meet the requirements of
the family court ruling. As a result of the unfavourable ODSP hearing, the program demanded
the return of thousands of dollars in benefits, which David is paying back at $50 a month.
The family court system and the income support system are clearly at odds in Davids case.

David laughs grimly: The ODSP arbitrator commended me on being such a devoted parent,
then ruled against me.

PARENTING RESOURCE GROUPS

David Clodman runs a group at the Centre for Addiction and Mental Health called Getting
Ready for Kids that educates and supports people with mental illness who are planning for or
expecting a child. He says he teaches members to interact with the child welfare system
ahead of time, to possibly prevent some of the anger, frustration and helplessness that clients
often feel when they interact with Ontarios confusing legal and social support system. He
found that it was difficult to get clients who were already parents to attend a parenting group,
as referrals were made based on two strikes against them: they had the stigma of having a
mental illness and they were identified as having difficulties with parenting. One of our
objectives is to try and build up some positive experience with members that its safe and
okay to interact with the mental health system.
For more information about Getting Ready for Kids, contact David Clodman at 416-5358501 ext. 7559.
The Child Development Institute runs a group called Mothering after Trauma, for mothers
who have experienced childhood trauma or domestic violence as adults. Michael Shultz says
that this group helps meet the needs of many parents they see at the Catholic Childrens Aid
Society who have experienced major trauma in their lives through abuse or because they are
products of the child welfare system themselves, and bear scars from this experience. A
history of trauma is common among people with mental health and addiction issues.
For more information about Mothering after Trauma, contact Michael Shultz at 416-3951600.