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Supporting children and young people with psychosis and schizophrenia

Information for parents and carers to support children and young people with psychosis and schizophrenia.

What is schizophrenia and psychosis?

Schizophrenia is a mental health disorder and is the most common form of psychosis. Schizophrenia affects thoughts, emotions and behaviour and results in experiences that are different from what others experience as reality, without the sufferer being aware that this is the case. This means that people with schizophrenia may see, hear or believe things that others cannot. The exact cause of schizophrenia is unknown, although it has been related to chemical imbalances within the brain, and genetics plays a part. Recent work suggests that there may also sometimes be overactivity in the immune system that affects the brain. Episodes of psychosis may be mild and non-recurring or may become chronic and lead to significant impairments in an individual’s daily life.

Signs that a child or young person may be affected by psychosis or schizophrenia

The symptoms experienced by people who have schizophrenia may differ. However, they can generally be divided into two groups, namely ‘positive symptoms’ and ‘negative symptoms.’ ‘Positive symptoms’ are not ‘good’ but relate to ‘additional’ experiences that would not ordinarily happen, while ‘negative symptoms’ refer to the loss of functions that mostly we take for granted.  Young people with schizophrenia may experience a mix of both positive and negative symptoms.

  • Positive symptoms: There are various subcategories of positive symptoms that a child or young person with schizophrenia may experience, including strange beliefs or delusions, thought disorders and/or hallucinations. People with schizophrenia may have very strong beliefs that are both untrue and sometimes bizarre, such as believing someone is “out to get them.” They may also experience difficulties in thinking rationally, and it can be hard to understand or make sense of what a child or young person experiencing psychosis is saying. It may appear as if their ideas are completely disorganised.

Children and young people with schizophrenia may also experience hallucinations, where they may see, hear, smell or feel something that is not actually there. Hearing voices is one of the most common and most distressing as these experiences are completely real to the person suffering. You may, therefore, notice children or young people behaving strangely or seemingly talk or laugh with someone that you cannot see.

  • Negative symptoms: In contrast to the positive symptoms mentioned above, children and young people with schizophrenia may also become very withdrawn and appear unemotional. It may seem that they lose interest in themselves and others, leading to poor hygiene and isolation. You may find that a child or young person with schizophrenia struggles to organise themselves in their daily lives, especially when trying to concentrate on studies or work.

  • Other symptoms: Sometimes, children and young people with schizophrenia may become very frustrated or angry towards the people around them. This may make them come across as unpredictable and worrying, especially when they themselves are scared of the strange experiences happening to them. In some cases, people with schizophrenia may self-harm, or use alcohol and drugs to try and cope with the distressing symptoms.

It is important to note that having some of these symptoms may not necessarily mean a child or young person has schizophrenia or psychosis. However, as children and young people may not always be able to distinguish what is real, other people may start to notice symptoms before the child does. It is therefore important to talk to your GP if you are concerned in order to rule out any other possible issues and get a complete diagnosis as soon as possible.

Common issues parents and carers may have to contend with

People with schizophrenia may not realise how the disorder affects them until they get treatment and their symptoms are managed. It may, therefore, be a challenge to get help for a young person initially. There may also be a delay in getting a full diagnosis and accessing the needed services, which may cause further distress to parents and carers and families.

People who suffer from schizophrenia generally require medication to help manage their symptoms. However, they may not always feel “unwell” and may want to stop taking their medication. Parents and carers may have to contend with resistance to treatment and may need to be very vigilant to ensure that the prescribed treatments are adhered to in order to support the wellbeing of their child.

Parents and carers may also have to contend with feelings of isolation, confusion, fear and prejudice from others. This may be very distressing and may cause tension within the home. It is important to make sure there is a team of professionals and peers who are able to both support a child or young person with schizophrenia and also the wider family.

How to support a child or young person with psychosis or schizophrenia

In order to manage schizophrenia and psychosis, it is vital that the child or young person adhere to prescribed medication, and for family members to offer practical support. The first step in supporting a child or young person with schizophrenia is for everyone to understand the condition as well as possible.

Children and young people with schizophrenia may find that a combination of medication and Cognitive Behavioural Therapy (CBT) is helpful in managing hallucinations. It is important that family members are understanding and supportive of the young person and try to encourage them to explore all treatment options available to cope with the symptoms.

It can be helpful to check up on young people with schizophrenia, and to try and normalise the unusual experiences they may have. This can support a child or young person with schizophrenia to confide in others early on and reduce the likelihood of progressing to a more severe psychosis. It is important to be as reassuring as possible, and to avoid using frightening terminology when interacting with young people who have schizophrenia.

When a young person with schizophrenia is feeling up to it, it may be useful to plan ahead for more challenging times. This can help family members know how to be supportive during these instances and can allow family members to discuss what they can cope with and do to help, and what they might not be able to do.

What to say to schools and colleges

It is important for schools and colleges to be aware of potential warning signs that a young person may be experiencing psychosis, and to reach out to parents and carers as soon as any symptoms are observed. Consistent communication between families and teachers is especially helpful in identifying and managing any triggers for distress and to help the young person to develop effective coping skills to help with this.

Preferential seating in the classroom, classroom assistance or one-on-one educational aides may be required for some young people with schizophrenia to cope in the classroom. Along with this, considerations around flexible deadlines for assignments and extra time to complete exams may be helpful. In some cases, alternatives to public speaking assignments, or alterations to content and school assignments may be required, or an alternative environment may be indicated (such as the library) to minimise distractions.

It is also important for schools and colleges to be aware of any medication accommodations that may be required, and for this to be incorporated into the young person’s daily schedule in class. Medications can cause side effects such as drowsiness, for instance. Overall, providing extra assistance to help a young person with schizophrenia organise their school day may be very useful and build a feeling of trust between the young person and the school or college.

What to say to siblings

It is important for siblings to understand why their brother or sister may be behaving strangely. It may be helpful to explain to siblings that their brother or sister cannot always tell what is real and what is not. This is because a young person with schizophrenia doesn’t feel completely well, and the brain tries to make up a reason for this. Unfortunately, the reason may not be correct or even real, causing the young person to act strangely. Schizophrenia is a medical condition, and nothing anyone did caused it.

Siblings can help a young person with schizophrenia by being available to talk, and by being positive towards their brother or sister. Being encouraging and reminding them not to be too hard on themselves may also be helpful.

It is also important for siblings to know that it may take some time before the symptoms of schizophrenia start to improve. They also need to be aware that their brother or sister needs to adhere to the treatments provided including sticking to their medication and getting the support they need.

What to say to extended family

It is very important that extended family members learn about schizophrenia and the symptoms associated with it. This will help them to identify possible psychosis early on and help to support a child or young person during psychosis.

It is also important for extended family members not to focus on whether the experience of psychosis is real or not. Rather, it is helpful to focus on what the young person is feeling while they are experiencing symptoms, and to be supportive and helpful. The experience is very real, and often very distressing, to the young person with schizophrenia and therefore it is helpful to have a supportive family network to turn to.

Additional support for parents and carers