The following article has been written in collaboration with Rainbow Trust's Family Support Workers.

Rainbow Trust Children’s Charity supports families who have a child with a life-threatening or terminal illness.

Looking after your mental health

Caring for a seriously ill child can be incredibly challenging and emotionally draining. It is important to recognise that while you’re focused on the needs of your child, prioritising your own mental health and well-being is very important.

This article will cover:

  • What is mental health?
  • How can I take care of myself?
  • Uncertainty linked to mental health illness.
  • How to recognise mental health challenges in children or teenagers.
  • How Rainbow Trust supports.
  • Where can I get support?

This article could be useful for the friends and/or family of somebody with a seriously ill child – it may give you some indication of how to best support them or help you understand their experience.

It is important to note that Rainbow Trust Children’s Charity is not a mental health organisation. Any advice we offer is based on the experience of our Family Support Workers, who have years of experience supporting families with a seriously ill child. We encourage anyone who is struggling, or worried about someone who is struggling, to reach out to your local GP or local services who can offer support and advice.

What is mental health?

A good place to start is breaking down the term ‘mental health’ – what does this mean? There is a common misconception that the term is automatically negative, but it is important to understand that our mental health refers to our emotional, psychological, and social wellbeing. It encompasses how we think, feel, and behave, as well as how we handle stress, relate to others, and make choices.

Just like physical health, mental health exists on a spectrum. It's possible to have positive mental health, where an individual experiences emotional resilience, a sense of purpose, positive relationships, and the ability to adapt to stressors. However, people can also experience mental health challenges, such as anxiety, depression, trauma, or other conditions that affect their emotional and psychological well-being.

It's important to recognise that experiencing mental health challenges is not a sign of weakness, and seeking help for such challenges is a sign of strength. Taking care of our mental health is crucial for leading a fulfilling life and maintaining overall wellness.

Promoting mental health involves understanding the factors that contribute to well-being, practicing self-care, seeking support when needed, reducing stigma surrounding mental health issues, and fostering a culture of empathy and understanding.

Facing challenges in life, such as caring for a seriously ill child, can bring up these challenges so it is important we equip ourselves as best as possible to foster positive mental health. It is also worth noting, that if you are caring for a child with a serious illness, these feelings are understandable and ‘normal’.

Uncertainty and mental health

There can be a lot of uncertainty around caring for a seriously ill child, which can be hard to deal with. Learning how to respond to and manage uncertainty may help to reduce some of the mental strain experienced when caring for a seriously ill child.

  • Remember that uncertainty is normal, inevitable and does not always mean something bad will happen. ​
  • Identify whether it is useful or possible to remove uncertainty. ​
  • Try not to avoid uncertainty altogether, in fact look out for opportunities to experience it more (even if in small ways) in order to learn that it can be coped with.
  • Learn how to “sit” with feelings of uncertainty, focus on the here and now and solvable problems. ​
  • Look for things in life where it is possible to have control: establish plans and routines. ​
  • Seek help when it is needed​.

Dealing with uncertainty when caring for a seriously ill child can be incredibly challenging and emotionally taxing. Always remember it is okay to have moments of doubt and uncertainty.

How can I take care of myself?

Here are some specific strategies to help you look after your mental health while also caring for your child:

Build a support network:

Surrounding yourself and your family with individuals (both professional and not) is so important when caring for a seriously ill child. If possible, stay connected with friends and family members or trusted professionals who can provide emotional and practical support when and if needed. Ask for help with practical tasks, such a food shops or childcare – this can help retain some routines and give you some much needed time off.

Prioritise self-care.

It is okay to prioritise your own well-being and do things to help look after yourself. This looks different on everyone, but here are some ideas:

  • Spending time outside.
  • Spend time doing things that you enjoy. This could be reading, watching a film, or if you’re short on time, listening to an audiobook/podcast.
  • A long bath
  • Having breaks of respite care can be a good opportunity to do things for yourself.

Reach out for help.

Asking for help can be dauting and admitting that you’re struggling is sometimes the hardest part. Let others help you carry the weight of the situation – you are never alone. Don’t be afraid to ask for help if you are struggling – at the end of this article there is a section signposting to places you can turn to for support if you are in need.

Accepting it’s okay to feel a range of emotions.

Families caring for a seriously ill child may feel a whole range of emotions. It is important to remember that no one feeling is a bad feeling. It is okay to feel how you feel, sometimes you might feel happy, and you are allowed to do so. Some days may feel far more challenging, and that is okay too. You have permission to feel how you feel.

Get back to basics.

Sometimes it can be the simplest of things that can provide stability in an unsettling time, such as getting enough sleep and a little bit of light exercise - this can help maintain routines and promote physical wellbeing. This could also be something like eating food you enjoy, making your favourite meal for dinner, or calling a friend for a catch up.

Remember that looking after your mental health is not selfish; it's a vital part of being able to provide the best care for your seriously ill child. It's okay to ask for help and prioritise your well-being. Your child's well-being is intertwined with your own, so taking care of yourself ultimately benefits both of you.

How to recognise mental health challenges in children or teenagers

Recognising mental health challenges in children and teenagers can be crucial for providing appropriate support and intervention. Broaching this topic with your children can be overwhelming, but here is some advice to help you talk to your young person about their mental health.

Feeling and thinking

When we are thinking about our mental health, we need to be aware that our behaviours, our thoughts, and our feelings are all interlinked and affect one another.

It is important to distinguish between feeling something and thinking something – this allows to open up conversations about what is driving that thinking. Trying to distinguish what is a negative thought, and what is a negative feeling can provide some perspective on the situation.

Breaking down language

Breaking down the language surrounding mental health can help young people understand what it is and isn’t. For example

  • Mental health IS: a part of everyone, something to look after, real and complex, positive or challenging, changeable, real.
  • Mental health ISN’T: weakness, shameful, always negative, feeling good all the time, something to be ashamed of.

The ALGEE model

This is a framework developed by Mental Health First Aid (MHFA) to guide individuals in providing initial support to someone experiencing a mental health crisis.

The ALGEE model is a good structure to approaching mental health challenges with those arounds us, including children and teenagers:

  • A - Approach and assist with any crisis
  • L - Listen and communicate non-judgementally
  • G - Give support and information
  • E – Encourage appropriate professional help
  • E – Encourage other supports

You can read more about it on the Mental Health First Aid website.

How Rainbow Trust supports families with a seriously ill child

Although we are not a mental health charity, and although our Family Support Workers are not mental health experts, they are mental health first aid trained. In the same way that someone who is first aid trained is not a medical professional, our family support workers are equipped to support and signpost families to help them get the support they need.

We support the whole family including parents, carers, the unwell child, brothers, sisters and grandparents. Support is hugely varied and depends on the needs of the family. This could be taking a family to a hospital appointment, it could be taking siblings out to soft play, or simply listening to a parent’s worries and anxieties. Rainbow Trust is there to make life just that little bit easier.

If you, or someone you know, needs our support, you can make a referral and one of the team will be in touch.

Where can I get support?

  • If you are concerned about your mental health, your local GP is a good place to start. They should be able to suggest appropriate services or resources to offer advice. You can visit the NHS website here and enter your postcode to find your local service. You can self-refer for support, you don’t need a referral from a GP.
  • Mind is a brilliant charity that has lots of advice ranging from emergency situations to information on specific mental health topics.
  • Mental Health UK provide crucial advice, information and support to those affected by mental health problems. They also have a range of downloadable resources to help specific challenging conversations.
  • The NHS every mind matters provides a range of wellbeing tips to support your mental health as well as articles with advice for mindfulness and meditation.
  • Young minds is a great resource for both parents and young people in facing these challenges when and if they arise
  • If you are struggling with anxiety, anxiety UK delivers a wide range of services including:

Remember, anyone can support someone struggling with their mental health, you don’t need to be an expert. These organisations are a good starting point to equip yourself to best cope and deal with mental health challenges should and when they arise.

Read more expert advice

Read more expert advice

How Rainbow Trust supports families

Read more about our support for families

What Rainbow Trust does

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Anyone can refer a family to us (for example, a family member, friend, health, education or social care professional) provided consent from the family has been given for the referral to be made.