Home support for families expert advice how to support siblings of seriously ill child

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.

Supporting siblings of a seriously ill child

Caring for a seriously ill child has a huge effect on the whole family, and siblings will be facing unique and challenging emotions throughout. Knowing how to best support siblings can be overwhelming and worrying for parents and carers.

Our suggestions are rooted in the experience of our Family Support Workers, who have years of experience supporting families with a seriously ill child. But it’s always good to bear in mind that every family is different – our advice is not one size fits all.

Explaining diagnosis and treatment

Whether a diagnosis has been expected or come as a shock, the changes that come with caring for a seriously ill child can be unsettling. New routines with hospital appointments, treatments, and parents/carers being away will take time to adjust to. Explaining a diagnosis and/or treatment to a sibling can feel daunting and perhaps difficult to get ‘right’. This requires sensitivity and most importantly, age-appropriate language. You know your child best and can use the language you feel they would best understand.

A natural response is to protect your child against conversations surrounding serious illness and avoid such topics. But it is important to encourage open and honest conversations surrounding the diagnosis, not only so the child is informed, but also so they feel included.

Here are some pointers to help begin those tough topics:

  • Choose an appropriate time and setting, perhaps somewhere familiar or where you won’t be interrupted.
  • Use simple, clear, and age-appropriate language. Avoid medical jargon or ambiguous language.
  • Listen. Give them space to explore their emotions in conversation.
  • Reassure them that their feelings are normal, and it is valid to feel and express them.
  • Answer any questions. Give the child space to ask any questions, and answer honestly and patiently.
  • Remind them of your support and offer reassurance that they can come to you for anything.
  • Seek professional support if needed – not every child would want this kind of support, but it is always a good idea to be aware of support networks should you need them.

How might siblings feel?

Siblings can be dealing with big emotions at times and, depending on age, may not have the ability to articulate how they feel. They could be feeling angry or frustrated that their sibling is seriously ill and how this is impacting them, and the whole family. A sibling may feel jealous as it may seem their sibling is getting more attention due to their medical needs. They may feel fearful and anxious about what is going to happen to their sibling, or sadness at the change in family life.

Caring for a seriously ill child can mean unexpected hospital admissions which can be unsettling for a sibling. Keeping routines as normal as possible is a good way to retain some normality, providing them with some stability in a very unsettling time. This can include simple things like mealtimes, bedtimes, and hobbies. As well as this, regular 1-1 time with the sibling is key to allow them time with their parent/carer that is fully focused on them and their interests.

It is important to remember that each child’s experience and feelings will be unique, and these feelings may not always be expressed openly. Encouraging open communication and providing a supportive environment can help siblings feel safe to share their emotions and to seek the support they need.

Changes in behaviour

As a parent or carer of a sibling of a seriously ill child, you can expect behaviour changes in response to a change in everyday life. Depending on age, personality and experience, behaviour can vary and appear differently for each child.

Some children want to take on more responsibility as they see their parents needing more support and want to help. Others may display more challenging behaviours at home or at school because they are unable to express their feelings with words. Some may not have such noticeable changes, which is nothing to worry about either. There is no ‘best’ way for a sibling to react and it is important to remember that every child will react differently. To understand their behaviour, ensure extra support is in place and any adjustments that may be needed can be made outside the home, e.g., at school. As a caregiver or family member, providing a supportive and understanding environment can help the sibling cope with their emotions and navigate through this time.

Supporting the sibling of a seriously ill child

Rainbow Trust Children’s Charity offers sibling support as part of the care we provide to seriously ill children and their families. Our support is hugely varied and depends on the need of the family.

When it comes to sibling support, we are there for the sibling in whatever way they need. Professional care is important, but sometimes what a child needs is 1-1 time with a trusted individual to just have a break and be a kid. This could be going out for ice cream, visiting the park, or playing with toys in the home. Other times it could be arts and crafts, gaming and shopping, or a conversation about how they are feeling.

When you have a seriously ill child, you may have professionals visiting the house for appointments and check-ups, but their focus isn't the sibling. At Rainbow Trust we are able to be that professional that visits just for the sibling, giving them that one to one time.

Top Tips

Here are some ways you can offer the best support:

  • Listen and reassure – create safe environments for the child to express their emotions.
  • Quality time – regular 1-1 time with the sibling to do activities they enjoy.
  • Communicate – keep them involved in progression of their sibling’s illness and informed of any important updates.
  • Encourage normalcy/routines where possible – support them in their hobbies, and routines to improve stability.
  • Celebrate their achievements – notice when their achievements and celebrate them when needed.
  • Reach out for help – don’t be afraid to ask for help, from both friends and family as well as specialised organisations.
  • Look after yourself – be kind to yourself and try and prioritise rest when you can.

If you or someone you know is in need of our support, you can make a referral here, and one of the team will be in touch to discuss if we can offer our care.

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Does your family or a someone you know need support with a seriously ill child?

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.