Information for the brothers and sisters of patients

children talking

If you have a brother or sister with a long term health condition or a disability, there are times it may have been challenging for you.

Often siblings feel alone in the difficulties they face, but the things you feel and experience are perfectly normal.

Sheffield Children’s spoke to 65 young people about their experiences as a sibling of someone who had a long term health condition or a disability. This showed us that you may have a variety of feelings and experiences, both positive and negative.

Emotions

You may experience a wide range of emotional reactions. Some of these emotions can be positive. For example, 7 in 10 young people felt a sense of pride in their brother or sister.

Other young people had more difficult feelings. Common feelings included:

  • Worry
  • Sadness
  • Anger
  • Jealousy
  • Guilt
  • Powerlessness

It is not wrong to have any of these feelings. They are normal feelings to have. It does not mean you do not care about your sibling.

You may find it helpful to talk to someone about the way you feel. Speaking to your parents or carers may be helpful, as they may be experiencing difficult feelings too, and you can talk them through together.

1 in 5 children we spoke to didn’t feel able to speak to their parents. If you feel unable to speak to your parents/carers, consider whether you can talk to another member of your family or a friend.

In some cases, services at Sheffield Children’s are able to put siblings in touch with other young people who have had similar experiences.

Impact on your life

In our conversations with siblings, many had experienced an impact on their own life.

This can include:

  • Needing to act as a carer
  • Feeling they get less attention than their sibling
  • Feeling they miss out on things like days out
  • Feeling disadvantaged
  • Feeling they have to protect their sibling in public or at school

Again, it is normal to feel upset or frustrated about the impacts on your life.

It may be helpful to speak to your family about how you can work together to minimise those impacts.

Think about what would help you cope with those impacts. For example, while your parents may have less time to spend with you, think about how you could make the most of the limited time together. Is there something you would particularly like to do together? If you can’t go out, is there something you would enjoy doing at home?

Your parents or carers will want to help you, and while they may find the conversation difficult, it is likely they will welcome your ideas on how you can all work together.

A small number of siblings experience other issues, like bullying at school. If you experience this, you should report it to a teacher so they can act on it.

Supporting your sibling

A lot of siblings want to understand more about their brother or sister’s condition, or do more to help. This is great!

If your sibling is able to express things directly, they are likely to want to talk to you more about what they are going through and how you can help. You can also ask your parents and carers.

You may also be able to get information about your sibling’s condition from the Sheffield Children’s website, or from www.NHS.uk. There are lots of other useful sites on the internet, but there is also a lot of misinformation, so it is best to go to official sources. You can also get in contact with your siblings’ medical team, who can provide advice on the best websites or forums to head to for information about your sibling’s condition.

It may also be possible for you to attend some health appointments with your sibling to get a better insight into their condition.

Your health

Depending on your sibling’s condition, you may be worried that you will develop the same condition as you get older.

If this is a concern to you, speak to your parents or to your sibling’s clinical team.

Your important role

While it can be difficult having a sibling with a disability or a health condition, it can also be very rewarding. You are likely to have a much stronger bond with your brother or sister. It can also help you develop into a more compassionate person, better able to appreciate the value people of different abilities bring to the world.

You also play an important role in helping your sibling. While they may not always say it, young people with disabilities or long term health conditions hugely value the support of their siblings. Just being there for them is so important.

There will be difficult days. But there will also be good days. Try to enjoy the time you have together, but don’t feel bad about yourself if sometimes you find things hard.

We asked some other siblings what advice they would give to other young people in the same position as them. Here’s what they said:

  • “Don’t think that your parents love your sibling more than you.”
  • “Ask if you can help in any way.”
  • “Just listen and don’t judge.”
  • “Speak up.”
  • “Sometimes it’s okay to feel annoyed at the fact you don’t feel you are as important. It’s fine to ask questions and it’s okay to just be okay.”

Sheffield Children’s Youth Forum

Both patients and siblings are welcome at the Sheffield Children’s Youth Forum. You can join if you are between 12 and 19 years old.

The forum meets regularly to find ways to improve the hospital and its services for young people. It is also a good way to meet others in a similar situation. For more information visit www.sheffieldchildrens.nhs.uk/youth

Sheffield Children’s NHS Foundation Trust
Sheffield Children's@SheffChildrens
Thank you for sharing this Suzie - our staff will love to hear this feedback😃 https://t.co/YESOXK5Kev