Helping siblings cope

Siblings of a child with cystic fibrosis (CF) maybe at a higher risk of developing well being or mental health disorders/issues such as depression or anxiety, as well as suffering from adjustment difficulties, learning issues and poor self-esteem.

Younger siblings appear to find this more difficult than older siblings, who tend to have a little more capacity for understanding the situation.

They may feel rejected by their parents if they think attention is always on their sibling

But there’s an upside

  • Despite the increased risk of anxiety or low mood, the arrival of a baby with CF can also have positive effects on siblings. It can result in a higher level of empathy for people experiencing difficulties, increased compassion and sensitivity and increased patience for others.

    Siblings often like to help with physiotherapy routines. They like to be included and might even line up for morning vitamins if their CF sibling is having medications.

Try to understand

Sometimes siblings play up as a way to get increased attention from their parents. Although difficult behaviour should not be tolerated, it’s important to understand your child’s reasoning so you can work towards a resolution by increasing the one-to-one time you spend with them, discussing why you must give their sibling more attention or ensuring that your child has an identity beyond being a carer.

You can build resilience in siblings by focusing on their achievements in extra-curricular activities and allowing them to have friends and mentors who are completely separate from their CF experience.

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What your kids might be feeling

Children whose sibling has a chronic illness like cystic fibrosis can experience many different emotions.

Guilt because they feel they caused the illness by doing something wrong because they’re healthy, because of their feelings towards their sibling or parents.

Worry that they will become ill too; that their sibling may die or go back to hospital; about the family’s financial situation; about their parents’ emotional wellbeing; about pressure to be the ‘good’, ‘easy’ or ‘able’ child.

Resentment – such as a sense of unfairness and disappointment – because of the extra attention and time devoted to their sibling or the limitations imposed on the family due to their sibling’s illness.

Sense of loss and isolation because they feel different from the friends who have a healthy sibling, and they feel sad that they can’t have the same type of relationship with their sibling as their peers have with theirs.

Anger with parents for not ‘protecting’ their brother/sister from cystic fibrosis.

Responsibility because of their increased independence due to parents’ preoccupation with caring for their sibling or their own care-giving duties.

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They feel sad that they can’t have the same type of relationship with their sibling as their peers have with theirs .

Hospitals: the impact on siblings

Having a brother or sister in hospital can be a confusing and stressful experience for a sibling – particularly if the child with CF appears well. And it is often the case that the child with CF isn’t acutely unwell. Younger siblings especially can be confused about the significance of regular hospital visits. Make sure any siblings have accurate age-appropriate information and understand what it means.

Sometimes siblings are trying to be on their best behaviour while their brother or sister is in hospital, but they might relax or act up when the child with CF is back home. So when everyone’s home again, have a family chat about what you’ve just been through and acknowledge everyone’s role/hard work during the admission. And then allow time for routines to get back to normal.

Hospital visits can also make some siblings feel jealous about the extra time the child with CF has with parents and/or time they have off school. Also they may think that their sibling is extremely ill and, without the right information, may become anxious about the future.

Keep an eye on the young ones

All kids express their feelings and cope with stressful events in different ways. Younger children form their beliefs based on previous experiences (for example, “the last person who I knew went to hospital died” or “people go to the hospital and then they get completely better”).

CF, of course, is a very different illness and this might confuse a young sibling who doesn’t have all the information. Pay special attention to their behaviour, as they may not have the verbal skills to articulate their emotions and concerns. Young children often convey their fears and worries through play or outbursts.

Alert the teachers to look for any changes in your children’s behaviour, particularly when their sibling is in hospital.

5 changes to watch for

  1. Acting up to get more attention
  2. Being withdrawn and quiet because they don’t want to bother their parents
  3. Trouble eating or sleeping
  4. Return to earlier common behaviours such as thumb-sucking, bed-wetting and carrying a security blanket or toy
  5. Problems at school

How to help the siblings

Maintain their regular routine and activities as much as possible.

Talk to them about the illness, treatment and prognosis – if they’re old enough. This can help them understand the situation better and correct misconceptions. (Remember that they have access to the internet, and what they imagine can be much worse than reality.) It also gives them some feeling of control in an unpredictable situation.

  • Listen to, validate and normalise their experiences and feelings. Speaking to a school counsellor, the psychosocial team at the hospital or a preventative peer support program might be helpful.
  • Involve them in medical care or other tasks that help the family, if they wish. This can help alleviate any feelings of being “left out”.

3 ways to ease their stress

  • Be honest about your baby’s hospitalisation and give them information that will help them understand what’s happening.

  • Let them visit the hospital, telling them beforehand what to expect (for example, how their brother or sister will look, what equipment they might see, people they might meet, sounds they might hear).

  • Make this time “special” for your other children – staying with favourite grandparents; having movie nights with Dad; having friends over, and so on.

Click on Getting Support if siblings or any family members are experiencing anxiety, depression or any other mental health issue. You’ll find a list of helpful resources.