Parenting a child with CF

Most children with CF live a normal life and reach their developmental milestones, but like many other chronic conditions, having CF means more challenges, routines and effort to stay healthy.

A positive outlook about CF

As your child grows, having CF shouldn’t define who your child is or what they can achieve; CF is part of their life, and yours, but not all of it.

Children learn how to accept and deal with the challenges they face through watching you – if you accept CF and find ways to incorporate the extra demands into your life, chances are your child will develop a positive outlook about CF.

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General parenting resources

Parenting is a tough job, and all parents benefit from lots of support and advice. SKIP is a nationwide network of individuals, community groups, government agencies, workplaces and national non-government organisations, whose aim is for all children in New Zealand to be raised in a positive way, and parents and caregivers who feel confident about managing children’s behaviours as part of a loving, nurturing relationship.

Its website provides valuable resources for parenting children under age 5, including tips on topics such as not listening, throwing tantrums, being fussy about food and whining.

Many of the issues parents face when raising a child with CF are normal, everyday challenges all parents face. We encourage you to visit the SKIP website or download the SKIP Tips app for advice on behaviours most parents find stressful.

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Parenting: Focusing on CF

Being a parent of a child with CF means you have extra parenting responsibilities – giving pancreatic enzymes, monitoring their diet closely, avoiding possible infection control risks, daily physio… the list goes on.

Many parents of children with CF deal with similar issues, such as fussy eaters, refusing treatments and finding time to fit in treatments with family daily activities, and have found the following advice helpful:

  • Develop a daily routine – and try to stick to it as much as you can. Have clearly defined roles so every member of the family knows what is expected of them. Get siblings involved in treatments, for e.g. sitting and watching TV with your child doing physio or helping to get equipment.

  • Much of a young child’s life, even without CF, is out of their control – they’re told when to go to bed, what to eat and what they’re doing each day. Offer your child choices when you can, for e.g. – do they want to do their treatment before or after getting dressed, or do they want Mum or Dad to do their treatment tonight? Offer a choice where either outcome is acceptable.

  • Pick your battles – not all of them are worth fighting, so work out areas where you can let your child win (or at least feel like they’ve won!).

 

  • Accept help when it’s offered.

  • Be specific with friends and family members about how they can help you most.

  • Be consistent with treatments, even if your child is refusing. Just like brushing their teeth, chest physio and other treatments will always be a part of their day to day life. It’s best for children to learn from a young age what is negotiable, and what isn’t!

  • Offer lots of different food choices. Children can be fussy eaters, but even fussy eaters will eat a few different foods. Offer two or three high fat, high salt foods with every meal and allow them to choose their favourite.

  • Be guided by your child’s questions about CF. As your child grows they will start to realise siblings and other children don’t have to do the same treatment they do and will start to ask questions. Often a simple explanation in a way they can understand is enough. Answer their questions honestly and slowly build on their knowledge.

  • Ask for help when you need it, whether from friends, family members or health professionals.
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Top tips from other parents

“Choose a special activity just for physio, such as an iPad game or TV show.”

“If you’ve got a partner or spouse, try and share the responsibility of care – divide and conquer the treatments!”

“Get siblings involved – they can help get things ready for physio, play a game with them during nebulisers or just sit and watch TV with them.”

“Treat your child the same as any other siblings – have the same behavioural expectations, punishments, rewards and rules. Treat them like a normal child, because fundamentally they are.”

“It’s important your child knows other kids have conditions where they might have to do treatments, like diabetes, asthma or allergies. So normalising differences, if that makes sense.”

Here for you

Don’t forget we are always here for you. We formed in 1968 as a parent support group and over 50 years later parent support still remains one of our fundamental services.

We have 12 regional branches across the country run by CF families for CF families. They can provide invaluable friendship, support and encouragement.

Our CF field workers are also here to support you and advise you on your journey.