Child With Cystic Fibrosis: Daily Care Routines and Family Psychology

For a child with cystic fibrosis and their family: the emotional load of daily care routines, the child's needs by age, and ways for parents to keep going.

Half an hour of chest physiotherapy before the school bus arrives in the morning, supplements at breakfast that must not be forgotten, more minutes spent at the device after dinner… For many families raising a child with cystic fibrosis, the day runs according to a care list more than a calendar. People looking in from outside often say that the child "looks perfectly well"; yet inside the home there is an effort that is repeated every day and never takes a holiday. This effort is not only physical but emotional too: guilt, a constant state of alertness, struggles with the child over the routine and quiet worries about the future. In this article I look at what a child living with cystic fibrosis may feel at different ages, the psychological load the family carries, and ways of making the daily routine more bearable.

What Does a Cystic Fibrosis Diagnosis Make a Family Feel?

A cystic fibrosis diagnosis is sometimes made in infancy, after newborn screening or after recurring complaints. Regardless of when the diagnosis comes, most parents go through similar feelings in the early period.

• Shock and information overload. New words appear in the family's vocabulary: sweat test, lung function, culture result. While holding their baby, a parent has to learn to think like a nurse at the same time.
• Guilt. Because cystic fibrosis is an inherited condition, mothers and fathers may be gripped by the thought "I gave this to them". Even when this thought is understood rationally, it does not easily pass emotionally. Being a carrier is nobody's choice or fault.
• Grief. Grieving for the imagined "trouble-free childhood" is also part of the process. This grief does not mean not loving the child; it is a natural response to changed expectations.
• A state of alertness. Every cough, every fever, every bit of news about flu going round the nursery can push a parent's anxiety up.

All of these feelings are legitimate. Having them does not show that you are not a good parent; it shows that you have taken on a heavy responsibility.

A Child With Cystic Fibrosis and the Weight of the Daily Care Routine

In cystic fibrosis, daily care usually consists of breathing exercises and physiotherapy done every day, treatments given with a device, nutritional supports and regular check-ups. The details and medical requirements of this routine differ for every child and are determined only by the treatment team. What we are discussing here is the psychological side of this routine.

When the routine becomes a "bargaining ground"

For a young child, sitting down at the same time every day to do physiotherapy is boring. For a school-age child, being indoors while friends play football in the street feels unfair. Over time, the care routine can therefore turn into a battleground between parent and child. The parent insists out of anxiety, the child resists, and both sides grow tired.

Some ways of softening this cycle:

• Make the routine as predictable as possible. The same time, the same place, the same order every day. Predictability narrows the room for bargaining.
• Add something enjoyable to the routine. Listening to an audiobook during physiotherapy, putting on a favourite song or making up a story together makes the time more bearable.
• Offer small choices. The question "Are we going to do physiotherapy?" is open to bargaining; the question "Shall we do it now, or after your bath?" protects the routine while giving the child a sense of control.
• Notice the effort. Appreciating the effort rather than the result ("You kept going right to the end today even though you were bored") supports the child's motivation.

The parent who "turns into a nurse"

Parents who stay in the caring role for a long time may notice that their relationship with their child is gradually becoming a medical one. Most of the day passes with questions like "Have you done it?", "Have you taken it?", "Have you been coughing?" That is why time set aside outside of care, simply to be together, is important. A ten-minute board game in the evening or a short walk at the weekend gives the child the message: "You are not just your illness."

What Does a Child With Cystic Fibrosis Go Through at Each Age?

As a child with cystic fibrosis grows, they make sense of their illness in different ways. The family's approach also needs to keep pace with this change.

Infancy and the preschool years

At this stage the child does not understand the illness conceptually, but they sense the emotional tone of the routine very well. A physiotherapy session in which the parent is tense, rushed or frightened becomes a tense experience for the child too. Carrying out the routine in a calm, playful and affectionate atmosphere helps the child perceive care not as a threat but as an ordinary part of daily life. At this age a simple explanation such as "We do this to keep your lungs strong" is enough.

School age

In the primary school years, the child begins to notice that they are different from their peers. The supplements they take at mealtimes, their cough and frequent absences can prompt questions from classmates. A question like "Why do you cough all the time? Is it catching?" can deeply embarrass a child. It helps to prepare a short, confident explanation together with the child: "I have an illness to do with my lungs. It isn't catching. Coughing clears out my lungs." Working together with the teacher also helps the child feel safer in the classroom. When the teacher knows about the child's need to go to the toilet or get a drink of water, their particular routine at snack and lunch times, and how homework will be followed up when they are frequently absent, both the child's and the family's anxiety is reduced.

During this period the child may also begin to ask "Why me?" You do not have to give a definite answer to this question; saying "I completely understand why you're asking that. I sometimes wonder the same thing" shows the child that they are not alone in their feelings.

Adolescence

Adolescence can be a particularly challenging period for young people living with cystic fibrosis. On the one hand the young person wants independence; on the other, they have to take over a care routine that a parent has managed for years. During this transition, the routine is often disrupted, neglected or refused. This is not laziness; more often it is a cry of "I want to be normal".

When working with a teenager:

• Hand over responsibility step by step, not all at once.
• Try to be someone they consult rather than someone who checks up on them.
• Make room for the young person to handle part of their doctor's appointments on their own.
• Take their worries about friendships, body image and future plans seriously.

Adolescence is a period in which identity is reshaped, and young people want to weigh for themselves where their illness will sit within that identity. Some choose to share their illness openly with close friends; others want to keep it private for a long time. Both choices are understandable. The parent's task is not to make this decision on the young person's behalf, but to think through its possible consequences with them and to let them feel that, whatever they choose, the parent is by their side.

Family Psychology: Parents, Siblings and the Wider Family

Sharing the load between mother and father

In many families in Turkey, the burden of care falls largely on the mother. The mother giving up her job, constantly travelling to and from hospital, long journeys to university hospitals in big cities and the expenses that keep rising with the cost of living can also strain the marriage. When the father stays on the sidelines with a division of "I work, you look after them", it can lead both to the mother burning out and to the father's bond with the child weakening. Sharing care, with both parents knowing the routine and taking it in turns, protects the balance in the family.

Siblings

The sibling of a child with cystic fibrosis senses that most of the attention at home is directed towards the sick brother or sister. Jealousy, followed by guilt about that jealousy, are feelings the healthy sibling often experiences. Short but regular one-to-one time set aside for the healthy sibling helps them feel seen as well. I also cover this topic in the article on the sibling of a sick child.

The wider family and those around you

Comments such as "Take this child out a bit more, you keep them indoors all the time", "There were no illnesses like this in our day" or "Give them this herbal tea" add to the family's burden. It is important to say calmly that medical decisions are made with the treatment team and to limit how often the sick child witnesses these conversations. Because of the risk of infection, precautions around visits and crowds should also be based on the treatment team's recommendations.

The space a parent keeps for themselves

In caring for a child with cystic fibrosis, the person most often neglected is usually the parent who has taken on the care. A routine kept up for years without a single break builds up a tiredness in the parent that goes unnoticed. Many mothers and fathers feel guilty when they take time for themselves: "What if my child starts coughing while I'm out having a coffee?" Yet taking a break on a long journey does not mean abandoning the journey.

A few small steps can help to strike this balance:

• Identify a second adult who has learnt the routine; a partner, grandmother or trusted relative can take over the care a few times a week.
• Connect with families going through a similar process; patient associations and family groups can ease the feeling that "I'm the only one living through this". When making these connections, it is worth bearing in mind that online meetings may be preferable because of infection precautions.
• Don't put off your own health check-ups, sleep and meals.
• Be able to talk about your feelings, not in front of your child but with an adult you trust.

A parent who is rested also directly affects the quality of the care the child receives. Looking after yourself is not taking something away from your child; it is the way to stay alongside them for longer. You can read about the signs of tiredness that builds up in family caregivers in the article on caregiver burnout.

The most powerful message you can give a child living with cystic fibrosis is: "Your care is a part of you, but you are so much more than your care."

When Should You Seek Professional Support?

Living with a chronic illness can, from time to time, bring sadness, anger and anxiety for both the child and the family. However, support from a mental health professional may be helpful in the following situations:

• The child withdrawing for a long time and pulling away from play and friends
• The care routine involving serious conflict every day or being refused completely
• A teenager constantly neglecting their own care, saying "What difference does it make?"
• A parent experiencing sleeplessness, constant crying, burnout or low mood
• Marked changes in a sibling's behaviour or a sudden drop in their school performance

If you notice words about wanting to die, self-harm, or thoughts of ending their life in your child, your teenager or a parent, do not carry this alone; in an emergency call 112 (emergency services) or go to the nearest emergency department. For every question and change relating to the medical side of the care routine, consult the doctor and treatment team who follow your child.

You can find the general process of adjusting to long-term illness in more detail in the article on the psychology of chronic illness.

How Is Cystic Fibrosis Addressed in Therapy?

Psychological support does not replace the medical treatment of cystic fibrosis, but it can help to ease the emotional load of living with the illness.

When working with young children, play offers a natural space for the child to express their hospital experiences, their feelings about the devices and their sense of being different. In the course of child and play therapy, a child can work through what they have experienced by giving physiotherapy to a doll or playing hospital. Sessions with parents, meanwhile, can focus on developing behavioural strategies to reduce conflict over the routine, working with guilt and helping parents recognise their own emotional needs.

When working with teenagers, a cognitive behavioural approach offers a useful framework for examining thoughts such as "I'm different, nobody understands me", supporting the process of taking over their own care and coping with worries about the future. For families who live far from the hospital or cannot travel often, sessions can also be held online.

Frequently Asked Questions

Can my child with cystic fibrosis go to nursery or school?

You need to make this decision together with the doctor who knows your child's health. From a psychological point of view, being with peers is very valuable for a child's social development; it is important to look for ways of protecting this connection with the precautions recommended by the treatment team.

Should I tell my child the name of their illness?

Yes; telling them in language suited to their age is generally healthier. A child who does not know the name of their illness may build their own frightening explanations out of half-information heard from others. Short, honest and calm explanations give a child security.

Having to make my child do physiotherapy every day makes me feel like a bad parent. Is this normal?

This feeling is very common. Having to insist when your child resists can make you feel like a "harsh" person; yet what you are doing is protecting them. Talking this feeling through with a professional can both ease your guilt and help you find ways of carrying out the routine more gently.

My teenager is neglecting their care. What should I do?

First try to understand the feeling behind it; it may be weariness, embarrassment or a wish to be "normal". Looking for solutions together instead of blaming, and letting the treatment team know about the situation, is important. If the problem continues, a supportive space where the young person can talk about their own feelings may be helpful.

• #cystic fibrosis
• #chronic illness and children
• #family of a sick child
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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