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My child has Cystic Fibrosis

What do parents need to know?

After the diagnosis of cystic fibrosis, parents start a journey of searching for the best treatment and care, which is not always an easy task. Therefore, the federation Cystic Fibrosis Europe has listed some steps for parents to better prepare for this process.

  • Information: Ask, study, and read about cystic fibrosis using reliable sources. You will certainly have many questions, but you should not trust everything you find on the Internet. Some information is outdated because of continuous advances in the knowledge and treatment of cystic fibrosis. Parents are encouraged to develop the habit of taking notes of their questions on a piece of paper or the computer and then bring them to the next medical appointment.
  • Support: Get involved with associations and support groups for patients and caregivers. It is important to know and to talk with people who are going or have gone through the same situation – there is no one better than them to help you. Parents should also talk about cystic fibrosis with family members and friends. The more they understand the disease, the better they will be able to help.
  • Planning: Life with cystic fibrosis may be overwhelming at first, but many things that seem complex become a routine after some time. Therefore, parents should be acquainted with all the steps of treatment. They should take step-by-step notes of the activities related to managing cystic fibrosis daily.
  • Strength: Parents and family members will probably hear disheartening words from people who have the best intentions but are misinformed. In such cases, you should remember that cystic fibrosis used to be a lot of things that it no longer is, although many people do not know that yet. Parents should be prepared to find negativity, but also to keep this kind of information in perspective. When confused, they should ask their questions to the health professionals they trust.

Tips for the future

According to Cystic Fibrosis Europe, parents may take some actions to help assure their children's future. They are described below:

  • Establish a routine: The treatment of cystic fibrosis requires a regular diet, medications, inhalation therapy, physical therapy, etc. Managing all those aspects in any family's daily routine is challenging, but discipline is key to be successful. Having scheduled times to do each daily task may help reduce the burden of chores, even though sometimes there should be some flexibility as well.
  • Play different roles: Many parents of children with cystic fibrosis become so consumed with their children's needs that they forget to take care of themselves. They should not let this happen, or else they will be exhausted to continue treatment. Cystic fibrosis is indeed a commitment for life, but parents should seek ways to ensure that the disease is only one part of their lives, and not the whole of it. In addition, taking care of other people requires taking care of yourself.
  • Understand that the child has cystic fibrosis, he/she is not cystic fibrosis: Although cystic fibrosis influences patients’ and families' lives, the disease is only one aspect of their lives. First of all, this is a child with a personality, character, and goals.

Cystic fibrosis at school

School plays a vital role in the development of children and adolescents, and those with cystic fibrosis have the same dreams and wishes as any other child. To ensure that they have a good experience and access to opportunities, teachers should know what cystic fibrosis is, how the disease impacts a child’s daily life, and if the child has any special needs.

Furthermore, providing adequate information regarding cystic fibrosis according to the classmates' age group may be an important step for your child to be integrated and understood. If you wish to do something about that but are not sure how to begin, ask for help from patients' associations or health care centers for cystic fibrosis in your city or region.

From childhood into adolescence: challenges in adherence to treatment

The transition from pediatric care into adult care is an important step during treatment of cystic fibrosis and requires special attention from parents and health professionals.

With naturally increased independency, adherence to treatment stops depending only on the parents, and the adolescent with cystic fibrosis starts having an increasingly active role in the treatment.

It is essential to balance medical needs with other developmental factors, such as relationships, social life, and career. During this phase, the time that needs to be dedicated to the treatment of cystic fibrosis may become an even greater challenge.

Caregivers should talk with the health team and with the patient so that alternatives and adjustments to the treatment can be found. A new routine allowing the adolescent's development and treatment continuity needs to be created.