Blooming/evolvment of CF Child

Question

Are children with cystic fibrosis able to bloom, to evovle? If so, how? If not, why?

Answer

Hello.

This is a question that is not easy to answer because the field is wide outside any context. I could give you a general answer and some documents that will allow you to go further if you wish.

A happy child is a blossomed child. How to accompany him throughout his life, how to help him precisely to grow? This is a question that everyone is asking when a child is born (or even before), whatever the circumstances. It will have to be accompanied on the road to independence while being protected, to be helped to grow as an individual of his own, namely to feel confident and at ease with the world that surrounds it. In short, a subtle balance need to be found over time and development of not only the child but also yourself. Whether parent or close relative to the child - family, teachers, caregivers - everyone has a role to play and everyone has to accompany the child according to its needs by developing the foundations of education.

What’s happen when disease (CF) is here ?

Cystic fibrosis is nearly invisible and doesn’t create physical handicap, except sometimes breathing difficulty more or less important. In fact, children, adolescents and adults could therefore live a family, social, loving, school and professional live as others. Nevertheless, an organization of daily care should be implemented in their agenda. It’s just important that the child's life remains as normal as possible so it could grow and achieve autonomy. It must be allowed to participate in all activities that facilitate integration, while ensuring adherence to treatment. Holidays, outings, sports, social relationships should be encouraged. Their education is also quite normal, but some adjustments may be required according to the evolution of the disease.

Of course, there are moments in life with CF where children (as well as their family) may encounter some problems and questions. For relatives accompanying the child, learning to care without being overprotective is not always evident. For sick children, the experience of stress treatments, the need to learn to take care of, the periods of denial or opposition, could be especially sensitive...

At these moments, family could be helped by the CF care team, and more precisely by the psychologist.

As announced, let me direct you to some documents that could help you further explore this vast subject [those documents are in French, as this was a French quesiton]:
- "The illness and daily life over time" (AC Jeanbaptiste & A. Matossian): an article that may help you find the most appropriate behavior to encourage the development of a CF child, regardless of age, and bring to conclude that his needs and concerns are hardly far removed from those of everyone else www.muco-ucl.be/PDF/22_au_fil_du_temps.pdf
- a complete file of the child's development: what is a blossomed child? What are the different sources of growth? What are the barriers to development? www.psychologies.com/Famille/Enfants/Epanouissement-de-l-enfant/Articles-et-Dossiers/Qu-est-ce-qu-un-enfant-epanoui

- "Lighting ethics": an invitation to reflect on the meaning of life and its transmission, on the child's desire for couples (and their families) affected by CF www.vaincrelamuco.org/e_upload/div/brochure_ethiquebdef.pdf

Hope to have help you,
Cordially,
Laëtitia Gueganton

04.02.2013