Section 10 - Cystic Fibrosis Clinical Care Pathway

physiotherapy, self managed techniques such as a PEP mask will not
necessarily solve the problem.
School Entrance
School entrance involves exposure to a wider audience for the illness. It
requires explanations, understanding and, in some cases, unsolicited adverse
reactions. The child can be made to feel different when the normal drive is to
be like their peers. A sense of isolation and loneliness can lower self esteem. A
child can become withdrawn and watchful or alternatively, boisterous and
aggressive as a means of compensation. Helping the child to feel positive
about their CF, to be confident in providing explanations and aiding the
child to participate in normal life experiences are essential.
Procedure Phobia
Needle phobia and other fears associated with hospital admissions are
common. The fear has a rational basis to avoid pain and incomprehensible
procedures. Parents often find themselves in an uncomfortable position as
they cannot fulfil their protective role but must force the child to comply. It
is essential that parents help to reduce the child’s anxiety in anticipation of a
painful procedure. If parents themselves are anxious then they will be unable
to fulfil their role. Parents who experience procedure related anxiety must
receive some help themselves from the clinical psychologist. There are many
successful strategies to desensitise a child to such procedures but notice to the
psychologist must be given of an impending admission, so work can be done
in advance.
Adolescence
In addition to the previously mentioned difficulties, there may be particular
psychosocial concerns during adolescence. Often the psychological phase of
adolescence begins early in children with CF. It appears that the daily
management of chronic and terminal illness brings premature self
responsibility and opinions irrespective of intellectual level. The beginning of
secondary education can often result in a change of personality and poor
adherence to treatment. During adolescence most children are expanding
their experience, planning a future career and actively seeking opportunity,
whereas children with CF may be contemplating their own mortality. The
strength of peer pressure at this stage often introduces potential problems
such as pregnancy, cigarettes, alcohol and drug abuse. The psychologists are
often called upon to help families with such concerns.
Particular problems occurring during adolescence in CF concern body image,
a possible delayed puberty, sexual relationships and the likely infertility of
males. The age at which infertility should be raised with the boy concerned is
often difficult for parents. The CF team recommends informing the boy at an
early age rather than later in adolescence. This issue must be discussed with
the young man before transfer to the adult clinic.
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