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Children with a chronic illness face a range of extra
stresses and practical demands not encountered by their
peers. In the specific case of arthritis this often includes
episodes of pain, fatigue and mobility problems.
Sometimes they are left without enough energy to
participate in activities, or they need to attend hospital
appointments and do physiotherapy. Their parents,
siblings and extended family also report changes for
themselves, worries and emotional reactions. Much
research has focused on the ‘psychopathology’
associated with chronic illness. While certain emotional,
behavioural and educational problems do occur is also
important to recognise the positive changes children and
families report. |
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Many children (the affected child and siblings) mention
that they have gained a greater sense of empathy for and
understanding of other people and their problems.
Children appreciate the extra presents and attention they
receive when they are unwell and delight in the special
events they are sometimes involved in. It seems that
although sometimes missing significant amounts of school
time many children and young adults with arthritis do at
least as well as their siblings or peer group in
examinations and in higher education. Parents sometimes
find they gain extra skills and knowledge because the
situation forces them to deal with professional people and
organisations in a way they have never had to before.
Some couples and families describe becoming closer and
learning to value the things that really matter in life.
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By mentioning some of the difficulties commonly
experienced, I hope it will help children and families to
recognise their own situations and reactions. They will see
that they are not unusual or less able to cope than other
people in the same situation.
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Certain problems seem to be more likely to emerge at
particular stages.
Pre-schoolers
In the pre-school years, normal behaviour problems such
as those around sleeping, eating, toileting and tantrums
may be exacerbated by the demands of the illness and
treatment regimes. Parents and professionals have more
trouble interpreting difficult behaviour. For example if the
child is waking several times in a night, is it because they
have come to expect a cuddle and to be allowed into their
parent’s bed, or are they in pain? Often the picture does
not become clear until a later date. Parents may end up
placing fewer demands on and being less strict with their
unwell pre-schooler than with their other children.
Alternatively they may be equally strict, impose
punishments and later when it emerges that the child was
unwell or in pain, feel exceptionally guilty.
Middle childhood
In the middle school years children become more preoccupied with their own social
relationships and learn
more about friendships, rules and socially acceptable behaviour. They gain a sense of competence and self
esteem through successful activities, for example
acquiring sports skills or constructing dolls houses and aeroplanes. Opportunities
to participate in such activities
may be restricted by illness and consequently the child
has less opportunities to achieve these important
developmental skills.
Fears about medical procedures may cause problems
in managing events such as blood tests. Problems about
compliance with physiotherapy and taking medication
regularly emerge.
Adolescence
It seems that for children with a chronic illness many
‘adolescent’issues emerge well before puberty.
Developing cognitive skills means that the child is more
able to consider a range of possibilities and to think of the
future. They may need a different level of information and
involvement in treatment decision making.
We commonly think of adolescence as a time to
develop a positive image of self and to develop some kind
of independence in thought and activities. The
adolescent’s physical appearance may take on a new
importance to them and they may become very distressed
by the puffiness associated with steroid medication. A
lack of mobility or self care skills may mean that the
adolescent remains more dependent on adults than their
peers are. A new diagnosis in adolescence may force the
young person to re-evaluate their whole concept of
themselves and they may have to develop alternative
ways to be active, independent and successful. |
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Parents often report facing dilemmas about how much to
demand of their child and how often to make concessions
to the illness. They not only have to provide emotional and
physical support for their child, but also find they have
strong and varied reactions to their child’s situation. They
also face increased physical demands, for example when
a previously independent child again needs help with
walking or managing clothes. Sometimes parent and child
find themselves tied back into a stage of development
more appropriate to the parenting of a younger child.
Couples may find their relationship suffers, partly
because of the new worries and practical demands.
Sometimes decisions that need to be made and the extra
tasks that must be undertaken highlight differences or
resentments that are already a part of their relationship.
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Healthy siblings often complain about a lack of attention
and that they miss out on gifts and special time. Some
have greater requirements placed on them, i.e. to help
with tasks or to avoid hurting their sibling. They may
resent having to stay with friends and family when their
sibling is hospitalised. Occasionally siblings receive
teasing or take on a protective role for their sibling at
school. Sometimes they have their own fears that the
condition is contagious or inherited and that they too will
become ill.
Conclusion
Many of the problems mentioned here may seem minor or
relatively unimportant in the context of a serious physical
illness. However when a child and family are already
managing a daily load of anxiety, pain and treatment
requirements even small things can take on great
significance. Emotional issues can interfere with good
family relationships, with good working relationships with
the medical team and with optimal medical treatment.
There are times when it may be useful to seek help from
friends, family, support groups or mental health
professionals. |
Growing up with a Chronic Disease, The Impact on
Children and their Families by Christine Eiser.
Jessica Kingsley Publishers, 1993.
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Written by Shirley Corkill, Clinical Psychologist, Paediatric Rheumatology Team,
Great Ormond Street Hospital, London.
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