Skin disease and the parent–child relationship

The relationship between the child and the parent may have implications for
the way in which the child makes sense of and copes with his or her condition.
Research suggests that one of the most significant factors in the development of
behavioural problems of children with disfiguring skin conditions is the reaction of
the parents to the illness or deformity.Over-protective parentswho shield their child
from social problems, such as teasing, may prevent the development of childhood
friendships and social skills, which are vital for later life. The birth of an infant
of remarkable appearance can cause delay in how they bond with their mother
and result in sadness, similar to that experienced by mothers of infants with other
congenital disorders.
Normal reactions of parents, which tend to occur with the birth of a child with
a skin condition, are detailed below. Parents of children with skin disease should
be aware of these.
l Parental mourning, i.e. the denial, anger and sadness that the parent
feels following the birth of the child – Being informed that one’s child is ill
or has some handicap is a life crisis which brings with it changes. Parents
face the prospect of having to adapt to circumstances that they might not
have ever imagined having to contend with.
l Disappointment, shame or guilt – Guilt is a common feeling that
accompanies the birth of a child with an illness. This is especially relevant in
cases where the illness has been genetically transmitted, but can also occur
when the onset cannot be linked to genetic causes. Parents may have an
unrealistic expectation of how the illness will affect the child’s life. They may
also feel unprepared emotionally, financially and practically to deal with the
challenges of bringing up the child. Thismaymake themfeel inadequate and
add to the feelings of guilt that they have about the child’s illness.
l Over-protection or over-indulgence stemming from parental
anxiety – The anxiety that parents feel about their child’s condition may
affect the way that they behave towards them. Parents may become
over-protective of their child in order to buffer themagainst the social and
physical consequences of their illness. Similarly they may try to
over-compensate for the fact that their child has to live with a chronic skin
condition by over-indulging them, causing resentment in other siblings.
l Focusing on the needs of the sick child and disregarding or
downplaying the needs of the other children in the family – Difficulties
that often face a family that has a child with a chronic skin disease are the
way that the illness affects the family as a whole, and how the individual
members are affected. In some cases, a parent’s guilt regarding their child’s
illness and need to compensate for it is expressed through an
over-involvement with the child. This will inevitably have implications for
how the parent will deal with the other children.
l Parental neglect or rejection of the sick child – Another possible reaction
of parents is one where the child is rejected because they do not feel that they
can cope with the child’s illness. This may stem from the fear that if they get
too close emotionally it will be too distressing for them. It may also be due to
a belief that they will be letting down their child if they are unable to help
themcope. Parental rejection can also occur when the disfigurement or skin
disease is believed to have resulted from sin or wrongdoing.
l Anger or resentment about the financial and practical burdens of
care-taking and medical treatment – Like any illness, skin disease brings
with it practical challenges with which the family will have to contend.
Depending on the condition, parents may have to make changes to their
daily routine, such as taking the child to the clinic or treatment centre. The
issue of cost may also arise where parents have to find ways of financing
either treatment or care-taking that the illness of their child necessitates. All
these factors may contribute to making parents feel resentful of the amount
of time and effort that they have to put into the management of their
child’s condition.
l Parental depression and fatigue – The factors described above can lead to
depression and fatigue in parents. In cases where the child’s condition is
chronic or episodic, the parents may feel that they have no control over the
child’s illness and that their efforts to improve the child’s condition are in
vain. The fact that somuch of their energy is centred on the child and the
illness means that their own needs are likely to go unmet and that fatigue
and depression can occur.
l Marital problems between parents – Illness resonates throughout the
whole family and relationships between family members can often be
adversely affected. Parents of an ill childmay become so absorbed with their
child’s condition that they begin to neglect their own needs and those of
other family members. They may find it difficult to share their feelings with
others and can therefore isolate themselves from their partner and other
family members.

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