Maltreatment of the Child with a Chronic Condition
- Children with chronic illnesses are at increased risk for child maltreatment, and
the risk for abuse increases with the number of chronic conditions in the
- Factors that increase the risk of abuse in these children include the
■Higher emotional, physical, economic, and social demands on the family
■Limited social and community support and the inability of parents to cope with the care
and supervision responsibilities
■Failure of the child to receive medications, appropriate educational placement, and
adequate medical care
■Increased stress related to the child’s behavioral characteristics (e.g., communication
■Lack of adequate breaks or respite from caring for the child
Assess the family for ineffective coping and the potential for abuse of the child with a
chronic condition. Make appropriate referrals to support services such as mental health
counseling, social services, and respite.
Family Financial Issues
- Even with good insurance coverage, the family still incurs a major financial
- Examples of additional expenses that families pay out of pocket may
include special diets, durable equipment and supplies, transportation to
healthcare visits, respite care, and co-payment for health services including
- Another financial concern for the family of a child with a chronic condition in the
home is the high incidence of job instability that can occur as a direct result of the
child’s condition. Parents may lose their employment due to excessive absences
to provide care for the child or may be required to reduce hours worked to make
sure the child receives adequate care. Such job instability further threatens
the family’s access to health insurance for the remainder of the family as well
as the child with a chronic condition
Promoting Healthy Family Coping
- Families often engage in a coping strategy called normalization.
- Through normalization, the family views the care of the child with a
chronic condition as a “normal” part of life, rather than an inconvenience
or something outside of their routine. - The family redefines what is normal for them by adopting a “normalcy lens”
that enables them to see that their family follows some normal routines
like all other families :
■They acknowledge the child’s condition and know that it has the potential to
threaten the family’s lifestyle.
■Their parenting behaviors and family routines are consistent with how they view
other families functioning.
■The child’s treatment regimen is integrated into the usual routines of the family and
child, in a manner that permits the family to seem normal.
■The parents interact with others based on their view of the child and family as normal.
- With normalization, the parents may be able to move the child’s condition to the
subconscious so it does not take a dominant place in the family’s life and
- They choose to focus on the normal aspects of the child and the family’s life.
- Through normalization, families are able to develop flexibility in management of
the treatment plan, making life easier for the family.
- Threats to sustaining normalization may include worsening of the child’s health
status that makes the parents more aware of the child’s serious condition,
changed management routines, new family additions, or other family
- Nurses can be effective in working with families by listening to the issues
and offering suggestions .
THE CHILD WITH A CHRONIC CONDITION
- The child with a chronic condition has the same developmental and
emotional needs as the healthy child and should be encouraged to achieve the
same developmental milestones as a child without a chronic condition.
- However, the impact of the chronic condition on the child’s cognitive,
physical, and emotional health may lead to altered developmental
- A developmental delay results when there is failure to achieve anticipated
developmental milestones during specific developmental stages.
Newborn and Infant
- Newborns and infants that are medically fragile are at risk for chronic conditions
related to brain injury, oxygen deprivation, and respiratory problems.
- Newborns cared for in the NICU are exposed to an environment of bright
lights and high-pitched noises that can negatively affect their development. - Nurses should promote development and parent–infant bonding by encouraging
the parents to spend time with the infant and engage in face-to-face interaction.
- When the newborn is stable, provide opportunities for parents to touch,
soothe, and care for the infant.
- Provide sensory stimuli such as mobiles, soft music, and different textures
for the infant to touch.
- When the toddler has a chronic condition, parents may need to control and set
limits on movement, play, behavior, or social interactions.
- This interferes with the achievement of autonomy and development of self-
- Some parents are overprotective and may do simple tasks they feel the child
is incapable of accomplishing, rather t