Stressors
on Families of Children with Disabilities
Psychological stress occurs
when an individual believes that he or she does not have the necessary personal
resources to deal with a particular situation. When the birth of a long-awaited
infant is clouded by the diagnosis of disabilities, parents face a sudden loss
of their dreams and a sense of failure. When a beloved older child shows unexplained
delays and professionals confirm that the child has significant impairments, many
parents are immobilized by the diagnosis and its corresponding demands. Stress
is a call to action; too many calls to action can result in psychological and
emotional overload. Parenting a child with disabilities can be a series of unusual
and overlapping stressors that causes fatigue and low morale. (Singer et al)
Westwood, Palmer, and Owens
(1998) provide a comprehensive list of stressors that can have profound impact
on the parents of children with special needs:
- the grieving process
- dealing with pressures
from others
- medical, developmental,
and educational costs
- meeting demands of family
members who feel neglected
- expectations from therapists
and teachers
- sleep deprivation
- repeated hospitalization
experiences
- conflict between work
and family demands
- quality of life concerns
- inadequate family or
social support
- dealing with a variety
of medical, educational, and developmental specialists
- pressures to gain the
knowledge and skill to make decisions about their child
- lack of personal time
- understanding medical,
educational, and developmental reports
- chronic sorrow
- learning to collaborate
with professionals
- marital stress and possible
divorce
In addition to the individual
stressors cited above, parents of children with disabilities experience additional
stress as they attempt to "straddle", or spontaneously cope with conflicting
elements of living with a youngster with disabilities (Johnson, 2000). Focused
telephone interviews with mothers of children with mild to moderate physical
disabilities, who were of preschool to elementary school age, identified three
levels of straddling:
- living in the present
(a life fraught with constant, unrelenting demands and multitudes of unknowns),
while retaining elements of the past (an idealized version of the way things
used to be).
- trying to perceive their
child as "normal," when the child is actually disabled.
- dealing with their own
issues and feelings, while also coping with their child’s issues and
feelings.
Instant
Feedback:
Parents
of children with disabilities face the same stressors as parents of typically
developing children, and cope with these stresses in the same way.
Nurses need to understand
how difficult it is for parents to straddle their roles and responsibilities.
Nurses can provide emotional support by allowing the parents to express their
emotions in an accepting atmosphere. Johnson also emphasized the nurse’s
role in preparing parents for anticipated grief work, reinforcing normalization
strategies, and helping them separate their own issues and feelings from those
of their child. It’s important to reassure parents that their experiences
are typical and that they will learn to accept their child as he is.
Nurses who work with families
are often in an excellent position to help identify stressors, develop coping
strategies, and evaluate the effectiveness of actions to reduce stress. It is
important that nurses be sensitive to the scope and severity of stressors on
the family, and avoid adding to the stress when possible. Many nurses provide
invaluable coaching to parents, mentoring them as they learn to collaborate
with developmental and medical experts or identify and resolve conflicts.