Risk and Resilience: Children
and
Youth with Disabilities
Reprinted with
permission from Summer 1999 issue of The Second Five Years, published by
the
Institute
for Health and Disability at the University of
Minnesota.
Resilience...The tendency for a child, adult, or family to rebound from stressful
circumstances or events and resume usual activity and success. Resilience is the
power of recovery.
Popular wisdom (and much
of the
research literature over the past 20 years) suggests that children who live with
chronic disease or disability are more likely to have psychological and
behavioral problems than their non-disabled peers.
However, that just isn't the
whole story. Individual factors relating to the condition or disability, the
child who is affected, the family, and the community all contribute and diminish
risk among the children and youth with chronic conditions.
Chronic
Conditions
For the past ten
years the Center for Children with Chronic Illness and Disability (C3ID) has maintained, as both a guiding and
research principle, that regardless of the condition, children with chronic
illness or disability and their families, have more in common than
not.
And, while we've learned that a
specific diagnosis may not be the primary thing that determines how well a child
and family do, certain characteristics of chronic conditions do have differing
impacts.
Invisible conditions like
diabetes or cystic fibrosis are generally more stressful and are associated with
more psychological and emotional problems for children than those that are
visible. "I never had any question about it," says one adult with cerebral
palsy. "I knew I had a disability every time I passed by a mirror. How I looked
affected who I am."
It's not easy for those with
less visible or invisible conditions. The child and the family are never quite
sure if they should tell others about the condition or if they should restrict
certain activities that may exacerbate the condition. Parents with children who
have epilepsy struggle: Should we let him drive? Can he play baseball? Should
the child with asthma be excused from gym class?
Uncertainty
Uncertainty
adds stress to the lives of our children and families. A condition that has an
unstable course, such as the remission-recurrence cycle of childhood cancers, is
more stressful than a condition that remains constant for a long period of time.
Likewise, conditions that are unpredictable -- those where having a seizure is a
possibility or level of energy changes from day-to-day -- increase the stress on
the child and the family. Uncertainty from a lack of diagnosis or changing
prognosis (as in the case of life expectancy in those with cystic fibrosis) has
been associated with more psychological problems and greater strain.
According to one physician and
researcher, John Rolland, MD, the characteristics of chronic conditions have a
greater impact on the family than the diagnosis. The course of an illness
(progressive, stable, or uncertain) and varying prognoses (improvement,
persistent, fatal) have different effects on different families.
-
Uncertainty in the course or
the prognosis can be more stressful for families who are goal-oriented and
prefer to plan ahead.
-
An incapacitating illness
with a stable course and normal life expectancy places a particularly
long-term burden on the family.
-
Mothers who are often the
primary caregivers for children with chronic conditions experience more
depression the more incapacitated and dependent the
child.
Painful, unpredictable,
embarrassing or energy-depleting conditions can create risk for emotional
problems.
No chronic illness or disability
comes with "protective" factors per se. Protective factors, as well as risk
factors, are a result of the interaction of the child with the chronic illness
in the family and in the community.
The Child
We know that, among all children, those with an easy
and more sociable temperament do better. While we have little evidence that
different child characteristics (gender, self-esteem, etc.) among those with
chronic illness or disability make a difference, we do know that:
Understanding the different
factors influencing child development is complicated because many child
characteristics change over time. For example, the personal characteristic of
"self-esteem" may be viewed as a health outcome and as a protective factor that
contributes to desired child functioning.
Likewise chronic conditions
complicate the accomplishment of developmental tasks. What is considered "cute"
or "sociable" in an 8-year old may be considered unacceptable in a 12-year old.
Parents may be unsure about what is "normal" for their child and how much
autonomy to allow.
The issue of independence takes
on new meaning when limitations associated with the condition challenge the
expectations of parents and youth. When parents and their teenage children are
able to redefine independence as the capacity of individuals to take
responsibility for their own behavior, to make their own choices, and to develop
supportive adult relationships, adolescence tends to be smoother.
The Family
Chronic conditions
present most families with a whole set of extra tasks, responsibilities and
worries including:
-
Extra care needs for the
child
-
Finding and accessing
medical and educational services
-
Paying for
services
-
Emotional grieving of
losses
-
Uncertainty about the
future
-
Social isolation
-
Stigmatizing reactions from
the community
-
Lost work and social
relationships
The response of the family can
be viewed as a source of added risk associated with poor outcomes or as a source
of protection that supports the child and leads to good outcomes.
What makes for a
resilient family?
-
They realize there is more
to life than managing a child's illness or disability. They try to balance
the child's demands with activities that provide personal fulfillment and
satisfaction.
-
They sit down with other
family members and discuss how they operate. They have clear boundaries
between adults and children. Their roles are clear.
-
They spend time listening to
one another and develop a vocabulary that everyone understands.
-
They infuse their family and
family situations with positive meanings. Rituals like popcorn and videos on
Friday night or breakfast at McDonalds can be fun for everyone.
-
They maintain commitment to
the family as a unit. They do things together, share responsibilities and
tasks, and maintain an optimistic outlook.
-
They learn to define
difficulties and then become effective, efficient problem-solvers. They
learn to cope.
-
They develop strong
relationships and social ties.
-
They become partners with
the physicians, therapists and caregivers.
Resilient families are able
to
shift gears and change expectations. While flexibility benefits all families, it
is particularly valuable when long-term demands are present and when day-to-day
life is not predictable.
The Community
When families live in
strong communities that have supportive people in the neighborhood, peers, and
work associates, families do better. These connections provide:
-
Emotional support that
allows families to feel liked, cared about, and valued;
-
Ideas, resources, facts,
advice and helpful hints that contribute to problem-solving and
decision-making, and
-
Tangible aid like
baby-sitting when a family member needs to run an
errand.
When families are able to
maintain frequent interaction with their social networks, it can help to
maintain the parents' and family's sense of esteem and competence.
We are learning, however, that
the attitudes and behavior of people in the community are often a greater source
of strain than having a child with a chronic illness or disability. In some
instances, even the service providers hold negative attitudes and biases about
children with disabilities. Sometimes, they are judgmental. When this happens,
families often avoid the use of services.
We are also learning from our
longitudinal study, Project Resilience, that communities and social structures
can present greater risks for children and their families than their chronic
illness or disability. We can no longer understand disabilities as inherent
"defects" or problems to be solved. Rather, we are learning that the capacity of
communities and societies to adapt to the needs of the individual determine the
extent of the disability.
For more on the topic of
resilience, see Resilience: Can It Be Bottled?, published in the free newsletter
Children's and Youth's Health Issues.
About The Institute
for
Health & Disability
The
Institute for Health & Disability is a network of programs for children and
youth and their families designed to improve the health and functioning of
children and youth within the context of their families and communities. These
projects share a focus on young people from birth to 24 years of age, and share
the fundamental belief that children with chronic illness or disability share
many of the same needs regardless of their medical or health condition. They
adhere to the following fundamental beliefs in all of their research, training
and dissemination projects:
-
The family is the central
influence in the lives of children.
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Full community participation
by children and youth with disabilities and their families has mutual
benefit for the child, family and the community.
-
Beliefs and attitudes about
children and youth with disabilities shape outcomes; positive beliefs
contribute to competence; negative beliefs undermine it.
-
Normalizing life experiences
foster the development of psychological and social
competence.
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