The information we collect from visiting the
families in our study is very valuable! This information
has helped to promote a better understanding of
family functioning during the transition from
childhood to adolescence. Below are highlights
from scientific journals that have published results
from this study.
LONGITUDINAL STUDY OF FAMILY INFLUENCES
ON PREADOLESCENTS WITH SPINA BIFIDA (JOURNAL OF
PEDIATRIC PSYCHOLOGY, 2001)
This study investigated the relationship
between certain parenting behaviors and the coping
behaviors of children (i.e., the way they handle
stressful situations or events). The results of
the study suggested that certain parenting behaviors,
including the amount of responsiveness or warmth
displayed by the mother and father, were related
to a greater degree of problem-focused coming
strategies in the children. Problem-focused coping
involves things such as trying to actively solve
a problem by talking to someone about it. The
results also suggested that changes in certain
parenting behaviors were related to changes in
the way in which the child copes with stressors.
In general, the impact of parenting behaviors
on coping was similar for children with spina
bifida compared to children without a chronic
illness. Additionally, the impact of parenting
behavior on coping was similar for boys and girls.
ASSESSMENT OF ADHERENCE IN PRE-ADOLESCENTS
WITH SPINA BIFIDA: INITIAL DEVELOPMENT OF A PARENT-REPORT
QUESTIONNAIRE (JOURNAL OF PERSONALITY ASSESSMENT,
1998)
This study was conducted in an effort
to develop a reliable way of measuring how well
children with spina bifida adhere to their medical
regimens. The goal was to create a useful questionnaire,
so that an accurate adherence score could be studied
along with other aspects of a child's development
(e.g., is medical adherence something that tends
to get better or worse over time?). When study
participants were 8 to9 years old, their parents,
teachers and health professionals were asked to
report on the children's adherence to catheterization,
bowel care, skin care, medication, and ambulation
tasks. The Parent-Report of Medical Adherence
in Spina Bifida Scale (PROMASB) was developed
in this study, and was found to be a relatively
strong and stable measure of the children's adherence.
However, it is interesting to note that different
informants reported very different levels of adherence.
Mothers and fathers (who tended to agree with
each other) reported much more medical noncompliance
than teachers and health professionals. On an
open-ended question included at the end of the
questionnaire, parents speculated that motivational
and attentional/memory factors accounted for most
noncompliance with medical regimens.
ADOLESCENCE (ENCYCLOPEDIA OF MENTAL HEALTH,
1994)
Adolescence is a period marked by rapid
changes in biology, cognition and social roles.
The major biological event that occurs during
adolescence is puberty (which typically occurs
two years earlier in girls than in boys). While
it was once believed that puberty was very traumatic
for adolescents, we now know that girls and boys
experience a mixture of both positive and negative
emotions. Preparing a child for puberty can make
the experience more positive. Adolescents also
make dramatic gains in their cognitive abilities:
they are able to think more complexly, abstractly,
and hypothetically. During this period, young
people are able to think in terms of possibilities,
as well as think about the future. They can also
think about what other people are thinking. Many
adolescents also tend to obsess about their own
thinking, and may misperceive others as equally
interested in their own thoughts and actions (this
is called adolescent egocentrism). Finally, important
changes in social roles can occur during adolescence.
Society begins to view them as adults in certain
ways. For example, adolescents can learn to drive
a car, have bank accounts, and they can vote when
they turn 18.
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