PARENT'S GUIDE TO
DOCTORS, DISABILITIES, AND THE FAMILY
By Suzanne Ripley
do families choose a primary health care provider or pediatrician
for their child? Specifically, how do families with a child who
may have a disability and/or special health care need choose a doctor?
How do families work with their pediatrician for the maximum benefit
of their child, to locate appropriate specialists, correctly assess
their child's needs, and work with the education system? These are
questions many families ask. This paper will explore these questions
and discuss some possible answers.
How Do Families Choose a Doctor for their Child?
Choice of a doctor may vary depending on the size town you live
in, whether you live in a rural area, whether you use a private
doctor, health maintenance organization, group health organization,
public health center, Indian Health Service, or clinic.
may live in an area where there aren't many doctors to choose from.
In such a situation, the primary care physician may be located in
another town and serve as a specialist with whom you consult by
phone and to whom reports can be mailed. This doctor can advise
the family as well as the local pediatrician on evaluations, medications,
and other specialists. Families may see their local pediatrician
for all routine baby and child health needs but work in a team type
situation with the primary care physician who may be a specialist
with the University Affiliated Facility, at the state university
medical school or at another major hospital either in the state
or in another state. For children with rare syndromes or unique
medical needs, a specialist may be located quite a distance from
the family but still be actively involved in decision making.
first step in obtaining medical assistance should be the identification
and selection of a primary health care provider. This sounds simple
enough; yet, an article in Pediatrics, "First Step in Obtaining
Child Health Care: Selecting a Physician," (Hickson, Steward, Altemeier,
& Perrin, 1988) indicates that parents included in the study did
not spend much time or energy selecting a doctor. According to its
authors, this study is the first to evaluate the process of physician
selection for children. The parents were asked how they selected
their child's doctor and what factors were important in their decisions.
Fifty-three percent of the families surveyed considered only two
or three physicians in their decision; 34% considered only one.
They also indicated that an average of only 1.2 sources of information
were used in identifying and evaluating potential doctors. The sources
most commonly used were talking to a neighbor or friend (44%) and
discussing choices with another doctor (21%). Decisions were based
primarily on one of three characteristics: communication skills
(willingness to share decision making, warmth, concern), accessibility
(return calls quickly, quick appointments), and quality of practice
as determined by recommendations from friends and family.
Q: Are Families Satisfied With the Doctor They've Chosen?
A: Parents surveyed in this study also were asked why their families
changed pediatricians. The most frequently stated reason for changing
doctors was the family's perception that the doctor was not managing
a specific illness adequately. The second most frequently stated
reason was that parents believed their child's doctor or office
staff was rude or unconcerned. Third was that they objected to their
physician's lack of interest in their child's behavior. The fact
that more than 40% of parents who were dissatisfied with pediatricians
expressed this complaint reinforces the notion that parents are
concerned about psychosocial health, or that perhaps psychosocial
health is not addressed adequately in our health system.
What About the Child Who Has a Disability?
All families have unique needs. The above study was conducted with
families whose children were not identified as having any type of
disability. For the child who may have chronic health problems,
developmental disabilities, behavioral difficulties or physical
disabilities the choice of a primary care doctor must be made with
care and thought. The number of parents who were dissatisfied with
their pediatrician's lack of interest in their child's behavior,
coupled with parents who believed their child's doctor or office
staff was insensitive or unconcerned, substantiate the need for
extra thought and planning.
to a child whose needs are distinct or unaccommodating can be difficult.
Yet, a child needs to be able to communicate with his doctor as
well as develop trust and rapport with him. In addition, the child
should be comfortable with his medical needs and care. Even young
children need to be able to talk with their doctor. Older children
and teenagers need to have more involvement in their medical decisions
and concerns, and need to feel comfortable talking openly with a
physician who understands them. Therefore, it is imperative that
the doctor you select manage a two-way communication with the child,
accept the child's unique behaviors and disability, look past such
impediments, and treat the child with the same concern shown for
This publication is approximately
12 pages long when printed.