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Confidentiality in Health Care A Survey of Knowledge, Perceptions, and Attitudes Among High School Students Tina
Confidentiality in Health Care
A
Survey
of
Knowledge, Perceptions, and Attitudes
Among High
School Students
Tina L. Cheng, MD, MPH; Judith A. Savageau, MPH; Ann L. Sattler, MD; Thomas G. DeWitt, MD
adolescent knowledge, perceptions, and attitudes about
Objective.\p=m-\To
tal consent for birth control and abor¬
assess
health
tion. In
addition,
managed
care and oth¬
care
confidentiality.
changes
in health
Design.\p=m-\Anonymousself-report survey with 64 items addressing confidential-
er
delivery
have lim¬
ited adolescents' health
care
options and
ity
issues in health
care.
influence
may
perceived or
actual
pro¬
Setting.\p=m-\Rural,suburban,
and urban
high
schools in central Massachusetts.
vision of confidential
care.
Participants.\p=m-\Students
in ninth through
12th
grades
from three schools.
Results.\p=m-\Atotal
of
1295
students
(87%)
completed
58% had health
the survey:
they
wished to
concerns that
keep private
from their
METHODS
parents,
and 69% from friends
and
classmates; 25% reported
that
they
would
forgo
health care in some situations
Sample Population
if their
parents
might
find out.
There
were differences in
response
by gender,
race,
During
a 4-week
period in the
spring
and school. About
one third were aware of a
right
to
confidentiality
for
specific
health
of
1992,
we conducted
of ninth-
a
survey
issues. Of those with a
regular
86% would
source of care,
to
go
their
regular
phy-
through 12th-grade
students in three
sician for a
physical illness,
while
only
57% would
there for
questions
about
public high
schools
in central Massachu¬
go
the
acquired
immunodeficiency
syndrome,
or substance abuse that
setts.
School A is located in a
rural,
work¬
pregnancy,
ing-class community.
School
is in an
they
wished to
keep
private. Sixty-eight percent
had concerns about the privacy of
upper-middle-class
suburb of Worces¬
school health
a
center.
ter.
School C is in urban Worcester and
Conclusion.\p=m-\Amajority
of adolescents have concerns
they
wish to
keep
large population
of
serves a
poor
stu¬
confidential and
a
striking
percentage report
they
would not seek health services
dents.
Schools A and
have school
because of these concerns.
Interventions
to
address confidentiality issues are thus
nurses. School C has a school-based
crucial to effective adolescent health care.
health center that has
been fully
func¬
(JAMA. 1993;269:1404-1407)
tioning
for the
past
AVz
years
(although
gynecology examinations and
contracep¬
PRIVACY is
important
to adolescents.
en
criteria for evaluating proposals
to
tion
are not
provided).
As
they
struggle
forge
personal
improve
health
care.3
There
This
to
a
access to
study
was
approved by
the Com¬
identity
and establish social relation¬
has
been little
study, however,
of ado¬
mittee for the Protection
of Human Sub¬
ships,
adolescents are
particularly
lescent
and their
in Research at the
con¬
concerns
jects
University of
cerned about the
judgments
of others.
effect on
confidentiality
care-seeking behavior.
Massachusetts Medical Center.
Cooley1
has described this
egocentric
Questionnaire
perspective as the "looking glass
self."
See also
1420.
Adolescent
behavior,
including
An
care-
anonymous
self-report question¬
seeking behavior,
be
in¬
naire was administered in homeroom
at
can
powerfully
fluenced
by
concerns about
privacy.
There have been
reviews of stat¬
the three schools with the
help
of
many
Consequently,
assuring
confidential¬
utes
pertaining to consent and confiden¬
homeroom teachers. Instructions
were
ity
is
basic
for disclo¬
over the intercom and
a
principle
of adolescent
tiality,
well
as
as
guidelines
given
surveys
were
health care. Confidential care for ado¬
of information.4'7
Some studies have
collected in an
sure
envelope passed
around
lescents, however,
is an issue with con¬
explored physicians'
views on confiden¬
the room and sealed.
Following
written
troversial
medical, social, legal, ethical,
tiality8
or
the
attitudes of adolescents
notification of
parents,
passive
consent
and bureaucratic
implications.
The
privacy.911
Oth¬
presumed
unless
parents
returned a
on
family planning
and
was
American
Academy
of Pediatrics
Policy
have
discussed
youth
attitudes about
tear-offform
withdrawing
their child from
ers
Statement
Confidentiality
in Adoles¬
health care
delivery.12·13None,
however,
participation. Surveys
and
parental
con¬
cent Health Care
states
that "adoles¬
has studied
large
numbers of adoles¬
sent
forms
available in
were
English
and
cents tend to underutilize
existing
health
regarding
their
knowledge,
atti¬
Spanish
at school
C,
the
only
school with
cents
care
resources,"
and that lack of confi¬
tudes,
and
perceptions
about confiden¬
sizable
a
Spanish-speaking population.
dentiality
is
"a
significant
access barrier
tial
health
whether
care or
perceived
The
questionnaire
contained 64 true/
to
health
care."2
The
Society
for Ado¬
lack of confidentiality affects adolescent
false and Likert
scale
questions
that
lescent Medicine's Position
Paper
behavior.
piloted
and refined
prior
to the
on
were
Access to Health Care for Adolescents
This
study begins
to examine the in¬
study.
The
questions
measured
student
emphasizes confidentiality as one of sev-
teraction between
perceptions
of confi¬
knowledge
of
their
rights
in
receiving
dentiality
and utilization of
Un¬
confidential
their
about
care.
care,
perceptions
derstanding
the
importance
of this bar¬
confidential
health concerns
and
care-
From the
rier
health care is
crucial first
Department
of Pediatrics,
University of
to
a
step
seekingbehavior,
their experiences with
Massachusetts Medical
Center, Worcester.
to
improve service
delivery
to this
high-
confidential health
their
care,
percep¬
Reprint
requests
to
Department
of Pediatrics, Uni-
risk
It is
group.
particularly timely
in
tions about different health care
loca¬
versity
of
Massachusetts Medical Center, 55 Lake Ave
light
of recent efforts
to
require
tions, and their attitudes about confi-
N, Worcester, MA 01655 (Dr Cheng).
paren-

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dentiality on specific health issues. De¬ Table 1.—Characteristics of Survey Respondents mographic information includinggender, School A,
dentiality
on
specific
health issues. De¬
Table 1.—Characteristics of Survey Respondents
mographic
information
includinggender,
School
A,
School B,
School
C,
grade,
race, and school
were
also
col¬
Rural, %
Suburban, %
Urban, %
lected.
The
Characteristic
survey
was
designed
at
a
(n=410)
(n=183)
(n=702)
Total, %
seventh-grade
reading
level
and took
Gender
F
54.2
approximately 15
54.4
49.7
51.8
minutes to complete.
45.6
48.2
Statistical Analysis
Racial/ethnic
group
Asian American
0.8
0.5
5.5
Survey
data were
analyzedusing
Sta¬
Black
0.8
8.5
tistical
Package
for the Social
4.9
Sciences/
6.0
Personal
Computer
Plus.
Hispanic
25.5
15.6
Frequencies
of
White
responses
to
questions
about
attitudes,
94.5
53.0
perceptions,
and
knowledge
tab¬
Other
2.0
4.5
3.4
3.1
were
ulated
and
Grade
2 tests
with
Yates' correc¬
9
26.8
24.6
29.4
tion were used to
determine if any
27.9
dif¬
10
22.5
ferences existed with
27.9
regard
gender,
26.2
to
27.8
grade, school, and race.
If
significant
21.8
21.4
23.5
differences
12
were
found,
further
strati¬
23.0
25.7
21.3
22.5
fication was
performed
Has a
to
analyze in¬
place to go
for health
care
82.7
87.8
81.5
82.8
teractions between variables that
may
confound the results.
Table 2.—Perceptions of
RESULTS
Adolescents Regarding Health Concerns, Care-Seeking Behavior, and Health
Care Experiences (N=1295)
Of the 1493 students
present at the
three schools on the
day
of the
survey,
Yes Responses, %
I-
1295 (86.7%) returned
completedsurveys.
Total Responses, %
By Gender
By
School
By
Race
Fourteen
parents returned the
form
to
-1
-1
withdraw their
Survey Item
Yes
No
M
A and
from participa¬
C
White
Nonwhite
teenager
tion in the
Table
"There are some health con¬
survey.
1
presents
char¬
cerns that I would not want
acteristics
of the
respondents
in
each
my parents to know."
57.9
38.8
64.2*
55.1
67.9*
52.9
63.6*
51.0
school. Notably,
school C had
significant¬
"There are some health con¬
ly
more
minority
two schools.
The
students than the other
mean age of the respon¬
cerns that I would not want
friends and classmates
my
to
know."
68.5
28.2
73.4
68.1t
76.3*
66.1
73.8*
64.8
dents was 16.2 ±1.4
years.
"Would
ever
not go for
you
Students were asked
about confiden¬
health
care because
your
tial health concerns and
parents might find out?"
25.3
72.8
care-seeking
be¬
29.0*
21.3
32.2*
20.1
29.0*
16.6
havior (Table
go for
2).
Overall,
57.9%
had
"Would you ever not
health care because
your
health concerns
they
would not want
friends
or teachers might
parents
to know and
68.5% had concerns
find out?"
15.4
82.6
12.9
18.5*
19.0*
12.9
17.3t
11.5
they
wished to
keepprivate
from friends
"Since
becoming
a teenager,
when
you
have
and classmates.
gone
to
get
A
total of
25.3% would
health
care has
anyone
ever
forgo
health care if
parents
might
find
talked to you about
privacy?"
43.8
54.4
55.6*
32.9
39.5
49.0*
42.3
49.9t
out
and 15.4% if friends
teachers
or
might
'Significant
differences between
yes
P<.01.
find out. Those with health concerns
responses,
they
tSignificant difference between yes responses,
P=.01 to .05.
wished to
keepprivate
were more
likely
to
forgo
health
care
than those without
students and nonwhite students at school
find out: 12.0% vs
18.4%;
2=9.20;
P<.01).
such
concerns (35.8%vs 10.9%; 2=95.38;
C when asked whether
they
had health
Adolescents were asked
about their
P<.01).
concerns
they
wished to
keep
private
perceptions
of different health care lo¬
Responses
were
analyzed
with
regard
from
parents
or friends and whether
they
cations
(Table
3).
A list of five health
to
demographic
variables of
gender,
would
forgo
health services because
care locations
(their
regular physician's
grade,
and school. Females
than males to have concerns
friends
race,
were
might
find out.
However,
white
office,
other
physician's
office,
teen
clin¬
more
likely
students
at
school C were somewhat more
ic
or
other
clinic,
emergency
department,
they
wished to keep from
parents
and
likely
than nonwhite students to
forgo
and school
health
center)
were
given.
thus
forgo
care.
Females were
less
like¬
health services because
parents
might
Respondents
were asked to check off
all
ly
than
males to
forgo
care if friends or
find out
(24.4%
vs
15.0%;
2=8.70;P<.01).
locations where
they
would consider
go¬
teachers
might
find
out. White students
When
given
the
statement, "I have a
ing
for care if
they
had an illness "like
a
and rural and
suburban students were
doctor I can
trust,"
64.4% of all
bad
respon¬
sore throat,"
and also for "concerns
more
likely
to have confidential concerns
dents
agreed,
31.1%
disagreed,
and 4.4%
about
pregnancy,
AIDS
[acquired
im¬
and
forgo
if
care
parents,
friends,
or
no answer. Over
half
gave
(54.4%)
of all
munodeficiency
syndrome],
or
drug
or
teachers
might find
out
than nonwhite
students had never discussed confiden¬
alcohol
problems"
that
they
"wanted to
students
and
urban
students.
Re¬
tiality
with a health care
provider.
Those
keep private."
For those
respondents
sponses did not differ
by grade.
who
had discussed
privacy
with their
phy¬
with
a
regular
source of health
care,
To
separate
the effect of
school from
sician were less
likely
to
forgo health
85.5%
reported they
would
to their
go
data
from school C (the school with
race,
care because of
confidentiality
concerns
regular physician's
office for an illness
the
highest proportion
of
lower-income
than those who had
not
discussed
priva¬
like "a bad
would
sore
throat,"
but
only
56.9%
students)
were
analyzed
separately by
cy (forgo
care because
parents
might
find
go
to that
physician's
office for
There were no
race.
significant
differ¬
out:
21.8% vs
28.8%;
2=7.72;
P<.01;
for¬
private
health concerns.
Students were
of white
ences found between responses
go care because
friends
teachers
or
might
then
asked to
choose the single most

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Table 3.—Perceptions of Adolescents on Confidentiality of Health Care Locations (N=1295) might find out. This study
Table 3.—Perceptions of Adolescents on Confidentiality of Health Care Locations (N=1295)
might
find out. This
study
confirms the
notion that
perceived
lack of confiden¬
Adolescents
Willing
to Use
Location, %*
Adolescents' Assessment of
tiality may
be
barrier to health care
a
Health Care
Location Privacy, %f
for
adolescents.
some
For Private
The
majority
of students
(89%)
were
Health Care Location
For Illness
Concern
Most Private
Least Private
able to
choose
the correct definition of
Regular physician's office
Other physician's office
77.5
50.5
63.6
5.5
the word "confidential."
However,
only
5.9
6.8
about one third were aware
oftheir
right
Teen or other clinic
11.5
44.6
23.1
5.9
to confidential care for certain health
16.1
28.0
Emergency department
issues,
confirming
results of a small
study
School health clinic
13.7
12.4
3.1
51.0
of adolescents in
Massachusetts.14
Less
"Students were asked to check off all locations where
would consider
than half of the
they
going
for care.
respondents reported
tStudents were asked to choose the single most private
and least private locations.
having
talked about
privacy
with
ever
a
health
care
provider. Clearly, educating
Table 4.—Adolescent Knowledge of Confidentiality Laws (N=1295)
adolescents about
confidentiality
in
health care is needed. Those students
Answer
who had discussed privacy
in a health
"Don't
care setting
likely
to
for
were more
go
Question
Correct, %
Incorrect, %
Know," %
This
finding
reflect the effec¬
care.
may
your
state, teenagers
can
get
tiveness of
patient-provider
treatment
for
sexually
transmitted
disease or venereal disease with¬
of
confidentiality, although
discussions
this may be
out parents' knowing."
35.3
18.8
43.8
confounded
by
utilization.
state, a teenager
with a
"In your
There have been
reports
regarding
drug problem
can
get
treatment
the
de¬
without
21.4
47.0
difficulty
care
providers
have
in
his/her parents' knowing."
veloping
confidential
relationship
with
a
adolescents, independent
of
the
already-
private
and least
private
health location
health
providers
should
keep specific
established
provider/parent
relation¬
from
the same list of five locations
(Ta¬
health issues confidential and
We found that
responses
ship.13·15
a
large percent¬
ble
3).
The
regular
physician's
office
with
de¬
of
respondents
would
their
was
were
again
analyzed
regard
to
age
go
to
chosen most
frequently
(63.6%)
of¬
mographic
variables (Table
5).
Differ¬
regular physician
for
health con¬
as
private
fering
the most
privacy,
while a school
and
and the
ranked their
ences
were found
by gender, school,
cerns
majority
phy¬
health center was
selected most often as
race. Differences
also found
by
sician's office
the
were
as
most
private place.
having
the least
privacy.
Overall,
51.0%
grade,
with students of lower
grades
However,
fewer would see
their
physi¬
of
respondents
felt
school
health cen¬
a
more
likely
to favor disclosure on
issues
cian if
they had a private
health concern
ter was
the least
private among
the five
of
runningaway,
such as
or alcohol or
pregnancy, suicide,
sex¬
pregnancy,
AIDS,
locations listed. This
was not
significant¬
ually
transmitted
diseases,
and the hu¬
other
drug
problems. Multiple avenues
ly
different
the three schools
virus and AIDS.
of health
be
among
even
man
immunodeficiency
access
may
necessary
to
though only
school C has a school-based
meet the needs of adolescents
well as
as
COMMENT
health clinic.
However,
when
given
the
education of both
providers and patients
statement, "A school health clinic is
good
This article describes the
knowledge,
about
confidentiality
issues.
about
keeping things
private," signifi¬
perceptions,
Great
concern was
expressed
about
con¬
cantly
students from
school C
and attitudes about the
of health care of adolescents
more
fidentiality
the confidentiality
of school-based health
agreed
(41.2%)
compared
with students
in three
high
schools in central Massa¬
centers.
The
majority
of students felt it
from the other
two
schools
(34.0%;
chusetts. A
possible
limitation is
was the least
private place
to
the gen-
go
com¬
2=6.44; P=.01).
Also, when given
the
eralizability
of
findings
to other
office,
adoles¬
popu¬
pared
with a physician's
statement,
"I
might
not use
school
lations. In
a
addition,
use of schools
as
a
cent
clinic,
or
emergency
department.
health clinic because
other
people
(stu¬
site
survey
underrepresents high-risk
Students at the
school with
school-
one
a
dents, teachers,
parents) might
find
out
of students who
are not
enrolled
based health center
(school C)
groups
were
about
be
absent. There are
somewhat more favorable in their as¬
my
private
business,"
more stu¬
or
may
chronically
dents in
school C
disagreed
(39.2%)
than
also drawbacks in the use of
self-report
sessment ofthe
privacy
of a school health
did
respondents
from the
other two
questionnaires
because of the
difficulty
center,
although
majority
still ex¬
a
schools
(23.2%;
2=36.30;
P<.01).
of
validating replies.
Finally,
under¬
pressed
concerns.
Clearly, perceptions
The
also asked
respondents
to
standing
the
survey
impact
of adolescent
of this school health
center cannot
be
per¬
choose
the definition of the word "con¬
ceptions
about
confidentiality
in health
generalized
to students at other schools
fidential"
from
four
possible
care-seeking
behavior is diffi¬
with
health centers. It is
possible
that
among
care on
choices (to
put
end
an
to, to
confirm,
to
cult because what adolescents
they
students have little
experience
with or
say
keep
a secret,
to believe).
Eighty-nine
will do
(ie, regarding
forgoing
care)
understanding of school-based health
may
percent
checked the correct
definition,
be different from
what
they actually
do.
clinics.
They
also confuse the role
may
that did not
did show
of the school nurse
with the
dif¬
a
proportion
significantly
Our survey
questions, however,
very
differ
bygrade.
Students were
also asked
strong
internal
consistency and,
for the
ferent role ofan
independent
health clin-'
questions
to
assess their
knowledge of
questions
discussed, good
face
validity.
ic located at a school.
Nonetheless, the
their
rights
in
seeking
confidential
Our
findings
indicate that a
care
largepro¬
confirms adolescent
survey
skepticism
for
specific
health issues
(Table
4).
Un¬
portion
of adolescents have health
about the
con¬
confidentiality
of school health
like the
questiondefining"confidential,"
cerns
they
wish to
keep private.
Of im¬
care and
emphasizes the importance of
only about
third of the
respondents
portance,
one fourth of the
one
adolescents
establishing procedures
to ensure con¬
were
knowledgeable about
their
rights
reported
that
they
would not seek health
fidentiality
at
these
sites.
to confidential
for these
The differences
school and race in
care.
care
concerns if
they thought
by
Adolescents
asked
whether
teachers
attitudes about confidential health con-
were
that their parents, friends,
or

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Table 5.—Attitudes of Adolescents Regarding Confidentiality on Specific Health Issues (N=1295) Total Responses, % Yes Responses,
Table 5.—Attitudes of Adolescents Regarding Confidentiality on Specific Health Issues (N=1295)
Total Responses, %
Yes Responses, %
I
Yes, Should
No, Should
By Gender
By School
By Race
Keep
Not
Keep
Plan to run
Health Issue
away from home
Private
Private
A and
32.2
64.5
33.9
33.3
32.1
34.3
34.1
32.7
40.3
50.4
64.8*
63.4*
Pregnancy
Plan to commit suicide
Sexual abuse
15.2
14.6
11.8
19.1*
21.2t
77.3
19.7
21.6
24.0
69.9
Having sex
83.8*
75.2
Physical abuse
18.0
78.0
17.9
19.6
16.8
20.4
17.2
22.5t
Sexually
transmitted disease or
venereal disease
Alcohol or other drug problem
46.3
53.6*
53.8*
42.9
52.4*
38.8
34.7
62.0
32.4
39.6t
39.3t
32.9
37.4
31.9
Homosexuality
52.4
52.0
65.5*
AIDS/HIV* infection
35.2
60.3
39.8t
34.0
38.6
35.3
38.5
34.8
*Significant
differences
in yes responses,
P<.01.
tSignificant
difference In
yes
responses,
P=.01
to
.05.
JAIDS
indicates acquired immunodeficiency syndrome; HIV, human immunodeficiency virus.
cerns and in
willingness
ferent
must be educated about con¬
to seek care are
relationships with friends and fam¬
providers
intriguing.
When
controlling
for
school,
ily.
They
also
stem from different
sent
and
confidentiality guidelines. They
may
both
white and nonwhite students
physiologic
needs for care or a different
need to
be sensitive
an¬
to
confidentiality
swered
similarly regarding
health con¬
concept
of
susceptibility
and risk in re¬
issues in interactions with adolescents
they
wanted
to
keep private
gard
to these
confidential issues. It is
and
cerns that
parents
(for
example, seeing
adoles¬
from parents
and
peers. However,
there
also
possible
that care
providers
address
cents
and
parents
separately
for
part
of
difference
by
to
confidential
issues
differently
in
patients
the visit)
and in the
their office han¬
was a
race
in response
way
the question
forgoing
because
with white stu¬
of different
The
differences
by
dles
confidential information.
on
care
gender.
Also,
care
might
find
out,
gender
illustrated
in this
study
be
providers
must be educated about tech¬
parents
may
dents
less
likely
to
seek care. It is un¬
important in strategies
for intervention.
niques
to enhance communication be¬
clear if these differences reflect
ethnic,
The
regarding
confidenti¬
responses
tween
adolescents and their families.
school, socioeconomic,
or other differ¬
ality
for
specific
health
issues show that
This
study
is an
important
first
step
One
hypothesize
that in dif¬
students
ences.
can
perceive
the need to balance
in addressing perceived confidentiality
ferent racial or
socioeconomic
privacy and disclosure. In
particular,
barrier
as
a
to
adolescent health
care.
groups,
relationships
between adolescents
and
they
to understand the need for
Further
study
is needed
to explore why
appear
their
parents
are based on different ex¬
disclosure
in certain circumstances, de¬
adolescents
underutilize
health
re¬
pectations.
Further
study
of the inter¬
pending
the issue.
on
However,
most
sources and to discern how
perceptions
action
these variables is needed.
lack
knowledge
of their
legal rights
in
about
confidentiality
influence
behav¬
among
Differences
by gender
were evident
receiving
confidential health
again
ior. Studies of
care,
adolescent,
parent,
and
questions.
More females than
emphasizing
the need for education.
provider
variables that influence
ado¬
on
many
males had
health
they
Addressing
barriers
concerns
that
to
adolescent
lescent health care
perceptions
are also
wished to
keep private
from their
health
including perceived
lack of
This information is
par¬
care,
necessary.
particu¬
ents and that would
affect their behav¬
confidentiality,
is
to
reduce ad¬
larly important
in
light of
policy
efforts
necessary
ior; more males than females had health
olescent
morbidity
and
mortality.
Health
to
requireparental
consent
for birth con¬
concerns
they wished to
keep private
delivery
systems
must
be
structured to
trol and
abortion,
and with
changes in
from their
More females had dis¬
allow
confidentiality,
with mechanisms
health
delivery
and
financing
that
peers.
may
cussed
privacy
with their
providers.
Fi¬
for
appointment
scheduling,
billing,
put confidentiality at
risk.
nally,
females
and males had
different
record
keeping,
and
follow-up
that
en¬
views about disclosure of information on
The authors thank Evan
Charney,
MD, David
sure privacy
for adolescents. Adolescents
Keller, MD, Suzanne
Riggs, MD,
and Ken
Conca,
specific
issues. These differences
must
be educated
their
may
re¬
regarding
rights
PhD, for critical review and
help
in
arranging
sites
flect different socialization of females
and
to confidential health
care
and how
to
for the school
Thanks
also to
the schools for
survey.
males regarding these issues and/or dif-
access that care. Similarly, health care
allowing administration of the survey.
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