Collier Girwan Khadka Stephanie Rusk Helen Russette Faculty Mentor Stephanie McVicar AuD CCCA Cytomegalovirus CMV Public Health Initiative Introduction ID: 418280
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Valerie Collier Girwan Khadka Stephanie Rusk Helen RussetteFaculty Mentor: Stephanie McVicar, AuD, CCC-A
Cytomegalovirus (CMV) Public
Health Initiative
Slide2Slide3
IntroductionWhat we know about congenital Cytomegalovirus (cCMV):Symptoms usually aren’t present at birthAdults are usually symptomless as wellIt is the leading cause of non genetic hearing loss in infants, with 40-58% of children infected with cCMV experiencing hearing losscCMV can lead to other birth defects and deaths in utero
Can be contracted in utero or through the birth canal
What did Utah do about it?
Mandatory
cCMV
testing done after two failed newborn hearing screenings
Testing must be done before 21 days to be classified as congenital CMV Slide4
Prevalence & Prevention1 of every 5 children born with congenital CMV will develop permanent disabilitiesThere is no vaccine or drug to treat CMV yet.Can be detected within 3 weeks of birth through blood, saliva, or urine testing50-80 of every 100 adults contract CMV before they are 40 years oldPrevention is easy, but not many people know how easy it is to prevent.Only 1 in 5 women are aware of the dangers of congenital CMV
Can be prevented through basic hygieneSlide5
MethodsSlide6
OverviewSlide7Slide8
ResultsSlide9
Results: Summary and the Five ThemesTable 1. CMV
Public Health Initiative: Participants
Participants
Group Total
Mentions Total
Freq.
Freq.
Parent of a children with CMV-induced disability(s)
5
58
Medical Experts
2
16
Policy advocate
1
30
Child with a CMV-induced disability
1
3
Total
9
107Slide10
Results: The Five Themes Table 2. CMV Public Health Initiative: Themes
Freq.
(%)
Theme
Definition:
Stigma
Incorrect and negative stereotypes were perceived from the individual or others about CMV exposure.
8 (
7.5%)
Lack of information
The following CMV-related information was not known: prevention, symptoms, or transmission.
16 (
15%)
Supports
Personal and outside supports provided individuals with positive feelings about themselves and/or CMV
exposure.
13 (
12.2%)
Awareness and education
Recommend more information about what is CMV, who is most at-risk, ways to prevent CMV exposure, and screening children at an early age.
44 (
41.1%)
Control and prevention
Personal and recommended
strategies were given that
can prevent the spread of CMV.
26 (24.3%)
a
Count of mentions for all key informant interviews.Slide11
Results: Theme ExamplesStigma: “At the daycare they were worried she was going to give everybody else CMV which from a medical side that is just silly.’” Lack of information: “I
asked, ‘Has your doctor talked to you about CMV?’ and they said ‘No what is that?’”
Supports:
“Finding
the CMV listserv was
amazing…it
was an amazing boost because it was like I’m not
alone
and there were so many
types
of families that had all been affected by it and it took away some of my judgment of myself.”
Awareness and education:
“This
[CMV] is a general public issue. This is not just an academic issue…policy issue…health issue…religious issue. This is something that the general public cannot ignore.”
Control and prevention:
“We
were very careful when my sister was pregnant because we were still shedding [the CMV virus]. I could control ‘no ur not going to change her [diaper]’ and keep that in our own family.” Slide12
ConclusionCytomegalovirus (CMV) Leading preventable cause of disabilityA significant public health issueYet lack of information about CMV among general public and healthcare providers Need for increased awareness and educationSignificant psychological and emotional impact
to individuals with CMV as well as to
family
Family
express desire for increased advocacy and outreach efforts Slide13
URLEND RecommendationsSlide14
URLEND Recommendations - ValerieSkills I have incorporated into genetic counselingClearer picture of family challengesInterdisciplinary teamChallenges to healthcare in more rural locationsHear more from the parentsParent panels were awesome!During seminars related to family systems and resources give time to parents to talk more about their experiencesSuggested movie / book listTo help acquire a few extra hours
Increased psychological support for parents/caregiversSlide15
URLEND Recommendations - SteffiMore understanding of the special needs health care systemIn depth understanding about new legislation that affects my audiology practiceWish there were more families that had audiology-related concerns or opportunities to share my audiology knowledgeI’d love to have a “who does what” panel or info sessions. Genetic counseling, etc. Slide16
URLEND Recommendations - GirwanMore information about the itinerant clinicsMore information from professionals regarding unique challenges and rewards of working in rural and urban areasMore discussion about differences in working in a hospital setting vs. community setting vs. itinerant settingMore information from professionals about their roles in interdisciplinary teams in the setting that they workCould be a panel discussion during orientation Slide17
URLEND Recommendations – Helen Continue URLEND OrientationLeadership group: meeting time, activities, project proposals. Allows direct interaction and facilitates team solidarity.Notification of assignments
Consistent communications method (e.g., email); one source for assignment dates and information (e.g., URLEND syllabus)
Supports meeting assignment deadlines; URLEND staff and trainees create a system with clear expectations. Slide18
Any questions?Any questions at all?