valerie collier girwan khadka stephanie rusk helen russette faculty mentor: stephanie mcvicar, aud,...
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VALERIE COLLIER GIRWAN KHADKA STEPHANIE RUSK HELEN RUSSETTE
FACULTY MENTOR: STEPHANIE MCVICAR,
AUD, CCC-A
Cytomegalovirus (CMV) Public Health Initiative
Introduction
What we know about congenital Cytomegalovirus (cCMV): Symptoms usually aren’t present at birth Adults are usually symptomless as well It is the leading cause of non genetic hearing loss in
infants, with 40-58% of children infected with cCMV experiencing hearing loss
cCMV can lead to other birth defects and deaths in utero
Can be contracted in utero or through the birth canalWhat 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
Prevalence & Prevention
1 of every 5 children born with congenital CMV will develop permanent disabilities
There is no vaccine or drug to treat CMV yet.
Can be detected within 3 weeks of birth through blood, saliva, or urine testing
50-80 of every 100 adults contract CMV before they are 40 years old
Prevention 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 hygiene
Methods
Overview
Contact
• Connected with the CMV community• Interviews were scheduled with families
Interviews
• Family story Life today• Support systems Outreach and
prevention
Video
• Interviews analyzed to identify themes and significant quotes
• Film editing
Eight Interview
s
Utah Representati
ve Ronda Menlove
Children with hearing
loss
Mother lost her baby at 24 weeks
Children with
significant disabilities
Healthcare providers
Results
Results: Summary and the Five Themes
Table 1. CMV Public Health Initiative: Participants
ParticipantsGroup Total Mentions
TotalFreq. 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 9 107
Results: The Five Themes
Table 2. CMV Public Health Initiative: ThemesFreq.(%)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.
Results: Theme Examples
Stigma: “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.”
Conclusion
Cytomegalovirus (CMV) Leading preventable cause of disability A significant public health issue Yet lack of information about CMV among
general public and healthcare providers Need for increased awareness and education Significant psychological and emotional
impact to individuals with CMV as well as to family
Family express desire for increased advocacy and outreach efforts
URLEND Recommendations
URLEND Recommendations - Valerie
Skills I have incorporated into genetic counseling Clearer picture of family challenges Interdisciplinary team
Challenges to healthcare in more rural locationsHear more from the parents
Parent panels were awesome! During seminars related to family systems and resources
give time to parents to talk more about their experiencesSuggested movie / book list
To help acquire a few extra hoursIncreased psychological support for
parents/caregivers
URLEND Recommendations - Steffi
More understanding of the special needs health care system
In depth understanding about new legislation that affects my audiology practice
Wish there were more families that had audiology-related concerns or opportunities to share my audiology knowledge
I’d love to have a “who does what” panel or info sessions. Genetic counseling, etc.
URLEND Recommendations - Girwan
More information about the itinerant clinicsMore information from professionals
regarding unique challenges and rewards of working in rural and urban areas
More discussion about differences in working in a hospital setting vs. community setting vs. itinerant setting
More information from professionals about their roles in interdisciplinary teams in the setting that they work Could be a panel discussion during orientation
URLEND Recommendations – Helen
1. Continue URLEND OrientationA. Leadership group: meeting time, activities,
project proposals. B. Allows direct interaction and facilitates team
solidarity.
2. Notification of assignmentsA. Consistent communications method (e.g.,
email); one source for assignment dates and information (e.g., URLEND syllabus)
B. Supports meeting assignment deadlines; URLEND staff and trainees create a system with clear expectations.
Any questions?
Any questions at all?