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?