Humanitarian audiology, to many people, brings to mind images of an overseas mission.
However, it is not necessary to leave your community to provide humanitarian services.
It is estimated that as many as 30 million Americans lack basic health insurance coverage.[1] This amounts to one in ten Americans who are not able to access necessary care.
Additionally, individuals who are noncitizens have a shorter duration of residence
in the United States, lower levels of English proficiency, and lower probability of
access to a consistent source of care.[2] The working poor, uninsured, underinsured, refugees, and immigrants often rely on
free clinics to bridge the gap in healthcare. In short, there are vulnerable people
in the local community. [Table 1] displays data on individuals in the United States living below the poverty level,
those who are uninsured, and those who are immigrants, within heavily populated states.
These numbers provide a compelling argument to consider serving our local communities
when planning humanitarian missions.
Table 1
Number of People Living Below Poverty Level, Uninsured, and with Immigrant Status
in Highly Populated States in America, in 2017[1]
|
State
|
Below poverty level
|
No. of uninsured
|
Uninsured (%)
|
Immigrant
|
|
Pennsylvania
|
13.6%
|
910,205
|
11.90%
|
842,000
|
|
New York
|
15.9%
|
1,521,235
|
12.40%
|
4,491,000
|
|
Florida
|
16.6%
|
2,809,126
|
23.90%
|
1,801,000
|
|
Washington
|
13.2%
|
556,886
|
12.70%
|
987,000
|
|
Illinois
|
14.3%
|
1,109,614
|
14.00%
|
1,801,000
|
|
Texas
|
17.2%
|
4,201,804
|
25.80%
|
4,622,000
|
|
California
|
16.4%
|
4,168,408
|
17.30%
|
10,581,000
|
Resources in the United States for Free and Low-Cost Health Services
The National Association of Free and Charitable Clinics (NACF) was established in
2001 to assist those who fall through the cracks in our current healthcare system.
There are approximately 1,400 free clinics in the United States, some of which have
been in operation since the 1960s. Together, these clinics service an estimated 1.8
million people per year.[3]
[4] [Table 2] shows examples of the number of existing free clinics in a sampling of cities across
the United States.
Table 2
Number of Free Clinics Existing in a Sampling of U.S. Cities[5]
|
Location
|
Existing free clinics
|
|
Pittsburgh, PA
|
41
|
|
Buffalo, NY
|
11
|
|
Gainesville, FL
|
12
|
|
Seattle, WA
|
52
|
|
Chicago, IL
|
108
|
|
Dallas, TX
|
20
|
|
San Diego, CA
|
38
|
Despite the wide availability of these clinics, specialty care can be expensive, difficult
to access, and is often not available at these sites. This is particularly true of
hearing healthcare, as the high cost of hearing aids renders them out of reach for
members of vulnerable populations.
Federally Qualified Health Clinics (FQHCs) offer another option for those in need
of help accessing medical care. These are community-based centers that receive government
funding through the Health Resources and Services Administration (HRSA) with the goal
of providing care in underserved areas. These centers must meet strict requirements
to qualify for funding and must provide care on a sliding scale based on a patient's
ability to pay. Typically, an FQHC offers comprehensive services that include both
preventative and primary care, along with support services and rarely are subspecialty
services available. There are approximately 1,400 FQHCs spread across all 50 states
and U.S. territories and services are provided without regard to patients' citizenship
or insurance status.[6]
The Need for Hearing Care in Our Underserved Population
Members of vulnerable groups have a particular need for hearing care. According to
Emmett and Francis, hearing loss is associated with low educational attainment, low
income, unemployment, and underemployment. Even mild losses have been found to impact
speech/language development and school performance in childhood. Using data from the
National Health and Nutrition Examination Survey (NHANES 1999–2002), Emmett and Francis
demonstrated associations between low socioeconomic status and intrauterine growth
restriction, which places children at increased risk of complications involving hearing
loss and cognitive delays. Adverse effects can continue into adulthood limiting options
for higher education. Additionally, the NHANES data showed that individuals with hearing
loss had nearly two times the odds of unemployment, an annual income less than $20,000,
and a decreased likelihood for completing high school. The exact relationship between
low educational attainment and hearing loss is unclear. It can be difficult to determine
whether the hearing loss contributes to a lack of higher education, or if those who
have attained less education are more likely to pursue types of work that increase
noise exposure. In any case, the conclusion is that hearing loss and socioeconomic
status are related.[7] In short, many of the people who can particularly benefit from hearing care are
unable to afford it, particularly those who need to hear to access English language
learning.
The comorbidities of untreated hearing loss have received much attention in recent
scientific journals and popular press. Patients with hearing loss have been found
at greater risk for depression, isolation, and hospitalization; poorer adherence to
treatment recommendations; more preventable adverse medical events and accidental
injury; as well as accelerated cognitive decline and brain atrophy.[8]
[9] Furthermore, a recent University of Michigan study showed that adults younger than
50 years with hearing loss, even after adjusting for differences in socioeconomic
status and mental health, were more likely to engage in substance abuse.[10] Researchers suggested that the difference could be related in part to the marginalizing
effects of hearing loss.[5] These data are compelling in terms of illustrating the need for accessible audiology
services across geographic and socioeconomic lines.
The Critical Collaboration Leading to Hear-Up
Personnel and Sites
Students and professionals often volunteer time to conduct hearing screening programs.
However, once identified, members of vulnerable populations have very few options
for follow-up evaluation or treatment. Fortunately, there are organizations that provide
a framework, and funding, for students and professionals interested in serving these
groups. One such organization is the Albert Schweitzer Fellowship and is geared toward
student involvement. This national nonprofit organization supports graduate students
in the pursuit of high impact, volunteer community services, while facilitating the
mindful development of leadership skills. Interested students apply for funded fellowships
via a rigorous competitive process, managed through one of 15 Schweitzer Fellowship
Program chapters across the United States. Those who are accepted into the Schweitzer
Fellowship program are guided through the process of developing and implementing a
health-focused service project, addressing needs in under-resourced locations. Active
academic and clinical mentoring plays a major role in the success of each Schweitzer
project. Our local hearing care service began with a University of Pittsburgh AuD
student who successfully applied to become a Schweitzer Fellow. Her goal for the required
community service project was to provide audiology services and hearing aids to underserved
individuals, locally.[11] This Schweitzer audiology project began as an offshoot of healthcare services provided
at an existing free clinic.
The introduction of audiology into the Pittsburgh Schweitzer Fellowship program resulted
in the Hearing Education and Resources for Underserved Populations (HEAR-UP) project. This project, in collaboration with our University of Pittsburgh Medical
Center Audiology department, was designed to offer diagnostic testing, counseling,
and hearing aid dispensing as needed. Services were introduced first at the Birmingham
Free Clinic, operating in an urban neighborhood on the Southside of Pittsburgh. This
clinic services patients with no health insurance, many of who are homeless, undocumented,
or otherwise impoverished. Scheduling, communication, and transportation challenges
abound in this group of patients, such that services need to be delivered all in one
appointment, with no cost to patients.
In 2017, we duplicated the HEAR-UP program at an existing FQHC, the Squirrel Hill
Health Center (SHHC), in another neighborhood of the city of Pittsburgh. This center
services a broad array of under-resourced patients and is heavily accessed by immigrant
and refugee families.
At each of the HEAR-UP sites, audiology services are largely managed by students,
under the clinical supervision of the authors. Services are offered one time per month
at each site, throughout the year. Given the heavy workload involved in the management
of equipment, space, and scheduling issues, students now apply for Schweitzer Fellowship
project in pairs, so that the manpower is doubled at each site. It is efficient to
offer the services at one site in the morning and the other in the afternoon/evening,
on the same day of the month. HEAR-UP is currently in the fourth year of existence
and it is clear that this experience provides an exceptional educational opportunity
for students, while serving a critical need in the community.
Funding for Equipment and Supplies
Funding for equipment and hearing aids is procured from a foundation associated with
the Eye and Ear Institute at the University of Pittsburgh Medical Center. Donations
to the foundation provide a portable audiometer/tympanometer, Insta-Mold products,
hearing aids, and programming hardware. Cost of hearing aids has been reduced through
negotiation with one of the hearing aid manufacturers who was informed of the overall
goal of the project. An additional challenge involved in a once-a-month portable clinic,
at two different sites, is that all clinic equipment and materials must be removed
when the clinic day is over. The equipment and supplies are housed in a large, wheeled
suitcase. In addition to portable diagnostic equipment, this suitcase provides storage
for multiple pairs of hearing aids, tubing, domes, tools, Insta-Mold materials, a
NoahLink Wireless programmer, lighted curettes, amplifiers, and batteries, along with
all of the usual tools and disposable supplies necessary for hearing aid dispensing.
The Schweitzer Fellow students are responsible to monitor the inventory of hearing
aids and supplies on an ongoing basis. Additionally, these students manage the strategic
packing and unpacking of the suitcase, as well as set-up and break-down of the clinic
area for each sites' monthly clinic hours.
Logistics of Providing HEAR-UP Services
As noted, the logistics of running monthly clinics are primarily managed by two Schweitzer
Fellow students and one supervising audiologist at each site. During clinic hours,
an all-hands-on-deck approach is necessary to effectively manage the patient's schedule.
The schedule at the Birmingham site allows for appointments in 15-minute blocks, with
as many as nine patients scheduled in a morning. These appointments range from regular
follow-ups to hearing tests. If it is found that a patient could benefit from hearing
aids, the fitting is performed at the same appointment. This requires making Insta-Mold
earmolds, when needed. As such, two rooms are warranted to stay on schedule. For the
sake of consistency, only BTE hearing aids from one manufacturer, with size 13 batteries,
are dispensed.
The SHHC site follows a similar pattern, though most of the referrals at that site
are for hearing aid fittings. In these cases, a completed audiologic evaluation and
report is already available in the patient's medical record, on site as most of the
patients have had an evaluation completed at the University Medical Center. Appointments
at the SHHC are scheduled in 30-minute slots and, similar to the Birmingham site,
and two rooms are used at one time to manage the schedule.
At both sites, patients who are given hearing aids are scheduled to return the next
month for follow-up. The attendance rate for first follow-up appointments is nearly
100% at both sites. If the patient has reported successful use of the aid, verified
by data logging, the International Outcome Inventory for Hearing Aids (IOI-HA)[12] is completed at the first follow-up appointment. At the time of the fitting, each
patient is given a box of size 13 batteries. Batteries are available for pickup at
the front desk as needed, and the patient is instructed that when the battery supply
runs out, it is a good idea to come for a routine follow-up appointment. The follow-up
rate beyond the first post fitting appointment is considerably lower.
Eligibility
A management team is utilized at each clinic site to assure that the intended target
population is being served. The Birmingham Free Clinic is designed specifically for
patients without insurance; however, the audiology service has been known to make
exceptions. The hearing aid clinic is intended as a service of last resort; therefore,
patients who qualify for hearing aids through other sources are not eligible at the
sites. Patients who cannot afford the application fees for other funded programs can
be serviced through HEAR-UP.
At the SHHC, eligibility for hearing aid services is strictly determined by intake
staff at the clinic, based on family income levels. Specifically, patients at this
clinic can qualify for hearing aids if their income is below 200% of the poverty level.
Sustainability
As with any charitable clinic, sustainability is a priority. Sustainability is highly
dependent on continuing collaboration across all of the organizations who contribute
to this mission. [Table 3] lists the varied sources and types of contributions resulting in this collaborative
project and illustrates the complexity of this endeavor. After the contributions from
each party were agreed upon and secured, a considerable amount of ongoing relationship
building and communication has been necessary for sustainability.
Table 3
Sources and Types of Support Contributing to the Pittsburgh HEAR-UP Program
|
Type of agency/institution
|
Name of agency/institution
|
Type of support
|
|
Community service organization
|
Pittsburgh Schweitzer Fellowship Program
|
Funds student fellows' participation
|
|
Audiology center
|
UPMC Audiology
|
Personnel for mentoring and supervision; administrative and computer support; clinical
materials; computer and technical support; access to foundation funding
|
|
Charitable foundation
|
UPMC Eye and Ear Foundation
|
Funds equipment, supplies, and hearing aids
|
|
University with AuD program
|
University of Pittsburgh
|
Student recruitment; mentoring; clinical supervision
|
|
Free or charitable health clinic
|
Birmingham Free Clinic
|
Site integration within existing clinic; scheduling of appointments and follow-up;
eligibility determination
|
|
Federally qualified health center
|
Squirrel Hill Health Center
|
Site integration within existing clinic; scheduling of appointments and follow-up;
eligibility determination
|
Student involvement in the Schweitzer Fellowship is not necessarily required to provide
services at these clinics; however, collaboration with this organization has been
very worthwhile. The Fellowship requires students to spend time at monthly meetings
and to reflect upon challenges faced by the underserved population. Each new pair
of fellows is required to add a new component to the project, and existing fellows
cultivate an interest among other students in an effort that future student cohorts
will sustain interest.
Challenges
Some of the challenges arising in this endeavor have been described earlier. As in
any mobile or temporary clinic, there is a limit to the space and time that can be
devoted, in addition to what can physically be carried. Similarly, careful allocation
of funding is evaluated for the most critical needs. This poses the immediate challenge
to use of best practices in these clinics. For example, limited resources in funds,
space, and time preclude the use of a probe microphone system for hearing aid verification.
During initial fittings, first fit settings are used and adjustments are made based
on subjective feedback from the patient (often via a face-to-face or remote language
interpreter). Due to frequent communication barriers, there may be no more than the
intensity of the patient's smile to guide these adjustments. Anecdotally this is referred
to as the Smile Scale when initially determining the adequacy of fit. While this creates many ethical questions
regarding verifying the hearing aid fitting by the intensity of the patient's smile,
it is done with the best intentions, with an eye on patient satisfaction. As in any
humanitarian audiology setting, the goal is to dispense hearing aids that will be
worn consistently. Data logging has proven to be the most objective outcome utilized
in follow-up appointments.
As mentioned earlier, the follow-up rate after 6 months is low and the no-show rate
for these appointments is high. Many members of the patient population move frequently
and do not have consistently working phone numbers. Appointments are frequently canceled
due to lack of transportation. In 2018 the Birmingham clinic no-show appointment rate
was 30%.
Patients' cultural norms and language barriers are challenges that have required careful
consideration. At the Birmingham clinic, there is a Spanish language interpreter on
site; however, there is a diverse population speaking many languages. Family members
and friends often serve as translators; however, the message frequently gets lost,
or otherwise the family member does not include the patient in the discussion. Test
instructions can be particularly challenging when an interpreter is not available,
and reinstruction is needed multiple times. Access to a remote telephone translation
service is possible but expensive, and it is impractical to keep the translator on
the line while testing is completed. In one particular case, a child with special
needs who spoke only Portuguese needed an evaluation. Access to a Portuguese interpreter
was not available, and the family felt that the use of a Spanish interpreter may be
sufficient. In this case, it was determined that the path of least resistance was
the memorization of test instructions in Portuguese instead of attempting to use a
language that may be similar to the patient's native language. This year, written
test instructions in multiple languages have been gathered. To date, a list representing
16 languages has been obtained. [Fig. 1] is an example of one such set of test instructions.
Figure 1 Audiometric test instructions in Arabic.
Interestingly, it was thought that this population would lose hearing aids at a higher
rate than other groups; however, this has not been the case. To date, only four hearing
aids have required replacement for two individual patients, due to being lost or stolen.
Having fit over 40 patients with hearing aids at Birmingham alone since the start
of this project, this is not considered to be significant.
Impact
In 2018, the Birmingham clinic saw 34 appointments including 19 new patients; 18 hearing
aids were dispensed for nine patients, five of who had disabling hearing loss as defined
by the World Health Organization. The average age of patients seen in 2018 was 60.6
years. In regard to outcomes from the hearing aid fittings, patient data from the
IOI-HA have shown very favorable responses. Of 28 patients fit at the SHHC site over
the past year, all indicated that their enjoyment of life was either quite a lot better or very much better after at least 1 month of hearing aid use. In response to the question “Think again about the situation where you most wanted to hear better. When you use
your new hearing aids, how much difficulty do you still have in that situation?,” all responses were either no difficulty or slight difficulty, excepting two responses of moderate difficulty. Subjectively, the patients and their families consistently express gratitude for
hearing services. Perhaps the most unfortunate outcome of this service has been the
wait list time, which is now somewhere between 8 and 12 months for an initial hearing
aid fitting appointment at Squirrel Hill.
We have felt very fortunate to be able to extend hearing healthcare to a population
we care about. The impact on our individual patients has been profound. This population
faces challenges which are foreign to most of us. Care has been provided to homeless
individuals who come because they sleep in dangerous places, refugees who developed
tinnitus after narrowly escaping explosions, and a terminally ill patient who wanted
to engage during the time he had left. One of our graduated Schweitzer Fellows shared
the following experiences:
One patient at SHHC had a moderate to profound hearing loss and reported he could
not hear his granddaughter's voice. He said his goal was to hear her at Christmas
dinner, which was coming up in a few weeks. We fit him with hearing aids, and he was
immediately so happy to be able to hear us better. When we saw him for his follow-up
he started crying because he said he could finally hear his granddaughter and that
he once again was actively engaged in conversation with his family on Christmas day.
He was extremely grateful for our services!
I remember that one patient at Birmingham said he was having anxiety because he could
not hear his fire alarm but could not afford hearing aids to help with this. When
we saw him again, he reported that he tried out his alarm and was now able to hear
it, which gave him more peace of mind.
We saw a patient at SHHC who came in with his daughter. His daughter was in school
to become a dentist. He worked as a janitor and said he was having difficulty hearing
his coworkers, making it hard to perform his job adequately. His job was very important
to him, especially because he was trying to help his daughter through school. After
we fit him with aids, he said he was able to hear his coworkers once again and was
satisfied with his work performance once again.
Another student reflected on her experience as follows:
Our experiences with patients at Birmingham Free Clinic have truly been an impactful
reminder of how the services provided there continue to change lives for the better.
One such encounter was that of my partner and I meeting a middle-aged woman with hearing
loss for her first appointment. At first glance, she seemed only mildly frustrated
with the effects that hearing loss had in her life when it came to communicating and
feeling connected to the world around her. However, as she continued to tell us her
story, we saw how deeply these frustrations ran and what emotional and social consequences
she had faced as a result. Upon completing her hearing test and showing her the results,
she was shocked to learn that her hearing loss was clinically of a mild degree because
the difficulties she had been experiencing in everyday life were more severe. Following
this evaluation, we fit her with hearing aids and were very touched by her reaction.
She was overwhelmed with emotion and teared up as she started to tell us how long
this hearing loss had gotten in the way of communication with loved ones and even
simple interactions with strangers in her daily life. She kept asking us to speak
at a comfortable level and even got up, walking around the space, in awe that she
could hear us without having to strain or ask for multiple repetitions. As she thanked
us profusely and made her way out with a visibly positive change in her demeanor,
my project partner and I were reminded of the fact that a clinical change in hearing
that only seems mild to the onlooker translates to a very different degree out in
the world. This interaction among many continues to inspire us to truly listen to
our patients when they voice concerns instead of only relying on the clinical data,
and this will shape us into the best audiologists we can be for those we serve.
