Addressing Ableism through Accommodations for Blindness and Low vision to achieve Equity (AAABLE) in Healthcare
Project Number1R01EY036667-01
Contact PI/Project LeaderRIZZO, JOHN ROSS Other PIs
Awardee OrganizationNEW YORK UNIVERSITY SCHOOL OF MEDICINE
Description
Abstract Text
PROJECT SUMMARY/ABSTRACT
Visual impairment engenders mobility losses, debility, illness and premature mortality. Visual disability and
related mobility losses correlate with high barrier volume in the healthcare domain, perpetuating health inequities
and severely compromising quality of life (QoL). In many cases, health and wellbeing are ‘attacked’ by vision
loss in any form factor and psychosocial barriers such as anxiety and depression are compounding influences
that increase as deficits scale. Imagine navigating a new hospital or clinic with little or no vision, using assistive
technology that inconsistently operates or trying to read accessible content that is only employed in ‘some’ care
areas. Navigating complex healthcare systems that require a client to ‘jump’ from island of accessibility to island
of accessibility is not sustainable; the result is a tendency to directly avoid care centers, missing appointments
or to create excuses to indirectly avoid this inaccessible quagmire. In fact, data suggests that patients with
blindness and low vision (PBLV) are less likely to be screened for cancer and much more likely to be diagnosed
with cancer later, on average, with larger tumor burden and higher stage, resulting in greater mortality rates. Our
central hypothesis is that health inequities stem, in large part, to inaccessible medical facilities and require
comprehensive frameworks that offer, maintain and support reasonable accommodations. To better support
PBLV and augment personal freedom and agency through the promotion of health and wellbeing, we seek to
engage in a mixed-methods approach that leverages qualitative methods to systematically characterize the
required support and accommodations and then quantitative methods to assess the performance of a new
implementation framework with tailored performance metrics. Our Team is well-positioned to successfully
execute all study goals with unique disability leadership, lived experience and care coordination/care navigation,
an evidence-based intervention to overcome structural factors impacting access to care. The proposal has three
aims conducted across three phases, focused on characterization, creation and testing/validating this approach
in an urban healthcare setting. First, we will identify factors that affect the accessibility of healthcare services for
PBLV. We will then use intervention mapping to develop a patient navigation intervention to assist with the
provision of reasonable accommodations for PBLV. Third, we will evaluate the navigation intervention to ensure
the reasonable accommodations are both feasible and effective. Given this foundation and planned advances,
we predict that this implementation framework will substantially mitigate barriers and associated adverse health
outcomes, promoting health equity.
Public Health Relevance Statement
PROJECT NARRATIVE
The burden of visual disability in the U.S. is substantial and ever-growing; myriad disparities in health and
healthcare result in significant inequities, inequities that are not only disproportionately higher for this population
but also largely unaddressed. We will use mixed methods to support novel qualitative methods to better
understand exactly what is needed with regards to reasonable accommodations and devise an implementation
strategy to evaluate and test such services in these populations. Our transdisciplinary and national team will use
a patient-centered approach that leverages input from participants with lived experience and disability experts to
foster the creation of solutions that promote equity, ultimately benefitting visually impaired persons worldwide.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AddressAffectAnxietyAppointmentAreaBehaviorBlindnessCaringCharacteristicsChronic DiseaseClientClient satisfactionClinicClinics and HospitalsComplexDataDeath RateDebilityDiabetes MellitusDiagnosisDisabled PersonsDisparityEconomic BurdenEnsureEpidemicEquitable healthcareEquityEvaluationEvidence based interventionFosteringFoundationsFractureFreedomGoalsHealthHealth PersonnelHealth PromotionHealth Services AccessibilityHealthcareHealthcare SystemsHospitalsImpairmentInequityInterventionInterviewIslandLeadershipLived experienceMalignant NeoplasmsMedicalMental DepressionMethodsModelingOncologyOphthalmologyOutcomeParticipantPatient RecruitmentsPatientsPerformancePersonal SatisfactionPersonsPhasePopulationPositioning AttributePremature MortalityPrevalenceProcessQualitative MethodsQuality of CareQuality of lifeRandomizedReach, Effectiveness, Adoption, Implementation, and MaintenanceResearch PersonnelRiskScreening for cancerSelf-Help DevicesServicesSocietiesTestingTimeTumor BurdenUnemploymentUrban HealthVisionVisitVisual disabilityVisual impairmentVisually Impaired PersonsWaiting Listsableismacceptability and feasibilitycare coordinationdigitaldisabilitydisabledevidence baseexperiencefallsfear of fallinghealth care availabilityhealth care servicehealth care service organizationhealth care settingshealth disparityhealth equity promotionhealth inequalitiesimplementation frameworkimplementation strategyinnovationintervention mappinglenslong bonemedical services inaccessibilitynavigator interventionnovelpatient navigationpatient navigatorpatient orientedpragmatic studyprogramspsychosocialpsychosocial outcomerecruitsecondary outcomesocioeconomicsstemstructural ableismstructural determinantstreatment arm
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Publications
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