Clinical care needs and experiences for patients with spinal cord injury identifying as LGBT
Project Number1I21HX003377-01A1
Former Number1I21HX003377-01A1
Contact PI/Project LeaderKIRATLI, BEATRICE JENNY
Awardee OrganizationVETERANS ADMIN PALO ALTO HEALTH CARE SYS
Description
Abstract Text
Background: Numerous challenges are faced by individuals in the general community who identify as lesbian,
gay, bisexual or transgender (LGBT) when seeking healthcare. The LGTB community reports harassment,
disrespect, discrimination and delay in care as well as reduced likelihood to receive needed screening tests.
Many LGBT Veterans are resistant to seeking VA healthcare at all based on past discrimination (perceived and
real) and an unwelcoming system. For LGTB Veterans with spinal cord injury and disorders (SCI/D), there are
likely additional considerations related to sexuality, bowel and bladder care, body image and mental health.
Health care providers often lack experience in dealing with the physical and mental health and sociocultural
issues related to LGBT identity, especially in the context of delivering SCI specialty care. Therefore, there is a
great need for information on the experiences and unmet needs of this population in order to design VA clinical
programs to correctly and sensitively address their complex health care needs and promote their wellbeing.
Significance/Impact: This pilot project addresses HSR&D priority areas of Access to Care, Health Equity, and
Disability/SCI. Our overarching goal is to open the door to improving VA health care for this vulnerable and
understudied population. Based on limited clinical experience, awareness of the problems commonly faced by
individuals with SCI/D, and extrapolation from published findings from the non-disabled LGBT population, we
expect to find significant disparity in access to knowledgeable clinicians who are sensitive to the specific needs
of LGBT Veterans who live with SCI/D. Our study will provide essential information from both Veteran and
provider perspectives to begin to fill this gap and contribute invaluable data towards developing solutions.
Innovation: This project is innovative as there is a dearth of information regarding health care needs of LGBT
Veterans with SCI/D. The investigative team includes experts in LGBT health care within and outside VA; VA
SCI clinicians; and VA researchers with expertise in SCI/D clinical care and programs, qualitative methodology,
and VA program implementation. Evidence of SCI/D and Veteran-specific experiences and barriers as well as
VA provider knowledge and attitudes will be novel information not available in the literature.
Specific Aims: 1) Elicit the perspectives of LGBT Veterans with SCI/D about their experiences with VA care,
and 2) Elicit the experiences of SCI/D providers and their approaches to caring for LGBT Veterans with SCI/D.
Methodology: We will apply qualitative methodology to elicit (i) personal perspectives and lived experiences of
25 Veterans and (ii) attitudes and knowledge/awareness of 15 health care professionals whose focus is SCI/D
care. We will sample from the 25 VA SCI/D Centers to include different regions of the country, sampling urban
and rural settings. We will aim for inclusion across the LGBT spectrum and will over-recruit female participants
to include the potentially unique perspectives of women with SCI/D. We will aim to recruit a range of ages as
well as SCI chronicity ranging from recently injured to SCI of long duration. We will include all ethnic/racial
groups in order to explore potential cultural issues. The VA SCI/D provider cohort will include physicians and
surgeons, nurse practitioners, nurses, therapists, psychologists, social workers, and any relevant disciplines.
We will conduct semi-structured interviews with open-ended questions and prompts and then perform matrix
analysis drawing from existing SCI/D and LGBT literature to identify barriers, attitudes, and experiences of
patient and clinician cohorts. We will probe for positive experiences in addition to barriers and unmet needs.
We will primarily use the Health Equity Promotion model as the basis for our domains of enquiry overlaid with
the theoretical framework of the International Classification of Functioning, Health and Disability.
Implementation / Next Steps: Future research may involve validation of our findings via a more comprehensive
qualitative study, a population-based survey, analysis of relevant health services utilization, and development
of training programs to better meet the needs of this population through implementation of targeted care.
Public Health Relevance Statement
Minimal information is available on the health care experiences and needs of Veterans with spinal cord injury
or disorders (SCI/D) who identify as lesbian, gay, bisexual or transgender (LGBT). Veterans and Active Duty
Service Members with SCI/D have access to a large comprehensive system of specialty care within the VA
health care system for physical and mental health care across their lifetime. The mission of the VA SCI/D
Centers is to maximize function and independence and promote quality of life, and SCI/D care covers physical
functioning, wellness, medical and surgical needs, and psychosocial care provided via inpatient, outpatient and
telehealth settings. However, Veterans with SCI/D who identify as LGBT may have additional health problems
and concerns that are not addressed by standard SCI/D programs as VA providers may lack the experience,
sensitivity, and/or knowledge to manage their specific needs. The goal of this study is to collect information
from patients and providers to better understand these issues in order to offer quality care to these Veterans.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AddressAgeAreaAttentionAttitudeAwarenessBehaviorBisexualBladderBody ImageCaringChronicClassificationClinicalCommunitiesComplexCountryDataDepression and SuicideDevelopmentDisciplineDiscipline of NursingDiscriminationDiseaseFaceFemaleFrightFutureGaysGeographic LocationsGoalsHealthHealth PersonnelHealth ProfessionalHealth Services AccessibilityHealth SurveysHealthcareHealthcare SystemsIndividualInpatientsInternationalIntersexInterviewIntestinesKnowledgeLesbianLesbian Gay BisexualLesbian Gay Bisexual TransgenderLiteratureMammographyMedicalMental HealthMethodologyMilitary PersonnelMissionModelingNurse PractitionersNursesOperative Surgical ProceduresOutpatientsParticipantPatientsPersonal SatisfactionPersonsPhysical FunctionPhysiciansPilot ProjectsPoliciesPopulationProstateProviderPsychologistPsychosocial Assessment and CarePublishingQualitative ResearchQuality of CareQuality of lifeRaceRecording of previous eventsRehabilitation therapyReportingResearchResearch MethodologyResearch PersonnelResistanceResourcesRiskRuralSamplingServicesSex FunctioningSexual and Gender MinoritiesSexualitySocial WorkersSocietiesSpinal cord injuryStructureSurgeonSurveysSystemTestingTrainingTraining ProgramsTrustValidationVeteransWomanactive dutybaseclinical carecohortdesigndisabilitydistrustexperiencehealth equityhealth equity promotionhealth inequalitieshealth service useimprovedinjuredinnovationmalemedical specialtiesmembernovelpatient orientedphysical conditioningpopulation basedprogramspsychosocialracial and ethnicrecruitrural settingscreeningservice membersexual traumasocialsocial culturetelehealthtransgendertransgender mentransgender womenurban setting
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