Clinical care needs and experiences for patients with spinal cord injury identifying as LGBT

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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.