Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices.

BACKGROUND: Sexual orientation and gender identity (SOGI) data collection in community oncology practices is critical to identify and address cancer inequities, but less than 20% of NCI Community Oncology Research Program (NCORP)-affiliated practices regularly collect SOGI data despite widespread recommendations. We evaluated multilevel barriers and facilitators for SOGI data collection at NCORP practices. METHODS: We conducted 14 semi-structured interviews at seven purposefully sampled NCORP oncology practices. We interviewed one clinician (oncologist, advanced practice provider) and one clinic staff member per practice. Thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR) was conducted to identify barriers and facilitators. RESULTS: Thematic saturation occurred after interviews at six practices and was confirmed with interviews at an additional practice. Participants highlighted multilevel barriers including low levels of understanding, information technology infrastructure, and perceived low relative priority. Not understanding the role of SOGI data in oncology care contributed to cis-heteronormative culture. At the clinic level, this culture coincided with a lack of processes and policies for collecting SOGI from all patients. At the care team level, perceived irrelevance to oncology care was related to discomfort asking SOGI, fear of patient discomfort, and limited awareness of SOGI in electronic health records. Suggested solutions included: normalizing asking SOGI questions, giving patients privacy to complete SOGI, and clarifying clinical relevance. CONCLUSIONS: SOGI data collection barriers stemmed from perceptions that SOGI disclosure does not influence care quality. Oncology teams may benefit from training on culturally sensitive SOGI collection, education on SOGI data relevance to oncology practices, and support for implementing SOGI data collection policies.

Factors enabling comorbidities and secondary conditions in older adults with spinal cord injury.

OBJECTIVE: To examine the role of personal, social, and environmental factors predicting comorbidities and secondary conditions among older adults with spinal cord injury (SCI). DESIGN: Cross-sectional study utilizing survey methods were used to collect the data analyzed with two distinct general linear models. SETTING: Community-dwelling participants who resided in rural and urban areas. PARTICIPANTS: One hundred and eighty-three (183) participants with SCI ages 45 and over at least five years post injury. INTERVENTIONS: Not applicable. MEASURES: Spinal Cord Injury Secondary Conditions Scale (SCI-SCS); Comorbidities Questionnaire; Spinal Cord Injury Functional Index Assistive Technology (SCI-FI/AT) Basic - Mobility; Spinal Cord Injury Quality of Life (SCI-QOL) Satisfaction with Social Roles and Activities Scale (SSRA); Cohen's Social Network-Social Integration Index, the Medical Outcomes Study (MOS) Social Support Emotional/Informational Support Scale, and the Facilitators and Barriers Survey for Mobility (FABS-Mv2). Questions were also asked from the Behavioral Risk Factor Surveillance System (BRFSS). RESULTS: Common predictors of comorbidities and secondary conditions included age, basic mobility, primary health care payer and parking limitations. An interaction between parking and neurological classification was observed for comorbidities. Neurological classification and employment were significantly associated with comorbidities while for secondary conditions, sex, years since injury, education, satisfaction with social roles and the home environment were critical factors. CONCLUSIONS: Our study shows the effects of demographic and injury factors, physical functioning, satisfaction with social roles, access to home environment adaptations and health resources in predicting comorbidities and secondary conditions among older adults with SCI.

Arbiters of Time: The Experience of Adults Aging with Spinal Cord Injury.

Time is a fundamental component of our lives. It is both objective, a structure outside of ourselves, and subjective, an element that is relative to the life we live and how we experience it. The disabled body must come to terms with time to understand the future impact of the injury and its progression, as well as how the injury will impose a new more accelerated aging process in the body, resulting in a compressed lifespan. The body also challenges time's control of the body. This paper extends the literature on the study of time to the experience of adults aging with a spinal cord injury (SCI). Drawing from interviews conducted with adults with long-term SCI, it examines how their narratives about aging and the proactive management of their lives reflect their orientation toward and anticipation of the future. Recognizing that the spoken word often carries a multiplicity of meanings, it considers what participants' words might imply about their engagement with time. The results of this study show that the process of aging is characterized by uncertainty and the expectations of functional and health decline, requiring a sense of urgency and vigilance in the face of the uncertain course of aging with SCI. Participants understood that their lifespan was compressed due to the physiological impact of accelerated aging. Knowledge of this compression made time a scarce resource. Yet, despite it being the arbiters of their futures, so too were they the arbiters of time.

Ableism and Contours of the Attitudinal Environment as Identified by Adults with Long-Term Physical Disabilities: A Qualitative Study.

Adults with physical disabilities experience a continuum of enabling and disabling attitudes in the environment. This study identified where adults with physical disabilities experience the attitudinal environment, the continuum of those attitudes, and how they impact emotional and psychological health and well-being. Focus groups and interviews were conducted in 2019 and 2020 with adults with physical disabilities in southeastern Michigan in the United States. Participants discussed environmental factors that impact healthy aging. From an initial thematic coding of narratives, the attitudinal environment was identified. Transcripts were recoded and analyzed focusing on societal attitudes. Qualitative analyses revealed that participants did not experience societal attitudes as simply positive or negative, and that the contexts in which these attitudes were expressed were not limited to interpersonal interactions. Rather, these attitudes were also experienced in the built environment and through social institutions and organizations and their programs, systems, and structures that provide or deny needed accommodations, resources, and support. The spectrum of overlapping attitudes that participants articulated ranged from understanding and supportive, to not understanding, to being viewed and treated as less than human. Societal structures reflect and influence societal attitudes and have material consequences on the lives of adults with physical disabilities.

Fear, Isolation, and Invisibility during the COVID-19 Pandemic: A Qualitative Study of Adults with Physical Disabilities in Marginalized Communities in Southeastern Michigan in the United States.

This study examines the initial impact of the COVID-19 pandemic on adults with physical disabilities from marginalized communities in southeastern Michigan, one of the early pandemic epicenters in the United States. A purposeful sample of fifteen adults with moderate to severe physical disabilities were recruited, taking part in individual remote semi-structured qualitative interviews, which were recorded, transcribed, and coded for emergent themes using a thematic approach to coding and analysis. Three interrelated, overarching themes emerged: fear, feelings of isolation, and a sense of being invisible. These were identified in the contexts of health and healthcare, home care assistance, and access to resources. The findings help illuminate the experiences of those from socioeconomically and racially marginalized communities, populations that are often "always already" vulnerable. Participant narratives made visible the negative impact of the pandemic on physical and mental health as well as the lack of accommodations available. They showed that participants were faced with a dilemma between engaging in risky behavior to have their needs met or avoiding risk and not have those needs met. This knowledge can expand awareness and appreciation of how social, economic, and political systems impact adults with physical disabilities in lower-income and racially diverse communities and provide guidance in designing future clinical and emergency response policies.