Introduction: Patients with rare and/or care-intensive conditions, such as Ehlers-Danlos Syndrome (EDS), can pose challenges to their healthcare providers (HCPs). The current study used the BITTEN framework¹ to code EDS patients’ open-ended written responses to a needs survey to determine their self-reported prevalence of healthcare institutional betrayal and its link with their expressed symptoms, provider perceptions, unmet needs, and on-going healthcare-related expectations. Methods: Patients with EDS ( n = 234) were recruited via a rare disease electronic mailing list and snowball sampling. A total of one-hundred and six respondents (45.3%) endorsed having unmet healthcare-related needs; of these, 104 (99%) completed an open-ended prompt about these needs. Responses were coded for components of BITTEN, a framework designed to link patients’ past, current, and future healthcare-related experiences in a trauma informed manner. Results: Many respondents with ongoing needs endorsed experiencing past institutional and provider betrayal (43%; n = 45), current mental health symptoms (91.4%; n = 95), negative expectations for future healthcare (40.4%; n = 62), and a lack of trust in their healthcare provider (22.1%; n = 23). There were no significant differences in post-traumatic stress disorder (PTSD)/anxiety, depression/sadness, or isolative symptoms between respondents coded for institutional betrayal ( n = 45) compared with those not ( n = 59). However, EDS respondents reporting institutional betrayal were significantly more likely to self-report anger and irritability symptoms, a lack of trust in their HCPs, and more negative expectations for future healthcare than those not reporting institutional betrayal. Discussion/conclusions: The frequent spontaneous reporting of past healthcare betrayals among patients with EDS implies the need for trauma-informed care and provider education. Given that experiences of institutional betrayal are associated with increased anger and irritability, as well as with negative expectations for future healthcare interactions, efforts to repair healthcare provider and system-wide relationship ruptures might have positive healthcare consequences. Plain language summary: Reports of Institutional and Provider Betrayal and Links with Ehlers-Danlos Syndrome Patients’ Current Symptoms, Unmet Needs and Future Healthcare Expectations What is EDS? Ehlers-Danlos Syndrome (EDS) refers to a group of rare genetic connective tissue disorders that are primarily characterized by skin hyperelasticity, joint hypermobility, and tissue fragility. Connective tissue is largely responsible for the structural integrity of our bodies, and there are several EDS subtypes which each describe a specific connective tissue problem. In addition, there is significant overlap between EDS types and other kinds of connective tissue disorders. As a result, recognizing, diagnosing, and treating EDS is often challenging. What is Institutional betrayal? Institutional Betrayal here refers to a harmful action (i.e. commission) or lack of action (i.e. omission) on the part of a healthcare institution, individual provider/healthcare team, or insurance company. When a patient trusts that the healthcare system will act in their best interest, and trust is violated, institutional betrayal occurs. What is BITTEN? BITTEN is an acronym for Betrayal, Indicator, Trauma symptoms, Trust, Expectations, and Needs. It is a framework meant to capture previous problematic healthcare-related experiences in EDS patients, then to consider how those experiences influence a patient’s current symptoms, provider trust, future expectations in healthcare encounters, and on-going needs. Why was this done? EDS, like many rare diseases, is hard to recognize and manage. We aim to: Give voice to EDS patients and their common unmet needs and healthcare-related expectations. Highlight how healthcare providers can apply BITTEN to improve care practices in rare disease patient encounters. What did we do? Using a newly articulated applied model of healthcare, BITTEN, we analyzed the open-ended responses of EDS patients describing their unmet emotional and mental health needs. What did we find? Nearly half of EDS patients who indicated they had unmet needs reported experiencing institutional betrayal. EDS patients who reported institutional betrayal also expressed anger, a lack of trust in healthcare providers, negative expectations for future healthcare, and more unmet needs more frequently than EDS patients who did not report institutional betrayal. What does this mean? The EDS patients in this sample were not directly asked if they had experienced institutional betrayal, so the exact prevalence is not known. Furthermore, responses were obtained voluntarily via the internet, so caution should be taken when generalizing these findings. However, results indicate that too many patients with EDS have experienced healthcare betrayals; these experiences are associated with current anger and negative expectations for future healthcare interactions. The prevalence of past negative healthcare experiences, along with current unmet needs and future negative healthcare expectations in EDS patients who have experienced institutional betrayal, highlights the need for healthcare providers to tend to these experiences, mend patient-provider barriers, and provide higher quality healthcare.

A clear link between insomnia concerns and suicidal ideation has been shown in a variety of populations. These investigations failed to use a theoretical lens in understanding this relationship. Research within the veteran population has demonstrated that feelings of thwarted belongingness (TB), but not perceived burdensomeness (PB), mediate the insomnia and suicidal ideation relationship. Using two high risk samples, the present investigation replicated and extended this line of inquiry to include interpersonal hopelessness about TB, a key component of the Interpersonal Psychological Theory of Suicide. Using medical record review and survey data, study 1 replicated the finding that TB is a stronger explanatory factor of the insomnia to suicidal ideation/suicide risk relationship in a sample of N = 200 treatment-seeking active-duty personnel. Study 2 found that insomnia symptoms had an indirect effect on suicidal ideation through TB and PB but not interpersonal hopelessness in a sample of N = 151 college students with a history of suicidal thoughts and/or behaviors. TB was the only mediator of the insomnia-suicide attempt likelihood link and insomnia to clinically significant suicide risk screening status. Limitations include cross-sectional design of both studies and the lack of formal diagnoses of insomnia. Implications and future research directions are discussed.

One factor potentially driving healthcare and hospital worker (HHW)'s declining mental health during the COVID-19 pandemic is feeling betrayed by institutional leaders, coworkers, and/or others' pandemic-related responses and behaviors. We investigated whether HHWs' betrayal-based moral injury was associated with greater mental distress and post-traumatic stress disorder (PTSD) symptoms related to COVID-19. We also examined if these associations varied between clinical and non-clinical staff. From July 2020 to January 2021, cross-sectional online survey data were collected from 1,066 HHWs serving COVID-19 patients in a large urban US healthcare system. We measured betrayal-based moral injury in three groups: institutional leaders, coworkers/colleagues, and people outside of healthcare. Multivariate logistic regression analyses were performed to investigate whether betrayal-based moral injury was associated with mental distress and PTSD symptoms. Approximately one-third of HHWs reported feeling betrayed by institutional leaders, and/or people outside healthcare. Clinical staff were more likely to report feelings of betrayal than non-clinical staff. For all respondents, 49.5% reported mental distress and 38.2% reported PTSD symptoms. Having any feelings of betrayal increased the odds of mental distress and PTSD symptoms by 2.9 and 3.3 times, respectively. These associations were not significantly different between clinical and non-clinical staff. As health systems seek to enhance support of HHWs, they need to carefully examine institutional structures, accountability, communication, and decision-making patterns that can result in staff feelings of betrayal. Building trust and repairing ruptures with HHWs could prevent potential mental health problems, increase retention, and reduce burnout, while likely improving patient care.

The COVID-19 pandemic has forced couples to navigate illness-related stressors and unique public health responses, including extended lockdowns. This study focused on under-resourced North Carolina residents (n = 107) who self-reported changes in relationship conflict (Increased, Decreased, Stayed the Same) and intimate partner violence (IPV) during the pandemic. We expected high rates of increased conflict and IPV since the start of the pandemic. We then sought to determine the associations between dyadic changes in conflict and reports of IPV and pandemic-related experiences and responses. Participants completed a brief online survey assessing their demographics, COVID-19 exposure/stressors, and pandemic responses. As expected, reports of increased couple conflict were related to difficulties getting needed social support, loss of health insurance, more fear and worry, stress, pain, and greater use of alcohol and/or illicit drugs, related to the coronavirus. Participants reporting increased conflict were also more likely to be unemployed. Conversely, reports of decreased conflict were associated with being ill from the virus (48.9%), having health insurance, and working part time. Substantial amounts of IPV were reported (62.2% of the sample); however, increased conflict and IPV were unrelated. Those reporting No IPV were less likely to be receiving public assistance but more likely to have home responsibilities due to the virus. They also reported increased social interactions and less use of alcohol than those reporting IPV perpetration. Findings highlight key associations among pandemic experiences and responses, IPV, and couple functioning in an under-resourced sample. Efforts to facilitate coping, resilience, and tolerating uncertainty may facilitate cooperative and safe couple functioning throughout the pandemic.