---
title: "Lived experiences of people with autonomic dysfunction: symptoms, care barriers, and patient–provi"
id: "plos-one-21-lived-experiences-and-perspectives-of-persons-with-conditions-marked-by"
canonical_url: "https://medichelpline.com/clinical-feed/plos-one-21-lived-experiences-and-perspectives-of-persons-with-conditions-marked-by"
content_type: "clinical_feed_article"
specialty: "Neurology"
source_name: "PLOS ONE (Medicine)"
source_url: "https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0355952"
published_at: "2026-08-17T14:00:00.000Z"
evidence_level: "Journal Feed"
license: "CC-BY-NC-4.0 / Informational Use"
---
# Lived experiences of people with autonomic dysfunction: symptoms, care barriers, and patient–provi
## Provenance & Clinical Metadata
- **Canonical URL:** https://medichelpline.com/clinical-feed/plos-one-21-lived-experiences-and-perspectives-of-persons-with-conditions-marked-by
- **Specialty:** [Neurology](https://medichelpline.com/clinical-feed/neurology.md)
- **Primary Source:** PLOS ONE (Medicine)
- **Source URL:** [Original Journal Publication](https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0355952)
- **Published At:** 2026-08-17T14:00:00.000Z
- **Evidence Rating:** Journal Feed
## Executive GIST (TL;DR)
- This mixed-methods cross-sectional study explored lived experiences of people with conditions marked by **autonomic dysfunction**, recruiting deliberately from marginalized and vulnerable populations. Participants (n = 489) completed a survey and a subset (n = 45) took part in semi-structured interviews. - The study defines persistent autonomic dysfunction as a state of **persistent sympathetic activation** with parasympathetic withdrawal that disrupts homeostasis and promotes inflammation and oxidative stress linked to chronic disease. - At the healthcare system level, participants reported concerns about limited provider availability and insufficient system-level supports for both patients and clinicians. - At the provider level, participants described frequent negative experiences with dismissive clinicians and positive outcomes when providers believed and validated their concerns, highlighting the centrality of the **patient–provider relationship**. - At the patient level, the most commonly reported symptoms were **anxiety**, **depression**, **sleep problems**, **brain fog**, and **fatigue**; many respondents reduced work hours or stopped working because of their symptoms. - Participants reported relying on their own research more often than on provider recommendations to pursue wellness treatments. - The authors propose that multilayered negative experiences—invalidating care, mistrust, avoidance—may reinforce physiological dysregulation and create a feedback loop that worsens symptoms and vulnerability. - The study focused on health needs and barriers among marginalized groups (e.g., low income, low education, minoritized, rural/medically underserved, Veterans) to identify modifiable targets for interventions; specific demographic breakdowns and some methodological details were reported in the source but detailed quantitative subgroup results are not reproduced here. - Data are not publicly available due to ethical restrictions; de-identified data can be requested with an approved data use agreement. The study was funded by the Center for Translational Research in Autonomic Health and related institutional funds; funders had no role in design, analysis, or publication.
## Clinical Analysis & Structured Key Points
Lived experiences and perspectives of persons with conditions marked by autonomic dysfunction | PLOS One Browse Subject Areas ? Click through the PLOS taxonomy to find articles in your field. For more information about PLOS Subject Areas, click here . Article Authors Metrics Comments Media Coverage Peer Review Reader Comments Figures Figures Abstract Background Persistent autonomic dysfunction disrupts homeostasis and promotes pathological processes underlying several major chronic conditions including cancer and cardiovascular disease. Little is known about the lived experience of individuals living with conditions marked by autonomic dysfunction. Objectives To understand the lived experiences and perspectives of individuals with conditions characterized by autonomic dysfunction. Methods A mixed method, cross sectional study was conducted with individuals (n = 489) with conditions marked by autonomic dysfunction, with a focus on recruiting from marginalized populations . Participants completed a survey exploring symptoms and experiences with seeking and receiving care for conditions and symptoms marked by autonomic dysfunction. A subset of 45 participants also completed semi-structured interviews. Results At the healthcare system level, participants were concerned about provider availability and a lack of support for patients and providers. At the provider level, participants had negative experiences with dismissive providers and positive experiences when providers believed patients. At the patient level, patients reported that anxiety, depression, sleep problems, brain fog, and fatigue were their most common symptoms, and that they often reduced work hours or stopped working. Patients described using their own research more often than provider recommendations to seek wellness treatments. Conclusion The lived experience for people with autonomic dysfunction is multilayered, includes the patient’s personal experience, and is influenced by the patient-provider relationship embedded in unsupportive healthcare systems. These experiences may reinforce the physiological dysregulation at the core of many condition and symptoms, potentially exacerbating a feedback loop of distress, invalidation, mistrust, avoidance, and increased vulnerability. Citation: Shah LL, Kinser PA, Moyer S, Rider A, Kang L, Decker R, et al. (2026) Lived experiences and perspectives of persons with conditions marked by autonomic dysfunction. PLoS One 21(8): e0355952. https://doi.org/10.1371/journal.pone.0355952 Editor: Tanja Grubić Kezele, University of Rijeka Faculty of Health Studies: Sveuciliste u Rijeci Fakultet zdravstvenih studija, CROATIA Received: November 7, 2025; Accepted: July 28, 2026; Published: August 17, 2026 Copyright: © 2026 Shah et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability: Data for this study is not publicly available due to ethical restrictions. Participants in this study did not consent to having their data shared publicly, and thus the IRB protocol does not allow public sharing. However, data can be shared upon request with an approved data use agreement (DUA) and ethical approval. To request data, please contact the Office of Research, Scholarship and Innovation at Virginia Commonwealth School of Nursing at sonor@vcu.edu . Funding: Center for Translational Research in Autonomic Health Virginia Commonwealth Breakthroughs Fund (TC, PK, JB, mPI) https://onevcuresearch.vcu.edu/funding/ The funders had no role in the study design, data collection, data analysis, decision to publish, nor preparation of the manuscript. Competing interests: The authors have declared that no competing interests exist. Introduction In response to threats, illness, or trauma, the sympathetic branch of the autonomic nervous system launches the fight/flight/freeze response to protect an individual from harm, with simultaneous withdrawal of the parasympathetic system. While such a response is helpful to survival in an acute setting, severe deleterious consequences can manifest when this autonomic dysfunction persists over time. Chronic or persistent autonomic dysfunction involves persistent sympathetic activation (PSA), a physiological state in which the autonomic nervous system is constantly dominated by the sympathetic (fight/flight/freeze) response, while the parasympathetic (rest/digest) response is withdrawn. Autonomic dysfunction disrupts autonomic homeostasis and promotes inflammation and oxidative stress, which are pathological processes underlying major chronic diseases including cancer [ 1 – 3 ], cardiovascular and cerebrovascular disease [ 4 – 6 ], as well as major psychological disorders such as anxiety and depression [ 7 – 9 ]. Individuals experiencing socioeconomic barriers including those experiencing low income, low education, minoritization, and lack of access to medical care are especially susceptible to the impacts of chronic autonomic dysfunction [ 10 ]. Despite the major public health implications of autonomic dysfunction, very little is understood about the experiences of these individuals [ 11 , 12 ], which limits the impact of interventions aimed at reducing complications in people with autonomic dysfunction. The purpose of this study was to understand the lived experiences and perspectives of individuals with conditions characterized by autonomic dysfunction. Specifically, we aimed to describe the characteristics of these individuals and factors that impact their lived experience. This study focused on the health needs, perceptions, experiences and barriers to care of marginalized populations (e.g., minoritized, low-income, low-education, rural/medically underserved communities) and other vulnerable communities (e.g., Veterans) with autonomic dysfunction to identify potentially modifiable targets for interventions and to inform future intervention work in this field. When activated by threat or trauma, the fight/flight/freeze response driven by the sympathetic branch of the autonomic nervous system is initiated through central nervous system connections between the amygdala, the peri-aqueductal gray (PAG) region, the hypothalamus, and their descending networks. Simultaneously, the hypothalamic-pituitary (HPA) axis, a neuroendocrine feedback mechanism, is activated and the parasympathetic branch of the autonomic nervous system withdraws its rest and digest response, reducing vagal tone to permit domination of the sympathetic response. When the parasympathetic response is diminished, a physiological state of emergency operation and resource depletion ensues. Although a powerful and critical life force, constant survival mode or persistent sympathetic activation with parasympathetic withdrawal is inefficient and can manifest as persistent hypervigilance coupled with fatigue. Subsequent long-term reorganization of the autonomic and central nervous system may occur leading to reduced physiological regulation and recovery [ 13 ]. Chronic autonomic dysfunction fosters chronic low-grade inflammation with an increased level of proinflammatory cytokines that worsen nearly every physical or emotional disorder/symptom and contribute to chronic illness [ 14 , 15 ]. Autonomic dysfunction, driven by persistent domination of the sympathetic response and withdrawal of the parasympathetic response, and its multi-system disruption of homeostasis is understood as an underlying mechanism shared across many health conditions and symptoms. Individuals exposed to a higher degree of uncertainty, threat or an inability to control their life circumstances are at highest risk for autonomic dysfunction, and they often have decreased access to trustworthy medical care. Stigma, defined as a negative or dismissive attitude towards another person or group based on race, gender or religion, or towards a characteristic the person has, acts as a chronic stressor on the individual and activates sympathetic activity [ 16 , 17 ]. Racial discrimination produces significant structural brain changes and changes in connectivity that affect the salient, default and executive control mode networks. Many of the brain regions affected by racial discrimination are involved in activating the sympathetic response [ 15 ]. Black individuals who have experienced more discrimination have greater activity of the salient network and the amygdala [ 15 ]; and structural racism contributes to worse outcomes in diseases including breast cancer treatment [ 18 ]. Furthermore, marginalized populations have a documented distrust of the medical community and decreased access to care. For example, Hispanic females have poor bladder health due to poor access to medical care secondary to socioeconomic disadvantages [ 19 ]. Underrepresented groups also have difficulties getting medical care for Long-COVID [ 20 ]. Misdiagnosis further exacerbates this problem. Even when patients are able to be seen clinically, their symptoms are frequently diagnosed as anxiety, which negates the underlying autonomic dysfunction and leads to growing frustration and despair that reinforces autonomic dysfunction [ 21 – 23 ]. Despite a compelling need to address the health-related adverse consequences of autonomic dysfunction in marginalized populations, few studies have attempted to systematically characterize the factors that perpetuate or exacerbate this condition, or the experiences of these individuals as they relate to interactions with their health care system. Methods This cross-sectional, sequential mixed-methods study focused on understanding participant experiences through a survey and qualitative interviews. Our aim was to understand participant experiences with seeking or receiving healthcare for their symptoms or conditions. We integrated the quantitative and qualitative findings to provide a more complete picture of the participants’ experiences. This research protocol was approved by the Virginia Commonwealth University IRB (HM20028440). Reflexivity and positionality statement In alignment with mixed-methods quality frameworks, we explicitly acknowledge our positionality. The primary analysts (LS, PK, SM, AR, RD, LL, LM, AS) are all nurses and researchers. Our multidisciplinary co-authors including physician scientists (RG, GC, TC), biostatistics (LK, NB), and psychology (TBC) also critically reviewed our study throughout its design, analysis, and interpretation to challenge and enhance our insights and assumptions. Our prior experience working with patients with a range of conditions and symptoms provided valuable contextual insight during the qualitative interview phase but also introduced potential assumptions regarding what type of quantitative analyses were considered. To mitigate potential bias during data integration and analysis, we utilized an audit trail, analyst triangulation, peer debriefing (EP), and frequent discussions with our multi-disciplinary team to ensure that the integrated findings accurately reflect the data. Participants Participant recruitment began 11/18/2023 and ended 6/7/2024. Participants were recruited through local outreach (e.g., active recruitment of patients in the university’s affiliated academic health system through the electronic health record; flyers in local healthcare clinics), community-based strategies (e.g., social media platforms posts; email listservs; flyers posted in community settings such as libraries, bookstores, and shops) and word-of-mouth. Recruitment through the electronic health record was facilitated through an honest broker process, using ICD codes corresponding to one or more conditions related to chronic autonomic dysfunction, including COVID, generalized anxiety disorder, major depressive disorder, post-traumatic stress syndrome (PTSS), mild traumatic brain injury, postural orthostatic tachycardia syndrome (POTS), cancer, cardiovascular conditions, autonomic dysfunction, chronic fatigue, and chronic pain conditions. To target underserved populations, an additional filter of insurance status was used to identify potential participants that were on Medicaid. Email addresses for a random subset of eligible participants were provided to the study team. Interested individuals were sent a link to the survey landing page on REDCap. Participants were eligible if they self-identified as having current health concerns and/or symptoms relating to autonomic dysfunction, with or without a diagnosis by a healthcare provider, and were 18 years of age or older. For example, IRB-approved recruitment materials used language such as: “We want to hear your experiences! Have you experienced any of the following symptoms or diagnoses? - chronic or unexplained fatigue, brain fog, chronic pain, depression, anxiety, mood changes, PTSS, fast heartbeat, POTS, cancer, long-COVID, heart concerns, lung concerns, belly concerns, traumatic brain injury, or concussion.” Participants provided electronic consent to participate in the survey. At completion of the survey, participants indicated whether they would be interested in a follow-up interview about their experiences. Prior to beginning the one-on-one semi-structured interview, a member of the research team reviewed and verified consent verbally with each participant. Participants did not have to agree to an interview in order to complete the survey. Participants who completed the survey could opt to enter a raffle for a chance to win $50 e-gift cards; those who completed the interview received a $50 e-gift card. Data collection Survey. A link to the online 15-minute REDCap survey was provided to potential participants through recruitment materials, including emails, newsletters, and QR codes on flyers distributed in the community. The survey began with eligibility screening and consent processes. Eligible participants who consented to the survey were automatically directed to the survey. The investigator developed survey gathered information about participant characteristics and health conditions, symptoms, including the validated Fatigue Severity Scale [ 24 ], non-pharmacological treatments, impacts on employment or schooling, and experiences with healthcare providers and the healthcare system. Interview. A one-on-one semi-structured interview was conducted by one of two interviewers (AR, DF), in a subset of participants who completed the survey and self-identified as willing to participate in an interview. Email invitations were sent to interested individuals, with targeted sampling of members of underserved populations (e.g., Medicaid, non-white) to be demographically representative of the survey sample. The interview was held electronically (via Zoom), lasted approximately 60 minutes and began by inviting the participants to provide some personal history, “Tell me a little about yourself and a bit about why you signed up for the study?” The interview continued with participants being asked to share their experiences with their health condition or symptoms. Specific prompts included “In what ways have your symptoms impacted your life?”, “How have aspects of your identity influenced your experiences of seeking healthcare for your symptoms/condition?”, “Describe your experiences seeking healthcare to treat these symptoms?”, “Where have you turned for information or support with your symptoms?”, “Describe what, if any, treatment you have received for your conditions.”, and “How has your condition/symptoms impacted your emotional health and well-being?”. The interviewer invited participants to share what they wish people knew about their experience, what questions they think are important to ask, and what they have learned from their experiences. Real time member checking was used to verify our understanding during the interviews. The interviews were tested amongst team members prior to implementation and then conducted and audio recorded online via Zoom, and transcribed verbatim, including any fieldnotes/observations taken by interviews during or after interviews. Data analyses Survey data was exported from REDCap into SAS version 9.4 for analysis. Descriptive statistics were calculated for survey variables including means and standard deviations (or median and range) for continuous variables, and frequency counts and percentages for categorical data. Chi-squared, Fisher’s exact, or T-tests were used to compare the participants who interviewed to the participants who only completed the survey. Each variable was analyzed using non-missing records; the number of non-missing records for each is listed in each table. A qualitative descriptive approach was used for the interview data [ 25 ], with analyses conducted via thematic analysis [ 26 ]. To begin, three study team members (AR, PK, LS) met to discuss potential biases and agree upon processes. The team acknowledged that two members have personal experiences with hard-to-treat conditions and the team agreed to maintain awareness and continuous discussions of how these experiences could potentially influence interpretation of findings. They began the analysis process by reviewing each transcript in its entirety to gain a sense of the data as a whole. Then, the qualitative analysis team independently reviewed a subset of the transcripts, highlighting quotes and making preliminary coding notes, and subsequently met to discuss the preliminary coding and develop a draft codebook. In the next round of coding, each analyst reviewed eight uncoded transcripts using the draft codebook, noting changes to be made to the codebook. At the next meeting, the team discussed and revised the codebook. In the final round of coding, each reviewer used the revised codebook to code 16 transcripts. A fourth member of the qualitative analysis team (EP) read a random subset of the transcripts to agree or disagree with the coding, serving as a peer debriefer [ 27 ]. Finally, the entire group then met to discuss and decide upon final themes. In alignment with best practices [ 28 ], several methods to ensure trustworthiness of the qualitative analysis process were used in this study. These methods included maintaining an audit trail for confirmability; utilizing a peer debriefer for credibility; and, maintaining robust discussions among analysts (analyst triangulation) for credibility [ 27 ]. Data saturation was achieved as no new codes were derived during the final round of coding. The qualitative analysis was completed independently of the quantitative analysis before integration of both. The quantitative results are presented with corresponding qualitative results to provide deeper understanding of the lived experiences and perspectives of people living with conditions marked by autonomic dysfunction. A joint display was developed to visualize the qualitative themes and exemplar quotes alongside corresponding quantitative data. Integrative summaries were developed to evaluate findings from a mixed-method perspective. Results A total of 489 participants completed the survey and 45 of these also completed a qualitative interview. All participants experienced manifestations associated with autonomic dysfunction, defined as reporting at least one of the following conditions: chronic or unexplained fatigue, brain fog, chronic pain, depression, anxiety, mood changes, PTSS, fast heartbeat, POTS, cancer, long-COVID, heart concerns, lung concerns, belly concerns, traumatic brain injury, or concussion. Among the 375 participants interested in an interview, 142 were invited to schedule an interview, 63 interviews were scheduled with 45 interviews completed. Participants who completed the interview were older ( M = 43.4, SD = 15.3) than the participants who only completed the survey ( M = 36.9, SD = 13.3), t (472) = −3.05, p = .003; however, there were no other significant differences between t
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