Negative Health Care Experiences Research Articles

People from ethnic minorities seeking help for Long Covid: a qualitative study.

People from ethnic minority groups are disproportionately affected by COVID-19, are less likely to access primary healthcare and report dissatisfaction with healthcare. Whilst the prevalence of Long Covid in ethnic minority groups is unclear, these groups are under-represented in Long Covid specialist clinics and Long Covid lived experience research which informed the original Long Covid healthcare guidelines. To understand lived experiences of Long Covid in people from ethnic minority groups. Qualitative study with people living with Long Covid in the UK. Semi-structured interviews with people who self-disclosed Long Covid were conducted (between June 2022 and June 2023) via telephone or video call. Thematic analysis was conducted. People living with Long Covid or caring for someone with Long Covid advised on all stages of the research. Interviews were conducted with 31 participants representing diverse socio-economic demographics. Help-seeking barriers included little awareness of Long Covid or available support and not feeling worthy of receiving care. Negative healthcare encounters were reported in primary healthcare; however, these services were crucial for accessing secondary or specialist care. There were further access difficulties and dissatisfaction with specialist care. Experiences of stigma and discrimination contributed to delays in seeking healthcare and unsatisfactory experiences, resulting in feelings of mistrust in healthcare. Experiences of stigma and discrimination resulted in negative healthcare experiences and mistrust in healthcare, creating barriers to help-seeking. Empathy, validation of experiences, and fairness in recognition and support of healthcare needs are required to restore trust in healthcare.

Referral pathways to early intervention services for psychosis and their influence on perceptions of care: An interpretive phenomenological analysis.

Most young adults experiencing psychosis enter early intervention services (EIS) via inpatient and emergency departments. These experiences are suggested to negatively impact their views of treatment and engagement in EIS. However, limited research has examined the impact of young adults' prior help-seeking experiences on these outcomes. The present study aimed to explore how young adults engaged in EIS have experienced initial help-seeking and make sense of these experiences in the context of their current treatment. Using an interpretative phenomenological analysis approach, semi-structured interviews were conducted with 12 young adults (mean age = 24.83) within their first 3-12 months of treatment in EIS. Interviews aimed to examine their experiences of help-seeking and referral to EIS as well as the impact of these experiences on their subsequent perception of, and engagement with EIS. 3 superordinate themes emerged: (1) Navigating the Maze of Healthcare (2) Dignity and (3) Impact of Help-Seeking and Referral Experiences. Participants with referral pathways involving urgent care services described more adversity during their referral pathway and tended to describe help-seeking experiences as contributing to negative views towards EIS and diminished engagement in treatment. The impact of early negative experiences with healthcare on views towards EIS and engagement is evident in participants' accounts. Sense making was further contextualized by participants' illness insight, degree of recovery, and social support throughout experiences. Emergent themes highlight the need for psychiatric services to emphasize service users' dignity and for EIS to provide opportunities for patients to process past negative mental healthcare experiences to strengthen engagement.

Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project

ObjectivePeople with post-stroke aphasia (language/communication impairment) and their supporters report mixed satisfaction with stroke and aphasia care. To date, however, their journey of care and the key service interactions that...

Medical mistrust, discrimination and healthcare experiences in a rural Namibian community

ABSTRACT Substantial evidence indicates that medical mistrust, resulting from experiences with discrimination and marginalisation, is a determinant of health disparities in minority populations. However, this research is largely limited to the US and other industrialised countries. To broaden our understanding of the role of medical mistrust on health-care decision making, we conducted a study on healthcare experiences and perceptions in a rural, underserved indigenous community in northwest Namibia (n = 86). Mixing semi-structured interview questions with the medical mistrust index (MMI), we aim to determine the relevance of the MMI in a non-industrialised population and compare index scores with reports of healthcare experiences. We find that medical mistrust is a salient concept in this community, mapping onto negative healthcare experiences and perceptions of discrimination. Reported healthcare experiences indicate that perceived incompetence, maltreatment and discrimination drive mistrust of medical personnel. However, reporting of recent healthcare experiences are generally positive. Our results indicate that the concept of medical mistrust can be usefully applied to communities in the Global South. These populations, like minority communities in the US, translate experiences of discrimination and marginalisation into medical mistrust. Understanding these processes can help address health disparities and aid in effective public health outreach in underserved populations.

Getting to the bottom of why children with spina bifida use the emergency department: A qualitative analysis of parent and stakeholder perspectives

Children with Spina Bifida (SB) have considerable healthcare utilization, including Emergency Department use (EDU). We aimed to elicit reasons for EDU using qualitative analysis of interviews with both patient-caregiver dyads and stakeholders. A cohort of children with SB followed at our institution between 2016 and 2020 was identified and patient and clinical characteristics abstracted. Purposeful sampling by age and degree of past EDU was performed. Semi-structured interviews of dyads were performed using iteratively revised interview guides. Spanish-language interviews were conducted by a native Spanish speaker and transcripts professionally translated. Supplemental interviews with stakeholders, namely knowledgeable healthcare professionals, were also conducted. A qualitative framework approach was used for analysis, including open followed by closed independent coding with calculation of inter-rater reliability. A final interpretation of coding reports assessing convergence, divergence, and variation in themes across participant characteristics. 116 families (4 Spanish-speaking) and 7 stakeholders were interviewed. Sampling yielded a heterogenous cohort for EDU (56% with 0-10, 44% with >10 visits) and age (25% 0-4, 44% 5-11, 31%>11 years). IRR was optimal (κ=0.9). Themes in perceived reasons for EDU were 1) desire for "one-stop-shop" care, 2) an emergent medical problem, 3) providers' instructions, 4) negative past healthcare experience, 5) intrinsic caregiver moderators, and 6) temporospatial influences. Themes 1, 2, and 5 predominated in dyads, whereas themes 6, 3, and 5 were most common in stakeholders. Stakeholders focused largely on negative institutional and patient characteristics. Among dyads only, theme #1 was disproportionately emphasized by Spanish-speaking patients. Families desired access to coordinated expert care, testing and imaging. The ED offers this for children with SB, regardless of clinical acuity. This may be especially valued by families with inherent challenges to navigating the healthcare system. Negative experiences in community clinical settings, healthcare provider recommendations and intrinsic parental factors were themes that seemed to contribute to seeking this "one-stop-shop" type of care. Care coordination may reduce ED reliance, but themes for the interviews suggest a systems-based efforts should weave in the community care setting. For both stakeholders and caregivers, the ED represented a valued form of immediate access to multispecialty, expert care and testing in the context of perceived lack of timely, coordinated outpatient care. This may be moderated by intrinsic caregiver factors and negative past experiences. Although stakeholders discussed ideas that fit into patient-caregiver themes, the also uniquely focused on systems-based and patient-caregiver limitations.

“Neutrality Is Affirming”: How Do Sexual and Gender Minority Adults Find and Define Affirming Healthcare?

Sexual and gender minority (SGM) individuals have unique healthcare needs yet frequently encounter negative healthcare experiences. These negative encounters with the healthcare system may lead to SGM individuals delaying or avoiding healthcare, which may exacerbate health disparities. We sought to qualitatively examine the healthcare experiences of SGM adults to better understand how SGM adults define SGM-affirming healthcare experiences. We also aimed to add to the literature by asking SGM participants about their future aging and healthcare concerns such as family involvement in medical decisions and end-of-life care. Nineteen semistructured individual interviews were conducted with SGM adults to gather information about the process of finding an SGM-affirming provider, coming out in a medical setting, the components of affirming care, the results of affirming care, the components of nonaffirming care, the consequences of nonaffirming experiences, and aging concerns regarding healthcare. A thematic analysis approach was used to analyze interview data. Results showed unique insights into the techniques used to find SGM-affirming providers and what SGM adults hope for in their healthcare encounters. This qualitative study builds on a body of literature that has documented significant disparities in healthcare access and quality for SGM individuals. The results of this study highlight important aspects of SGM-affirming care, outline understudied healthcare concerns for SGM people, and may guide healthcare providers in improving the quality-of-care experiences for their SGM patients.

Health status and missed care among youth in care in British Columbia, Canada: A population study

PurposeYouth in care (YIC) are a marginalized population with high health care needs and barriers to access, resulting in lifelong health disparities. This study examines the health of Canadian YIC and their engagement with the Canadian health care system on a population level. MethodsData were retrieved from the 2018 British Columbia Adolescent Health Survey, a cross-sectional population survey of Grade 7–12 students (ages 12–19 years) in British Columbia, Canada (n = 38,015). Primary outcomes were self-rated general health and mental health, missed medical care, and missed mental health care among YIC. Secondary outcomes included health care access and gender differences. Multivariate analyses adjusted for age, gender, and food insecurity. ResultsYIC represented 1.9 % of the weighted sample population. Compared to non-YIC, YIC accessed health care more frequently from mental health professionals and youth-focused clinics and less frequently from family physicians. YIC reported worse general health (AOR 1.81 [99 % CI 1.40–2.34]) and mental health (AOR 1.81 [99 % CI 1.42–2.32]) than non-YIC. Adjusted for health status, YIC experienced more missed medical care (AOR 1.96 [99 % CI 1.46–2.62]) but comparable missed mental health care to non-YIC. Significant barriers for YIC included negative health care experiences and transportation. Among YIC, female and non-binary genders also had increased risk for worse health and missed care compared to males. ConclusionsYIC in Canada have inequitably unmet health care needs. Many complex factors contribute to this disparity and its correlation with out-of-home care. Further action is needed to reduce health care barriers for YIC.

Bright-siding stigma: Older adults' experiences at a higher weight in Atlantic Canada.

The lived experiences of higher-weight people vary; homogenous samples may fail to capture this diversity. This study develops an in-depth understanding of the lived experiences of higher-weight (Body Mass Index ⩾ 30) older adults (⩾60 years of age) in a Canadian Atlantic province. Participants (n = 11) were interviewed face-to-face using a semi-structured interview guide twice at 2-to-3-month intervals regarding their perceived treatment in social and health situations; how positive and negative healthcare experiences affected their health, lifestyles and healthcare seeking-behaviour; and recommendations in terms of patient experiences, access and inclusion. Participants infrequently reported negative experiences; however, participants' experiences were informed by uptake of moralistic, neoliberal discourses. Thematic content analysis identified two major themes: active citizenship (participants demonstrated internalisation of the imperative for weight loss, healthy lifestyles and active ageing) and bright-siding (participants expressed that a positive attitude could prevent/help cope with stigma). Results suggest that individualistic, rather than collective, political solutions to health and stigma have been taken up by higher-weight older adults in a Canadian Atlantic province, which may hinder attempts at structural reforms addressing stigma.

Women’s experiences of seeking healthcare for abdominal pain in Ireland: a qualitative study

BackgroundEvidence suggests that women’s abdominal pain is more likely to be minimised or dismissed by healthcare professionals than men’s. This can have a detrimental impact on health-related outcomes as well as quality of life. The aim of this study was to explore women’s experiences of seeking healthcare for abdominal pain in Ireland.MethodA qualitative design and opportunity sampling approach were employed in this study. Fourteen women living in Ireland with experience of seeking healthcare for abdominal pain took part in one-to-one semi-structured interviews via video-conferencing software. Data were analysed using reflexive thematic analysis.ResultsFour themes were constructed from the data: [1] “Just Get on with It” – Normalisation and Invalidation; [2] “Bad Enough”? Costs of (Not) Seeking Help; [3] “Fight Your Case,” Fight for Care; and [4] “Out of the Loop” – Systemic Barriers to Care. Perceived invalidation of pain by healthcare professionals was common, as was internalised normalisation of pain. This created challenges when negotiating pain management solutions. Despite functional interference, participants felt their pain needed to reach an extreme level of severity before seeking help. Costs of private healthcare were implicated in delayed help-seeking. Participants felt the onus was on them to fight for care. Social support and information-seeking facilitated participants in this fight while systemic issues were identified as barriers to adequate care. Despite their frustrations, participants expressed empathy for healthcare professionals operating in a flawed system.ConclusionsParticipants described mostly negative experiences of seeking healthcare for abdominal pain, characterised by dismissal of symptoms and internalisation of normative views of women’s pain as less worthy of care. These experiences reinforced participants’ views that self-advocacy is essential to access care for their pain. There are systemic issues at play within the Irish healthcare system that limit women’s ability to access abdominal pain management support. Education and training for healthcare professionals on the Gender Pain Gap and its implications for patient care, as well as clear referral pathways for women presenting with abdominal pain, may help to ensure more equitable healthcare delivery for individuals with abdominal pain in Ireland.

Hear Our Voice: Pediatric Communication Barriers From the Perspectives of Refugee Mothers With Limited English Proficiency

Adverse health outcomes are more common for health consumers with limited English proficiency (LEP). This study examines the consumer experience of refugee mothers with LEP when communicating with paediatric health services. A community-based participatory qualitative study engaging participants from refugee-like backgrounds. Focus groups and in-depth individual interviews (using professional interpreters) were conducted in community settings and analysed using Grounded Theory principles. Fifty ethnolinguistically diverse participants reported universal communication barriers; (i) "Negative health care experiences" (fear, helplessness, lack of safety, trust and dignity), (ii) "Ineffective health service communication and adverse outcomes", (iii) "Logistical access barriers" and (iv) self-sourced solutions". The "importance of professional interpreter utilisation" and subsequent "sense of empowerment" was unanimous. This study highlights gaps in current health interactions which negatively impact care, inclusion, and culturally safe engagement. Recommendations include orgainzational reform enhancing language services, increased cultural competency, long term support, and research with LEP populations.

Two Gender Medicine: Provider-Side Barriers to Caring for Transgender and Gender Diverse Patients

ABSTRACT Experienced and anticipated discrimination during health care visits result in lower health care utilization rates, which contribute to persistent health disparities between transgender and gender diverse (TGD) individuals and the general population. Most strategies for improving health care delivery to TGD patients place the responsibility on providers, overlooking the role of medical systems and institutions in creating the environments where negative health care experiences occur. Relying on the inhabited institutionalism framework, this study explores system- and institutional-level barriers to the provision of quality care to TGD patients identified by health care providers and administrators, including relevant contextual details of, and interactions between, these barriers. Based on interview data from health care providers and administrators from a variety of practices across Texas, we identified two overarching themes and six subthemes. We demonstrate how our interviewees’ responses reveal an institutional logic of “two-gender medicine,” which creates barriers to health care provision in both formal medical education and training and throughout the managed care model of practice. We also illustrate how health care workers find ways to resist this logic in the course of their practice. Addressing these barriers to delivering competent and compassionate care to TGD patients that providers encounter could make long overdue strides toward addressing health disparities.

The impact of racism on subsequent healthcare use and experiences for adult New Zealanders: a prospective cohort study

BackgroundRacism is an important determinant of health and driver of racial/ethnic health inequities. Experience of racism has been linked to negative healthcare use and experiences although most studies have been cross-sectional. This study examines the relationship between reported experience of racism and subsequent use and experience of health services.MethodsThis is a prospective cohort study design. The 2016/2017 adult New Zealand Health Survey (NZHS) provided the sampling frame and baseline data on exposures, health status and confounders. This stand-alone study invited all exposed individuals to participate when sampled based on their reported experience of racism (ever), stratified by broad ethnic groupings (Māori, Pacific, Asian, European/Other). Equal numbers of unexposed participants were selected for invitation using propensity score matching (propensity to experience racism, based on key available predictive factors). Follow-up was one to two years after NZHS interview. Outcome variables (last 12 months) were: unmet healthcare need (overall, for mental health, for a general practitioner); satisfaction with usual medical centre; and experiences with general practitioners (explaining care, involvement in decision-making, treated with respect/dignity, confidence and trust). Logistic regression models examining the association between experience of racism (at baseline) and health service use and experience (at follow-up) used doubly-robust estimation to weight for propensity scores used in the sampling with additional adjustment for confounders.ResultsThe study had 2010 participants. Experience of racism (ever) at baseline was associated with higher overall unmet need at follow-up (adjusted OR (aOR) = 1.71, 95% CI 1.31, 2.23), with similar patterns for other unmet need measures. Experience of racism was associated with higher dissatisfaction with a usual medical centre (aOR = 1.41, 95% CI 1.10, 1.81) and with higher reporting of negative patient experiences.ConclusionIn line with how racism structures oppression, exposure to racism is largely felt by non-European groups in Aotearoa New Zealand. Experiences of racism potentially lead to poorer healthcare and healthcare inequities through higher unmet need, lower satisfaction and more negative experiences of healthcare. The health system has a critical role to play in addressing racism within healthcare and supporting societal efforts to eliminate racism and ethnic inequities.

You can’t be too many things: the experiences of gender-affirming care for trans people of color – a thematic analysis

Background: Barriers to healthcare and negative healthcare experiences are frequently reported by transgender people, which is known to be compounded by intersectional issues including racism. Aims: The present study aimed to explore the experiences of trans people of color accessing a national Gender Service in the United Kingdom, to better understand the facilitators and barriers to positive healthcare experiences. Methods: Six transgender people of color attended two separate focus groups. Thematic analysis was used to identify themes in the data. Results: Three themes were identified: The Western-biased model of gender-affirming care; the lack of diversity in support provided throughout medical transition; and lack of visibility and community. Participants talked of various ways in which their ethnicity and cultural backgrounds raised apprehensions and negative experiences within their gender-related care, such as assumptions being made about their transition process, and a general lack of visibility such as not seeing examples of the outcomes of surgeries and in community spaces. Conclusions: The findings are discussed in relation to previous research, noting that culturally-inclusive models of transition, increased access to diverse, inclusive community spaces and further research in this field is needed to improve healthcare experiences.

Leveraging Patients' Creative Ideas for Innovation in Health Care.

Learning health systems (LHSs) have been promoted for a decade to achieve high-quality, patient-centered health care. Innovation driven by knowledge generated through day-to-day health care delivery, including patient insights, is critical to LHSs. However, the pace of translating patient insights into innovation is slow and effectiveness inadequate. This study aims to evaluate a method for systematically eliciting patients' creative ideas, examine the value of such ideas as a source of insight, and examine patients' creative ideas regarding how their experiences could be improved within the context of their own health systems. The first stage of the study developed a survey and tested strategies for elicitation of patients' creative ideas with 600 patients from New York State. The second stage deployed the survey with the most generative open-ended question sequence within a health care system and involved analysis of 1,892 patients' responses, including 2,948 creative ideas. Actionable, creative feedback was fostered by incorporating a request for transformative feedback into a sequence of narrative elicitation questions. Patients generate more actionable and creative ideas when explicitly invited to share such ideas, especially patients with negative health care experiences, those from minority racial/ethnic backgrounds, and those with chronic illness. The most frequently elicited creative ideas focused on solving challenges, proposing interventions, amplifying exceptional practices, and conveying hopes for the future. A valid and reliable method for eliciting creative ideas from patients can be deployed as part of routine patient experience surveys that include closed-ended survey items and open-ended narrative items in which patients share their experiences in their own words. The elicited creative ideas are promising for patient engagement and innovation efforts. This study highlights the benefits of engaging patients for quality improvement, offers a rigorously tested method for cultivating innovation using patient-generated knowledge, and outlines how creative ideas can enable organizational learning and innovation.

Patient experiences of endometriosis diagnosis: A mixed methods approach.

To examine patient-described experiences of endometriosis diagnosis. Mixed-methods study. Online patient-led endometriosis support groups. People with endometriosis aged over 18. A survey with qualitative and quantitative questions was distributed through online patient-led endometriosis support groups. Descriptive statistics were used to analyse quantitative data, and thematic analysis was used for qualitative responses. Quantitative and qualitative data were triangulated to examine patient experiences of endometriosis diagnosis across age groups. Experiences of endometriosis diagnosis among people with endometriosis. A total of 2017 people with endometriosis from 63 countries responded to the questionnaire. Patients experienced an average delay of 3.7 years between symptom onset and first presentation of symptoms to a physician (the care-seeking delay) and an average delay of 5.8 years between first presentation of symptoms to a physician and diagnosis of endometriosis (the healthcare-related delay). Patients experienced an average total diagnostic delay of 9.6 years. Participants aged over 35 at the time of the study reported significantly longer times to receive an endometriosis diagnosis (mean 10.7, 95% confidence interval [CI] 10.2-11.2) compared with participants age 18-24 (6.8, 95% CI 6.1-7.5 years). The qualitative analysis identified the following themes: physicians normalised endometriosis symptoms, patients felt their symptoms were ignored by physicians because they were considered unreliable, and participant character attributes (e.g. age, appearance, weight or physical ability) led to clinician dismissal. People with endometriosis of all age groups reported pervasive negative healthcare experiences during their adolescence. Patients experience delays in seeking care and in receiving a diagnosis once presenting for care.

Medicine shouldn't be this hard: The intersection of physician moral injury and patient healthcare experience in pediatric complex care.

Dr. Jay Neufeld's story in If I Betray These Words is a detailed account of one physician's catastrophic journey through moral injury when caring for pediatric patients with complex medical conditions [1]. Many clinicians may recognize Jay's journey in their own experiences, but what deserves parallel consideration are the journeys of patients and families when they are accompanied by physicians at risk of moral injury. This case study illustrates the tight link between drivers of physician moral injury and patients' negative healthcare experiences. These include (1) decisions directed by health insurance regulations and prior authorizations; (2) the electronic medical record (EMR); and (3) healthcare systems focused on revenue generation.

Long Covid active case finding study protocol: A co-produced community-based pilot within the STIMULATE-ICP study (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways).

Long Covid is a significant public health concern with potentially negative implications for health inequalities. We know that those who are already socially disadvantaged in society are more exposed to COVID-19, experience the worst health outcomes and are more likely to suffer economically. We also know that these groups are more likely to experience stigma and have negative healthcare experiences even before the pandemic. However, little is known about disadvantaged groups' experiences of Long Covid, and preliminary evidence suggests they may be under-represented in those who access formal care. We will conduct a pilot study in a defined geographical area in London, United Kingdom to test the feasibility of a community-based approach of identifying Long Covid cases that have not been clinically diagnosed and have not been referred to Long Covid specialist services. We will explore the barriers to accessing recognition, care, and support, as well as experiences of stigma and perceived discrimination. This protocol and study materials were co-produced with a Community Advisory Board (CAB) made up primarily of people living with Long Covid. Working with voluntary organisations, a study leaflet will be distributed in the local community to highlight Long Covid symptoms and invite those experiencing them to participate in the study if they are not formally diagnosed. Potential participants will be assessed according to the study's inclusion criteria and offered the opportunity to participate if they fit them. Awareness of Long Covid and associated symptoms, experiences of trying to access care, as well as stigma and discrimination will be explored through qualitative interviews with participants. Upon completion of the interviews, participants will be offered a referral to the local social prescribing team to receive support that is personalised to them potentially including, but not restricted to, liaising with their primary care provider and the regional Long Covid clinic.

Previous Health Care Experiences' Influence on Health Care Perceptions Among Residents of Six Homeless Shelters in Seattle, Washington, July-October 2021.

The study purpose was to learn and describe 1) where homeless shelter residents receive health care, 2) what contributes to positive or negative health care experiences among shelter residents, and 3) shelter resident perceptions toward health care. Semi-structured interviews (SSIs) utilizing purposive sampling and focus group discussions (FGDs) utilizing convenience sampling were conducted at 6 homeless shelters in Seattle-King County, Washington, during July-October 2021. All residents (age ≥18) were eligible to participate. SSIs were conducted with 25 residents, and 8 FGDs were held. Thematic analysis was conducted using Dedoose. Participants received health care in settings ranging from no regular care to primary care providers. Four elements emerged as contributing positively and negatively to health care experiences: 1) ability to access health care financially, physically, and technologically; 2) clarity of communication from providers and staff about appointment logistics, diagnoses, and treatment options; 3) ease of securing timely follow-up services; and 4) respect versus stigma and discrimination from providers and staff. Participants who felt positively toward health care found low- or no-cost care to be widely available and encouraged others to seek care. However, some participants described health care in the United States as greedy, classist, discriminatory, and untrustworthy. Participants reported delaying care and self-medicating in anticipation of discrimination. Findings demonstrate that while people experiencing homelessness can have positive experiences with health care, many have faced negative interactions with health systems. Improving the patient experience for those experiencing homelessness can increase engagement and improve health outcomes.

Understanding the context of positive experiences of primary care for transgender and gender diverse adults: An email interview study in Aotearoa New Zealand

Background Past research has demonstrated that transgender and gender diverse (TGD) people often have negative experiences of healthcare. Exploratory research is needed to provide in-depth understanding of the healthcare experiences of TGD people. Primary care is a crucial element of healthcare, but past research has tended to overlook what contributes specifically to positive experiences of primary care for TGD adults. Aim The aim of this study was to explore positive experiences of TGD adults when engaging with primary care in Aotearoa New Zealand. Methods Semi-structured email interviews were conducted with 11 TGD adults aged 20- to 62-years-old, with a range of binary or non-binary genders living across Aotearoa New Zealand. The email interview method allowed nationwide recruitment and flexible interaction. All aspects of the study were led by a researcher who is part of the TGD community. Results Three themes were formulated to explain TGD participants’ positive experiences with primary care. In order to contextualize positive experiences, participants described past negative experiences of healthcare and low expectations (Theme 1: The Sad State of Care). Participants also described exerting autonomy, for example by carefully selecting a general practitioner (GP) or choosing when to disclose transgender status to their GP (Theme 2: The Sphere of Control). Three levels were evident in positive experiences (Theme 3: The Gradient of Positive Experiences): basic professionalism, more desirable experiences of trans-specific competencies, and GPs as advocates for systemic change. Discussion TGD people experience positive interactions in primary care in a variety of ways, all of which are contextualized by the negative state of healthcare at present. TGD people create opportunity for autonomy while navigating healthcare, which requires a form of interacting that can be termed reactive self-determination. Training for health professionals could apply the gradient of positive experiences to scaffold appropriate primary care for TGD adults.

(041) Vulvovaginal Pain Experiences: pain type, pelvic exam, and condom use

Abstract Introduction Research suggests that chronic vulvovaginal pain (CVVP), including conditions like vaginismus and vulvodynia, has a lifelong prevalence of at least 9% and affects approximately 13 million women or higher. [1] Despite this high prevalence, average diagnostic delay of 24 months and negative healthcare experiences are frequently reported in the literature. [2-3] For non-white CVVP suffers, diagnostic delay may be larger problem—Harlow & Steward (2003) found that among women who sought treatment for chronic vulvar pain, 63.1% of white women, 46.2% of Black women, and 50% of Hispanic women obtained a diagnosis. Diagnostic delay, negative healthcare experiences, and racial disparities in seeking a diagnosis all may impact access to quality healthcare for this population. Depending on pain severity, CVVP sufferers may also experience disruptions in sexual and reproductive healthcare, as CVVP can inhibit preventative measures for certain STIs and cancers. [1] Harlow, B. L., & Stewart, E. G. (2003). A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia? Journal of the American Medical Women’s Association (1972), 58(2), 82–88. [2] Buchan, A., Munday, P., Ravenhill, G., Wiggs, A., & Brooks, F. (2007). A Qualitative Study of Women with Vulvodynia: I. The Journey into Treatment. The Journal of Reproductive Medicine, 52(1), 15–18. [3] Ogden, J., & Ward, E. (1995). Help seeking behaviour in sufferers of vaginismus. Journal of Sexual and Marital Therapy, 10, 23–30. Objectives This pilot study aimed to explore how women of different racial identities experienced chronic or acute vulvovaginal pain, with a particular focus on whether pain severity or type (e.g. burning, stinging, aching, throbbing, stabbing) affected access to and behavior towards pelvic exams or Pap smears and condom use. Methods Participants (N=295) were recruited via social media and online forums focused on sexual health. Only participants who were between age 18 and 50 and who had no history of perimenopause or menopause were eligible. Participants completed a 99-item questionnaire that combined researcher-designed items and validated scales and covered topics like pain type and severity, pelvic exam and Pap smear experiences, condom use experiences, and healthcare and health information seeking experiences, among others. Results 60% of participants reported avoiding a pelvic exam or Pap smear at least once due to anticipated pain, and 46% reported being unable to complete one due to actual pain. Similarly, 52.1% reported avoiding condom use at least once due to pain. In addition, participants reported significant racial differences in which pain descriptors they endorsed, with non-white women endorsing “throbbing” and “stinging” more often than white women. Conclusions This pilot study indicates that women with chronic or acute vulvovaginal pain may be missing out on important preventative healthcare measures like condom use and Pap smear. Furthermore, significant racial differences in how women describe their pain also suggests that diagnostic guidelines should be sensitive to these differences to ensure that all women receive accurate and timely diagnoses for their pain. Disclosure No.