Positive Healthcare Experiences Research Articles

Reproductive decision-making experiences of Australian adults with neurofibromatosis type 1 and schwannomatosis.

Individuals with neurofibromatosis type 1 and schwannomatosis (NF) often face difficult reproductive choices when family planning; however, their experiences and the barriers and enablers to reproductive decision-making are poorly understood. The purpose of this study was to explore the opinions and experiences of individuals with NF in Australia and inform the development of practice recommendations and resources. Focus groups with adults with NF were conducted using a semi-structured interview schedule developed by the research team. Partners were also invited. The focus groups were recorded, de-identified, transcribed, and analyzed using codebook thematic analysis. Three focus groups were conducted with 17 participants (12 = NF1, 4 = NF2-related schwannomatosis [NF2-SWN] and one partner). Three themes were identified: (1) Barriers and enablers; (2) Contemplating the options; and (3) Education and support needs. Barriers to reproductive decision-making included: difficulty accessing healthcare services to discuss reproductive planning; a lack of access to reliable information sources and support; and, in some cases, the financial cost of assistive reproductive technology. Conversely, positive healthcare experiences and support systems enabled reproductive choices. Participants reported many factors that contributed to their reproductive decisions, including: their personal experience of their condition; concern about their future health and that of an affected child; the impact of pregnancy on their health; and the opinion of healthcare providers, family, and friends. Many participants reported mental health difficulties related to their condition and additional stressors related to the reproductive journey. Participants' recommendations included increased access to healthcare services to discuss reproductive options, the development of comprehensive information resources, and improved psychological and peer support for individuals with NF considering family planning and, where relevant, their partners. In conclusion, people with NF and their partners identify a need for improved awareness of NF among healthcare professionals and increased access to appropriate services, information, and support to facilitate informed reproductive decision-making.

Abstract 4118668: Understanding Medication Adherence to Oral Anticoagulants in Atrial Fibrillation Management: Patient and Provider Perspectives in a Mixed Methods Study

Background: Atrial fibrillation (AF) increases risk of stroke. National guidelines recommend oral anticoagulant (OAC) use to reduce this risk. Medication adherence is pivotal for effective AF management, necessitating an understanding of adherence barriers. Aims: This mixed-methods study aimed to identify patient and provider factors influencing OAC adherence. Methods: Patients with nonvalvular AF and OAC prescriptions were sampled from a large community health system serving seven states. A stratified random sample of 2,000 patients was surveyed by mail, achieving a 13.3% response rate (266 patients). Twenty-eight semi-structured interviews were conducted with a purposive sample of patient survey respondents. Eligible providers were surveyed by email, resulting in a 3% response rate (78 providers). Survey data were analyzed descriptively and using multivariable regression models. Interview data were analyzed thematically. Results: Of 213 patients with an adherence score available, 31.5% reported non-adherence. Nonadherent patients were more likely to report poor healthcare experiences, including discrimination in a healthcare setting and poorer mental/emotional health. Receiving information from providers was significantly associated with adherence, especially among younger patients and those with fewer chronic conditions. High self-efficacy score was associated with adherence, particularly among older and rural patients. Interview analyses showed provider communication about AF medications, perceptions of AF as a serious illness, and a sense that medication was helping manage AF were all important for medication adherence. In contrast, most providers (87%) perceived high non-adherence among AF patients, citing forgetfulness, cost, and side effects as the main reasons. Providers’ responses indicate a need for improving communication and support for addressing adherence barriers. Conclusion: Most patients reported adherence to their medications, with adherence being associated with positive healthcare experiences and better mental/emotional health. Providers perceived relatively low adherence among their patients but aligned with patients on the need for improved communication and shared decision making. Tools that encourage discussion with patients and open communication between providers and patients are pivotal for optimizing patient care and enhancing medication adherence and treatment outcomes.

What it means to be an ally in Indigenous healthcare

Background: Strengths-based and culturally sensitive approaches to Indigenous healthcare are much needed within the Canadian healthcare system. This is where allyship comes in. Allyship is loosely defined as the actions of an individual who strives to advance the interests of marginalized groups in which they are not a member. This study investigated the concept of allyship with healthcare providers who were community-identified allies providing care for Indigenous patients. Methods: Qualitative description methodology was utilized, and data was generated through semi-structured interviews with allies in and around the Edmonton area, in Canada. The interviews were conducted online, transcribed verbatim and then coded using thematic analysis. Results: Interviews were conducted with 13 allies (eight physicians, four allied health professionals and one nurse). The results were captured into three main themes. The meaning of allyship demonstrated how allyship must be determined by the community, and encapsulates authentic action and advocacy, as well as working to create positive healthcare experiences. The experience of being an ally included commitment to the allyship journey, embracing emotions, and facing and disrupting systemic barriers. Finally, cultivating allyship in healthcare necessitated building and maintaining meaningful relationships with Indigenous people, and ongoing training and education. Conclusion: The study results enabled a better understanding of how allies interact with their Indigenous patients within the confines of the healthcare system and could inform learning opportunities for those who seek to practice in a culturally humble way. In particular, transcending passive education and training modalities to include opportunities for real life interactions and the development of reciprocal relationships with Indigenous patients.

Barriers and facilitators of access to maternity care for African-born women living in Australia: a meta-synthesis of qualitative evidence

BackgroundAdverse perinatal health outcomes are notably high among African-born women living in Australia. This problem is partly attributed to their lower engagement in maternity care services as compared to Australian-born women. Various barriers might limit African-born women’s access to and use of services; however, these barriers are not well documented. Therefore, this review aimed to synthesise current qualitative evidence on barriers and facilitators of access to maternity care for African-born women living in Australia.MethodsThe search was conducted in MEDLINE, CINAHL, Embase, PsychInfo, and Maternity and Infant Care databases on 16 April 2023. All articles retrieved were meticulously screened for eligibility by two independent reviewers with any disagreements resolved through discussion. The quality of the included articles was evaluated using the Mixed Methods Appraisal Tool. Studies were screened in Covidence and analysed in NVivo. The findings were organised and presented using Levesque’s framework of healthcare access.ResultsOut of 558 identified papers, 11 studies comprising a total of 472 participants met the eligibility criteria. The review highlighted provider-side barriers such as shortage of information, unmet cultural needs, long waiting times, low engagement of women in care, discrimination, and lack of continuity of care. User-side barriers identified include communication issues, difficulty navigating the health system, and lack of trustful relationships with healthcare providers. In contrast, the review pinpointed provider-side facilitators including positive staff attitudes, service availability, and the proximity of facilities to residential homes, while user-side facilitators such as cultural assimilation and feeling valued by healthcare providers were noted.ConclusionsThis review identified barriers and facilitators of access to maternity care for African-born women living in Australia. Empirical evidence that would inform potential changes to policy and practice to address African-born women’s unique health needs was highlighted. Designing and implementing a culturally safe service delivery model could remove the identified access barriers and improve African-born women’s engagement in maternity care. Moreover, reinforcing factors associated with positive healthcare experiences is essential for improving maternity care access for this priority population.Systematic review registrationPROSPERO CRD42023405458.

“My support groups… have saved my life.”: facilitators of positive or satisfactory experiences in behavioral healthcare for transgender and gender nonconforming older adults

Objectives Transgender and gender nonconforming (TGNC) older adults experience significant behavioral health and healthcare disparities. Facilitators that contribute to positive behavioral healthcare experiences among this population, however, remain uncertain. In this study, we investigate facilitators contributing to positive or satisfactory behavioral healthcare experiences among a sample of TGNC older adults in the United States (US). Method Between September 2021 and January 2022, the first author conducted 47 semi-structured, individual interviews with TGNC adults aged 65 years or over in the US. Using an inductive grounded theory approach, we examined respondents’ positive or satisfactory experiences with accessing and utilizing behavioral health services, support, and resources. Analyses were conducted using NVivo (Release 1.6) software. Results Findings underscore the importance of addressing the specific or unique needs of TGNC older patients to promote positive or satisfactory experiences in behavioral healthcare. Three themes emerged: (1) engaging with behavioral healthcare practitioners who offer compassionate, patient-centered care; (2) accessing and utilizing culturally tailored peer-support groups; and (3) receiving equitable access to gender-affirming care and social services. Conclusion These findings highlight opportunities for expanding and incorporating these identified facilitators into behavioral healthcare research and practice, especially when promoting gender affirmation in care for TGNC older patients.

Gendered bodies: A graphic medicine commentary

This final commentary, in comic format, frames this special issue using Graphic Medicine methodologies to explore broader themes and meanings related to the scientific study of gender and health. Comics can be seen as a way to introduce complex human narratives and as an exploratory tool to ask broader social-contextual and ethical questions about health and medicine. This piece is also constructed through the lens of queer scholarship, which, together with the comics format, provides opportunities to build more embodied, complicated narratives about gender, sexuality and health. Most importantly, comics are used as a modality to tell compelling narratives about how individuals, rather than populations, may be impacted by biomedical conceptualizations of gender and health. The commentary includes a series of graphic narratives containing hypothetical stories and cases: stories of how individuals may be harmed within healthcare systems by rigid framings of gender, sex and sexuality, and stories about how gender socialization may impact health in subtle ways. These narratives furthermore examine the inextricable link between gender and power, illustrating how overt and covert manifestations of power may shape a person's health over the life course. Finally, the piece explores how expansive views of gender may contribute to positive health care experiences. The intention of this piece is to nudge scientific researchers and clinicians alike to approach the topic of gender, sexuality and health with nuance and curiosity.

A cross-sectional survey of clinical trials knowledge, participation, and perspectives in an underserved community of Washington, DC.

The inclusion of participants from underrepresented and underserved groups is lagging in dermatology clinical trials. Through dissemination of a pilot survey at a community skin health fair, knowledge, participation, and perspectives of clinical trials were evaluated in an urban, medically underserved community in Washington, DC. Clinical trial-related questions were derived from the Health Information National Trends Survey 5 Cycle 4. This cross-sectional survey analyzed responses from 39/55 attendees (71% response rate). Most respondents were female (23/37 [62.2%]), between the ages of 25 and 54 (19/38, [50.0%]), and self-identified as non-white (35/39 [89.7%]) with a majority self-identifying as Black (16/31 [41%]). Most respondents self-reported knowing "little" to "nothing" about clinical trials (26/35 [74.3%]), and even more were unaware of the federal resource clinicaltrials.gov (30/37 [81.1%]). Few respondents discussed clinical trials as a treatment option with their healthcare provider (8/35 [22.9%]), yet having a discussion was significantly correlated with clinical trial participation (p = 0.0302). Self-reported level of knowledge was not significantly associated with participation in a clinical trial (p = 0.3035). Healthcare providers were the preferred first source of clinical trial information, followed by an internet search. Respondents rarely cited mistrust or skepticism as a barrier to participation (2/34 [5.9%]). Subjective positive healthcare experiences were significantly correlated to positive expectations with clinical trial participation (p = 0.0242). The findings of this study suggest the essential role healthcare providers, including dermatologists, play in clinical trial education and recruitment of underrepresented populations, and that patient mistrust may be present but is a rarely cited barrier to clinical trial participation.

A critical analysis on quality-of-life in women with visible facial disfigurements.

This study aimed to examine whether surgical treatment for a facial disfigurement influenced an individual's quality of life. One-on-one interviews were conducted with the aim of synthesizing participant's medical experiences into common themes. Additionally, participants completed the World Health Organization's Quality of Life Brief Version (WHOQOL-BREF) questionnaire. The WHOQL-BREF is a standardized testing instrument with four domains of 26 questions, meant to analyze participants' overall quality of health, physical health, psychological status, social relationships, and environmental health. Our study revealed that women with visible facial differences experienced a quality of life below the average of the general population. However, in those who reported above-average quality of life, a key theme emerged: active participation in the choice to undergo surgical treatment. Participants who felt this sense of agency in the decision-making process also reported a more positive healthcare experience. They felt more respected by others, indicating a strong connection between personal agency, surgical choices, and overall well-being. These findings reveal that personal agency plays an important role in the decision-making process for patients undergoing surgical treatment for facial differences, as it improves quality of life and has a positive impact on overall healthcare experience and well-being.

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...

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.

"My Goal is…to get Through the Day Without Pain": A Qualitative Study on Chronic Pain Experiences and Treatment Needs Among Child Caregiving Women.

We aimed to understand connections between pain, caregiving, physical and behavioral health treatment needs, and motivations for prescription opioid use among child caregiving women with chronic pain. We conducted in-depth, semi-structured interviews with 12 women (average age 48 years; 58% Black) in child caregiving roles, including women who were pregnant or trying to become pregnant and were caring for children or grandchildren < 18 years, and who received treatment at an outpatient pain management clinic. We used thematic text analysis to identify qualitative themes related to caregiving, pain, treatment, substance use, coping strategies, and sources of support. A diverse sample of women reported high levels of stress and pain, substance use, interpersonal violence, depression, and financial strain. Most described difficulties at work, interacting with children or grandchildren, and engaging routine, daily activities due to their pain. Most indicated that they spent less time with family and friends due to their pain and had limited sources of support to help them navigate both caregiving and pain. Many described barriers to receiving appropriate healthcare, including prescription opioids, due to stigma or logistics, though most also reported positive healthcare experiences. Women also reported added daily-life, physical, mental health, and interpersonal stressors and difficulty navigating the healthcare system to receive needed care. For women with chronic pain in child caregiver roles, results highlight the importance of care tailored to the physical needs of child caregiving and of trauma-informed approaches given the prevalence of comorbid conditions and trauma.

Medication safety perceptions in China: Media exposure, healthcare experiences, and trusted information sources

ObjectiveAmid ongoing medication safety concerns in China and limited research on public perceptions, this study investigates the correlations between media exposure, healthcare experiences, and individuals' perceptions of medication safety. It also examines individuals’ reliance on information sources during safety crises. MethodsA multistage stratified random sampling was employed with the gross sample containing 3090 Chinese adults aged 18–60 years. Data were analyzed using multiple linear regression. ResultsSocial media exposure was found to negatively correlate with perceptions of current medication safety and its perceived improvement, while exposure to television and print media showed positive correlations. Positive healthcare experiences were associated with improved medication safety perceptions. Among various information sources, healthcare professionals were deemed most trustworthy during medication safety incidents. ConclusionsMedia exposure and personal healthcare experiences significantly shape individuals' perceptions of medication safety in China, with healthcare professionals playing a crucial role in this context.Practiceimplications:Effective health crisis communication in China needs to be multifaceted, integrating traditional media and social media platforms to disseminate accurate information broadly. Additionally, healthcare professionals should be actively involved in crisis communication. Their role as trusted sources can be leveraged to clarify misconceptions, and reassure the public during medication safety incidents.

Access to healthcare among transgender women living with and without HIV in the United States: associations with gender minority stress and resilience factors

BackgroundTransgender women (TW) experience significant inequities in healthcare access and health disparities compared to cisgender populations. Access to non-transition related healthcare is understudied among TW. We aimed to assess the association between access to care and gender minority stress and resilience factors among TW living with and without HIV in eastern and southern United States.MethodsThis study was a cross-sectional analysis of baseline data drawn from a cohort of 1613 adult TW from the LITE Study. The cohort permitted participation through two modes: a site-based, technology-enhanced mode and an exclusively online (remote) mode. Exploratory and confirmatory factor analyses determined measurement models for gender minority stress, resilience, and healthcare access. Structural equation modeling was used to assess the relationships between these constructs. Models were evaluated within the overall sample and separately by mode and HIV status.ResultsHigher levels of gender minority stress, as measured by anticipated discrimination and non-affirmation were associated with decreased access to healthcare. Among TW living with HIV, higher levels of anticipated discrimination, non-affirmation, and social support were associated with decreased healthcare access. Among TW living without HIV in the site-based mode, resilience was positively associated with positive healthcare experiences and inversely associated with barriers to healthcare access. Among TW living without HIV in the online mode, anticipated discrimination was associated with barriers to healthcare access; resilience was positively associated with positive healthcare experiences and inversely associated with barriers to healthcare access.ConclusionsGender minority stress was associated with increased barriers to healthcare access among TW in the US, regardless of HIV status. Resilience factors did not mediate this effect. Interventions aiming to increase healthcare access among TW can be aided by efforts to mitigate drivers of gender minority stress and improve patient experiences in healthcare facilities.

“They just knew, and that makes all the difference”: understanding positive healthcare experiences among trans people in Canada

Background Trans people face persistent systemic challenges and barriers in healthcare systems. Despite these obstacles, many trans people have had positive healthcare experiences, however little is known regarding their commonalities. Aims This study aims to better understand factors that influence positive healthcare experiences among trans people. Methods 33 longform interviews were conducted with trans individuals, with 29 being used for the final sample. Interviews were recorded, transcribed verbatim, and analyzed using NVIVO 12 software. Thematic analysis was conducted for the coding process with a combination of inductive and deductive approaches used to develop the coding frame. Results Four healthcare provider (HCP) characteristics and two patient attributes were identified as promoters of positive healthcare experiences. Positive HCP characteristics included having a provider who was 1) a member of the LGBTQ community, 2) knowledgeable, experienced, and willing to learn about trans health, 3) transparent and empowered patients regarding their medical decisions; and 4) sensitive, accepting, and validating of patients’ gender identities. The two patient attributes included: 1) engaging in self-advocacy regarding their care, and 2) being connected to a variety of supportive trans communities, both online and in-person. Discussion Better understanding these positive healthcare experiences can help in the development of curricula and policy to facilitate improved quality healthcare for trans people in Canada.

Advancing language concordant care: a multimodal medical interpretation intervention

BackgroundEnsuring language concordant care through medical interpretation services (MIS) allows for accurate information sharing and positive healthcare experiences. The COVID-19 pandemic led to a regional halt of in-person interpreters, leaving...

"When You Look at This Chart, That Is Not My Whole Life": Caregiver Perspectives to Inform Improved Primary Care Practice and Outcomes.

Worsening rates of infant and maternal mortality in the United States serve as an urgent call for multi-modal intervention. Infant Well Child Visits (WCVs) provide an opportunity for prevention, however not all infants receive the recommended schedule of visits, with infants of low-income and Black families missing a higher portion of WCVs. Due to diverse experiences and needs of under-resourced communities throughout the United States, caregiver voice is essential when designing improvement efforts. Purposeful sampling and interviewing of 10 caregivers in Cincinnati, OH was performed by community peer researchers. Interview transcripts were evaluated by the research team, with identification of several important themes. Nine out of 10 caregivers self-identified as Black. All young children of the interviewed caregivers had Medicaid as their insurance provider. All interviews highlighted rich perspectives on caregiver hopes for their child, family, and selves. Establishing trust through empathy, shared decision making, and the nurturing of interpersonal patient-practitioner relationships is crucial for fostering a positive healthcare experience. Levels of mistrust was perceptibly high across several interviews, with lack of racial concordance between medical provider and family exacerbating the issue for some caregivers. Caregivers voiced a tendency to rely on family and community members for when to seek out health care for their children, and additionally cited racism and perceptions of being rushed or judged as barriers to seeking further care. This study emphasizes the importance of being community-informed when considering interventions. Prior research on the topic of missed WCV's often focused on material resource availability and limitations. While that was commented on by caregivers in this study as well, equal-if not more-attention was directed toward interpersonal relationship formation, the presence or absence of trust between practitioner and caregiver, and the importance of social-emotional support for caregivers. We highlight several opportunities for systemic improvements as well as future directions for research.

Navigating Patient Comfort: Gendered Perspectives on Medical Student Involvement in Healthcare Interactions in Peshawar, Pakistan

Patient interactions are fundamental to medical education, influencing the training of medical students and shaping their clinical understanding. Objective: To probe patient perspectives on the presence of medical students during consultations, clinical examinations and surgical procedures, with a focus on identifying gender-based differences in preferences and comfort levels. Methodology: This cross-sectional study was conducted in tertiary care hospitals in Peshawar involving 500 patients from Northwest General Hospital and Research Center and Northwest Teaching Hospital, data collected through a self-structured questionnaire revealed distinct gender disparities. Results: Male participants generally exhibited higher approval and comfort levels with medical student involvement, particularly during consultations, examinations, and surgery. Variations were evident in preferences related to medical history taking, comfort during physical examinations, and willingness to permit students in the operating room. Patients underscored the importance of recognizing gender preferences in medical student interactions. Conclusions: This study emphasized the significance of tailoring medical education practices to address gender-specific variations, ensuring a patient-centered approach and fostering positive healthcare experiences for all.

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.

Exploring the transition experiences of young adults with cerebral palsy.

It is important that young adults with a chronic health condition or developmental disability, such as cerebral palsy, receive adequate healthcare transition preparation and support to optimise the transition period and transfer from paediatric to adult health services. Understanding the healthcare experiences of young adults during and after the transition period will provide valuable insights into what enables a positive healthcare experience for young adults in the adult health setting. Eleven young adults with cerebral palsy who had their last appointment at the Royal Children's Hospital between 2016 and 2018 were purposively recruited for this study. Ten participants completed one-on-one telephone interviews, and one participant provided written responses to interview questions. Five participated via parent proxy. Interviews were recorded, transcribed verbatim, and analysed using the Braun and Clarke six-step thematic analysis to create an interpretive description of participants' transition experiences. Three themes were generated: (1) "preparedness of the young adult and parent," which discussed the preparation for adult healthcare, with subthemes (a) expectations of adult care and (b) development of self-management skills during transition; (2) "coordination of transfer process and continuity of care," which illustrated the impact of transfer coordination on continuity of care; and (3) "adjusting to adult services," which highlighted experiences of care in the adult setting, with subthemes (a) differences between paediatric and adult services, (b) availability and accessibility of adult and community services to meet needs, and (c) autonomy and agency. Dedicated transition support for young adults and their parents during transition from paediatric to adult healthcare plays an important role in ensuring a supportive and well-coordinated transition and transfer of care. Experience of care in the adult setting is influenced by a combination of both transition experience and the capacity of adult services to cater for young adults' needs.

Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study.

Autistic individuals have higher rates of co-occurring medical conditions and service use. However, autistic individuals and their families also reported lower satisfaction with health care service delivery. Previous studies described health care experiences of autistic adults, but less is known about those of autistic adolescents and young adults. This study aimed to qualitatively describe the health care experiences of autistic youth. Four longitudinal/serial focus groups were conducted with 8 autistic adolescents and young adults. Participants were members of an autistic patient advisory board, which is part of a broader initiative at a large, urban, safety-net hospital to improve the health care experiences of autistic patients. Focus groups were conducted virtually and were audio-recorded. Audio recordings were transcribed and verified for accuracy. Transcripts were consensus-coded with an inductive approach using tenets of grounded theory. Findings included 4 recurring themes: accessibility and accommodations, barriers of health service use, patient involvement in health care decisions, and facilitators of patient-clinician relationship. Participants noted that visit preparation, sensory items, and repeated positive interactions with clinician were helpful to build a positive health care experience. Our findings support previous research that suggest the need to individualize care, ensure availability of accommodations, apply flexibility in practice whenever possible, and increase health care professional knowledge about this unique patient population.