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

BACKGROUND: Racism 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. METHODS: This 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 (Maori, 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. RESULTS: The 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. CONCLUSION: In 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.

Recreational-vehicle-dwelling American nomads' experiences seeking healthcare: A qualitative field study.

AIM: To explore the experiences of recreational-vehicle-dwelling American nomads when seeking healthcare in the United States. DESIGN: This exploratory, qualitative study employed interpretive description design to maintain a disciplinary focus in nursing. METHODS: Twenty-five participants were recruited from campgrounds in eight states. Semi-structured interviews were conducted face-to-face. Thematic analysis was conducted using a phronetic iterative approach. RESULTS: Three overarching themes described participants' experiences seeking healthcare: overwhelming logistics, don't need healthcare, and orchestrating a web of care. CONCLUSION: Recreational-vehicle-dwelling nomads in the United States face additional complexity when accessing healthcare related to seeking care in unfamiliar locations and policies that prevent the portability of healthcare across state lines. IMPLICATIONS: More research is needed to evaluate solutions to improve healthcare access for recreational-vehicle-dwelling nomads. Nurses and policymakers should consider healthcare practices through the lens of nomads' lifestyle mobility. The impact of policy decisions on people who are geographically mobile should be considered, and barriers to healthcare portability should be addressed. IMPACT: This was the first study focused on the healthcare experiences of recreational-vehicle-dwelling nomads in the United States. Nomads face additional complexity and barriers to healthcare access. Some nomads developed strategies to overcome barriers, while others disengaged from healthcare. The findings will impact researchers and nurses who study and care for nomads. REPORTING METHOD: The SRQR reporting guidelines were followed. PATIENT OR PUBLIC CONTRIBUTION: Recreational-vehicle-dwelling nomads reviewed the recruitment flyer and interview guide and provided input on recruitment methods and sites.

Experiences of diagnosis and treatment for upper limb Complex Regional Pain Syndrome: a qualitative analysis.

INTRODUCTION: Complex Regional Pain Syndrome (CRPS) most frequently affects the upper limb, with high associated disability. Delays to diagnosis and appropriate treatment can adversely impact prognosis and quality of life, but little is known about the healthcare experiences of people with CRPS. This study aimed to explore lived experiences of diagnosis and treatment for people with upper limb CRPS. METHODS: Participants were recruited through online support groups and multiple public and private healthcare settings in the Greater Wellington Region, New Zealand. Semi-structured interviews were conducted with participants who had experienced upper limb CRPS for more than three months and less than three years. Interviews were transcribed verbatim and analysed using reflexive thematic analysis. RESULTS: Thirteen participants (11 female, 2 male) aged between 43 and 68 years were interviewed. Duration of CRPS ranged from 7 months to 2.5 years. Five themes were identified. Participants initially engaged in healthcare out of a desire to return to being the person they were before having CRPS. Three interacting experiences epitomised the overall healthcare experience: (1) not knowing what is going on, (2) not being taken seriously, and (3) healthcare as adding another layer of load. Meanwhile, participants used multiple approaches in an attempt to not let CRPS stop them from continuing to live their lives. CONCLUSIONS: Participants in this study felt that credible information, validation, and simplification from healthcare providers and systems would support their process of navigating towards a meaningful life and self-concept in the presence of CRPS.

Assessing Spatial User Experience for Design Guidelines: A Comparative Study of Outpatient Waiting Rooms With Conventional Versus Modern Features.

OBJECTIVES: Identify waiting room design features that are most appreciated by outpatients and their companions in conventional and modern waiting rooms. Evaluate if end users evaluate the environment differently from experts and in what aspects. Provide evidence-based design guidelines that orient designers and healthcare managers. BACKGROUND: Built environments are relevant in patients' evaluation of overall healthcare service. For outpatients, waiting frequently consumes the largest amount of time; thus, waiting room interior design has great potential to enhance their experience. METHODS: This study compares perceptions of two types of waiting rooms-conventional and modern-based on the spatial user experience (SUE) model. In the first stage of the study, we compared user evaluations of conventional waiting rooms (n = 137) and modern waiting rooms (n = 426) with respect to the eight SUE model dimensions using multigroup structural equation modeling. In the second stage, an expert ergonomist and two professional interior designers assessed both types of waiting rooms. RESULTS: Results showed that modern waiting rooms were perceived to be significantly better in all SUE dimensions. We also found experts' evaluations were overall consistent with users' perceptions. Discrepancies were only found in temperature perception, signage evaluation, and spatial appreciation. CONCLUSIONS: Participants valued modern style waiting room features such as good quality signage, use of armchairs and sofas, a controlled environment, and decoration. We suggest involving end users in the design process to respond to their needs and promote a positive experience. Finally, we provide easy-to-adopt design guidelines to improve patients' waiting room experience.

"They are dealing with people's lives ": Diagnostic and post-diagnostic healthcare experiences in primary progressive aphasia.

PURPOSE: The healthcare experience is a multifaceted and varied process, particularly for people living with complex conditions such as primary progressive aphasia (PPA). Different experiences influence pathways through the health system, impacting client outcomes. To our knowledge, no previous studies have directly explored the healthcare experiences of people with PPA and their families. This study aimed to explore the experiences of people living with PPA from the perspective of both the person with PPA and their families during diagnostic and post-diagnostic phases, and to identify factors influencing service access and perceptions of quality of care. METHOD: The study followed an Interpretive Phenomenological Analysis (IPA) approach. In-depth, semi-structured interviews were completed with three people with PPA and their primary care partner, and two further care partners of people with PPA. RESULT: Five superordinate themes were identified: characterising the assessment experience, getting a diagnosis, moving beyond the diagnosis, participant interactions with clinicians, and overall service provision. The five superordinate themes comprised 14 subthemes. CONCLUSION: The study provides preliminary insights into the complexity of the PPA healthcare journey, and the need for increased accessibility of information and supports following diagnosis. The findings inform recommendations for improving quality of care and the development of a PPA service framework or care pathway.

A mixed-methods program evaluation of the Alda Healthcare Experience- a program to improve healthcare team communication.

BACKGROUND: Communication among interprofessional healthcare worker teams is critical to ensure a thriving and resilient workforce. We will evaluate the implementation and effectiveness of the Alda Healthcare Experience (AHE), a novel medical improvisation (improv) workshop designed to improve interprofessional communication skills among healthcare professionals. The AHE workshop includes a two-hour experiential training workshop led by an improv specialist and a clinical co-facilitator. In July 2022 we began implementing the AHE workshop by training 18 clinical co-facilitators who will co-facilitate the workshops for 550 healthcare workers from five hospital departments at Stony Brook University Hospital over the course of a year and a half. Using mixed-methods, we will conduct an Effectiveness-Implementation Hybrid Design project that includes an outcome evaluation (effectiveness) and a process evaluation (implementation). METHODS: Our outcome evaluation will assess the impact of the AHE workshop on short- and long-term improvement in interprofessional communication, stress, and professional fulfillment. The process evaluation component will examine programmatic, organizational, and individual facilitators or barriers to effective implementation of the AHE workshop. Qualitative methods will include dimensional analysis employing individual interviews of 20-40 AHE Project Participants, 5-10 Selected Informants, and all the clinical co-facilitators. Quantitative methods will use a quasi-experimental longitudinal design with an intervention group and surveillance of a control group (wait-list) and repeated assessments using validated instruments measuring communications skills, professional fulfillment, stress, burnout, uncertainty tolerance, and teamwork. DISCUSSION: Effective and efficient communication within healthcare teams is fundamental to building team cohesion that, in turn, supports individual resilience and builds positive organizational culture. The AHE program is an innovative approach to improve interprofessional healthcare communication and reduce healthcare worker burnout. In addition to institutional buy-in, rigorous evaluations of medical improv programs are necessary as a critical step in making such programs scalable. TRIAL REGISTRATION: N/A.

Patient and Staff Satisfaction and Experience While Transforming Health Center Systems.

Introduction: Patient satisfaction and experience are important measures of overall quality of care. In 2017, the National Association of Community Health Centers (NACHC) launched an initiative to facilitate changes across organizational systems within Federally Qualified Health Centers (FQHCs) with the goal of improving value-driven care. Methods: NACHC worked with eight health centers, four in Georgia and four in Iowa, along with their state Primary Care Associations, to apply the Value Transformation Framework (VTF). This framework distills evidence-based practices into practical knowledge for goal-driven systems change. It provides actionable steps to help health centers reach value-driven goals of improved health outcomes, improved patient and staff experience, reduced costs, and improved equity (referred to as the Quintuple Aim goals). This paper reports on the patient and staff experience when applying VTF systems changes to improve colorectal cancer screening rates. Results: Patient and staff satisfaction and experience remained highly rated even after extensive organizational changes were implemented as part of this project. Implementation of a systems-approach to organizational change, through application of the VTF, did not negatively impact patient or staff experiences. Conclusion: Patient and staff satisfaction and experience were positive despite the application of the VTF and systems-wide organizational changes. These experience results were alongside improved cancer screening rates, as observed from full project results. Investigators are encouraged that the application of systems change using the VTF may result in the achievement of Quintuple Aim goals without disrupting the experience of patients and staff. Investigators recommend continued exploration of this transformation approach.

The Relationship between Healthcare Experience and Perinatal Depression during COVID-19 Pandemic / La relación entre la experiencia de la atención sanitaria y la depresión perinatal durante la pandemia COVID-19

Background: The prevalence of peripartum depression (PPD) has increased substantially since the start of the COVID-19 pandemic. To reduce the probability of contagion, hospitals had to adapt their care protocols, including the care of women in the perinatal period. Method: A cross-sectional study was used in a total sample of 3,356 women, 1,402 in the prenatal period and 1,954 in the postnatal period. They completed the Edinburgh Postnatal Depression Scale to assess depressive symptoms and the Spanish version of the Coronavirus Perinatal Experiences to assess health experience. Results: The results showed that feeling very well supported by a health professional was associated with a lower risk of PPD. On the other hand, believing it very important to have access to a mental health professional and being concerned about changes in infant care due to COVID-19 were associated with a higher risk of PPD. Conclusion: The results showed the relationship between health experience and the risk of depressive symptoms, highlighting the importance of considering the psychological aspects in the development of measures and protocols for perinatal care. (AU)

Antecedentes: La prevalencia de la depresión perinatal ha aumentado sustancialmente desde el inicio de la pandemia debido al coronavirus (COVID-19). Para reducir la probabilidad de contagio, los hospitales tuvieron que adaptar sus protocolos asistenciales, incluyendo la atención a las mujeres en el periodo perinatal. Método: Se utilizó un estudio transversal en una muestra total de 3,356 mujeres, 1,402 en el período prenatal y 1,954 en el período postnatal. Cumplimentaron la Escala de Depresión Postnatal de Edimburgo para evaluar los síntomas depresivos y la versión española de la Encuesta sobre Experiencias Perinatales durante el Coronavirus para evaluar la experiencia de la atención sanitaria. Resultados. Los resultados mostraron que sentirse muy bien apoyada por un profesional de la salud se asoció con un menor riesgo de desarrollar depresión perinatal. Por otro lado, creer que es muy importante tener acceso a un profesional de la salud mental y estar preocupada por los cambios en el cuidado del bebé debido al COVID-19 se asociaron con un mayor riesgo de depresión perinatal. Conclusión: Los resultados mostraron la relación entre la experiencia sanitaria y el riesgo de síntomas depresivos, destacando la importancia de considerar los aspectos psicológicos en el desarrollo de medidas y protocolos de atención perinatal. (AU)

Patient-reported continuity of care and the association with patient experience of cardiovascular prevention: an observational study in Germany.

BACKGROUND: Cardiovascular diseases are often accompanied by comorbidities, which require good coordination of care. Especially in fragmented healthcare systems, it is important to apply strategies such as case management to achieve high continuity of care. The aim of this study was to document continuity of care from the patients' perspective in ambulatory cardiovascular care in Germany and to explore the associations with patient-reported experience of cardiovascular prevention. METHODS: This cross-sectional observational study was performed in primary care practices in Germany. The study included patients with three recorded chronic diseases, including coronary heart disease. Continuity of care was measured with the Nijmegen Continuity Questionnaire, which addresses personal/relational and team/cross-boundary continuity. From aspects of medical care and health-related lifestyle counselling a patient-reported experience of cardiovascular prevention index was formed with a range of 0-7. The association between continuity of care within the family practice and patient-reported experience of cardiovascular prevention was examined, using a linear multilevel regression model that adjusted for sociodemographics, structured care programme and numbers of contacts with the family practice. RESULTS: Four hundred thirty-five patients from 26 family practices participated. In a comparison between general practitioners (GPs) and cardiologists, higher values for relational continuity of care were given for GPs. Team/cross-boundary continuity for 'within the family practice' had a mean of 4.0 (standard deviation 0.7) and continuity between GPs and cardiologists a mean of 3.8 (standard deviation 0.7). Higher personal continuity of care for GPs was positively associated with patient-reported experience (b = 0.75, 95% CI 0.45-1.05, P < 0.001). CONCLUSIONS: Overall, there was high patient-reported continuity, which positively influenced the experience of cardiovascular prevention. Nevertheless, there is potential for improvement of personal continuity of the cardiologists and team/cross-boundary continuity between GPs and cardiologists. Structured care programs may be able to support this. TRIAL REGISTRATION: We registered the study prospectively on 7 November 2019 at the German Clinical Trials Register (DRKS) under ID no. DRKS00019219 .

Multi-Level Barriers to Prison Mental Health and Physical Health Care for Individuals With Mental Illnesses.

Objectives: People with mental illnesses are overrepresented in the U.S. prison population. It is well established that incarceration for this population poses physical and mental health risks including greater likelihood of victimization and suicide compared to the general prison population. Yet, research is less clear about how staff and services shape these prison experiences. The aim of this study was to examine how people with mental illnesses experience incarceration through interactions with correctional officers and treatment staff and their use of physical and mental health care services. Methods: This project utilized a non-experimental design and qualitative research approach to address the research aims. Adults with mental illnesses who were formerly incarcerated were recruited from three different sites in the Midwest and East Coast. Participants completed an in-depth interview and brief survey on health histories. Data were analyzed using descriptive statistics and the framework method for qualitative analysis. Results: Participants (n = 43) identified challenges to utilizing health and mental health care including perceived access and quality of mental health, medical, or substance use treatments obtained during prison as well as participant's willingness to engage in services. Access to health care was marked by cumbersome procedures required for service use requests and inadequate staffing. Participants reported mixed experiences with medical and mental health staff ranging from experiencing kindness to feeling staff did not believe them. Participants perceived most correctional officers as exhibiting professionalism while some enacted stigma and created additional stressors. Conclusion: Interactions with correctional staff and health care services have the potential to buffer the stressors and risks inherent in prisons for people with mental illnesses. Perceptions from participants suggest both individual- and systems-level opportunities for intervention to better support people with mental illnesses in prison.

Termination of pregnancy for fetal anomaly: a systematic review of the healthcare experiences and needs of parents.

BACKGROUND: Improved technology and advances in clinical testing have resulted in increased detection rates of congenital anomalies during pregnancy, resulting in more parents being confronted with the possibility of terminating a pregnancy for this reason. There is a large body of research on the psychological experience and impact of terminating a pregnancy for fetal anomaly. However, there remains a lack of evidence on the holistic healthcare experience of parents in this situation. To develop a comprehensive understanding of the healthcare experiences and needs of parents, this systematic review sought to summarise and appraise the literature on parents' experiences following a termination of pregnancy for fetal anomaly. REVIEW QUESTION: What are the healthcare experiences and needs of parents who undergo a termination of pregnancy following an antenatal diagnosis of a fetal anomaly? METHODS: A systematic review was undertaken with searches completed across six multi-disciplinary electronic databases (Medline, Embase, PsycINFO, CINAHL, Web of Science, and Cochrane). Eligible articles were qualitative, quantitative or mixed methods studies, published between January 2010 and August 2021, reporting the results of primary data on the healthcare experiences or healthcare needs in relation to termination of pregnancy for fetal anomaly for either, or both parents. Findings were synthesised using Thematic Analysis. RESULTS: A total of 30 articles were selected for inclusion in this review of which 24 were qualitative, five quantitative and one mixed-methods. Five overarching themes emerged from the synthesis of findings: (1) Contextual impact on access to and perception of care, (2) Organisation of care, (3) Information to inform decision making, (4) Compassionate care, and (5) Partner experience. CONCLUSION: Compassionate healthcare professionals who provide non-judgemental and sensitive care can impact positively on parents' satisfaction with the care they receive. A well organised and co-ordinated healthcare system is needed to provide an effective and high-quality service. TRIAL REGISTRATION: PROSPERO registration number: CRD42020175970 .

Monitored but not sufficiently guided - A qualitative descriptive interview study of maternity care experiences and needs in women with chronic medical conditions.

OBJECTIVE: To explore maternity care experiences and needs of women with various types of chronic medical conditions receiving specialised maternity care. Design A qualitative descriptive study. SETTING: A highly specialised hospital providing maternity care to women with high-risk pregnancies in Copenhagen, Denmark. Participants Fourteen purposefully selected women referred to specialist maternity care at a large tertiary hospital due to one or more chronic medical conditions. METHODS: Individual in-depth interviews (n = 14) were performed between January 2018 and June 2019. Analysed using thematic analysis. RESULTS: One overarching theme was identified: Monitored but not sufficiently guided. Three main themes unfolding this overarching theme were: Chronic condition as determining pregnancy care, Childbearing woman as messenger and interpreter, and Feelings of abandonment after giving birth. KEY CONCLUSIONS: Across various types of chronic medical conditions, women expressed a need for increased continuity in specialised maternity care. Healthcare professionals should help women with chronic medical conditions navigate the healthcare system and interpret complex information. IMPLICATIONS FOR PRACTICE: Pregnancy should be recognised as a significant life event, even though the childbearing woman is living with a chronic medical condition, and professionals should emphasise the aspects of pregnancy that develop uncomplicated. Information about the anticipated development of chronic medical conditions postpartum and concerns regarding breastfeeding could preferably be addressed during pregnancy. Continuity of care was particularly important to the women and could relieve some of the worrying women experienced during pregnancy.

Attitudes of pregnant women and healthcare professionals to labour induction and obtaining consent for labour induction.

Induction of labour is experienced by up to one third of women and can be a negative experience, in relation to both the decision about whether to have an induction of labour (IoL) and the experience of the process of IoL. This paper reviews the limited evidence of women's views on and experiences of: information provision; shared decision-making; preferences for method and location of IoL; indications for IoL; pain management; and effective communication and support. Healthcare professionals' views are reviewed, but are underrepresented, and further research is needed to understand experiences of gaining consent for IoL. Systematic review evidence is drawn on where possible, but reviews often found small numbers of papers for inclusion, and provide insights rather than conclusive evidence. Future research would benefit from using validated measures to assess the experience of IoL.

Torture-survivors' experiences of healthcare services for pain: a qualitative study.

BACKGROUND: Increasing numbers of torture-survivors are presenting to UK healthcare services with persistent pain. However, there is a paucity of evidence surrounding the management of persistent pain among torture-survivors and their experience of healthcare services for pain is currently unknown. This qualitative study explores their experiences of services for managing pain, to inform clinical practice and service provision. METHODS: Thirteen participants were recruited from a specialist pain clinic for torture-survivors in the United Kingdom. Utilising an ethnographic approach, data were collected via clinic appointment observations, interviews and medical records and analysed using inductive thematic analysis. RESULTS: Three themes emerged in relation to torture-survivors' experiences of healthcare services for pain: the patient-clinician relationship; multiplicity of diagnoses and treatments; lack of service integration. Participants described limited engagement in decision-making processes regarding their care. Lack of recognition of torture experience when diagnosing and treating pain, alongside multiple unsuccessful treatments, led to confusion, frustration and hopelessness. These issues were exacerbated by the disconnect between physical and mental health services. CONCLUSION: This study provides new insight into the challenges faced by torture-survivors when accessing healthcare services for pain. Our findings suggest current service provision is not meeting their complex needs. Clinical implications include the need for integrated care systems and better recognition of the influence of torture experience on persistent pain. Strategies to engage and empower torture-survivors in the management of their pain are suggested.

A qualitative study of home health care experiences among Chinese homebound adults.

BACKGROUND: Home health care services (HHC) are emerging in China to meet increased healthcare needs among the homebound population, but there is a lack of research examining the efficiency and effectiveness of this new care model. This study aimed to investigate care recipients' experiences with HHC and areas for improvement in China. METHODS: This research was a qualitative study based on semi-structured interviews. Qualitative data were collected from homebound adults living in Jinan, Zhangqiu, and Shanghai, China. A sample of 17 homebound participants aged 45 or older (mean age = 76) who have received home-based health care were recruited. Conceptual content analysis and Colaizzi's method was used to generate qualitative codes and identify themes. RESULTS: The evaluations of participants' experiences with HHC yielded both positive and negative aspects. Positive experiences included: 1) the healthcare delivery method was convenient for homebound older adults; 2) health problems could be detected in a timely manner because clinicians visited regularly; 3) home care providers had better bedside manners and technical skills than did hospital-based providers; 4) medical insurance typically covered the cost of home care services. Areas that could potentially be improved included: 1) the scope of HHC services was too limited to meet all the needs of homebound older adults; 2) the visit time was too short; 3) healthcare providers' technical skills varied greatly. CONCLUSIONS: Findings from this study suggested that the HHC model benefited Chinese older adults-primarily homebound adults-in terms of convenience and affordability. There are opportunities to expand the scope of home health care services and improve the quality of care. Policymakers should consider providing more resources and incentives to enhance HHC in China. Educational programs may be created to train more HHC providers and improve their technical skills.

Factors influencing care-seeking delay or avoidance of heart failure management: A mixed-methods study.

BACKGROUND: Delayed care-seeking for heart failure symptoms increases the risk of unplanned and frequent hospitalization. Presenting to hospital at a later stage when symptoms are severe requires more complex treatment, contributing to longer lengths of stay and higher risk of mortality. Patient-related factors such as knowledge have been highlighted as key contributors to care-seeking delay, yet little is known about how previous experiences within the healthcare setting, including relationships with providers, influence decisions to engage with health services when required. OBJECTIVE: To assess patient-related factors thought to impact care-seeking, and examine the role of previous healthcare experiences in decisions to seek or avoid professional care. DESIGN: Sequential mixed-methods study with a phenomenological approach. SETTINGS: A cardiology in-patient ward in a quaternary referral hospital in Sydney, Australia. PARTICIPANTS: A total of 72 symptomatic in-patients diagnosed with heart failure. METHODS: Self-efficacy, heart failure knowledge and health literacy were assessed quantitatively. Semi-structured, in-depth interviews were undertaken with a subset of participants to elicit previous healthcare experiences and their influence on seeking care when symptoms worsened. Qualitative data were analyzed using interpretative phenomenological analysis and interpreted in the context of quantitative findings. RESULTS: Three major themes were identified that impacted decisions to seek or avoid professional care: (i) preference for continuity; (ii) previous hospital experience and; (iii) patient-provider relationships. Avoidance of care-seeking was described, despite quantitative data reflecting high levels of self-efficacy, heart failure knowledge (12.3±1.9 out of 15), and above-average health literacy levels (75% adequate - 15% higher than average in heart failure). The qualitative and quantitative data together demonstrate that participants delayed seeking care for heart failure symptoms despite having sound knowledge and self-efficacy to seek professional care when necessary. CONCLUSION: Previous healthcare experience affects patient's subsequent action, despite having skills and heart failure knowledge. Interactions with the healthcare system and those within it may impact decisions to avoid seeking treatment more than patient-related factors such as condition-specific understanding.

Women's experience of induction of labor using PGE2 as an inpatient versus balloon catheter as an outpatient.

OBJECTIVE: Induction of labor (IOL) typically involves cervical priming in an inpatient setting. Outpatient cervical priming may be a safe and cost-effective alternative. However, little is known about women's preference and the impact of outpatient cervical priming on their healthcare experience. The objective was to compare women's healthcare experiences following IOL using a balloon catheter and going home, versus prostaglandin (PG) and remaining an inpatient. STUDY DESIGN: A randomized controlled trial was undertaken across eight Australian maternity hospitals. Between September 2015 and October 2018, 695 women with uncomplicated term singleton pregnancies were randomized. Of these, 215 and 233 women in the balloon-outpatient and PG-inpatient groups, respectively, received the allocated intervention. The PG group received Dinoprostone gel or controlled-release tape. The balloon group had a double-balloon catheter inserted and went home. Experiential and quality-of-life outcomes were measured via written questionnaire after birth. The primary outcome was a composite neonatal measure. Women's healthcare experience, health-state (EQ-5D-3 L) and pain scores are reported here. RESULTS: Questionnaire data were available for 366 (81.7 %) women enrolled who received their treatment allocation. More women in the balloon-outpatient group reported they would choose IOL next pregnancy (49.2 % vs 38.4 %; p = 0.037) and desire the same method (72.4 % vs 61.1 %; p = 0.022). The balloon-outpatient group experienced higher pain scores at the start of IOL (median (IQR) 3(2-5) vs 2(1-4); p = 0.002) but lower scores at time of rupture of membranes (3(1-5) vs 4(2-6); p = 0.007). The EQ-5D-3 L health-utility index did not differ significantly between the groups (0.77 vs 0.78; p = 0.899). CONCLUSIONS: Women report similar healthcare experiences following balloon-outpatient compared to PG-impatient IOL, but are more likely to desire the same method next pregnancy if IOL is required. If both options are available, then differences in experience should be shared with women, alongside differences in clinical outcomes as part of their decision-making process.

Negotiating the boundaries of the medical model: Experiences of people with epilepsy.

People with epilepsy (PWE) continually report dissatisfaction with the support they receive, particularly in regard to their psychological wellbeing. With its focus on optimal seizure control, epilepsy treatment is entrenched in the medical model of illness, despite growing evidence of the broader psychosocial impact of the condition. This study aimed to explore how PWE experience healthcare in the context of their lives. Semistructured interviews were conducted with thirty-nine adults with epilepsy from across the UK. An adapted version of interpretative phenomenological analysis (IPA) was conducted, and three superordinate themes were identified. Firstly, "negotiating the space between health and illness" identified how participants rejected the illness identity and struggled with a treatment regime, which reminded them of the longevity of their condition. Secondly, "tensions in adopting a biomedical perspective" considered how medical professionals overlooked the negative side effects medication had on participants' lives, in favor of optimal seizure control. Thirdly, "the need for broader support" highlighted the additional psychosocial support PWE require. The findings indicate the need to incorporate person-centered, psychological services within the care pathway for PWE, as well as training for health professionals to recognize the broader impact of epilepsy beyond seizure management.

Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians.

BACKGROUND: Health for people with cerebral palsy (CP) must extend beyond physical impairments to include social, environmental, and psychological factors that are rarely captured by quantitative research alone. This qualitative study sought to explore the lived experience of young people with CP with their physical, mental, and emotional health in the context of a larger longitudinal Canadian study focusing on brain function, physical and mental health, and well-being. METHODS: An integrated research team (including people with CP or other impairments, clinicians, and researchers) was formed to study participant-identified research needs. A purposive sample of 16 people with CP (seven female), aged 17-29, Gross Motor Function Classification System (GMFCS) levels I-V, participated in three focus groups that were conceptualized and analysed using interpretive description methodology. RESULTS: This study reports the experiences of people with CP across GMFCS levels and identifies some consequences of growing up with the condition: physical and mental health issues, importance of meaningful participation, impact of the environment, and identity formation. Participants shared challenges related to accessibility, healthcare, social/environmental supports, relationships, and sustainable employment. DISCUSSION: Body structure and function challenges impact participation in activities of daily living, threatening participants' ability to form positive identities and live meaningful lives. People with CP desire to work but may require additional training, accommodation, and support to do so. Environmental conditions, including relationships, supportive people, and accessibility, shape participants' health, well-being, and social/civic engagement. This study confirms the need for improved care for adults with CP, including multidisciplinary adult health team(s) and community services.

Oral healthcare experiences of humanitarian migrants in Montreal, Canada.

OBJECTIVE: To understand the oral healthcare experiences of humanitarian migrants in Montreal and their perceptions of ways to improve access to oral healthcare. METHODS: We used focused ethnography informed by a public health model of the dental care process. The adapted McGill Illness Narrative Interview (MINI) guided interviews of a purposeful sample of humanitarian migrants who received or needed dental care in Montreal. Each interview (50-60 min) was audio-recorded for verbatim transcription. Observation of dental care episodes occurred during mobile dental clinics in underserved communities over the same period (2015-2016). Data analysis combined deductive codes from the theoretical frameworks and inductive codes from interview transcripts and field notes to inform themes. RESULTS: We interviewed 25 participants (13 refugees and 12 asylum seekers) from 10 countries, who had been in Canada for a range of 1 month to 5 years. The dental care experiences of participants included delayed consultation, proximity to dental clinics, quality care, limited treatment choices, high cost, and long waiting times. A more inclusive healthcare policy, lower fees, integration of dental care into public insurance, and creation of community dental clinics were proposed strategies to improve access to dental care. CONCLUSION: Humanitarian migrants in this study experienced inadequate oral healthcare. Their lived experiences help us to identify gaps in the provision of oral healthcare services, and suggestions of participants have great potential to improve access to oral healthcare.