Experienced disrespect & abuse during childbirth and associated birth characteristics: a cross-sectional survey in the Netherlands.

BACKGROUND: Experiencing upsetting disrespect and abuse (D&A) during labour and birth negatively affects women's birth experiences. Knowing in what circumstances of birth women experience upsetting situations of D&A can create general awareness and help healthcare providers judge the need for extra attention in their care to help reduce these experiences. However, little is known about how different birth characteristics relate to the experience of D&A. Previous studies showed differences in birth experiences and experienced D&A between primiparous and multiparous women. This study explores, stratified for parity, (1) how often D&A are experienced in the Netherlands and are considered upsetting, and (2) which birth characteristics are associated with these upsetting experiences of D&A. METHODS: For this cross-sectional study, an online questionnaire was set up and disseminated among women over 16 years of age who gave birth in the Netherlands between 2015 and 2020. D&A was divided into seven categories: emotional pressure, unfriendly behaviour/verbal abuse, use of force/physical violence, communication issues, lack of support, lack of consent and discrimination. Stratified for parity, univariable and multivariable logistic regression analyses were performed to examine which birth characteristics were associated with the upsetting experiences of different categories of D&A. RESULTS: Of all 11,520 women included in this study, 45.1% of primiparous and 27.0% of multiparous women reported at least one upsetting experience of D&A. Lack of consent was reported most frequently, followed by communication issues. For both primiparous and multiparous women, especially transfer from midwife-led to obstetrician-led care, giving birth in a hospital, assisted vaginal birth, and unplanned cesarean section were important factors that increased the odds of experiencing upsetting situations of D&A. Among primiparous women, the use of medical pain relief was also associated with upsetting experiences of D&A. CONCLUSION: A significant number of women experience upsetting disrespectful and abusive care during birth, particularly when medical interventions are needed after the onset of labour, when care is transferred during birth, and when birth takes place in a hospital. This study emphasizes the need for improving quality of verbal and non-verbal communication, support and adequate decision-making and consent procedures, especially before, during, and after the situations of birth that are associated with D&A.

Exploring Factors Affecting Patient-Provider Interactions and Healthcare Engagement Among a Diverse Sample of Women Who Have Sex with Women in New York City.

Women who have sex with women (WSW) have lower rates of engagement in health care and preventive screenings than women who have sex exclusively with men. Existing literature provides limited insight into how intersecting and overlapping identities, such as race, ethnicity, sexual orientation, gender identity, and identities related to gender expression, may shape individuals' experiences within health care. We conducted qualitative interviews in New York City with 30 people who identified as women, reported sex with people who identify as women, were age 18-65, and were diverse in race, ethnicity, and sexual orientation and gender identity. The semi-structured questionnaire asked participants about positive and negative healthcare experiences to elicit what could encourage or prevent seeking care, with a focus on provider-related factors. Factors that led to positive healthcare experiences included having a provider who was knowledgeable about LGBTQ experience and health and who affirmed their sexuality, gender identity, and other intersecting identities. Factors that contributed to negative healthcare experiences included poor interactions with providers, and providers' perceived heteronormativity and lack of awareness of WSW healthcare needs. WSW of different races, ethnicities, sexual orientations, and gender identities seek validating healthcare experiences that acknowledge and affirm their identities. We present a visual summary of the main thematic factors that contributed to positive and negative WSW healthcare experiences. Increasing access to care requires training providers on how to engage WSW patients, including WSW of diverse race/ethnicity and gender identity and expression.

Sexual health counselling by Dutch HIV care providers: A cross-sectional survey among physicians and nurses in the Netherlands.

To improve sexual health among people living with HIV, sexual health should be addressed during consultations in routine HIV care. The aim of the present study was to investigate to what extent Sexual Health Counselling (SHC) is incorporated into routine Dutch HIV care and to explore differences between physicians and nurses in their practices and views regarding SHC. A cross-sectional survey was conducted among all HIV physicians (N=110) and HIV nurses (N=82) in the Netherlands. A questionnaire assessed socio-demographic characteristics, current SHC practice, topics addressed, and factors associated with engaging in SHC. The response rate was 53.6% (N=59) among physicians and 60.0% (N=40) among nurses. SHC was performed by 26.1% of physicians and 83.9% of nurses (Χ² (1) = 27.68, p<.001). The most frequently reported barrier for SHC was the presence of a third party, endorsed by 50.9% of physicians and 60.4% of nurses. Nurses were more likely to address issues related to sexual wellbeing, while physicians mainly discussed medical topics. While, both HIV physicians and nursed felt responsible for providing SHC, nurses were more likely to address SHC that physicians. There is scope for improving SHC for PLHIV through a multidisciplinary approach based on clear guidelines for physicians and nurses.

What constitutes a good healthcare experience for unintended pregnancy? A qualitative study among young people in California.

Little is known about young people's experiences accessing healthcare for unintended pregnancy in the USA. To address this gap, we conducted in-depth interviews with 25 young people in California who had experienced at least one unintended pregnancy at or before 25 years of age. Participants were asked about their interactions with healthcare providers during the pregnancy, their thoughts on the determinants of their perceived quality of care, and the ways in which their healthcare experience could have been improved. Thematic analysis was used to organise information within and across interview transcripts. Two important determinants of participants' satisfaction with their healthcare experience were identified during analysis: (1) receiving comprehensive information about their pregnancy options and what to expect from each, and (2) having an empathetic, non-judgemental provider. Regarding abortion, participants described an unmet need for accurate information and frequent stigmatising experiences with dismissive and judgemental care providers. These findings highlight the importance of providing comprehensive, non-judgemental pregnancy options counselling to all pregnant people, regardless of age and desired pregnancy outcome; and reinforce the need for providers to consider ways in which their own bias may influence the quality of care they provide.

Can patients improve the quality of care they receive? Experimental evidence from Senegal.

Providers in many low and middle-income countries (LMICs) often fail to correctly diagnose and treat their patients, even though they have the clinical knowledge to do so. Against the backdrop of many failed attempts to increase provider effort, this study examines whether quality of care can be improved by encouraging patients to be more active during consultations. We design a simple experiment with undercover standardised patients who randomly vary how much information they disclose about their symptoms. We find that providers are 27% more likely to correctly manage a patient who volunteers several key symptoms of their condition at the start of the consultation, compared to a typical patient who shares less information. Lower performance in the control group is not due to providers' lack of knowledge, an incapacity to ask the right questions, or a response to time or resource constraints. Instead, providers' low motivation seems to limit their ability to adapt their effort to patients' inputs in the consultation. Our findings provide proof-of-concept evidence that interventions making patients more active in their consultations could significantly improve the quality of care in LMICs.

"When Is Health Care Actually Going to Be Care?" The Lived Experience of Family Planning Care Among Young Black Women.

While family planning care (FPC) visits may serve as opportunities to address gaps in knowledge and access to limited resources, young Black women may also face structural barriers (i.e., racism, discrimination, bias) to engaging in care due to the intersections of racial identity, age, and socioeconomic status. Findings from interviews with 22 Black women, ages 18 to 29 years, about the lived experience of FPC highlighted dynamic patient-provider encounters. Women's narratives uncovered the following essences: silence around sex impedes engagement in care, patient-provider racial concordance as protection from harm, providers as a source of discouragement and misinformation, frustration as a normative experience, decision making excludes discussion and deliberation, medical mistrust is pervasive and a part of Black consciousness, and meaningful and empathic patient-provider encounters are elusive. Health systems should prioritize developing and enhancing young Black women's relationship with FPC providers to help mitigate persistent inequities that perpetuate disadvantage among this population.

Enacting power and constructing gender in cervical cancer screening encounters between transmasculine patients and health care providers.

Transmasculine people are at risk of cervical cancer but have lower rates of cervical cancer screening than cisgender women. Disaffirmation of the patient's gender and unequal power dynamics between patient and provider during screening contribute to patient unwillingness to be screened. The mechanisms by which the balance of power may be shifted between patient and provider, and by which gender is constructed during the Pap test, are not well understood. A qualitative study using a modified grounded theory approach was undertaken to analyse patient interview and provider interview and focus group data pertaining to power and gender in the context of cervical cancer screening among transmasculine individuals. The study was conducted at an LGBTQ-focussed health centre in Boston, USA. Processes by which power is enacted included constraining or affirming patient choice, mitigating or exacerbating vulnerability, and self-advocacy. Gendering processes included naming patients and their bodies, invoking gender norms, de-gendering/re-gendering Pap tests, and othering or normalising trans bodies. The interplay between these processes promotes or constrains patient agency over body and health, impacting patient care, patient-provider interaction, and service utilisation. Understanding patient and provider roles in power and gender dynamics are critical for the provision of patient-centred care.

Content and system development of a digital patient-provider communication tool to support shared decision making in chronic health care: InvolveMe.

BACKGROUND: Chronic conditions present major health problems, affecting an increasing number of individuals who experience a variety of symptoms that impact their health related quality of life. Digital tools can be of support in chronic conditions, potentially improving patient-provider communication, promoting shared decision making for treatment and care, and possibly even improving patient outcomes. This study aimed to develop a digital tool for patient-provider communication in chronic health care settings and describes the data collection and subsequent content and software development of the InvolveMe tool. InvolveMe will provide patients with the opportunity to report symptoms and preferences to their health care providers (HCP), and to use secure messaging to interact with the HCPs. METHOD: The study employed a combination of interviews with patients with chronic conditions and focus groups with HCPs, examining experiences with chronic conditions and the potential use of a digital tool for support. Participants were recruited from two outpatient clinics at a university hospital. Data collected from interviews and focus groups were analysed using thematic analysis. Content and software development was informed by the data collection and by tool development workshops. RESULTS: Analyses from interviews with patients (n = 14) and focus groups with HCPs (n = 11) generated three main themes: 1) Making symptoms and challenges visible, 2) Mastering a new life, and 3) Digital opportunities for follow-up. Each main theme generated separate subthemes. Theme 1 and 2 gave input for content development of the symptom and needs assessment part of the tool, while theme 3 provided ideas for the software development of the InvolveMe tool. Tool development workshops with patients (n = 6) and HCPs (n = 6) supplemented the development. CONCLUSIONS: A digital tool such as InvolveMe has the potential to support shared decision making for patients with chronic health conditions. Through integration with an existing patient portal such a tool can provide opportunities for meaningful interactions and communication between patients and HCP's, particularly with regards to symptoms, needs and preferences for care.

Evaluation of a Conceptual Model Regarding Exercise Promotion Through the Patient-Provider Interaction in Multiple Sclerosis: Health Care Provider Perspectives.

Nearly 80% of persons with multiple sclerosis (MS) do not engage in sufficient amounts of exercise for managing symptoms and improving quality of life. We have addressed this problem by developing a systematic line of qualitative research targeting the patient-provider interaction for promotion of exercise within comprehensive MS care. This research resulted in a conceptual model that guides health care providers in promoting exercise among persons with MS. The current study involves a final evaluation of the model based on semistructured interviews with 28 MS health care providers. Providers perceived that the model was a strong conceptualization of practice that reflected the MS illness course and supported exercise behavior change, but more steps were required to translate the model from concept into practice, including improved clarity of the model, and the development of practice models. The evaluation yielded a final conceptual model for exercise promotion in MS through the patient-provider interaction.

Accessing health care: Experiences of South Asian ethnic minority women in Hong Kong.

The aim of the present qualitative study was to understand the experiences of South Asian ethnic minority women in accessing health-care services in Hong Kong, a Chinese-oriented society. Levesque's framework (2013) was adopted to conduct and analyze focus group discussions among 30 South Asian women aged between 21 and 72 years, who came from India, Nepal, and Pakistan. The overarching theme was identified as disengagement between South Asian women and the health-care system, with the following five themes: attitude and awareness, sociocultural factors, time constraints, financial burdens, and inadequate interaction. These were linked to barriers affecting South Asian women's ability to access health care, the common challenges encountered being those related to language, culture, and communication. Lengthy waiting periods discourage these women from seeking health care in Hong Kong. Enhancing accessibility to appropriate health-care-related information and culturally-informed patient-provider interaction can improve knowledge, trust, and satisfaction among these women, thereby enhancing their engagement with the health-care system.

Patients' perspectives of acceptability of ART, TB and maternal health services in a subdistrict of Johannesburg, South Africa.

BACKGROUND: The field of acceptability of health services is emerging and growing in coherence. But there are gaps, including relatively little integration of elements of acceptability. This study attempted to analyse collectively three elements of acceptability namely: patient-provider, patient-service organisation and patient-community interactions. METHODS: Mixed methods were used to analyse secondary data collected as part of the Researching Equity in Access to Health Care (REACH) study of access to tuberculosis (TB) treatment, antiretroviral therapy (ART) and maternal health (MH) services in South Africa's public health sector. RESULTS: Provider acceptability was consistently high across all the three tracer services at 97.6% (ART), 96.6% (TB) and 96.4% (MH). Service acceptability was high only for TB tracer (70.1%). Community acceptability was high for both TB (83.6%) and MH (96.8%) tracers. CONCLUSION: Through mixed methods, this paper provides a nuanced view of acceptability of health services.

Healthcare barriers and supports for American Indian women with cancer.

Although American Indian (AI) women continue to experience cancer at higher rates and have not seen the same decline in cancer prevalence as the general U.S. population, little research examines how interactions with health care providers may influence and exacerbate these health disparities. The purpose of the study was to understand the experiences of AI women who receive cancer treatment, which is integral for eradication of AI cancer disparities among women. A qualitative descriptive methodology was used with a sample of 43 AI women with breast, cervical, colon, and other types of cancer from the Northern Plains region of South Dakota. Interviews were conducted from June 2014 to February 2015. Qualitative content analysis revealed that women experienced: (a) health concerns being ignored or overlooked; (b) lack of consistent and qualified providers; (c) inadequate healthcare infrastructure; (d) sub-optimal patient-healthcare provider relationships; (e) positive experiences with healthcare providers; and (f) pressure and misinformation about treatment. Results indicate the types of support AI women may need when accessing healthcare. Culturally informed trainings for healthcare professionals may be needed to provide high-quality and sensitive care for AI women who have cancer, and to support those providers already providing proper care.

What do young Australian women want (when talking to doctors about contraception)?

BACKGROUND: Access to most contraceptives in Australia requires a prescription from a doctor, and it has been shown that doctors can influence women's decision-making with respect to contraception. However, little research has documented how women experience their interactions with doctors within the context of a contraceptive consultation. Understanding such experiences may contribute to our knowledge of factors that may influence women's contraceptive decisions more broadly. METHODS: We report on findings from the Contraceptive Use, Pregnancy Intentions and Decisions (CUPID) survey of young Australian women, a large-scale longitudinal study of 3,795 women aged 18-23 years. We performed a computer-assisted search for occurrences of words that indicated an interaction within the 1,038 responses to an open-ended question about contraception and pregnancy. We then applied a combination of conventional and summative content analysis techniques to the 158 comments where women mentioned an interaction about contraception with a doctor. RESULTS: Our analysis showed that women desire consistent and accurate contraception information from doctors, in addition to information about options other than the oral contraceptive pill. Some young women reported frustrations about the choice limitations imposed by doctors, perceived by these women to be due to their young age. Several women expressed disappointment that their doctor did not fully discuss the potential side-effects of contraceptives with them, and that doctors made assumptions about the woman's reasons for seeking contraception. Some women described discomfort in having contraception-related discussions, and some perceived their doctor to be unsupportive or judgmental. CONCLUSIONS: Both the content and the process of a contraceptive consultation are important to young Australian women, and may be relevant contributors to their choice and ongoing use of a contraceptive method. These findings provide useful insights into aspects of the patient-provider interaction that will enhance the efficacy of the contraceptive consultation. It is recommended that doctors adopt patient-centred, shared decision-making strategies to support women in making choices about contraception that suit their individual circumstances. We also acknowledge the need to involve other health care providers, other than doctors, in educating, informing, and assisting women to make the best contraceptive choice for themselves.

From intention to STI prevention: An online questionnaire on barriers and facilitators for discussing sexual risk behaviour among HIV nurses.

AIMS: We aimed to elucidate facilitators and barriers that HIV nurses experience in discussing sexual risk behaviour with HIV-positive men who have sex with men, using variables from a previous qualitative study and the theory of planned behaviour. BACKGROUND: HIV-positive men who have sex with men are frequently diagnosed with sexually transmitted infections, which can be reduced if HIV nurses discuss sexual risk behaviour. DESIGN: An online questionnaire was disseminated in April 2015 among all HIV nurses in the Netherlands. METHODS: We assessed variables, such as attitudes, shame, ability, knowledge and time concerns. A regression analysis was conducted with "intention to discuss sexual risk behaviour" as an outcome variable. RESULTS: The questionnaire was completed by 60 of 79 HIV nurses. Overall, participants reported high intentions to discuss sexual risk behaviour, and 38% of the variance was explained by attitude, sexual preference, knowing ways to introduce the topic and experiencing enough time or viewing it as a priority. In addition, high intenders significantly differed from low intenders in "experienced shame," "relation with patients," "non-verbal communication," "subjective norm" and "knowledge." CONCLUSION: Improving sexual health in HIV care translates into improving opportunities and the facilitating factors in initiating the discussion of sexual risk behaviour rather than removing barriers HIV nurses experience. Interventions should mainly focus on improving the HIV nurses' perceived ability to initiate the topic of sexual risk behaviour and to utilize the jargon and terminology that is commonly used among men who have sex with men.

Communication during haematological consultations; patients' preferences and professionals' performances.

Many patients with haematological malignancies experience barriers in clinical communication. Reaching effective communication is of great importance as it has been linked to a range of improved patient outcomes such as satisfaction, compliance to treatment, perceived quality of life and physical and mental health. To get a better understanding how communication in haematological consultations can be improved, the current study focussed on patients' preferences and perceived performances regarding the communicative behaviour of their health care professional. Secondly, the mediation of an online communication tool for patients was analysed. Within a controlled pre- post-test design, 78 datasets of clinical consultations could be analysed. Patients considered both affective and instrumental communication aspects important. The affective communication behaviour of the health care professional met the patients' pre-visit preferences well. In the information exchange, more variability and discrepancies were found. Overall, the online intervention did not seem to influence the patients' perceived communication performance of their health care professional much. To further improve the communication during clinical consultations, health care professionals should inquire about patients' expectations, especially during the exchange of information and advices. At the same time, patients should be supported to express their preferences at the start of the consultation. The study was registered in the Netherlands Trial Register, number 3779.

Patient-provider interaction, patient satisfaction, and health outcomes: testing explanatory models for people living with HIV/AIDS.

In the era of highly active antiretroviral therapy era, medication adherence and health-related quality of life (HRQOL) have become critical issues for people living with HIV/AIDS (PLWH). The purpose of this study was to test explanatory models of how patient-provider interaction and patient satisfaction are related to medication adherence and HRQOL for PLWH. A total of 344 PLWH receiving health-care services from a federally funded clinic in the southwest USA completed a survey questionnaire about their perception of interactions with providers, their satisfaction with services, their medication adherence, and their HRQOL. Comparing four latent variable structural equation models of direct and mediated effects of patient-provider interaction and patient satisfaction, the findings illustrate that the best model is one in which patient-provider interaction has a direct and positive effect on patient satisfaction, medication adherence, and HRQOL. These findings suggest that quality patient-provider interaction is a critical element of health-care services for PLWH, while patient satisfaction is an outcome measure and not a mediating factor for medication adherence and HRQOL.

Patients' experiences from symptom onset to initial treatment for atrial fibrillation.

AIMS AND OBJECTIVES: To describe patients' experiences from symptom onset to initial treatment for atrial fibrillation. BACKGROUND: The estimated number of individuals with atrial fibrillation globally in 2010 was 33·5 million. World-wide, each year, new cases of atrial fibrillation approach 5 million, and prevalence will increase 2·5-fold by 2050. As a result, clinicians worldwide will treat a growing number of patients with atrial fibrillation. Early intervention to promote atrial fibrillation self-management is critical to reduce associated complications of stroke and heart failure. Greater understanding of patients' experiences from symptom onset to initial treatment for atrial fibrillation is needed to guide development of interventions to promote early effective self-management. DESIGN: A descriptive qualitative design was used. METHODS: Twenty females and 21 males at an academic medical centre were interviewed using open-ended questions to explore their experiences from symptom onset to initial treatment for atrial fibrillation. Data were analysed using qualitative content analysis. RESULTS: Participants' mean age was 64·3 (SD = 10·1) years. Four themes were identified: (1) misinterpreting symptoms; (2) discovering the meaning of atrial fibrillation; (3) facing fears, uncertainty, and moving to acceptance; and (4) receiving validation and reassurance. Participants lacked knowledge of atrial fibrillation and took cues from providers' responses to appraise symptoms and diagnosis. Fear and uncertainty were reduced when providers initiated prompt treatment and took time to explain atrial fibrillation. Patients appreciated receiving clear information about atrial fibrillation, were engaged in learning, and motivated to participate in their care. CONCLUSIONS: Providers played a critical role in helping patients to develop an accurate understanding of atrial fibrillation, to cope with the new diagnosis, and motivated them to engage in effective self-management. RELEVANCE TO CLINICAL PRACTICE: Insight into participant experiences from symptom onset to initial treatment for atrial fibrillation may inform development of interventions to promote effective atrial fibrillation self-management.

Questions to promote child-centered care in racially discordant interactions in pediatric oncology.

OBJECTIVE: To examine questioning practices in racially discordant interactions and describe how these practices engendered child-centered care. METHODS: We used applied conversation analysis to analyze a collection of 300 questions directed to children across 10 cases involving children of color and their families in disease reevaluation appointments in pediatric oncology. RESULTS: Our analysis generated two patterns: 1) both the pediatric oncologists' and caregivers built upon one another's talk to enable the child's conversational turn, and 2) the oncologists' reformulated requests as questions to invite the child's permission and cooperation for completing exams and understanding symptoms. CONCLUSION: Children, pediatric oncologists, and caregivers coordinated their actions to enable children to participate as recipients of and respondents to questions. The analysis of real-time interactions illuminates practices for centering children in clinical encounters and the benefits of doing so. PRACTICAL IMPLICATIONS: This study's findings have implications for defining competencies and practices for fostering child-centered communication, creating training materials based on real-time encounters, and identifying strategies for humanizing pediatric patient experiences.

Healthcare providers' narratives about interactionally troubling patient exchanges: Accounting for and against an active patient role.

The current trend in healthcare is to actively involve patients in their own treatment; however, in practice, healthcare providers may adhere to paternalistic views, which may not align with ideals related to patient involvement. This tension may become visible when providers talk about service encounters that they experienced as being interactionally troubling. In this empirical qualitative study, we utilize Bamberg's narrative positioning analysis to explore how healthcare providers construct patients' roles in narratives about such troubling exchanges. Data consist of 20 audio-recorded interviews with healthcare providers. We found two types of narratives in which healthcare providers' perceptions of interactionally troubling patient exchanges were consistently related to their implicit evaluations of patients along a continuum of activeness versus passiveness. In the first, an active patient was considered ideal, and the problematic patient was one who is passive. In the second, a patient's over-activeness was thought to interfere with the healthcare delivery. While providers' complaints about patient passiveness were unproblematically presented from the perspective of the patient participation ideal, complaints about patient over-activeness were difficult to account for due to their inherent connotations with paternalism. Thus, we conclude that there is a need for training and interventions aiming to develop healthcare providers' critical awareness of shifting cultural models, including patient involvement ideals and providers' capacity to reflect paternalistic tendencies.

Health Communication Preferences of Transgender and Gender-Diverse Individuals - Development and First Psychometric Evaluation of the CommTrans Questionnaire.

Patient-doctor communication is an important component of patient-centered care and should be adapted to the target group. Adapting communication to transgender and gender-diverse individuals is particularly difficult, as little is known about the preferences of this group. Thus, the aim of the study was to develop a questionnaire to assess the communication preferences of the target group. Based on a qualitative study, an item pool was created, which was tested in a survey in September 2022. An item analysis was conducted and items with unacceptable characteristics were removed. The remaining item pool was examined with an explorative factor analysis. The sample consisted of N = 264 individuals. Of the initial k = 43 items, k = 9 items remained in the final factor analysis. The final two factor solution explained 60.7% of the variance. The factors describe the emotional resonance in communication (Cronbach's α = .74; e.g. "My medical doctors should be happy for me when my treatment progresses positively.") as well as gender-related communication (Cronbach's α = .85; e.g. "My medical doctors should introduce themselves with pronouns."). Overall, the questionnaire captures the communication preferences of transgender and gender-diverse individuals in medical conversations. It covers two important topics for the target group, but further validation is necessary.