Urology HEIRS: A Feasibility and Acceptability Study for Video-Based Research on Physician-Family Communication in Pediatric Urology Visits.

PURPOSE: Patient- and family-centered communication is essential to healthcare equity. However, less is known about how urologists implement evidence-based communication and dynamics involved in caring for diverse pediatric patients and caregivers. We sought to evaluate the feasibility and acceptability using video-based research to characterize physician-family communication in pediatric urology. MATERIALS AND METHODS: We assembled a multidisciplinary team to conduct a multi-phase learning health systems project to establish the Urology HEIRS (Health Experiences and Interactions in Real-time Studies) corpus for research and interventions. This paper reports the first phase, evaluating feasibility and acceptability based on consent rate, patient diversity, and qualitative identification of verbal and paraverbal features of physician-family communication. We used applied conversation analysis methodology to identify salient practices across eight pediatric urologists. RESULTS: We recruited 111 families at two clinic sites, of these 82 families (N = 85 patients, ages 0-20) participated in the study with a consent rate of 73.9%. The racial/ethnic composition of the sample was 45.9% non-Hispanic White, 30.6% any race of Hispanic origin, 16.5% non-Hispanic Black/African American, 4.7% any ethnicity of Asian/Asian American, 2.3% some other race/ethnicity, and 24.7% of families used interpreters. We identified 11 verbal and paraverbal communication practices that impacted physician-family dynamics, including unique challenges with technology-mediated interpreters. CONCLUSIONS: Video-based research is feasible and acceptable with diverse families in pediatric urology settings. The Urology HEIRS corpus will enable future systematic studies of physician-family communication in pediatric urology and provides an empirical basis for specialty-specific training in patient- and family-centered communication.

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.

How student healthcare providers in a communication skills course respond to standardized patient resistance.

Encountering and responding to patient resistance can be especially challenging for student healthcare providers. Navigating who ultimately holds the authority to know and understand a health concern, make recommendations for a course of action, and accept or resist these recommendations are all part of how epistemic authority is negotiated in medical settings. The purpose of this paper is to systematically examine how student providers enrolled in a communication skills course at an American university responded to standardized patient resistance. The data for this study were 121 video-recorded and transcribed final objective structured clinical examinations from the fall 2019 course. We used discourse analysis informed by principles of conversation analysis to identify several discursive strategies used by the students, including: 1) asking for clarification; 2) expressing uncertainty and offering to gather additional resources; 3) aligning with and offering an account for the resistance; 4) recommending a new course of action; and 5) confronting the resistance. Our findings point to the value of including instruction for both student healthcare providers and standardized patients on how to respond to resistance they encounter in ways that may help improve healthcare outcomes.

The lived experiences of rural HIV social workers.

HIV service providers are the primary implementers of HIV care services, but rural HIV service providers are under researched. We used an interpretative phenomenological analysis to explore rural HIV service providers' lived experiences of working in HIV care, who work in a rural region of a Midwestern state in the United States. From July to August 2019, 15 HIV service providers participated in a one-hour semi-structured telephone interview that elicited their experiences working in the rural HIV care continuum. Participants were tired of constantly educating and working to reduce HIV stigma; however, they received support from family and friends once they educated them about HIV. Participants felt they lacked control over systems and they developed emotional-based coping to address constant occupational stressors. Findings highlight the importance of resiliency and advocacy research and practice across ecological levels.

Soliciting children's views on other-perspectives in child mental health assessments.

Child mental health assessments are complex and involve the analysis of data from multiple sources to inform treatment decisions. Question sequences are central to mental health assessments; however, little research has examined the functions of questions in child mental health interactions, particularly questions that aim to elicit information from children that might be used to inform diagnosis and treatment. In this study, we utilize a large corpus of video-recorded child mental health assessments to examine the use and function of a particular kind of wh-question-circular questions-that is, questions that seek clients' views on other family members' feelings, actions, and thoughts. Using conversation analysis, we identified three "broad" functions of circular questions in child mental health assessment. Our findings provide clinicians with clinically relevant examples for using circular questions to more fully involve children in the assessment process and acquire valuable information for diagnosis.

Avoiding Ableist Language: Suggestions for Autism Researchers.

In this commentary, we describe how language used to communicate about autism within much of autism research can reflect and perpetuate ableist ideologies (i.e., beliefs and practices that discriminate against people with disabilities), whether or not researchers intend to have such effects. Drawing largely from autistic scholarship on this subject, along with research and theory from disability studies and discourse analysis, we define ableism and its realization in linguistic practices, provide a historical overview of ableist language used to describe autism, and review calls from autistic researchers and laypeople to adopt alternative ways of speaking and writing. Finally, we provide several specific avenues to aid autism researchers in reflecting on and adjusting their language choices. Lay summary: Why is this topic important?: In the past, autism research has mostly been conducted by nonautistic people, and researchers have described autism as something bad that should be fixed. Describing autism in this way has negative effects on how society views and treats autistic people and may even negatively affect how autistic people view themselves. Despite recent positive changes in how researchers write and speak about autism, "ableist" language is still used. Ableist language refers to language that assumes disabled people are inferior to nondisabled people.What is the purpose of this article?: We wrote this article to describe how ableism influences the way autism is often described in research. We also give autism researchers strategies for avoiding ableist language in their future work.What is the perspective of the authors?: We believe that ableism is a "system of discrimination," which means that it influences how people talk about and perceive autism whether or not they are aware of it, and regardless of whether or not they actually believe that autistic people are inferior to nonautistic people. We also believe that language choices are part of what perpetuates this system. Because of this, researchers need to take special care to determine whether their language choices reflect ableism and take steps to use language that is not ableist.What is already known about this topic?: Autistic adults (including researchers and nonresearchers) have been writing and speaking about ableist language for several decades, but nonautistic autism researchers may not be aware of this work. We have compiled this material and summarized it for autism researchers.What do the authors recommend?: We recommend that researchers understand what ableism is, reflect on the language they use in their written and spoken work, and use nonableist language alternatives to describe autism and autistic people. For example, many autistic people find terms such as "special interests" and "special needs" patronizing; these terms could be replaced with "focused interests" and descriptions of autistic people's specific needs. Medicalized/deficit language such as "at risk for autism" should be replaced by more neutral terms such as "increased likelihood of autism." Finally, ways of speaking about autism that are not restricted to particular terms but still contribute to marginalization, such as discussion about the "economic burden of autism," should be replaced with discourses that center the impacts of social arrangements on autistic people.How will these recommendations help autistic people now or in the future?: Language is a powerful means for shaping how people view autism. If researchers take steps to avoid ableist language, researchers, service providers, and society at large may become more accepting and accommodating of autistic people.

Assessing determinants of pre-exposure prophylaxis (PrEP) adherence among a sample of rural Midwestern men who have sex with men (MSM).

Pre-exposure prophylaxis (PrEP) efficacy in preventing HIV among gay, bisexual, and other men who have sex with men (MSM) is dependent upon adherence. Little is known about the PrEP adherence experiences among MSM who live in rural areas of the US. This qualitative study was informed by a modified version of Straussian Grounded Theory. Thirty-four 34 rural Midwestern MSM participated in telephone interviews that assessed their PrEP adherence factors. Overall, participants adhered to the PrEP regimen, ranging from missing none to a couple of doses per month. Participants had high self-efficacy (competence) and self-reliance (autonomy) in taking PrEP daily. Participants incorporated PrEP into their already existing routines. Participants were motivated to adhere to prevent HIV acquisition and be financially responsible. All participants mentioned their PrEP provider discussed the importance of adherence with PrEP's effectiveness, but future patient-provider PrEP adherence communication varied among participants. Future PrEP adherence interventions should address counseling strategies that leverage these constructs to support pill taking. Future research should explore patient-provider conversations surrounding PrEP adherence to inform provider- and patient-level interventions.

Facilitators and Barriers of Pre-exposure Prophylaxis (PrEP) Uptake Among Rural Men who have Sex with Men Living in the Midwestern U.S.

Facilitators and barriers of Pre-exposure Prophylaxis (PrEP) uptake have been established in prior studies; however, most of these studies comprise samples of MSM from metropolitan cities and hypothetical PrEP use. There is a dearth of literature on the uptake factors among rural U.S. MSM who are prescribed PrEP. Thirty-four rural Midwestern MSM who currently take PrEP participated in semi-structured telephone interviews about their barriers and facilitators to their PrEP use. Interviews were analyzed using an inductive thematic analysis approach. There were four barriers: (1) lack of rural dissemination of PrEP information, (2) concern about side and adverse effects of using PrEP, (3) cost of PrEP uptake and engagement, and (4) lack of access to PrEP care and PrEP care quality. Individual and social facilitators that participants utilized to overcome these barriers are discussed. Findings elevate the importance of multilevel interventions that address PrEP adoption from a patient, provider, and healthcare system perspective.

Exploring the Pre-exposure Prophylaxis (PrEP) Health Care Experiences Among Men Who Have Sex With Men (MSM) Who Live in Rural Areas of the Midwest.

Most pre-exposure prophylaxis (PrEP) research samples men who have sex with men (MSM) who live in metropolitan cities. There is a limited understanding of the PrEP experiences among rural MSM. Thirty-four semi-structured interviews were conducted to explore the PrEP health care experiences among 34 rural Midwestern MSM. Of the 34 participants, 23 obtained PrEP from their non-primary care provider (PCP). Three themes were present: (1) PrEP is unavailable in rural areas, (2) PrEP is inaccessible in rural areas due to PCPs being unwilling to prescribe PrEP, and (3) PrEP services are unamicable in rural areas due to stigmatizing attitudes and behaviors of PCPs. It is important to address PrEP care continuum factors in all settings; however, these factors are often exacerbated in rural areas due to social determinants. Without further research and programming, organizational and social determinants may contribute to lower rates of PrEP outcomes in rural areas.

Challenges and contributors to self-efficacy for caregivers of toddlers with autism.

LAY ABSTRACT: Parent-participatory early intervention practices are linked to parents' positive views of their own and their children's capabilities, beliefs that are associated with a range of parent and child outcomes. A qualitative study was conducted with 11 mothers of toddlers with autism who had experience with both professionally directed and parent-mediated early intervention. Participants were interviewed to explore their perspectives on their roles in relation to professionals and on how they viewed their ability to support their toddlers' social learning. An in-depth analysis of the transcribed interviews resulted in four themes. First, in the early stages, participants experienced challenges to their self-efficacy as they adjusted to the diagnosis and reached to connect with their child when social challenges emerged. Second, participants' views of their capability were stronger when they were provided with background knowledge enabling them to take the lead in guiding their children's learning than when professionals modeled predetermined intervention strategies for them to copy. Third, participants provided specific examples of their expertise to support their toddlers' social learning and viewed their close parent-child relationship and intimate knowledge of their children as valuable to the intervention. Fourth, participants voiced respect for their toddlers' natures and preferences, positioning them to build on their toddlers' strengths in everyday interactions. The results support the need for early intervention providers to promote and leverage family capacity for facilitating toddler learning as social challenges begin to appear for toddlers with autism.

Parents' constructions of normality and pathology in child mental health assessments.

Central to a contemporary understanding of childhood is the developmental and clinical-medical construct of the 'normal' child. When judged to fall outside of culturally, socially and historically situated parameters of 'normality', children become labelled as 'deviant from the norm'; for instance, in mental health contexts where this may provide the basis for psychiatric diagnosis. However, judgements of a child's 'normality' are further complicated by the range of individuals who may have a stake in that construction, including parents/carers, professionals and the child themselves. Using discursive psychology, we analysed 28 video-recorded UK child mental health assessments, to examine ways that parents presented concerns about their children's development. They did this by drawing on notions of 'ab/normal', in ways that functioned to legitimise their need for services and built a rhetorical case to demonstrate clinical need; often by contrasting the child with other 'typical' children and/or contrasting the same child's behaviour in different settings or contexts. We concluded that given the growing crisis in child mental health, initial assessments play a crucial clinical role in determining diagnosis and labelling, and therefore, a critical discussion of these concepts and processes is essential.

Agenda setting with children using the 'three wishes' technique.

The National Health Service (UK) offers initial screening appointments for children referred to child and adolescent mental health services to determine clinical need and assess risk. Conversation analysis was utilized on 28 video recordings of these assessments, lasting approximately 90 minutes each with a multidisciplinary team. This article focuses on the agenda setting strategies used to establish relevant goals with children and adolescents; specifically, the technique of offering 'three wishes'. For example, ' if you had three wishes, what would you like to make happen?' In cases where children initially volunteered an assessment-relevant wish, they tended not to articulate further wishes. Non-assessment-relevant wishes (i.e. fantasy wishes, such as being 'rich') were treated as insufficient, with many approaches used to realign establishing assessment relevant goals. Where responses were not institutionally relevant, practitioners undertook considerable discursive work to realign the focus of the three wishes task to assessment relevance. In these cases, the wish responses were treated as irrelevant and tended to be dismissed, rather than explored for further detail. Such work with the children's contributions has implications for engaging children and child-centred practices.

Discursive psychology as a method of analysis for the study of couple and family therapy.

The field of couple and family therapy has benefitted from evidence generated from qualitative approaches. Evidence developed from approaches relying on language and social interaction using naturally occurring recordings of real-world practice has the benefit of facilitating practice-based recommendations and informing practice. The aim of this article is to provide an overview of one approach to discourse analysis, Discursive Psychology (DP), demonstrating how a social constructionist framework and focus on discourse can provide an important contribution to the field of therapy. To illustrate the methodological decision-making process for researchers and/or practitioners who utilize DP, we draw upon a video-recorded therapeutic session involving Tom Andersen. To conclude, we make recommendations for practitioners using DP to explore and examine therapeutic practice.

Children's claims to knowledge regarding their mental health experiences and practitioners' negotiation of the problem.

OBJECTIVE: The objective was to identify how children's knowledge positions were negotiated in child mental health assessments and how this was managed by the different parties. METHODS: The child psychiatry data consisted of 28 video-recorded assessments. A conversation analysis was undertaken to examine the interactional detail between the children, parents, and practitioners. RESULTS: The findings indicated that claims to knowledge were managed in three ways. First, practitioners positioned children as 'experts' on their own health and this was sometimes accepted. Second, some children resisted this epistemic position, claiming not to have the relevant knowledge. Third, some children's claims to knowledge were negotiated and sometimes contested by adult parties who questioned their competence to share relevant information about their lives in accordance with the assessment agenda. CONCLUSION: Through question design, the practitioner was able to position the child as holding relevant knowledge regarding their situation. The child was able to take up this position or resist it in various ways. PRACTICE IMPLICATIONS: This has important implications for debates regarding children's competence to contribute to mental health interventions. Children are often treated as agents with limited knowledge, yet in the mental health assessment they are directly questioned about their own lives.

Separating 'emotion' from 'the science': Exploring the perceived value of information for parents and families of children with autistic spectrum disorder.

Autistic spectrum disorder (ASD) is a life-long condition. In recent years, there has been a rise in the number of children diagnosed with ASD and a greater recognition that parents need clear, accessible information communicated through different modalities. The objective of this research was to explore the views of stakeholders regarding their information needs, current information modalities and the perceived barriers and complexities of information. Three focus groups with the same stakeholders were conducted with a range of individuals from a variety of backgrounds, all of whom had a personal and/or professional interest in ASD. The same stakeholders were included in all three groups to promote depth of analysis and to facilitate rapport. All focus groups were audio-recorded, transcribed and analysed using thematic analysis. Three main issues were identified, including (1) the value of particular information sources; (2) the vulnerability of families and (3) the need for validated evidence. It was concluded, therefore, that information should be available through a multitude of modalities, accounting for the educational ability and economic status of families. The information should also be communicated in an accessible style, should be presented as trustworthy and clinical professionals may play a key role in translating information. Such information also needs to account for practical problems inherent to having a child with ASD, including time constraints and fatigue.

Autism itself actually isn't a disability': Negotiating a 'normal' versus 'abnormal' autistic identity.

The opposing positions of the social model of disability and the biomedical framework of impairment have created tensions regarding what constitutes 'normality'. In this article, we drew upon focus group data of parents, professionals, and people with autism, to explore how the dilemmatic tensions of normality and abnormality and of disability and ability were managed. Our findings illustrate how the boundaries of normality in relation to autism are blurred, as well as how the autistic identity is fluid. The members of the focus group invoked their epistemic rights to assert their positions and delicately considered the limitations of the rhetoric of cure. Our findings have implications for professionals working with families of children with autism, specifically as they aim to maintain a balance between providing sufficient support and not being intrusive, and we show how a medical sociology can facilitate an understanding of autism as a social category.

Reorganizing the system of care surrounding laparoscopic surgery: a cost-effectiveness analysis using discrete-event simulation.

PURPOSE: To determine the cost-effectiveness of a proposed reorganization of surgical and anesthesia care to balance patient volume and safety. METHODS: Discrete-event simulation methods were used to compare current surgical practice with a new modular system in which patient care is handed off between 2 anesthesiologists. A health care system's perspective, using hospital and professional costs, was chosen for the cost-effectiveness analysis. Outcomes were patient throughput, flow time, wait time, and resource use. Sensitivity analyses were performed on staffing levels, mortality rates, process times, and scheduled patient volume. RESULTS: The new strategy was more effective (average 4.41 patients/d [median = 5] v. 4.29 [median = 4]) and had similar costs (average cost/ patient/d = 5327 dollars v. 5289 dollars) to the current strategy with an incremental cost-effectiveness of 318 dollars/additional patient treated/d. Surgical mortality rate must be >4% or hand-off delay >15 min before the new strategy is no longer more effective. CONCLUSION: The proposed system is more cost-effective relative to current practice over a wide range of mortality rates, hand-off times, and scheduled patient volumes.