Lioness Ayres

Families who raise children with genetic conditions manage health care within the context of cultural communities. For Amish families, although genetic conditions are prevalent and have been well reported, few studies document family management of these conditions. This article describes Amish family management strategies in light of the Family Management Framework’s contextual factors. Ethnographic data captured variations in perspectives from Amish families with children with diverse genetic conditions, Amish community members, and health care providers. Findings describe families at the center of decision making and health care management for children with genetic conditions, utilizing health care professionals and their surrounding Amish community members as resources. Amish families’ management strategies lie across a spectrum from home-oriented to medical-oriented, and this spectrum is elaborated in the findings and discussion of this article.

Road hazards have been threatening drivers’ safety. Drivers should perceive road hazards in order to reduce or eliminate risks (Shinar, 2007a). Hazard perception is a cognitive ability which can be improved through practice (Mark S. Horswill, Hill, & Wetton, 2015). Failures in hazard perception can cause adversities (Spainhour, Brill, John Sobanjo, Jerry Wekezer, & Primus Mtenga, 2005). Hence, understanding the cognitive process of hazard perception is important for improving drivers’ reactions and creating human-like autonomous systems.While there is no agreement among researchers about the concept of hazard perception (Baars, 1993; Mica R. Endsley, 1995b; Flach, 1994), most accepted views describe hazard perception as a process (Banbury, 2017). One of the predominant cognitive theories which describes hazard perception as a process is Neisser’s action-perception (Neisser, 1987). Neisser’s model relates hazard perception to mental map of the world and includes limitations of drivers’ memories. The action-perception model alongside other dominant hazard perception theories which describe the phenomenon can only be valid if drivers have mental models of hazards (Mica R. Endsley, 2000). Mental models which can facilitate the hazard perception process cannot be described by dominant theories that describe mental models as cognitive structural and functional models (Preece et al., 1994) In fact, the mental model which can be used for hazard perception and risk anticipation should explain how hazard can fail a traffic system and cause crash. Thus, the first experiment explores the existence of such a mental model by using Schema World Action Research Method (SWARM) cognitive probes. The result proves the existence of subjective mental models of hazards.Mental models are subjective, and drivers can have different preference of actions to a hazard accordingly. Automation of driving requires drivers to monitor the Autonomous vehicles (AVs) behaviors and takeover the control when needed (Banks & Stanton, 2017). For a successful monitoring of AVs drivers should build an appropriate level of trust in systems according to systems reliability (Lee & See, 2004). AVs should produce acceptable results to be considered reliable and drivers should develop accurate mental models of AVs actions and limitations (Walliser, 2011). Drivers will evaluate systems actions by their subjective mental models including mental models of hazards. However, AVs are designed by their designers and have limitations in replicating human-like reactions to hazards (Don Norman, 2016). The second experiment investigates how discrepancies between design models of AVs and drivers’ mental models including mental models of hazards can influence drivers’ trust in automation. In this part, naturalistic method and a Tesla S is used and participants are interviewed after five days of driving by using advanced automated systems. Results show that drivers use their mental models of hazards to predict hazardous scenarios and takeover the control before hazards materialize. Additionally, findings reveal how complexity of the system can result in function confusion, mode confusion, and misinterpreting AVs capabilities, which can result in abuse of automated systems. Results reveal that there is a need for adequate training of drivers on autonomous and advanced systems.

BackgroundOne of the most stressful and frightening healthcare experiences for a parent is a cardiorespiratory arrest of their child. Each year, almost 16,000 American children experience cardiorespiratory arrest and attempted resuscitation in hospitals. This experience is traumatic for parents and may lead to a post-traumatic stress response as they fear their child will die or be seriously harmed. Post-traumatic stress response can ultimately lead to deficits in family functioning. There is limited knowledge about the experience of parents during a child’s resuscitation. We do not know how parents respond to a child’s resuscitation or if family functioning is affected after the event. Parent stress and family functioning after a child’s resuscitation has not been studied. While the available research on parents’ experience at their child’s resuscitation in the Emergency Department and Pediatric Intensive Care Unit provides some information, there is a gap in the knowledge about the experience of parents in general pediatric care units and Labor and Delivery areas. In order to develop interventions that support parents’ experience during emergency resuscitation of their child in the hospital setting, it is important to know parents’ experience in all settings where resuscitation of a child happens.ObjectivesThe purpose of this qualitative descriptive study was to elucidate the experiences of parents during their child’s resuscitation and the potential consequences this traumatic event has on parental stress and family functioning after the event.Specific Aim 1: Describe the experiences of parents during the resuscitation of their child in the Emergency Department, Pediatric Intensive Care Unit, General Pediatric Care Unit, Neonatal Intensive Care Unit or Labor and Delivery.Specific Aim 2: Explore parent and family outcomes after parents experience a child’s resuscitation in the Emergency Department, Pediatric Intensive Care Unit, General Pediatric Care Unit, Neonatal Intensive Care Unit or Labor and Delivery by exploring parents’ stress response and family functioning at least one month after the experience using Impact of Events Scale – Revised (IES-R) (post-traumatic stress) and Family Problem Solving and Communication Index (FPSC) (family functioning) and Family Distress Index (FDI) (family functioning).MethodsThe setting for this study was a 280 bed Midwestern children’s hospital Emergency department (ED), Pediatric Intensive Care Unit (PICU), Neonatal Intensive Care Unit (NICU), Labor and Delivery (L&D) and inpatient pediatric units. Participant inclusion criteria were parents or legal guardians, age 18 or older and English speaking whose children experienced resuscitation within the hospital in a variety of settings. Participants included both parents who were present in the room during the resuscitation and those who were not in the child’s room but nearby. For the purpose of this study, resuscitation was defined as any emergency intervention required providing respiratory or cardiovascular support, including positive pressure airway support, ventilation, cardiac compressions and / or emergency medication administration.Qualitative descriptive methodology, using semi-structured qualitative interviews to generate data was used to provide a deeper understanding of the experience of parents while present during their child’s resuscitation. A small collection of quantitative survey data provided additional information about stress reactions of parents and family functioning at least one month after the event. In this study, measures of stress (Impact of Events scale) and family functioning (Family Problem Solving and Communication Index) and Family Distress Index) were assessed at a time between one and twelve months after the resuscitation experience. Analysis was completed with thematic analysis of the qualitative data and descriptive statistics were described for the quantitative data.ResultsParents describe a sense of overwhelming chaos during their child’s resuscitation. However, they have a need to be with their children during this traumatic event. Some parents enter into the experience with an alternate reality, with disbelief that things are as bad as they look. Other parents are thrust abruptly into the experience as they are a participant in the resuscitation that starts outside of the hospital setting. As the experience unfolds, despite the overwhelming, scary experience, parents have identified things that help them get through the experience. Mothers who experience their newborn infant’s resuscitation in the delivery room have a different experience; they feel as though they were physically present, but unable to be a part of the experience. These women describe their unmet expectations.After parents experience their child’s resuscitation, some identify the event as a turning point in their lives that changed them as parents and as a family; some report a new outlook on life or even changed relationships with their significant other. Some parents get to successful resolution of their feelings after the experience, yet others are left feeling anger and resentment. Some parents even wonder if they could have done something different to effect a different outcome. While the outcomes for some parents and families are positive and show that families are stronger after the experience, it is evident that parental post-traumatic stress after a child’s resuscitation, as well as family distress are potential consequences for parents and families after experiencing a child’s resuscitation.ConclusionsA thematic analysis of qualitative data about parents’ experience during their child’s resuscitation resulted in three overarching themes including “Overwhelming chaos”, “Getting through it”, “Cognitive presence” and...

Diagnostic errors cause significant patient harm and occur among 15 percent of all clinical diagnoses, but research has yet to effectively target, prevent, and mitigate diagnostic errors from occurring. So far, literature has examined how diagnostician decision-makers perform and reach a clinical diagnosis individually. However, the impact of team-based activities on diagnosis is unknown. The purpose of this study is to describe provider perception on how providers come together as a team in order to complete a clinical diagnosis. As a qualitative descriptive study with overtones of grounded theory, 18 semi-structured interviews of medical intensive care unit providers were audio-recorded, transcribed, and coded generating themes of diagnostic teamwork structure and functioning. Diagnostic teams are described using themes of inter-professional and intra-professional teamwork among roles with and without diagnostic team identity. Novel approaches to diagnostic error research, practice implications for current providers, and applications provided for improving education and team training. By providing preliminary insights on the role of teamwork in diagnostic decision-making, this study may assist future studies that improve diagnostic teamwork and prevent diagnostic errors.

The purpose of the study was to examine reproductive life planning practices among Title X family planning health care providers and clinical staff. Reproductive life planning is a program priority for Title X clinics, those that receive federal money for providing family planning services to low-income women and men. The goal of reproductive life planning is to decrease unwanted and unintended pregnancies and improve preconception health care however; this practice has not been described. First, a conceptual analysis was conducted to create a definition of reproductive life planning that was consistent with the literature. Reproductive life planning is a process that is centered on reproductive and other life goals and is personalized, collaborative, fluid, and focused on health-promotion. Second, a mixed methods design was used to examine reproductive life planning practices and qualitative interviews were conducted to explore barriers and facilitators to implementing reproductive life planning practices. Data were obtained from health care providers and clinical staff employed at Title X clinics in Illinois, Iowa, Minnesota, Missouri, Nebraska, and North Dakota. A total of 148 clinicians completed a web-based survey which was analyzed to describe which types of patients, the topics covered, and the frequency with which reproductive life planning was discussed during an office visit. Surveys were then examined to identify 20 providers to conduct qualitative interviews with to further explore reproductive life planning practices. The qualitative interviews were also performed to explore the barriers and facilitators clinicians face to practicing reproductive life planning. The results of the web-based questionnaire were examined mainly with medians and frequencies to examine reproductive life planning practices. Qualitative interviews were coded using a content analysis approach to two aims; one to examine how reproductive life planning was using during clinic visits and two, to identify the barriers and facilitators clinicians face when discussing reproductive life planning with patients. Findings from the survey and the interviews suggest that most clinicians are discussing pregnancy intentions with their patients. However, from the interviews, three types of scope of reproductive life planning emerged; those clinicians who screened their patients’ pregnancy intentions, those who planted the seed in the patient’s mind, and those who explored the context of a patient’s life and their goals to contextualize how pregnancy and childbearing would fit into their lives in order to clarify pregnancy intention and move toward the corresponding health behaviors. It is argued that the third group of providers is using reproductive life planning as intended by experts. Finally, barriers to RLP discussions were examined as well as approached providers used to overcome the barriers. In conclusion, many clinicians are practicing reproductive life planning as intended, however many are not. Improved training and protocols are needed to ensure clinicians are providing their patients with the best reproductive life planning discussions. Additionally, systemic structures, like access to quality family planning services, need to be improved to aid clinicians in helping their patient plan their families.

Inadequate cancer pain management is a global problem. The problem is particularly worse in developing countries where the majority of patients present with advanced stages of the disease. Nurses play an important role in cancer pain management because they spend the majority of their time with patients. The purpose of the study was to examine role of unit cultures on cancer pain management practices among nurses in Kenya. A focused ethnography was used to explore cancer pain management practices of two different units (general and private) within the same institution. Data were collected for four months in a national referral hospital in Nairobi, Kenya. Purposive sampling was used to recruit participants. A total of twenty five nurses and fourteen secondary participants (e.g., nurse managers) participated in this study. Data were collected through semi-structured interviews, observations, and document reviews. Content analysis was used to analyze the data. The study findings show that the unit culture plays a role in cancer pain management practices. For instance, nurses on the oncology unit prioritize pain while nurses on the private unit prioritize overall patient satisfaction. Nurses in both units do not conduct a comprehensive pain assessment and they do not use validated pain assessment tools. Facilitators, such as availability of analgesics and palliative care training, were helpful in managing cancer pain especially in the oncology unit. Barriers such as, negative attitudes towards opioids and doubting patients’ report of pain continue to hinder adequate cancer pain management in the private unit. Other barriers including lack of pain management policies, assessment tools, and workload, influence cancer pain management practices negatively in both units. Understanding the role of unit culture in nursing cancer pain management practices has important implications for policy and practice. Findings in this study show a divergence of the prevailing training of nurses on pain management and practice. Findings could be used to develop pain management policies and protocols for nurses to use as a guide in cancer pain management. Also, nurse managers could use this findings to improve practice for instance, training in cancer pain management could be expanded to include nurses in the private unit. In terms of research, studies could be done to capture patients’ perspectives regarding cancer pain management, or implementation studies could be carried out to alleviate the barriers identified. Lastly, tailored strategies aimed at changing the culture in a unit to enhance change in practice are needed.

The concept of responsible sexual behavior (RSB) gained popularity when it was introduced in Healthy People 2010 as a leading health indicator. The Healthy People initiatives organize the top health priorities and create guidelines for improving the health of Americans. Promoting RSB was intended to address problems such as unintended pregnancy and sexually transmitted infections (STIs), however the guidelines never conceptually define behavior that would be considered sexually responsible. Thus, the purpose of this dissertation research was to examine how responsible sexual behavior (RSB) was defined in the context of public health literature, collegiate women, and rural women with the intention to contribute to a clearer conceptual understanding of RSB. First, an evolutionary concept analysis was conducted to define the attributes of RSB and develop a conceptual definition of responsible sexual behavior (RSB) as it applies to women 18 years and older who have sex with men from a synthesis of lay and public health literature. According to the literature, RSB is a desirable and deliberative pattern of behaviors that promote sexual health, manage risk, and foster respect of sexual partners within the context of community influences. This study also concludes that a purposeful redefinition maybe necessary to maintain a concept that is useful for guiding and evaluating sexual behavior. Second, a secondary data analysis was completed to identify college women definition of “sexual responsibility.” Data came from interviews collected as part of a mixed methods study of college women and unintended pregnancy. A total of 35 interviews were analyzed using within and across case methodology to derive a working definition of RSB for collegiate women. Women in this sample described being sexually responsible as self-advocating through actions that were consistent with personal goals and values while being aware of consequences that could threaten those goals or values. Actions included mindful partner selection, communicating boundaries, and preventing pregnancy. Women’s academic goals were closely linked to women’s sexual health decision making. Third, an exploratory descriptive study was completed to identify how rural women who have sex with men define RSB and to understand the role of the rural context on definitions and enactment of RSB. A total of ten rural Iowa women aged 18-29 participated in phone interviews. Within and across case analysis was used to describe the contextual influences of how rural dwelling women defined and enacted responsible sexual behavior. For rural women in this sample, RSB is understanding the consequences of sex and taking action to manage risks by preventing pregnancy and STIs, mindfully selecting of partners, and seeking appropriate resources. The social context of the rural environment acted as both a facilitator and barrier for women to acquire information enact RSB. In conclusion, RSB was an accessible concept for college and rural women to define and understand. However, the collective research indicated that a new definition of RSB was necessary to maintain its purpose in improving sexual and reproductive health. Thus, being sexually responsible is having an awareness of consequences and managing risks in a way that is reflective of a woman’s personal experiences, beliefs, values, and goals. How BSR is defined is fluid and subject to redefinition based on personal experiences and movement through the lifespan. Future research should focus on understanding how other populations of women define and manage BSR and that public health interventions and policy support women’s ability to be sexually responsible.

Proxy respondents are frequently used in health surveys, and the proxy is most often the spouse. Longstanding concerns linger, however, about the validity of using spousal proxies, especially for older adults. The purpose of this pilot study was to evaluate the concordance between self-reports and spousal proxy reports to a standard health survey in a small convenience sample of older married couples. We used the Seniors Together in Aging Research (STAR) volunteer registry at the University of Iowa to identify and consent a cross-sectional, convenience sample of 28 married husband and wife couples. Private, personal interviews with each member of the married couple using a detailed health survey based on the 2012 Health and Retirement Study (HRS) instrument were conducted using computer assisted personal interviewing software. Within couples, each wife completed the health survey first for herself and then for her husband, and each husband completed the health survey first for himself and then for his wife. The health survey topics included health ratings, health conditions, mobility, instrumental activities of daily living (IADLs), health services use, and preventative services. Percent of agreement and prevalence and bias adjusted kappa statistics (PABAKs) were used to evaluate concordance. PABAK coefficients indicated moderate to excellent concordance (PABAKs >0.60) for most of the IADL, health condition, hospitalization, surgery, preventative service, and mobility questions, but only slight to fair concordance (PABAKs = −0.21 to 0.60) for health ratings, and physician and dental visits. These results do not allay longstanding concerns about the validity of routinely using spousal proxies in health surveys to obtain health ratings or the number of physician and dental visits among older adults. Further research is needed in a nationally representative sample of older couples in which each wife completes the health survey first for herself and then for her husband, each husband completes the health survey first for himself and then for his wife, and both spouses’ Medicare claims are linked to their health survey responses to determine not just the concordance between spousal reports, but the concordance of those survey responses to the medical record.