Patient empowerment: The need to consider it as a measurable patient-reported outcome for chronic conditions

Background: Health policy in the UK and elsewhere is prioritising patient empowerment and patient evaluations of healthcare. Patient reported outcome measures now take centre-stage in implementing strategies to increase patient empowerment. This article argues for consideration of patient empowerment itself as a directly measurable patient reported outcome for chronic conditions, highlights some issues in adopting this approach, and outlines a research agenda to enable healthcare evaluation on the basis of patient empowerment. Discussion: Patient empowerment is not a well-defined construct. A range of condition-specific and generic patient empowerment questionnaires have been developed; each captures a different construct e.g. personal control, self-efficacy/self-mastery, and each is informed by a different implicit or explicit theoretical framework. This makes it currently problematic to conduct comparative evaluations of healthcare services on the basis of patient empowerment. A case study (clinical genetics) is used to (1) illustrate that patient empowerment can be a valued healthcare outcome, even if patients do not obtain health status benefits, (2) provide a rationale for conducting work necessary to tighten up the patient empowerment construct (3) provide an exemplar to inform design of interventions to increase patient empowerment in chronic disease. Such initiatives could be evaluated on the basis of measurable changes in patient empowerment, if the construct were properly operationalised as a patient reported outcome measure. To facilitate this, research is needed to develop an appropriate and widely applicable generic theoretical framework of patient empowerment to inform (re)development of a generic measure. This research should include developing consensus between patients, clinicians and policymakers about the content and boundaries of the construct before operationalisation. This article also considers a number of issues for society and for healthcare providers raised by adopting the patient empowerment paradigm. Summary: Healthcare policy is driving the need to consider patient empowerment as a measurable patient outcome from healthcare services. Research is needed to (1) tighten up the construct (2) develop consensus about what is important to include (3) (re)develop a generic measure of patient empowerment for use in evaluating healthcare (4) understand if/how people make trade-offs between empowerment and gain in health status

Usability Testing and Evaluation of Texas Tech Sorghum Research Initiative Website

Usability encompasses how easy something is to use. Usability testing is an integral part of user-centered design. The tests may be performed in a variety of ways including using a usability laboratory, a mixed-method data collection approach, and testing representative and non-representative users. Conducting usability tests on websites allows the site’s developers to observe users’ interaction with the site. If a website is not usable, users will go somewhere else to find the information they are looking for and the purpose of the site is lost when this happens. The efficiency, error, learnability, and satisfaction of a representative and non-representative user groups were measured during a usability test of the Texas Tech SRI site that employed mixed-method data collection. The users were given a series of tasks to perform that related to the site’s navigational scheme, layout, and content. The representative and non-representative groups efficiently navigated the site and were able to repeatedly utilize the site’s functions. However, it was concluded that the representative user group committed less errors during their interaction with the site and that their overall satisfaction with the site was higher than the non-representative user group. Representative user groups may find a higher satisfaction level in this website than non-representative groups

Meek Mill’s Trauma: Brutal Policing as an Adverse Childhood Experience

Meek Mill’s life and career have been punctuated by trauma, from his childhood lived on the streets of Philadelphia, through his rise to fame and eventual arrival as one of hip hop’s household names. his 2018 track Trauma, Meek Mill describes, in revealing prose, just how the traumatic experiences he endured personally impacted and harmed him. He also embodies a role as narrator in describing the same traumas and harms that impact the daily lives of countless similarly situated young Black people in the United States. As a child, Mill’s lived experience was one of pervasive poverty and fear, as the world surrounding him consisted of large-scale poverty, addiction, crime, violence, and death. As a young man—at just 19 years of age—he was beaten by police, wrongfully arrested and incarcerated, and ultimately convicted of crimes that he did not commit, becoming another statistic as a young Black man swallowed by the American criminal justice system. Meek’s story, lyrics and contributions to hip hop illuminate the Black experience with law enforcement. His personal involvements provide a powerful narrative for exactly how a racially biased criminal justice system perpetrates a trauma that extends far greater than the law has traditionally recognized. This article highlights this narrative through the lens that Meek Mill provides because of his current prominence in hip hop and the importance of his narrative claims. Despite his success in achieving the status of a true hip hop icon, Meek Mill suffered the kind of childhood adversity and trauma that emerging health care research indicates leads to debilitating health outcomes in adulthood. Powerful health studies conducted over the past two decades have uncovered the startling impact of Adverse Childhood Experiences (“ACEs”). ACEs are traumatic events that occur in childhood, ranging from abuse and neglect to other traumatic experiences derived from household and community dysfunction. Today, ACEs are generally placed by health researchers into seven to ten categories of childhood adversities ranging from sexual, physical and emotional abuse to the incarceration of a family member, living with someone who abuses alcohol or drugs and poverty, community violence and homelessness. These identified categories of trauma, although not fully understood or grasped as late as the 1990s, were known to occur in the lives of children all over the United States; however, the overall impact of childhood trauma on an individual’s long term health outcomes was only first measured in the now famous CDC-Kaiser Permanente ACE study. The findings of this study shook the health care world, forever altering the understanding of the link between childhood trauma and adult health outcomes. These links pushed researchers to look more deeply into the ultimate impact of traumatic childhood experiences on overall adult health. The groundbreaking study concluded that the more trauma a child experiences, the fewer years that child would live as an adult. In fact, in a 2009 study, CDC researchers determined that exposure to childhood trauma literally shortens an individual’s lifespan. On average, a person with six or more ACEs died twenty years earlier than a person that had experienced no Adverse Childhood Experiences. This reality, that traumatic childhood experiences are directly and inextricably linked to negative health outcomes, is now widely recognized in the public health and clinical literature. Dr. Robert Block, former President of the American Academy of Pediatrics, has warned that “[a]dverse childhood experiences are the single greatest unaddressed public health threat facing our nation today.” More recently, this literature has begun to explore the connection between trauma and race, outlining how structural violence and historical trauma—particularly violence and discrimination experienced by Black, indigenous, and persons of color—is often experienced both at the individual and community levels. Such work has focused on improving economic opportunities for trauma- stricken communities, improving the physical/built environment, and supporting the development of healthy social-cultural environments. The prevailing framework for addressing the ACEs crisis has been a medical model focused on interventions for individual survivors and communities rather than addressing the glaring systemic issues that directly contribute to the vast majority of the trauma suffered by those communities and the individuals and families that inhabit them. Largely and undeniably absent from the body of work on childhood trauma, and the proposed solutions to confronting and rectifying its deadly impact, is the exploration of how the American legal and justice systems, from municipal law enforcement to the appellate courts, stands at the epicenter of the current crisis. Each of the recognized categories of ACEs listed in medical screening instruments used by physicians to identity trauma have a direct nexus to the justice system. If we as a society are committed to treating ACEs as the public health crisis that they are, it is incumbent upon us to examine where and how our legal system is complicit in perpetuating trauma upon minority children. In addition, we need to consider how it can intervene—both at the individual and structural levels—to eliminate practices that contribute to multi-generational cycles of trauma and work to equip those with justice-system involvement to succeed and build the resilience necessary to heal minority individuals and communities who have been stricken by trauma and its life-long negative consequences. Indeed it is the responsibility of our justice system, as a major contributor to so-called “social determinants of health.” Meek Mill, in his intimate autobiographical tracks of Trauma, Oodles O’Noodles Babies, and Otherside of America, describes experiencing not just several instances of childhood trauma as identified by the CDC-Kaiser Permanente study, but as a teenager, he suffered additional cruel trauma at the hands of U.S. police and a criminal justice system that wrongly imprisoned and unfairly positioned him in a revolving door between probation and prison. The data tells us that the trauma Meek experienced as a child and teenager statistically predicts a poorer life expectancy for him than those individuals that experienced no trauma or little trauma as a child and youth. Because of the anti-Black culture of policing in America, and because of the deep systemic racism that permeates the criminal justice system, simple exposure to U.S. policing and its courts should qualify as an Adverse Childhood Experience for Black and minority children—one that contributes to harmful adult outcomes, including a shortened life expectancy. Mill’s personal childhood trauma as described in his music carefully extrapolates the ways that American policing and the criminal justice system literally traumatized and endangered his young Black life, as it does so many Black children. This article begins in Section I by providing an in-depth examination of ACEs research, including how the groundbreaking original ACE study discovered the direct link between high ACE scores and poor health outcomes and the prevalence of ACEs in the Black community. It then turns, in Section II, to a brief discussion of the broad ACE category of social disadvantage, and how a child growing up in an environment built on a foundation of poverty and violence will inevitably have more trauma, more ACEs, and be harmed through his or her experience of toxic stress. Section III will provide an overview of anti-Black policing and how law enforcement, as currently constituted, traumatizes minority communities and youth. Section IV explains how criminal charging, jailing, and sentencing traditions have disproportionately targeted Black men, contributing to the trauma that their children and families experience with the loss of a loved one to death or incarceration. The article next argues that minority youth exposure to U.S. law enforcement agents and the justice system at large functions as an ACE for youth of color in a way that is simply not present for non-minority youth and, as such, should be added to the list of ACEs that are formally recognized by public health officials. Finally, the article concludes with how Meek Mill himself is seeking to reform a system rife with debilitating trauma. Throughout each section, Meek Mill, and the raw lyrics from some of his most personal tracks, will serve as an illustration, and example, of how social disadvantage, police misconduct and brutality, and the American criminal justice system at large, cause harmful and lifelong trauma for Black Americans

Development and Evaluation of an Intervention to Support Family Caregivers of People with Cancer to Provide Home-based Care at the End of Life: a Feasibility Study

Purpose: To design and evaluate an intervention to address carers’ needs for practical information and support skills when caring for a person with cancer at end of life. Method: Phase I 29 carers were interviewed about need for practical information, support skills and their preferences for information delivery. The preferred format was a booklet. Phase 2 evaluated the booklet. 31 carers and 14 district nurses participated. Validated questionnaires: on perceptions of caregiving and carer health before and after the booklet was used and interviews with both carers and nurses were undertaken.24 carers completed both interviews. Quantitative data were coded using scale manuals and analysed using SPSSv20 and interview data was analysed thematically. Results: Carers were aged 31-82 and cared for people aged 50-92; 8 carers were male and 23 female; 20 cared for a partner, 8 for a parent and 1 for a sibling (2 undisclosed). Carers were positive about the booklet, however many carers would have liked the booklet earlier. Carers reported feeling more positive about caregiving, and more reassured and competent in their role. District nurses found the booklet useful and reported receiving fewer phone calls from study carers than others in similar situations. Conclusions: The booklet intervention was a source of reassurance to carers and it has the potential to be incorporated into everyday practice. The challenge is in when and how to distribute the booklet and more work is required on the timing of delivery in order to maximise the usefulness of booklet to carers

Trauma-Informed Policing: The Impact of Adult and Childhood Trauma on Law Enforcement Officers

For every six months that a police officer serves in the line of duty, he or she is likely to experience an average of three traumatic events. Such events may include fatal accidents, murders, suicides, and active threats to the life of the officer or someone else. Given the wealth of available data on how trauma reorganizes the nervous system to respond to everyday stimuli as threatening, this is an area that cries for critical exploration, especially in light of the frequency with which unarmed Black civilians are killed at the hands of officers who often make split-second decisions to respond to situations they perceive as dangerous with deadly force. For police officers of color, on-the-job trauma is often compounded by the lived experience of being a Black or brown person in America. Our previous research has delved into the traumatic fallout of the over-policing of Black youth and its long-term negative health impacts on Black people at a population level. As adults, officers of color then face both the persistent stress of living in a society that treats Black lives as disposable and the forceful, public rebukes of abusive police practices that target the very people who look like them. Such critiques, police officers report, add to the stress of an already demanding, hazard-filled profession. When the undeniable racial dimensions of aggressive policing of communities of color are publicly discussed in the wake of the murder of yet another unarmed Black mother, father, or child, commenters point to the red herring that racism in policing must not exist when such an incident involves a Black police officer who pulls the trigger. Itis our assertion that this is not the case. All police officers are subject to implicit racial bias as products of a culture where white supremacy is alive and well, and this is known and documented. What is not documented is our argument that the trauma that all police officers experience in the line of duty, as well as any preexisting childhood trauma that they bring with them, predisposes them at a biological level to overreact to perceived threats in ways that create increased risk for the unnecessary use of deadly force. Black police officers in particular are susceptible given the duality of their roles, although little is known about how this plays out in the context of threatening encounters. This Article seeks to explore that duality and lay a groundwork for development of further research. We hope to accomplish this, first, by discussing the science of trauma; second, by providing an overview of the history and evolution of policing, including recent innovations (for example, body cameras, community policing, and implicit bias training)intended to reduce the use of force and improve police-community relationships; third, by examining gaps in data and research that could assist in formulating evidence-based approaches for reducing the potential for violent encounters; and finally, by sharing narrative accounts of how traumatic experiences have shaped police officers in their interactions with individuals and communities of color

Central Solomon languages

The Papuan languages of the central Solomon Islands are a negatively defined areal grouping: They are those four or possibly five languages in the central Solomon Islands that do not belong to the Austronesian family. Bilua (Vella Lavella), Touo (Rendova), Lavukaleve (Russell Islands), Savosavo (Savo Island) and possibly Kazukuru (New Georgia) have been identified as non-Austronesian since the early 20th century. However, their affiliations both to each other and to other languages still remain a mystery. Heterogeneous and until recently largely undescribed, they present an interesting departure from what is known both of Austronesian languages in the region and of the Papuan languages of the mainland of New Guinea

The Vehicle, Fall 2000

Vol. 42, No. 1 Table of Contents I Never Even Knew the Room NumberJeremy Hartzellpage 5 Charcoal Sketches of the MoonAlex Cardonapage 6 A Street, a Cat, the Sky, my Shoes, my Feet, TonightJanet Windeguthpage 7 Mainlining AmoreShanna Hullpage 9 Forest ChoirJeremy Hartzellpage 10 Ritual Timepiece ConfigurationsStella Linkpage 11 Carpe DiemRobb Dunnpage 12 Lost in AmericaTodd Beardpage 13 NeurastheniaBen Erwinpage 14 CowardVeronica Espinosapage 15 UntitledCarrie Smiglapage 16 When I Close My EyesJeremy Hartzellpage 17 Brigstaff ButterflyShanna Hullpage 18 Mice in the MotelRobb Dunnpage 19 The EscapeShanna Hullpage 21 RunningNicholas Janquartpage 29https://thekeep.eiu.edu/vehicle/1073/thumbnail.jp

The Vehicle, Fall 2000

Vol. 42, No. 1 Table of Contents I Never Even Knew the Room NumberJeremy Hartzellpage 5 Charcoal Sketches of the MoonAlex Cardonapage 6 A Street, a Cat, the Sky, my Shoes, my Feet, TonightJanet Windeguthpage 7 Mainlining AmoreShanna Hullpage 9 Forest ChoirJeremy Hartzellpage 10 Ritual Timepiece ConfigurationsStella Linkpage 11 Carpe DiemRobb Dunnpage 12 Lost in AmericaTodd Beardpage 13 NeurastheniaBen Erwinpage 14 CowardVeronica Espinosapage 15 UntitledCarrie Smiglapage 16 When I Close My EyesJeremy Hartzellpage 17 Brigstaff ButterflyShanna Hullpage 18 Mice in the MotelRobb Dunnpage 19 The EscapeShanna Hullpage 21 RunningNicholas Janquartpage 29https://thekeep.eiu.edu/vehicle/1073/thumbnail.jp

Scholarship Programs for Vertical Transfers in Engineering and Engineering Technology

This paper introduces two scholarship projects funded by the National Science Foundation that focus on students who transfer at the 3rd year level from 2-year schools to the engineering and engineering technology BS programs at our university. The objectives of both the projects are: (i) to expand and diversify the engineering/technology workforce of the future, (ii) to develop linkages and articulations with 2-year schools and their S-STEM programs, (iii) to provide increased career opportunities and job placement rates through mandatory paid co-op experiences, and (iv) to serve as a model for other universities to provide vertical transfer students access to the baccalaureate degree. The Transfer Pipeline (TiPi) project awarded 25 new scholarships per year from 2012 to 2014 to a total of 75 engineering and engineering technology transfer students. By the end of Fall 2017, 66 (88%) scholars have graduated, 5 (7%) are in process of completing their degrees, and only 4 (5%) left our university, for a 95% retention rate. The paper describes our successes and challenges. The Vertical Transfer Access to the Baccalaureate (VTAB) project recruited its first group of 25 students in Fall 2017 with the goal of recruiting a total of 78 vertical transfers over the next three years. An additional goal of the VTAB project is to conduct research and generate knowledge about the VTAB project elements that will be essential for the success of vertical transfer programs at other universities. The paper describes the research instruments, and the results from an online survey and a focus group interview of the first cohort of VTAB scholars