Identifying Barriers and Facilitators to Veterans Affairs Whole Health Integration Using the Updated Consolidated Framework for Implementation Research.

BACKGROUND: Veterans Affairs (VA) implemented the Veteran-centered Whole Health System initiative across VA sites with approaches to implementation varying by site. PURPOSE: Using the Consolidated Framework for Implementation Research (CFIR), we aimed to synthesize systemic barriers and facilitators to Veteran use with the initiative. Relevance to healthcare quality, systematic comparison of implementation procedures across a national healthcare system provides a comprehensive portrait of strengths and opportunities for improvement. METHODS: Advanced fellows from 11 VA Quality Scholars sites performed the initial data collection, and the final report includes CFIR-organized results from six sites. RESULTS: Key innovation findings included cost, complexity, offerings, and accessibility. Inner setting barriers and facilitators included relational connections and communication, compatibility, structure and resources, learning centeredness, and information and knowledge access. Finally, results regarding individuals included innovation deliverers, implementation leaders and team, and individual capability, opportunity, and motivation to implement and deliver whole health care. DISCUSSION AND IMPLICATIONS: Examination of barriers and facilitators suggest that Whole Health coaches are key components of implementation and help to facilitate communication, relationship building, and knowledge access for Veterans and VA employees. Continuous evaluation and improvement of implementation procedures at each site is also recommended.

The Warburg micro syndrome protein RAB3GAP1 modulates neuronal morphogenesis and interacts with axon elongation end ER-Golgi trafficking factors.

RAB3GAP1 is GTPase activating protein localized to the ER and Golgi compartments. In humans, mutations in RAB3GAP1 are the most common cause of Warburg Micro syndrome, a neurodevelopmental disorder associated with intellectual disability, microcephaly, and agenesis of the corpus callosum. We found that downregulation of RAB3GAP1 leads to a reduction in neurite outgrowth and complexity in human stem cell derived neurons. To further define the cellular function of RAB3GAP1, we sought to identify novel interacting proteins. We used a combination of mass spectrometry, co-immunoprecipitation and colocalization analysis and identified two novel interactors of RAB3GAP1: the axon elongation factor Dedicator of cytokinesis 7 (DOCK7) and the TATA modulatory factor 1 (TMF1) a modulator of Endoplasmic Reticulum (ER) to Golgi trafficking. To define the relationship between RAB3GAP1 and its two novel interactors, we analyzed their localization to different subcellular compartments in neuronal and non-neuronal cells with loss of RAB3GAP1. We find that RAB3GAP1 is important for the sub-cellular localization of TMF1 and DOCK7 across different compartments of the Golgi and endoplasmic reticulum. In addition, we find that loss of function mutations in RAB3GAP1 lead to dysregulation of pathways that are activated in response to the cellular stress like ATF6, MAPK, and PI3-AKT signaling. In summary, our findings suggest a novel role for RAB3GAP1 in neurite outgrowth that could encompass the regulation of proteins that control axon elongation, ER-Golgi trafficking, as well as pathways implicated in response to cellular stress.

Enhancing Nurse Roles in Community Health (ENRICH): The Impact of a Primary Care-Based Undergraduate Nursing Fellowship.

BACKGROUND: Low numbers of new graduate nurses entering careers in primary care settings are insufficient to meet the demand of the current nursing shortage. The Enhancing Nurse Roles in Community Health (ENRICH) Fellowship is aimed at increasing undergraduate nursing students' exposure to population health concepts by providing opportunities to practice in primary care settings. PURPOSE: The purpose of this study was to implement and evaluate an undergraduate nursing fellowship program to enhance competency development in the primary care setting. METHODS: Fellows received targeted exposure to population health content and immersive primary care experiences through participation in 150 dedicated clinical hours in primary clinics, coupled with up to 250 hours of dedicated curriculum. RESULTS: Students who participated in the ENRICH Fellowship showed increased knowledge, improved perception of skills performance, and changed attitudes about population health and primary care nursing. CONCLUSION: Participation in a population health-based fellowship that includes targeted curricular content and primary care-based clinical experiences during an undergraduate nursing program improves knowledge, attitudes, and competency-based skills related to primary care and population health.

Oral Care Knowledge, Attitudes, and Practices of Black/African American Caregivers of Autistic Children and Non-Autistic Children.

Oral health is a vital component of overall health. Children from underserved, minoritized populations (i.e., Black/African Americans, autistic children) are at even greater risk for experiencing oral health disparities. This study aims to illuminate the oral health knowledge, attitudes, and practices of Black/African American caregivers of autistic and non-autistic children. Black/African American caregivers of children (4-to-14 years) on the autism spectrum (n = 65) or not on the autism spectrum (n = 60), participated in a survey, with input from literature reviews, interviews, previous research, and reviews by experts. Caregivers demonstrated basic knowledge of oral health with significantly lower scores for caregivers of autistic children. Caregivers care about oral health and would like to increase their knowledge. Significant differences in oral care practices were found between the autistic and non-autistic groups. Caregivers reported they can access dental services with relative ease, including finding their child a dentist, scheduling a dental appointment, and accessing transportation (personal or public) to attend the visit. Black/African American caregivers of autistic children and children without autism seem to have foundational knowledge about oral health and basic practices; however, they are interested in learning more. Therefore, tailored oral health education programs may help mitigate oral health disparities for Black/African American families.

Use of an Endoscopic Suturing Platform for the Management of Staple Line Dehiscence After Laparoscopic Sleeve Gastrectomy.

BACKGROUND: Management of staple line dehiscence following laparoscopic sleeve gastrectomy (LSG) varies based on local expertise and timing of presentation. We present our experience with an endoscopic suturing platform to treat patients with staple line dehiscence following LSG. METHODS: We included all patients who presented to our institution with a staple line dehiscence following LSG from 2005 through November 2017. All endoscopic suturing procedures were performed by a single interventional endoscopist. RESULTS: Five patients, ages 25-69 years, received treatment of staple line dehiscence at a median time of 22 days following LSG (range 13-335 days). Four out of the five patients received a stent at some point during their treatment. One patient with a chronic leak required gastrectomy and esophago-jejunostomy as a definitive treatment. The remaining four patients experienced resolution of the leak at a median of 48 days post-operatively (range 21-82 days). CONCLUSION: Endoscopic suturing may have a role in the management of leaks following LSG, as a primary treatment or as an adjunct to treatment with a stent. However, given that the technique requires considerable endoscopic expertise and in light of a number of other available therapeutic choices, further studies are required to better define the role of this technology in the algorithm of LSG-related leak management.

A Qualitative Study of Caregiving for Adolescents and Young Adults With Spinal Cord Injuries: Lessons From Lived Experiences.

Objective: To examine characteristics of caregiving from the perspectives of adolescents and young adults (AYAs) with spinal cord injuries (SCIs) and their informal caregivers to address outstanding gaps in knowledge relating to definitions of caregiving and its associated practices for this population. Methods: A multiphase qualitative design was applied, using phenomenological and narrative methods to capture data in participants' homes and communities. Participants were recruited from rehabilitation hospitals and community organizations throughout Los Angeles County, California. Inclusion criteria for AYAs included being 15-22 years old, having acquired an SCI within the previous 5 years, and using a wheelchair for mobility. The AYAs nominated persons they identified as primary caregivers to also participate. Data were collected through individual and group interviews as well as activity observations. Results: Data from the 17 participants (9 AYAs and 8 informal, primary caregivers) revealed ways in which the meaning of caregiving varied among dyads. Caregiving practices extended beyond physical assistance to include support for a range of day-to-day activities spanning from practical needs to facilitating developmental trajectories. Although AYAs expressed ideas about preferred caregiver characteristics, care partnerships appeared to be guided more by availability than preference. Conclusion: Phenomenological analysis revealed that the meaning of "caregiving" and its associated practices are highly individualized for AYAs with SCIs. Caregiving is rooted in personal needs related to effects of SCI and developmental goals. Everyday practices are shaped by individual relationships and the beliefs of AYAs and their caregivers. Addressing influences of caregiving on long-term health and function may require attention to developmental processes, caregiver "fit," and ways care is, or can be, distributed throughout broader networks according to personal needs and preferences.

Catalyzing Research to Optimize Cancer Survivors' Participation in Work and Life Roles.

Participation refers to a state of health in which a person is able to fully engage in roles and life situations. Adults living with and beyond cancer often report persistent participation restrictions that affect their productivity and quality of life. The American Occupational Therapy Foundation convened a group of scientists from seven different disciplines in a Planning Grant Collective (PGC) to stimulate research to identify scalable ways to preserve and optimize participation among cancer survivors. Participants identified challenges, prioritized solutions, and generated novel research questions that move beyond symptom and impairment mitigation as outcomes to identify interventions that improve participation in roles and life situations. This article summarizes the PGC discussion and recommendations regarding three challenges: (a) the dynamic and multi-faceted nature of participation, (b) a need to integrate the concept of participation within the culture of oncology, and (c) identification of priority areas in which new lines of research regarding participation would be most impactful.

United States Model Midwifery Legislation and Regulation: Development of a Consensus Document.

INTRODUCTION: Midwifery is defined and regulated across all 50 United States. However, states' regulations vary markedly, creating confusion for policy makers and consumers, and can limit services to women. In 2011, the International Confederation of Midwives released Global Standards for Midwifery Education, Regulation, and Association, providing guidance for international midwifery for the first time. US organizations representing midwifery education, regulation, and professional associations (US MERA) agreed to work together on common goals. METHODS: The purpose of this modified Delphi study, conducted by US MERA, was to develop a consensus document on principles of model US midwifery legislation and regulation. Expert panelists (N = 51) across maternal and child health care professions and consumer groups participated over several iterative rounds. RESULTS: The final document establishes guiding principles for US midwifery regulation, including regulatory authority, education, qualifications, regulation, registration and licensure, standards of practice and conduct, complaints, and third-party payment for services. DISCUSSION: As more US states recognize and license midwives of all credentials and in every practice setting, we can envision a time when equity, informed choice, safety, and seamless access to quality midwifery care will be the right of every birthing family.

Beyond V40.31: Narrative Phenomenology of Wandering in Autism and Dementia.

Research on autism spectrum disorder (ASD) and on Alzheimer's Disease (AD) and other types of dementia describes a behaviour called 'wandering', a term that denotes movement through space lacking intention or exact destination, as when a person is disoriented or not self-aware. In the U.S., 'wandering' in both ASD and AD has been examined mostly from a management and prevention perspective. It prioritizes safety while primarily overlooking personal experiences of those who 'wander' and their families, thus limiting the range of potentially effective strategies to address this issue. Communicative challenges faced by many people diagnosed with ASD and AD further obscure the experiential, existential aspects of 'wandering'. This article reflects an increasing concern of social science scholars interested in whether and how the conceptual and practical strategies to address 'wandering' are informed by the situated experiences of people with cognitive and developmental disabilities and their families. We examine 'wandering' at the intersections of personal experience, family life, clinical practice, public health policy, and legislation, as a conceptually rich site where notions of personhood, subjectivity, intentionality, and quality of life powerfully and consequentially converge to impact the lives of many people with ASD and AD, and their families. We draw upon critical autism studies describing how attributions of personhood, subjectivity, intentionality, rational agency, and moral autonomy of people with ASD have been contingent upon the norms and conventions governing movement of the human body through space (Hilton, Afr Am Rev 50(2):221-235, 2017). When this movement is deemed aberrant, the person may be construed as irrational, a danger to self because of a lack of self-awareness, and a danger to others because of a lack of empathy. These attributions put the person at risk of being excluded from the considerations and, more importantly, the obligations of the 'moral community' to ensure that he or she has a 'good human life' (Barnbaum, The Ethics of Autism: Among Them but not of Them. Indiana University Press, Bloomington, 2008; Silvers and Francis, Metaphilosophy 40(3/4):475-498, 2009). Using ethnographic, narrative phenomenological (Mattingly, The Paradox of Hope: Journeys through a Clinical Borderland. Berkeley: University of California Press, 2010), and medical humanities (Charon, JAMA 286:1897-1902, 2001; Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press, 2006) approaches, we examine multiple perspectives on 'wandering' in ASD and AD across narrative discourse genres, institutional contexts, and media of representation. We argue for an extension of the prevention and management view to focus not only on safety but also on what phenomenologist Merleau-Ponty (1962) called "having a world" (p. 146). The analysis is intended to inform clinical practice, policy and public health efforts to enhance understanding of first and second person perspectives on 'wandering' in order to improve the participation and quality of life of people with ASD and AD who 'wander', and their families.

"You Can Turn off the Light If You'd Like": Pediatric Health Care Visits for Children with Autism Spectrum Disorder as an Interactional Achievement.

Substantial scholarship has been generated in medical anthropology and other social science fields on typically developing child-parent-doctor interactions during health care visits. This article contributes an ethnographic, longitudinal, discourse analytic account of a child with autism spectrum disorder (ASD)-parent-doctor interactions that occur during pediatric and neurology visits. The analysis shows that when a child with ASD walks into the doctor's office, the tacit expectations about the visit may have to be renegotiated to facilitate the child's, the parent's, and the doctor's participation in the interaction. A successful visit then becomes a hard-won achievement that requires the interactional and relational work of all three participants. We demonstrate that communicative and sensory limitations imposed by ASD present unique challenges to all the participants and consider how health care disparities may invade the pediatric encounter, making visible the structural and interactional processes that engender them.

The development of a consensus statement on normal physiologic birth: a modified Delphi study.

INTRODUCTION: This article describes the process of developing consensus on a definition of, and best practices for, normal physiologic birth in the United States. Evidence supports the use of physiologic birth practices, yet a working definition of this term has been elusive. METHODS: We began by convening a task force of 21 individuals from 3 midwifery organizations and various childbirth advocacy and consumer groups. A modified Delphi approach was utilized to achieve consensus around 2 research questions: 1) What is normal physiologic birth? and 2) What practices most effectively support its achievement? Answers to these questions were collected anonymously from task force members during multiple phases that included a preliminary briefing, an initial face-to-face roundtable, 9 iterative Delphi rounds, and reciprocal feedback from a wider audience of stakeholders at national and international conferences. Content analysis identified specific statements and concepts in the first Delphi round, which were subsequently ranked in following rounds. An initial draft was constructed based on the priorities that emerged and presented for feedback to peers and childbirth advocates whose comments were incorporated into the final document. RESULTS: Four key themes were identified from our initial questions; these provided the framework for the document: 1) definitions of normal physiologic birth, 2) mechanisms and outcomes of normal physiologic birth, 3) factors that influence normal physiologic birth, and 4) recommendations for increasing normal physiologic birth. These areas comprised the final sections in the multi-organizational consensus statement. DISCUSSION: The modified Delphi approach we employed allowed for the development of a consensus statement that will serve as a template for education, practice, and future research in maternity care. The completion of this statement marks the beginning of a project to promote systemic changes that support normal physiologic birth, and thus, have the potential to improve outcomes for mothers and infants.

"And I look down and he is gone": narrating autism, elopement and wandering in Los Angeles.

'Wandering' and 'elopement' have been identified as common in autism, affecting half of all diagnosed children ages four to ten, yet families rarely receive advice from practitioners even after the fact. Family perspectives have been missing from the literature as well as from public health and policy debates on how and when to respond to this problem. The problem of 'wandering' and 'elopement' reveals a complex intersection of larger issues encountered by families of children with autism. To consider these issues, this article examines 'wandering' and 'elopement' from the perspectives of African American mothers of children with autism, an underrepresented group in autism research. We consider how the mothers experience these behaviors and the response to these behaviors by professionals, such as service coordinators and law enforcement personnel working within various jurisdictions that become involved with the problem. We analyze the mothers' narratives about 'wandering' and 'elopement' drawn from ethnographic interviews that were collected between October 1, 2009 and August 31, 2012. These interviews were part of a larger project on disparities in autism diagnosis and services that followed a cohort of 25 four to ten-year old children. Drawing on narrative, phenomenological and interpretive traditions, we trace the mothers' developing understandings of 'wandering' and 'elopement' over time, and show how these understandings become elaborated and transformed. This article provides a nuanced, moment-to-moment and longitudinal picture of the mothers' experiences of 'wandering' and 'elopement' that enriches the cross-sectional view of large-scale surveys about the problem and contributes unique insights at the family and community levels. Implications for professional awareness, clinical practice and service provision are also suggested.

I/We narratives among African American families raising children with special needs.

This paper examines a statistics debate among African American caregivers raising children with disabilities for insights into the work of "African American mothering." Using ethnographic, narrative and discourse analyses, we delineate the work that African American mothers do--in and beyond this conversation--to cross ideological and epistemological boundaries around race and disability. Their work entails choosing to be an "I" and, in some cases, actively resisting being seen as a "they" and/or part of a collective "we" in order to chart alternative futures for themselves and their children.

The significance of being occupied: the social construction of childhood occupations.

The purpose of this paper is to explore theoretical and developmental foundations for interpreting childrens hood engagement with activity in the typically social worlds of childhood. Drawing upon longitudinal ethnographic children data, I argue for the need to reframe the study of childhood occupation to the study of "socially occupied beings" as a means of enhancing our understanding of children's experiences. The focus is on childhood experiences that are socially constructed through adult and child co-created action sequences. The unit of analysis is constructed around a child or children, their adult partners in action, the social world of engagement, and proposed the cultural context. The interpretive focus is on acts and actors, acting in a socially constructed world. Two pation, microethnographic examples are provided; the first relates to an observation of a mother and her children playing in a hospital corridor and the second to an occupational therapist and child engaged in jointly constructed activity within a therapy session. These segments illustrate pragmatic and conceptual understandings of the interconnectedness of social relatedness, intersubjectivity, social action, and engagement. Further development of theoretical and research models is needed to capture the essence of children as socially occupied beings, doing something with someone else that matters.

Gazing anew: the shift from a clinical gaze to an ethnographic lens.

The purpose of this paper is to analyze ways of perceiving, knowing, and being with others while engaging in qualitative and ethnographic research. As occupational therapists acquire research expertise and embark on research trajectories, they bring their clinical legacy into the research arena. The ability to conduct qualitative and ethnographic projects may require a reconfiguration of the clinical gaze of occupational therapists. This transformation is complex and also involves acquiring and adopting a stance that alters relational and interpersonal processes and results in new ways of seeing and being. I draw upon experiences in training, mentoring, and supervising therapists who embark on ethnographic research, as well as my own research practices, to illustrate points of intersection and divergence between the clinical gaze and ethnographic lens. Artistic metaphors are also used to highlight aspects of the interactional and intersubjective processes intrinsic to ethnographic practices. I argue that ethnographers are continually evaluating and negotiating their stance in the field. The clinician who becomes an ethnographer faces unique challenges to his or her stance in the midst of moment to moment encounters as well as over time in the course of prolonged engagement.

Narrating September 11: Race, Gender, and the Play of Cultural Identities.

This article considers the September 11 tragedy as an event that has created a powerful experience-an astonishing and unthinkable "breach" from the expected and routine-that has riveted the American public and provoked personal storytelling. September 11 and its aftermath have provided an occasion for rethinking and reworking cultural identity. We explore how September 11 and subsequent events have been experienced, constructed, and narrated by African American women, primarily from working-class and low-income backgrounds. These stories, and the commentaries and discussions that surround them, provide vehicles for these women to ponder what sort of social contexts they inhabit, within what sort of subject positions they are placed, and how these may be shifting in light of the attacks and America's "War on Terrorism.

The Fragility of Healing.

This article explores a paradox-the simultaneous cultivation and suppression of "healing dramas" by pediatric rehabilitation therapists. Dramatic moments are defined as ones in which the routine exercises and treatment activities of therapeutic practice are transformed into narrative plots. These improvisational plots involve multiple characters, risks, suspense, and above all, a heightened sense that something is at stake. Experience itself becomes the focus of attention for the patient. Based upon ethnographic research in Chicago and Los Angeles, this article offers an anatomy of two such moments, investigating not only how healing dramas are constructed between patients and healers but how and why institutional discourses and practices invite their abandonment.

Learning from Stories: Narrative Interviewing in Cross-cultural Research.

This paper argues for the importance of eliciting stories when trying to understand the point of view and personal experience of one's informants. It also outlines one approach to eliciting and analyzing narrative data as part of a complex and multi-faceted ethnographic study. The paper draws upon ethnographic research among African-American families who have children with serious illnesses or disabilities. However, it is not a report of research findings per se. Rather, it is primarily a conceptual paper that addresses narrative as a research method. Features that distinguish a story from other sorts of discourse are sketched and current discussions in the occupational therapy and social science literature concerning the importance of narrative are examined. The heart of the paper focuses on a single narrative interview and examines what we learn about the client and family caregiver perspective through stories.