A Portfolio Coach-Informed Professional Development Framework.

INTRODUCTION: A majority of US medical schools have incorporated faculty coach-supported educational portfolios into the curriculum. Existing research describes coach professional development, competencies, and program perceptions. However, limited research exists on how programs address coach professional development needs. Our sequential objectives were to (1) explore faculty coach professional development experiences within medical student coaching programs and (2) develop a preliminary framework for medical faculty coach professional development. METHODS: Faculty portfolio coaches who completed 4 years of a longitudinal coaching program were recruited to complete a semi-structured exit interview. Interviews were transcribed using detailed transcription. Two analysts inductively generated a codebook of parent and child codes to identify themes. They compared themes to the professional development model proposed by O'Sullivan and Irby. RESULTS: Of the 25 eligible coaches, 15 completed the interview. Our team organized themes into two broad domains paralleling the established model: program-specific professional development and career-relevant professional development. Four program-specific professional development themes emerged: doing; modeling; relating; and hosting. Three career-relevant professional development themes emerged: advancement; meaning; and understanding. We then applied themes within each domain to propose strategies to optimize coach professional development and develop a framework modeled after O'Sullivan and Irby. DISCUSSION: To our knowledge, we propose the first portfolio coach-informed framework for professional development. Our work builds on established standards, expert opinion, and research responsible for portfolio coach professional development and competencies. Allied health institutions with portfolio coaching programs can apply the framework for professional development innovation.

Exploring perspectives on changing opioid prescribing practices: A qualitative study of community stakeholders in the HEALing Communities Study.

BACKGROUND: Community-based perspectives are needed to more broadly inform policy-makers, public health practitioners, prescribers, and pharmacists about community-led and broader efforts to reduce opioid overprescribing, and ultimately reduce prescription opioid use disorder, overdoses and fatalities. The aim of this study is to explore community-based perspectives on efforts to change opioid prescribing practices in their communities. METHODS: Semi-structured interviews were conducted with 388 community stakeholders across four states (Kentucky, Massachusetts, New York, Ohio) from November 2019 to January 2020 about community approaches and goals of community-led responses to the opioid crisis. Data analysis combined deductive and inductive approaches to identify themes and sub-themes related to improving opioid prescribing practices. RESULTS: Three major themes and different subthemes were characterized: (1) acknowledging progress (i.e., healthcare providers being part of the solution, provider education, and prescription drug monitoring programs); (2) emergent challenges (i.e., physician nonadherence with safer opioid prescribing guidelines, difficulty identifying appropriate use of opioids, and concerns about accelerating the progression from opioid misuse to drug abuse); and (3) opportunities for change (i.e., educating patients about safer use and proper disposal of opioids, expanding prescriber and pharmacist education, changing unrealistic expectations around eliminating pain, expanding and increasing insurance coverage for alternative treatment options). CONCLUSIONS: Community stakeholders appeared to support specific opportunities to reduce prescription opioid misuse and improve safer prescribing. The opportunities included culture change around pain expectations, awareness of safe disposal, additional provider education, and increased coverage and acceptability of non-opioid treatments.

The Therapeutic Odyssey: Positioning Genomic Sequencing in the Search for a Child's Best Possible Life.

Background: The desire of parents to obtain a genetic diagnosis for their child with intellectual disability and associated symptoms has long been framed as a diagnostic odyssey, an arduous and sometimes perilous journey focused on the goal of identifying a cause for the child's condition.Methods: Semi-structured interviews (N = 60) were conducted with parents of children (N = 59, aged 2-24 years) with intellectual disability and/or developmental delay (IDD) who underwent genome sequencing at a single pediatric multispecialty clinic. Interviews were conducted after parents received their child's sequencing result (positive findings, negative findings, or variants of unknown significance). Thematic analysis was performed on all interviews.Results: Parents reported that obtaining a genetic diagnosis was one important step in their overall goal of helping their child live their best life possible life. They intended to use the result as a tool to help their child by seeking the correct school placement and obtaining benefits and therapeutic services.Conclusions: For the parents of children with IDD, the search for a genetic diagnosis is best conceptualized as a part of parents' ongoing efforts to leverage various diagnoses to obtain educational and therapeutic services for their children. Cleaving parents' search for a genetic diagnosis from these broader efforts obscures the value that some parents place on a sequencing result in finding and tailoring therapies and services beyond the clinic. Interviews with parents reveal, therefore, that genomic sequencing is best understood as one important stage of an ongoing therapeutic odyssey that largely takes place outside the clinic. Findings suggest the need to expand translational research efforts to contextualize a genetic diagnosis within parents' broader efforts to obtain educational and therapeutic services outside clinical contexts.

Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some.

The expansion of both formal and informal frameworks of "engaged" research in translational research settings raises emerging and substantial normative concerns. In this article, we draw on findings from a focus group study with members of a national consortium of translational genomic research sites. The goals were to catalog informal participant engagement practices, to explore the perceived roots of these practices and the motivations of research staff members for adopting them, and to reflect on their ethical implications. We learned that participant engagement is a deliberate strategy by research staff members both to achieve instrumental research goals and to "do research differently" in response to past research injustices. While many of the participant engagement practices used in translational genomic research are not new, important insights can be gained through a closer examination of the specific contours of participant engagement in this context. These practices appear to have been shaped by the professional training of genetic counselors and by the interests and needs of participants who enroll in clinical genomics studies. The contours of this contemporary application of engaged research principles have relevance not only to clinical genomics research but also to translational research broadly, particularly for how communities of clinical researchers are interpreting the principle of respect for persons. Our findings invite normative questions about the governance of these practices and sociological questions about whether and how clinical researchers in other professions are also engaging participants in translational research settings.

Rethinking the "open future" argument against predictive genetic testing of children.

Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument remaining against testing appeals to children's "right to an open future." It claims that the autonomy of the future adult is violated when others make an irreversible choice to obtain or disclose predictive genetic information during childhood. We evaluate this argument and conclude that children's interest in an open future should not be understood as a right. Rather an open future is one significant interest to weigh against other important interests when evaluating decisions. Thus, predictive genetic testing is ethically permissible in principle, as long as the interests promoted outweigh potential harms. We conclude by offering an expanded model of children's interests that might be considered in such circumstances, and present two case analyses to illustrate how this framework better guides decisions about predictive genetic testing in pediatrics.

Adolescent bariatric surgery: a systematic review of recommendation documents.

Bariatric surgery has been performed on adolescents since the 1970s, but little is known about the guidance offered to providers in recommendation documents published in the United States. A systematic review was conducted to generate a complete record of all US recommendation documents and describe variability across the documents. This study had 3 aims: to identify the developers, examine selection criteria, and document reasons why developers have recommended this intervention for adolescents. Four databases (MEDLINE, National Guidelines Clearinghouse, Trip, and Embase) ertr searched, followed by a hand search. Documents were eligible for inclusion if they satisfied 5 criteria: written in the English language; developed and published by a US organization; comprised a clinical practice guideline, position statement, or consensus statement; offered a minimum 1-sentence recommendation on bariatric surgery for the treatment of obesity or related co-morbidities; and offered a minimum 1-sentence recommendation on bariatric surgery for children, adolescents, or both. No date limits were applied. Sixteen recommendation documents published between 1991 and 2013 met our inclusion criteria: 10 clinical practice guidelines, 4 position statements, and 2 consensus statements. Nine were produced by medical organizations, 3 by surgical organizations, and 4 by public health/governmental bodies. One document recommended against bariatric surgery for minors, and 15 endorsed the intervention for this population. Body mass index (a measure of obesity calculated by dividing weight in kilograms by the square of height in meters) thresholds were the selection criteria most often provided. Minimum age varied widely. Of the 15 endorsing documents, 10 provided a reason for performing bariatric surgery on minors, most often to treat obesity-related co-morbidities that threaten the health of the adolescent. We make 3 suggestions to improve the quality of future recommendation documents.

Children's psychological and behavioral responses following pediatric intensive care unit hospitalization: the caring intensively study.

BACKGROUND: Pediatric intensive care unit (PICU) hospitalization places children at increased risk of persistent psychological and behavioral difficulties following discharge. Despite tremendous advances in medical technology and treatment regimes, approximately 25% of children demonstrate negative psychological and behavioral outcomes within the first year post-discharge. It is imperative that a broader array of risk factors and outcome indicators be explored in examining long-term psychological morbidity to identify areas for future health promotion and clinical intervention. This study aims to examine psychological and behavioral responses in children aged 3 to 12 years over a three year period following PICU hospitalization, and compare them to children who have undergone ear, nose and/or throat (ENT) day surgery. METHODS/DESIGN: This mixed-methods prospective cohort study will enrol 220 children aged 3 to 12 years during PICU hospitalization (study group, n = 110) and ENT day surgery hospitalization (comparison group, n = 110). Participants will be recruited from 3 Canadian pediatric hospitals, and followed for 3 years with data collection points at 6 weeks, 6 months, 1 year, 2 years and 3 years post-discharge. Psychological and behavioral characteristics of the child, and parent anxiety and parenting stress, will be assessed prior to hospital discharge, and again at each of the 5 subsequent time points, using standardized measures. Psychological and behavioral response scores for both groups will be compared at each follow-up time point. Multivariate regression analysis will be used to adjust for demographic and clinical variables at baseline. To explore baseline factors predictive of poor psychological and behavioral scores at 3 years among PICU patients, correlation analysis and multivariate linear regression will be used. A subgroup of 40 parents of study group children will be interviewed at years 1 and 3 post-discharge to explore their perceptions of the impact of PICU hospitalization on their children and enhance our understanding of findings generated from standardized measures in the larger cohort study. An interpretive descriptive approach will guide qualitative data collection and analysis. DISCUSSION: This study aims to generate new information regarding the magnitude and duration of psychological and behavioral disturbances among children admitted to PICUs, potentially leading to remedial or preventive interventions.

Health consumption as work: the home pregnancy test as a domesticated health tool.

A growing array of biomedical goods and services has become central to the North American experience of navigating illness and pursuing good health. Yet despite the utility of consumption as an analytical framework within the social sciences, the selection, purchase, and use of biomedical goods and services has been understudied. By using the home pregnancy test as a case study, we suggest new approaches to thinking about the consumption of these goods and services. We chose the home pregnancy test because it is the best-known example of a mass-produced diagnostic tool used by consumers. We draw on two sources of data for this qualitative analysis: a set of stories submitted between 2003 and 2005 by women and men to an online exhibit mounted by the National Institutes of Health called "A Thin Blue Line: The History of the Pregnancy Test Kit," which we analysed between 2006 and 2007; and web sampling conducted in 2009 and 2010 of personal web and video logs of women and men who have posted stories and opinions about their experiences with contemporary home pregnancy testing products. We adapt the term "domestication" from Science and Technology Studies scholarship to describe the movement of diagnostic devices into homes for use by consumers. Specifically, we propose that the consumption of domesticated biomedical devices, goods, and services should be theorized as work performed by consumers, in two senses: as a form of tool use that allows non-experts to produce diagnostic knowledge about their own bodies and health; and as the ongoing biopolitical work that is expected of citizens to produce healthy bodies. Our paper draws attention to these understudied phenomena, while suggesting new approaches to theorizing the social and cultural elements of goods and services for health.

Barriers, facilitators, and recommendations related to implementing the Baby-Friendly Initiative (BFI): an integrative review.

Despite growing evidence for the positive impact of the Baby-Friendly Initiative (BFI) on breastfeeding outcomes, few studies have investigated the barriers and facilitators to the implementation of Baby-Friendly practices that can be used to improve uptake of the BFI at the local or country levels. This integrative review aimed to identify and synthesize information on the barriers, facilitators, and recommendations related to the BFI from the international, peer-reviewed literature. Thirteen databases were searched using the keywords Baby Friendly, Baby-Friendly Hospital Initiative, BFI, BFHI, Ten Steps, implementation, adoption, barriers, facilitators, and their combinations. A total of 45 English-language articles from 16 different countries met the inclusion criteria for the review. Data analysis was guided by Cooper's five stages of integrative research review. Using a multiple intervention program framework, findings were categorized into sociopolitical, organizational-level, and individual-level barriers and facilitators to implementing the BFI, as well as intra-, inter-, and extraorganizational recommendations for strengthening BFI implementation. A wide variety of obstacles and potential solutions to BFI implementation were identified. Findings suggest some priority issues to address when pursuing Baby-Friendly designation, including the endorsements of both local administrators and governmental policy makers, effective leadership of the practice change process, health care worker training, the marketing influence of formula companies, and integrating hospital and community health services. Framing the BFI as a complex, multilevel, evidence-based change process and using context-focused research implementation models to guide BFI implementation efforts may help identify effective strategies for promoting wider adoption of the BFI in health services.

Mothers' experiences of a Touch and Talk nursing intervention to optimise pain management in the PICU: a qualitative descriptive study.

BACKGROUND: Parents consistently express a desire to support their child and retain a care-giving role in the paediatric intensive care unit (PICU). Qualitative data gathered as part of a PICU intervention study were analysed to explore mothers' experiences using a Touch and Talk intervention to comfort their children during invasive procedures. OBJECTIVES: To describe how mothers experienced involvement in their children's care through a Touch and Talk intervention and whether they would participate in a similar intervention again. RESEARCH METHODOLOGY AND SETTING: A qualitative descriptive design was used and semi-structured interviews conducted with 65 mothers in three Canadian PICUs. Data were subjected to thematic analysis. RESULTS: The overarching theme centred on the importance of comforting the critically ill child. This included being there for the child (the importance of parental presence); making a difference in the child's pain experience; and feeling comfortable and confident about participating in care. All but two mothers would participate in the intervention again and all would recommend it to others. CONCLUSIONS: Giving parents the choice of being involved in their child's care using touch and distraction techniques during painful procedures can provide an invaluable opportunity to foster parenting and support the child during a difficult PICU experience.