Indicators of life success from the perspective of individuals with traumatic brain injury: a scoping review.

PURPOSE: The purpose was to synthesize qualitative literature and identify indicators of life success (positive life outcomes and experiences) that can help in understanding resiliency in the context of traumatic brain injury (TBI). METHODS: This scoping review involved searching nine online databases for population (TBI) and context (qualitative literature). Searches retrieved 42 852 articles and, after two-stage screening, 76 articles met the inclusion criteria of reporting indicators of life success from the perspective of individuals with TBI. RESULTS: Most studies were conducted in North America, Australia, or Europe. Participants were people living with TBI (mild to severe), of all age ranges. Positive life experiences were organized within four domains: understanding of oneself and one's life, social relationships and interaction, doing (engagement in activities, sense of control and accomplishment), and hope for the future. CONCLUSIONS: The positive life experiences reflect both processes and outcomes (indicators of success) and highlight the need for a multidimensional approach when seeking to understand resiliency following TBI. The transactional framework of life experiences can be applied in future TBI resiliency research to understand how individuals negotiate adversity through experiences promoting understanding of oneself and the world, social relationships, engagement in activity and hope. Implications for rehabilitationRehabilitation services should consider how to afford opportunities for engagement in activity, social interaction, meaning making (i.e., coming to new understandings), and hope.With respect to engaging in activity and social relationships, having social interaction, being understood, being active and productive, having autonomy, and having accomplishments, reflect important experiences to enable within rehabilitation services.Rehabilitation professionals should consider how providing opportunities for their clients to have positive life experiences may contribute toward an adaptive and empowered mindset.

Fostering a just culture in healthcare organizations: experiences in practice.

BACKGROUND: A just culture is regarded as vital for learning from errors and fostering patient safety. Key to a just culture after incidents is a focus on learning rather than blaming. Existing research on just culture is mostly theoretical in nature. AIM: This study aims to explore requirements and challenges for fostering a just culture within healthcare organizations. METHODS: We examined initiatives to foster the development of a just culture in five healthcare organizations in the Netherlands. Data were collected through interviews with stakeholders and observations of project group meetings in the organizations. RESULTS: According to healthcare professionals, open communication is particularly important, paying attention to different perspectives on an incident. A challenge related to open communication is how to address individual responsibility and accountability. Next, room for emotions is regarded as crucial. Emotions are related to the direct consequences of incidents, but also to the response of the outside world, including the media and the health inspectorate. CONCLUSIONS: A challenge in relation to emotions is how to combine attention for emotions with focusing on facts, both within and outside the organization. Finally, healthcare professionals attach importance to commitment and exemplary behavior of management. A challenge as a manager here is how to keep distance while also showing commitment. Another challenge is how to combine openness with privacy of the parties involved, and how to deal with less nuanced views in other layers of the organization and in the outside world. Organizing reflection on the experienced tensions may help to find the right balance.

Role of the regulator in enabling a just culture: a qualitative study in mental health and hospital care.

OBJECTIVES: A just culture is considered a promising way to improve patient safety and working conditions in the healthcare sector, and as such is also of relevance to healthcare regulators who are tasked with monitoring and overseeing quality and safety of care. The objective of the current study is to explore the experiences in healthcare organisations regarding the role of the healthcare inspectorate in enabling a just culture. DESIGN: Qualitative study using interviews and focus groups that were transcribed verbatim, and observations of which written reports were made. Transcripts and observation reports were thematically analysed. SETTING: Three mental healthcare providers, two hospitals and the healthcare inspectorate in the Netherlands. PARTICIPANTS: We conducted 61 interviews and 7 focus groups with healthcare professionals, managers and other staff in healthcare organisations and with inspectors. Additionally, 27 observations were conducted in healthcare organisations. RESULTS: We identified three themes in our data. First, professionals and managers in healthcare organisations perceive the inspectorate as a potential catalyst for learning processes, for example, as an instigator of investigating incidents thoroughly, yet also as a potential barrier as its presence and procedures limit how open employees feel they can be. Second, a just culture is considered relational and layered, meaning that relationships between different layers within or outside the organisation might hinder or promote a just culture. Finally, for inspectors to enable a just culture requires finding a balance between allowing organisations the time to take responsibility for quality and safety issues, and timely regulatory intervention when healthcare providers are unwilling or unable to act. CONCLUSIONS: If regulators intend to enable the development of a just culture within healthcare organisations, they must adopt regulatory procedures that support reflection and learning within the organisations they regulate and consider mutual trust as a vital regulatory tool.

Exploring the after-hours social experiences of youth with disabilities in residential immersive life skills programs: a photo elicitation study.

PURPOSE: This study explored the meaning of the after-hours social experiences of youth with disabilities in a residential life skills program. After-hours experiences occur outside of formal program hours, primarily in the evenings. METHOD: Five youth with cerebral palsy (three females) participated in an exploratory photo elicitation study while attending one of two residential immersive life skills programs. Following an auto-driven photo elicitation method, youth took photos of their choosing and then were interviewed about photos they elected to share. Interview data were analyzed thematically. RESULTS: Themes illustrated meaningful social experiences and their benefits. Two themes described the after-hours social experiences of most importance to youth: learning about strengths from working together, and having meaningful individual and group conversations. Three themes reflected benefits reported by youth: learning about differences among people, gaining new perspectives and new knowledge about oneself, and developing friendships and a sense of "family." CONCLUSIONS: The findings illuminate the benefits of after-hours social experiences for youth who may have had little opportunity previously to informally interact with other youth with disabilities. The findings highlight the importance of the immersive, group nature of a residential, away-from-home youth transition program, particularly the value added by the after-hours program component.IMPLICATIONS FOR REHABILITATIONThe findings support the value of an over-night residential aspect for life skills programs for youth with disabilities.Residential immersive life skills programs provide opportunities for youth to discuss common experiences and shared challenges, leading to the formation of social bonds.Residential immersive life skills programs provide opportunities for youth to interact with peers in the absence of adults, and to make choices about how to use their personal time.It is important to intentionally design transition programs to provide opportunities for after-hours social experiences, including working together and socializing.

Conceptualizing and Fostering the Quality of CES Through a Dutch National Network on CES (NEON).

The prevalence of Clinical ethics support (CES) services is increasing. Yet, questions about what quality of CES entails and how to foster the quality of CES remain. This paper describes the development of a national network (NEON), which aimed to conceptualize and foster the quality of CES in the Netherlands simultaneously. Our methodology was inspired by a responsive evaluation approach which shares some of our key theoretical presuppositions of CES. A responsive evaluation methodology engages stakeholders in developing quality standards of a certain practice, instead of evaluating a practice by predefined standards. In this paper, we describe the relationship between our theoretical viewpoint on CES and a responsive evaluation methodology. Then we describe the development of the network (NEON) and focus on three activities that exemplify our approach. In the discussion, we reflect on the similarities and differences between our approach and other international initiatives focusing on the quality of CES.

Perspectives of Canadian Rural Consultant Pediatricians on Diagnosing Autism Spectrum Disorder: A Qualitative Study.

BACKGROUND: Consultant pediatricians represent a potential resource for increasing autism spectrum disorder (ASD) diagnostic capacity; however, little is known about how they perceive their roles in ASD diagnosis. OBJECTIVE: The objective of this study was to examine the perspectives of rural consultant pediatricians regarding their perceived roles, facilitators, and barriers in ASD diagnosis. METHODS: We performed a qualitative study using thematic analysis. Consultant pediatricians from 3 small-sized and medium-sized Ontario communities were recruited. Semistructured interviews were conducted, transcribed, coded, and analyzed. RESULTS: Fourteen pediatricians participated in this study. Participants all considered ASD diagnosis to be in their scope of practice. The major theme identified was the process of diagnosing ASD, which occurred in 3 stages: preassessment (gathering information before the first clinic visit), diagnosis, and service access. All these stages are influenced by ecological factors consisting of characteristics of the child, family, individual physician, pediatric group practice, and the broader system of ASD care. CONCLUSION: Consultant pediatricians practicing in nonurban Ontario communities see ASD diagnosis as part of their scope of practice and collaboratively work within groups to address the needs of their communities. Strategies aimed at increasing diagnostic capacity should target salaried group practices and improve the efficiency of assessments through preclinic information gathering.

Quality Characteristics for Clinical Ethics Support in the Netherlands.

Background: This article presents a set of quality characteristics of clinical ethics support (CES) in the Netherlands.Methods: The quality characteristics were developed with a large group of stakeholders working with CES, participating in the Dutch Network for Clinical Ethics Support (NEON).Results: The quality characteristics concern the following domains: (1) goals of CES, (2) methods of CES, (3) competences of CES practitioners, and (4) implementation of CES. Conclusions: We discuss suggestions for how to use the quality characteristics, discuss some aspects that stand out about these quality characteristics, and reflect on the method and the status of the quality characteristics. The quality characteristics are meant as a heuristic instrument, helping CES practitioners to explore and improve the quality of CES in a health care organization, but at the same time they can be improved based on experiences during their application to CES practices.

Prioritizing a Research Agenda of Transitional Care Interventions for Childhood-Onset Disabilities.

Transitional care interventions have the potential to optimize continuity of care, improve health outcomes and enhance quality of life for adolescents and young adults living with chronic childhood-onset disabilities, including neurodevelopmental disorders, as they transition to adult health and social care services. The paucity of research in this area poses challenges in identifying and implementing interventions for research, evaluation and implementation. The purpose of this project was to advance this research agenda by identifying the transitional care interventions from the scientific literature and prioritize interventions for study. A modified-Delphi approach involving two rounds of online surveys followed by a face-to-face consensus meeting with knowledge users, researchers and clinician experts in transitional care (n = 19) was used. A subsequent virtual meeting concluded the formulation of next steps. Experts rated 16 categories of interventions, derived from a systematic review, on importance, impact, and feasibility. Seven of the 16 interventions categories received a mean score rating of ≥7 (out of 10) on all three rating categories. Participants then rank ordered the reduced list of seven interventions in order of priority and the top four ranked interventions advanced for further discussion at a consensus meeting. Using the Template for Intervention Description and Replication (TIDieR) checklist as a guide, the participants identified that a study of a peer system navigator was worthy of future evaluation. This study highlighted that transitional care interventions are complex and multifaceted. However, the presence of a peer to support system navigation, advocacy and individual and family education was considered the most ideal intervention addressing the current gap in care. Future research, which aims to engage patients and families in a co-design approach, is recommended to further develop this intervention.

Decision-making approaches in transgender healthcare: conceptual analysis and ethical implications.

Over the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the (biomedical) evidence base grows and conceptualizations regarding gender dysphoria/gender incongruence evolve, so too do ideas regarding what constitutes good treatment and decision-making in transgender healthcare. Against this background, differing care models arose, including the 'Standards of Care' and the so-called 'Informed Consent Model'. In these care models, ethical notions and principles such as 'decision-making' and 'autonomy' are often referred to, but left unsubstantiated. This not only transpires into the consultation room where stakeholders are confronted with many different ethical challenges in decision-making, but also hampers a more explicit discussion of what good decision-making in transgender medicine should be comprised of. The aim of this paper is to make explicit the conceptual and normative assumptions regarding decision-making and client autonomy underpinning the 'Standards of Care' and 'Informed Consent Model' currently used in transgender care. Furthermore, we illustrate how this elucidation aids in better understanding stakeholders' ethical challenges related to decision-making. Our ethical analysis lays bare how distinct normative ambiguities in both care models influence decision-making in practice and how foregrounding one normative model for decision-making is no moral panacea. We suggest that the first steps towards good decision-making in gender-affirming medical care are the acknowledgement of its inherent normative and moral dimensions and a shared, dialogical approach towards the decision-making process.

Investigating the adaptation of caregivers of people with traumatic brain injury: a journey told in evolving research traditions.

PURPOSE: To examine how conceptualizations of caregiver adaptation to traumatic brain injury have changed over time. The objectives were to identify research traditions, adaptive outcomes assessed in these traditions, and psychosocial variables associated with adaptive outcomes. METHODS: A meta-narrative review was conducted on 29 identified articles published over a 25-year period (1990-2015). RESULTS: Four traditions were identified with varying storylines. Burden/Strain (1990-1999) focused on adjustment as the absence of a negative state. Appraisal/Coping (2000-2005) recognized that caregiving experiences could be both positive and negative. In Quality of Life (2006-2011), there was increasing recognition that both personal and contextual factors influence adaptation. Resiliency (2012-2015) used the term "resiliency" as an organizing framework for a broad group of variables and assessed resilience, quality of life, community re-integration, and life/marital satisfaction. CONCLUSIONS: These storylines reflect an evolution from problem-based to strengths-based conceptualizations, from interest in crisis to considering adaptation as a process unfolding over time, from quantitative to qualitative methods, and towards more holistic views of adaptive outcomes. Variables significantly associated with outcomes across the traditions included social support, reframing and positive appraisal, and behavior strategies. Implications concern the need for longitudinal studies, measurement of environmental factors, and the development of best practices.IMPLICATIONS FOR REHABILITATIONResearch studies on the adaptation of caregivers for people with TBI have evolved from a focus on burden, to coping and quality of life, and most recently to resiliency.It is important to assist caregivers of people with TBI to obtain social support, find positive ways of viewing their experiences, and take part in respite and enjoyed activities.Service providers can help caregivers by adopting a strengths-based perspective to help them recognize available resources, supports, and opportunities.Since caregiver adaptation changes over time, service providers should pay attention to changes in family circumstances and the mental health of caregivers.

Transitional Care Interventions for Youth With Disabilities: A Systematic Review.

CONTEXT: Transition from the pediatric to the adult health care system is a complex process that should include medical, psychosocial, educational, recreational, and vocational considerations. OBJECTIVE: In this systematic review, we aim to synthesize the evidence on transitional care interventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders. DATA SOURCES: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature) were searched. STUDY SELECTION: In the included studies, researchers examined TCIs for adolescents and young adults (12-24 years of age) with childhood-onset disabilities. Studies were experimental, quasi-experimental, and observational studies published in the last 26 years. DATA EXTRACTION: Two reviewers independently completed study screening, data extraction, and risk-of-bias assessment. RESULTS: Fifty-two studies were included. Five studies reported on QoL, but statistically significant improvements were noted in only 1 of these studies. Significant improvements were also found in secondary outcomes including disability-related knowledge and transitional readiness. TCIs targeted patients, families and/or caregivers, and health care providers and exhibited great heterogeneity in their characteristics and components. LIMITATIONS: Inconsistent reporting on interventions between studies hindered synthesis of the relationships between specific intervention characteristics and outcomes. CONCLUSIONS: Although there is limited evidence on the impact of TCIs on the QoL for youth with childhood-onset disabilities, there is indication that they can be effective in improving patient and provider outcomes. The initiation of transition-focused care at an early age may contribute to improved long-term health outcomes in this population.

Theory and practice of integrative clinical ethics support: a joint experience within gender affirmative care.

BACKGROUND: Clinical ethics support (CES) aims to support health care professionals in dealing with ethical issues in clinical practice. Although the prevalence of CES is increasing, it does meet challenges and pressing questions regarding implementation and organization. In this paper we present a specific way of organizing CES, which we have called integrative CES, and argue that this approach meets some of the challenges regarding implementation and organization. METHODS: This integrative approach was developed in an iterative process, combining actual experiences in a case study in which we offered CES to a team that provides transgender health care and reflecting on the theoretical underpinnings of our work stemming from pragmatism, hermeneutics and organizational and educational sciences. RESULTS: In this paper we describe five key characteristics of an integrative approach to CES; 1. Positioning CES more within care practices, 2. Involving new perspectives, 3. Creating co-ownership of CES, 4. Paying attention to follow up, and 5. Developing innovative CES activities through an emerging design. CONCLUSIONS: In the discussion we compare this approach to the integrated approach to CES developed in the US and the hub and spokes strategy developed in Canada. Furthermore, we reflect on how an integrative approach to CES can help to handle some of the challenges of current CES.

Dealing with Moral Challenges in Treatment of Transgender Children and Adolescents: Evaluating the Role of Moral Case Deliberation.

Treatment teams providing affirmative medical transgender care to young people frequently face moral challenges arising from the care they provide. An adolescent's capacity to consent, for example, could raise several issues and challenges. To deal with these challenges more effectively, several Dutch treatment teams started using a relatively well-established form of clinical ethics support (CES) called Moral Case Deliberation (MCD). MCD is a facilitator-led, collective moral inquiry based on a real case. This study's purpose is to describe the teams' perceived value and effectiveness of MCD. We conducted a mixed methods evaluation study using MCD session reports, individual interviews, focus groups, and MCD evaluation questionnaires. Our results show that Dutch transgender care providers rated MCD as highly valuable in situations where participants were confronted with moral challenges. The health care providers reported that MCD increased mutual understanding and open communication among team members and strengthened their ability to make decisions and take action when managing ethically difficult circumstances. However, the health care providers also expressed criticisms of MCD: some felt that the amount of time spent discussing individual cases was excessive, that MCD should lead to more practical and concrete results, and that MCD needed better integration and follow-up in the regular work process. We recommend future research on three matters: studying how MCD contributes to the quality of care, involvement of transgender people themselves in MCD, and integration of CES into daily work processes.

A Solution-Focused Coaching Intervention with Children and Youth with Cerebral Palsy to Achieve Participation-Oriented Goals.

Background: The ultimate goal of therapeutic intervention is meaningful participation in one's world. For people with Cerebral Palsy (CP), limitations can often become a focus of care.Aim: Our purpose was to investigate the impact of a Solution-Focused Coaching intervention designed for pediatric rehabilitation (SFC-peds) on the attainment of participation goals for children/youth with CP.Method: Twelve participants participated in a repeated measures quantitative study and in qualitative interviews. Children and youth (ages 6-19) and their families participated in three to five coaching sessions, including an initial baseline goal setting session, with one additional follow-up session as well as the qualitative interviews. The Canadian Occupational Performance Measure and Goal Attainment Scaling were incorporated into initial coaching sessions and then re-administered by a blind assessor within one month post-intervention. Qualitative interviews were conducted at this time.Results: Statistically significant improvements were found in goal performance, satisfaction, and attainment. Interview data included consideration of both the content of the intervention (what the practitioner is doing) and the unique SFC-peds process (how the client feels about the intervention).Conclusions: SFC-peds may present an effective approach for working with children/youth with CP to achieve self-selected participation-oriented goals in a relatively short time-period.

Researching experiences of childhood brain injury: co-constructing knowledge with children through arts-based research methods.

Objective: In the knowledge base examining experiences of childhood brain injury, the perspectives of children with brain injury are notably lacking. This failure to represent the voices of pediatric clients has resulted in an incomplete knowledge base from which to inform evidence-based rehabilitation practice. In this paper, we examine why the perspectives of children with brain injury are rarely sought and propose a new way forward.Methods: We draw upon current evidence and practices in related fields and present an exemplar from an in-progress qualitative arts-based research project with children with brain injury.Results: Assumptions ingrained in research practices, particularly those surrounding the capacity of 'doubly vulnerable' children with brain injury to produce knowledge, have resulted in the relative exclusion of this group from research that concerns them. For the field to evolve, research practices must value children's first-hand accounts, engage them in co-constructing knowledge about their lives, and invite methods that meet their interests and abilities.Conclusion: By reframing how we think about the capacities of children with disabilities and shifting our research practices to include children with brain injury as knowledgeable participants, it becomes possible to expand the knowledge base upon which clinical rehabilitation practices are built.Implications for RehabilitationCurrent research practices preclude 'doubly vulnerable' pediatric populations, including children with brain injury, from actively contributing to research that concerns them.As a result, the perspectives of children with brain injury are virtually absent from research, rendering the evidence base upon which rehabilitative practices are built incomplete.Reframing how we think about the capacities of children with brain injury can shift how we engage with them, both in research and clinic, and may subsequently impact the knowledge available to us.Implications for client-centred rehabilitation are discussed, including the need to understand children as capable of insight into their own experience, as able to contribute to a more complete understanding of the health phenomena that affect them, and as invaluable and active participants in research and clinical care.

Building blocks of resiliency: a transactional framework to guide research, service design, and practice in pediatric rehabilitation.

Purpose: Children's resiliency is seen as important in pediatric rehabilitation, but is seldom the focus of research or intervention. This article presents a resiliency framework to inform pediatric rehabilitation research, service design, and practice.Methods: The development of the framework was guided by a transactional, life course perspective, and a review of self-constructs in the resiliency literature.Results: The framework comprises health-related adversities, self-capacities, self-regulatory processes, and adaptive benefits. Four adaptive self-capacities are highlighted (activity self-efficacy, capacity to marshal resources and supports to achieve goals, capacity to adapt to changing life situations, and capacity to envision a positive future). These self-capacities are linked to common adversities experienced by children with disabilities, namely activity limitations, functioning and participation restrictions, transition issues, and anticipated future life challenges. The self-capacities are also associated with empowered, optimistic, adaptive, and hopeful mindsets, which influence accommodative and assimilative self-regulatory strategies affecting children's adaptive benefits.Conclusions: The framework can inform resiliency-related research exploring self-capacities and resiliency processes. The framework points to what is modifiable through intervention targeting the person-in-context, namely self-capacities, mindsets, and situated experiences. Implications for service design and delivery include providing opportunities and interacting with clients in ways that support the development of these self-capacities.Implications for rehabilitationFostering resiliency means preparing children with disabilities to negotiate and navigate the adversities and challenges they will encounter over their lives.Important resiliency-related self-capacities include activity self-efficacy, capacity to marshal resources and supports to achieve goals, capacity to adapt to changing life situations, and capacity to envision a positive future.The resiliency framework suggests the importance of enhancing children's views of themselves as empowered, optimistic, adaptive, and hopeful.Practice will be enriched by acknowledging that a range of health concerns are relevant to practice, including issues of impairment, functioning, participation, and adaptation.

Lessons learned from implementing a responsive quality assessment of clinical ethics support.

BACKGROUND: Various forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics support. In the Netherlands, a CES quality assessment project based on a responsive evaluation design has been implemented. CES practitioners themselves reflected upon the quality of ethics support within each other's health care organizations. This study presents a qualitative evaluation of this Responsive Quality Assessment (RQA) project. METHODS: CES practitioners' experiences with and perspectives on the RQA project were collected by means of ten semi-structured interviews. Both the data collection and the qualitative data analysis followed a stepwise approach, including continuous peer review and careful documentation of the decisions. RESULTS: The main findings illustrate the relevance of the RQA with regard to fostering the quality of CES by connecting to context specific issues, such as gaining support from upper management and to solidify CES services within health care organizations. Based on their participation in the RQA, CES practitioners perceived a number of changes regarding CES in Dutch health care organizations after the RQA: acknowledgement of the relevance of CES for the quality of care; CES practices being more formalized; inspiration for developing new CES-related activities and more self-reflection on existing CES practices. CONCLUSIONS: The evaluation of the RQA shows that this method facilitates an open learning process by actively involving CES practitioners and their concrete practices. Lessons learned include that "servant leadership" and more intensive guidance of RQA participants may help to further enhance both the critical dimension and the learning process within RQA.

Volcanic glass properties from 1459 C.E. volcanic event in South Pole ice core dismiss Kuwae caldera as a potential source.

A large volcanic sulfate increase observed in ice core records around 1450 C.E. has been attributed in previous studies to a volcanic eruption from the submarine Kuwae caldera in Vanuatu. Both EPMA-WDS (electron microprobe analysis using a wavelength dispersive spectrometer) and SEM-EDS (scanning electron microscopy analysis using an energy dispersive spectrometer) analyses of five microscopic volcanic ash (cryptotephra) particles extracted from the ice interval associated with a rise in sulfate ca. 1458 C.E. in the South Pole ice core (SPICEcore) indicate that the tephra deposits are chemically distinct from those erupted from the Kuwae caldera. Recognizing that the sulfate peak is not associated with the Kuwae volcano, and likely not a large stratospheric tropical eruption, requires revision of the stratospheric sulfate injection mass that is used for parameterization of paleoclimate models. Future work is needed to confirm that a volcanic eruption from Mt. Reclus is one of the possible sources of the 1458 C.E. sulfate anomaly in Antarctic ice cores.