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.

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.

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.

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.

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.

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.

Developing a 'moral compass tool' based on moral case deliberations: A pragmatic hermeneutic approach to clinical ethics.

Although moral case deliberation (MCD) is evaluated positively as a form of clinical ethics support (CES), it has limitations. To address these limitations our research objective was to develop a thematic CES tool. In order to assess the philosophical characteristics of a CES tool based on MCDs, we drew on hermeneutic ethics and pragmatism. We distinguished four core characteristics of a CES tool: (a) focusing on an actual situation that is experienced as morally challenging by the user; (b) stimulating moral inquiry into the moral concepts, questions and routines in the lived experience of the CES tool user; (c) stimulating moral learning by exploring other perspectives; and (d) incorporating contextual details. We provide an example of a CES tool developed for moral dilemmas over client autonomy. Our article ends with some reflections on the normativity of the CES tool, other application areas and the importance of evaluation studies of CES tools.

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.

Fostering positive weight-related conversations between health care professionals, children, and families: Development of a knowledge translation Casebook and evaluation protocol.

BACKGROUND: Health care professionals (HCPs) must communicate with children and families about weight management in a sensitive and nonstigmatizing manner. However, HCPs receive little training in weight-related communication and have requested resources, but these are scarce. This article details the development process of a knowledge translation (KT) Casebook and outlines the proposed protocol for its implementation and evaluation. METHODS: Guided by the knowledge-to-action cycle, a KT Casebook aimed at HCPs integrated findings from a comprehensive scoping review with experiential and contextual evidence gathered through stakeholder workshops to provide guidance to HCPs communicating with children and families around weight-related issues. It was structured around five questions: (a) Who should participate in weight-related discussions? (b) When and how should the topic of weight be broached? (c) What terminology should be used? (d) How can HCPs enhance family engagement in weight-related discussions? (e) What specific communication techniques have been recommended? Checklists, evidence summaries, case studies, sentence starters, simulations, and other resources were clustered under each question. A dissemination strategy was developed using KT best practices and a pilot evaluation protocol designed. RESULTS: The Casebook was launched in November 2017 and has been presented at pediatric rehabilitation and obesity conferences. A communication strategy targeted multidisciplinary experts and organizations with weight management within their scope of practice. These efforts have resulted in 2,497 downloads across five countries to date. CONCLUSIONS: A practical and engaging KT Casebook was created to help foster positive weight-related conversations between HCPs, children, and their families. A pilot implementation study examining the impact of the Casebook on clinical practice will provide critical information for embedding the Casebook in a range of health care settings.

Exploring the Role of Physiotherapists in the Care of Children with Autism Spectrum Disorder.

Aims: Children with autism spectrum disorder (ASD) are less likely to participate in physical activity than their age related peers, and it has been suggested that physiotherapists (PT) could potentially facilitate their participation. Currently, no research has examined PTs' potential role in enhancing physical activity (PA) participation. The purpose of this qualitative study was to examine PTs experiences and perspectives of working with children with ASD, and to explore potential directions for PTs to potentially increase PA. Methods: Ten pediatric PTs in Canada were interviewed, and data were analyzed using thematic analysis. Results: Three themes were identified: the role of PT, perceived lack of expertise, confidence and training, and structural and systemic barriers. The accounts highlight the social and institutional complexity and constraints in PTs potential promotion of PA for children with ASD. Participants supported a primarily consultative role whereby PTs could educate and partner with parents, teachers, and community service providers to enhance gross motor development and individualize PA needs. Conclusions: These findings indicate how PTs might be involved in enhancing PA among children with ASD.

Does a picture speak louder than words? The role of infographics as a concussion education strategy.

Knowledge gaps exist regarding how to best educate audiences about concussion. Knowledge translation (KT) plays a critical role in how information is shared. In the field of concussion, infographics are becoming a popular KT strategy for synthesising and sharing information. Study objectives were to explore how infographics enhance concussion knowledge, infographic use and preferences across various stakeholders, and to determine their utility as a KT strategy. Six infographics were created to provide concussion information in a user-friendly and accessible format. A prospective design using a self-developed survey was conducted. Data were collected from youth (n = 78) and adults (n = 88) including students, teachers and healthcare professionals. Descriptive statistics exored perceived knowledge acquisition and infographic use. Thematic analysis of written feedback provided insight on participant responses. Participants identified that the infographics met their knowledge needs (91%) and provided them with new knowledge (87%). Participants also identified that they intend to use the infographics to build their knowledge (89%) and educate others (55%). Enhancement opportunities included incorporating graphics that appeal to different audiences and sharing the lived experiences of individuals who have a concussion. This study demonstrates the potential impact of infographics as a KT strategy that meets the knowledge needs of many audiences.

Integrative Clinical Ethics Support in Gender Affirmative Care: Lessons Learned.

Clinical ethics support (CES) for health care professionals and patients is increasingly seen as part of good health care. However, there is a key drawback to the way CES services are currently offered. They are often performed as isolated and one-off services whose ownership and impact are unclear. This paper describes the development of an integrative approach to CES at the Center of Expertise and Care for Gender Dysphoria (CEGD) at Amsterdam University Medical Center. We specifically aimed to integrate CES into daily work processes at the CEGD. In this paper, we describe the CES services offered there in detail and elaborate on the 16 lessons we learned from the process of developing an integrative approach to CES. These learning points can inform and inspire CES professionals, who wish to bring about greater integration of CES services into clinical practice.

Moral Challenges in Transgender Care: A Thematic Analysis Based on a Focused Ethnography.

Treatment teams providing transgender-affirming medical care are inherently faced with various kinds of moral and ethical dilemmas and questions, which are becoming even more pressing due to increasing treatment numbers and public attention for transgender care. Little is known about what kinds of moral and ethical challenges manifest in clinical practice. The aim of the present research was to map the moral and ethical challenges of healthcare professionals working in a specialized multidisciplinary transgender care center. Over a period of 7 months, during a focused ethnographic study, data were collected through participant observation of multidisciplinary team meetings, observation of individual psychodiagnostic assessment sessions with clients, and analysis of transcripts and reports of a series of moral case deliberations. A thematic content analysis of the data identified various implicit and explicit moral and ethical challenges around the following six themes: (1) assessing eligibility; (2) content of treatment; (3) sequential order of the treatment steps; (4) role of the clinical guidelines; (5) differing notions regarding gender identity, and (6) decision-making process. Our research provides a detailed insight into the way healthcare professionals experience these moral and ethical challenges and how they are related to (local) guidelines, the multidisciplinary character of GD care, and its inherent implicit and explicit gender norms. Our findings suggest that good transgender care may profit from continuous multidisciplinary deliberation of and sensitivity toward the normative dimension of transgender care. The paper ends with recommendations for ethics support mechanisms in transgender care.

Clinician and educator experiences of facilitating students' transition back to school following acquired brain injury: A qualitative systematic review.

OBJECTIVE: Transition back to school following paediatric acquired brain injury (ABI) is complex. It must be facilitated by healthcare and educational professionals, who need to work together to return affected students to learning. This qualitative systematic review synthesizes qualitative studies on clinicians' and educators' experiences of facilitating hospital-to-school transitions following ABI. METHODS: A search was conducted using seven electronic databases (CINAHL, Cochrane, EMBASE, ERIC, HealthSTAR, MEDLINE, PsycINFO) and key resources were manually reviewed. Publications selected for inclusion had a sample of clinicians and/or educators who worked with children/youth with ABI and focused on hospital-to-school transition processes from the professionals' perspectives. RESULTS: The initial search returned 4761 publications. Of those, 10 met the inclusion criteria. Six main themes emerged across those publications. Three related to transition barriers: (1) lack of training and education regarding transition processes; (2) lack of communication between stakeholders; and (3) lack of preparation for transition. The remaining three presented items that both facilitate and/or impede the transition process: (4) supports available; (5) linking agents; and (6) policies and procedures guiding transition. CONCLUSIONS: Clinicians and educators called for collaboration and communication to support students' transition back to school. Further inquiry into designated linking agents and policies that facilitate hospital-to-school transitions for students following ABI may address these lacking areas.

In vivo biocompatibility of two PEG/PAA interpenetrating polymer networks as corneal inlays following deep stromal pocket implantation.

This study compared the effects of implanting two interpenetrating polymer networks (IPNs) into rabbit corneas. The first (Implant 1) was based on PEG-diacrylate, the second (Implant 2) was based on PEG-diacrylamide. There were inserted into deep stromal pockets created using a manual surgical technique for either 3 or 6 months. The implanted corneas were compared with normal and sham-operated corneas through slit lamp observation, anterior segment optical coherence tomography, in vivo confocal scanning and histological examination. Corneas with Implant 1 (based on PEG-diacrylate) developed diffuse haze, ulcers and opacities within 3 months, while corneas with Implant 2 (based on PEG-diacrylamide) remained clear at 6 months. They also exhibited normal numbers of epithelial cell layers, without any immune cell infiltration, inflammation, oedema or neovascularisation at post-operative 6 month. Morphological studies showed transient epithelial layer thinning over the hydrogel inserted area and elevated keratocyte activity at 3 months; however, the epithelium thickness and keratocyte morphology were improved at 6 months. Implant 2 exhibited superior in vivo biocompatibility and higher optical clarity than Implant 1. PEG-diacrylamide-based IPN hydrogel is therefore a potential candidate for corneal inlays to correct refractive error.

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.

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.

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.

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.