Supporting children with disabilities at school: implications for the advocate role in professional practice and education.

PURPOSE: School settings are a common practice context for rehabilitation professionals; health advocacy is a common and challenging practice role for professionals in this context. This study explored how pediatric practitioners advocate for children with disabilities at school. Specifically, we examined everyday advocacy in the context of school-based support for children with disabilities. METHOD: Our theoretical framework and methodological approach were informed by institutional ethnography, which maps and makes visible hidden social coordinators of work processes with a view to improving processes and outcomes. We included families, educators, and health/rehabilitation practitioners from Ontario. Of the 37 consented informants, 27 were interviewed and 15 observed. Documents and texts were collected from the micro-level (e.g. clinician reports) and the macro-level (e.g. policies). RESULTS: Pediatric practitioners' advocacy work included two main work processes: spotlighting invisible disabilities and orienteering the special education terrain. Practitioners advocated indirectly, by proxy, with common proxies being documents and parents. Unintended consequences of advocacy by proxy included conflict and inefficiency, which were often unknown to the practitioner. CONCLUSIONS: The findings of this study provide practice-based knowledge about advocacy for children with disabilities, which may be used to inform further development of competency frameworks and continuing education for pediatric practitioners. The findings also show how everyday practices are influenced by policies and social discourses and how rehabilitation professionals may enact change. Implications for Rehabilitation Rehabilitation professionals frequently perform advocacy work. They may find it beneficial to perform advocacy work that is informed by overarching professional and ethical guidelines, and a nuanced understanding of local processes and structures. Competency frameworks and education for pediatric rehabilitation professionals may be improved by: encouraging professionals to consider how their practices, including their written documents, may affect parental burden, (mis)interpretation by document recipients, and potential unintended consequences. Policies and texts, e.g. privacy legislation and the Diagnostic and Statistical Manual (DSM), influence rehabilitation professionals' actions and interactions when supporting children with disabilities at school. An awareness of the influence of policies and texts may enable practitioners to work more effectively within current systems when supporting individuals with disabilities.

An institutional ethnography inquiry of health care work in special education: a research protocol.

BACKGROUND: Special education for children with chronic health conditions or disabilities requires the integration of health care work with education. This phenomenon occurs in an understudied and challenging context for integrated care despite policies and protocols that outline work processes in this context. We are interested in an approach to inquiry that will allow us to address gaps in current literature and practices in integrated care, and move towards informing policy. STUDY DESIGN AND DATA COLLECTION METHODS: Institutional ethnography is an approach to inquiry that maps the actualities of what individuals do at an everyday local level, while examining this work activity in relation to the sociopolitical context. It has been used to change policy and local practice by highlighting disjunctures between policy and actuality. We are adopting institutional ethnography and its three common methods of data collection: document collection, interviews, and observation/shadowing. Informants to this inquiry are chosen from school-based teams, family-centred units and constellations of clinical professionals. METHODS OF ANALYSIS: We are following work processes, verbally and visually mapping what is done and by whom. It is important to note that work includes 'unofficial' work, including the work of families and others who may not be assigned an official work role in a policy or protocol. The mediating role of texts in work processes is also being mapped in order to link the local work to the high-level social coordinators. To begin, analysis focuses on local, or micro-level, work processes; next, analysis identifies and explains the macro-level coordination of the local work (i.e. social and political structures). CONCLUSION: A primary outcome of this study will be the creation of verbal and visual maps that demonstrate the social organisation of work processes occurring in the health care-special education interface. These maps will make invisible work visible, highlight disjunctures between policy and practice and identify opportunities for change. They will be useful for critical knowledge translation purposes, providing parents and professionals with an awareness of how their individual work fits in to the larger picture of integrating health care work in special education.

Representing complexity well: a story about teamwork, with implications for how we teach collaboration.

OBJECTIVES: In order to be relevant and impactful, our research into health care teamwork needs to better reflect the complexity inherent to this area. This study explored the complexity of collaborative practice on a distributed transplant team. We employed the theoretical lenses of activity theory to better understand the nature of collaborative complexity and its implications for current approaches to interprofessional collaboration (IPC) and interprofessional education (IPE). METHODS: Over 4 months, two trained observers conducted 162 hours of observation, 30 field interviews and 17 formal interviews with 39 members of a solid organ transplant team in a Canadian teaching hospital. Participants included consultant medical and surgical staff and postgraduate trainees, the team nurse practitioner, social worker, dietician, pharmacist, physical therapist, bedside nurses, organ donor coordinators and organ recipient coordinators. Data collection and inductive analysis for emergent themes proceeded iteratively. RESULTS: Daily collaborative practice involves improvisation in the face of recurring challenges on a distributed team. This paper focuses on the theme of 'interservice' challenges, which represent instances in which the 'core' transplant team (those providing daily care for transplant patients) work to engage the expertise and resources of other services in the hospital, such as those of radiology and pathology departments. We examine a single story of the core team's collaboration with cardiology, anaesthesiology and radiology services to decide whether a patient is appropriate for transplantation and use this story to consider the team's strategies in the face of conflicting expectations and preferences among these services. CONCLUSIONS: This story of collaboration in a distributed team calls into question two premises underpinning current models of IPC and IPE: the notion that stable professional roles exist, and the ideal of a unifying objective of 'caring for the patient'. We suggest important elaborations to these premises as they are used to conceptualise and teach IPC in order to better represent the intricacy of everyday collaborative work in health care.

Exploring the therapeutic power of narrative at the end of life: a qualitative analysis of narratives emerging in dignity therapy.

OBJECTIVE: To understand the therapeutic effect of a narrative intervention, specifically dignity therapy, in patients at the end-of-life. To examine the thematic dimensions and shared narrative features of the stories that emerge in dignity therapy and theorise their relationship to the intervention's clinical impact. DESIGN: Resident physicians, as part of an educational intervention, co-administered the dignity therapy protocol with the principal investigator. Interviews were transcribed, edited, and then, within a week, read back to the patient and provided as a document for the patient to keep. A constant comparative approach was taken to identify narratives and thematic patterns. PARTICIPANTS: 12 Patients at the end-of-life were administered dignity interviews by 12 resident physicians, accompanied by the principal investigator. SETTING: Palliative care settings in two University of Toronto academic hospitals. RESULTS: Three narrative types emerged, each containing several themes. Evaluation narratives create a life lived before illness, with an overarching theme of overcoming adversity. Transition narratives describe a changing health situation and its meanings, including impact on family and on one's world view. Legacy narratives discuss the future without the patient and contain the parables and messages to be left for loved ones. CONCLUSIONS: While the interview protocol guides patients' responses, the commonality of narrative structures across interviews suggests that patients draw on experiences with two familiar genres: the eulogy and the medical interview, to create a narrative order during the chaos of dying. The dignity interview's resonance with these genres appears to facilitate a powerful, and perhaps unexpected sense of agency.

Routine and adaptive expert strategies for resolving ICT mediated communication problems in the team setting.

CONTEXT: The use of information and communication technologies (ICTs) for supporting interprofessional communication is becoming increasingly common in health care. However, little research has explored how ICTs affect interprofessional communication, or how novices are trained to be effective interprofessional ICT users. This study explores the interprofessional communication strategies of nurses and doctors (trainees and experts) when their communications were mediated by a specific ICT: an electronic patient record (EPR). METHODS: A total of 72 doctors and nurses participated in this 8-month study on a paediatric in-patient ward. Eighty hours of non-participant observations and 20 semi-structured interviews were conducted. All data were rendered anonymous prior to analysis. Using a constructivist grounded theory approach, one researcher read and analysed all data recursively. As emergent themes were identified, exemplary portions of the data were discussed with three additional researchers to resolve discrepancies and confirm the coding structure. Expertise literatures informed the final analyses. RESULTS: Three interprofessional communication strategies were identified: (i) all participants routinely formulated 'workarounds' to circumvent problematic EPR-mediated communications; (ii) workarounds were classifiable as instances of Abandoning, Forcing or Submitting to the EPR, and (iii) novices learned workaround strategies through an informal curriculum, but they did not learn to manage the interprofessional effects of these workarounds. CONCLUSIONS: Trainees relied on workarounds as simplified routines, demonstrating routine expertise. Staff members, demonstrating adaptive expertise, used workarounds as part of a broader network of people and communication tools. Explicit training regarding this network and the ways in which workarounds conceal this network may help trainees develop adaptive expertise.

Attending to audience: comparing optometry student talk with and about patients.

We explored mediating concepts that affect clinical novices shifting between their talk with patients in eye examinations and their talk about patients in case presentations (nCPs). In a Canadian optometry teaching clinic, patient 'chief concern or request', 'illness experience', and 'management' utterances were observed in ten eye examinations and nCPs. Twenty-three participants (8 students, 5 instructors, and 10 patients) were observed; 22 were subsequently interviewed. Of 10 nCPs, the 'chief concern or request' was absent in four, the 'illness experience' was incomplete or absent in 9 and 5 of 19 (35.7%) 'management' topics were not discussed with patients. During eye exams, 17 of 31 (54.8%) 'management' discussions with patients were not discussed with instructors during nCPs. Instructional 'scaffolding' (Bruner and Sherwood in Play: its role in development and evolution, p. 280, 1976) appeared limited regarding talk with and about patients. The limited and recontextualized reporting of patient concerns and experiences in nCPs represented lost opportunities to provide and learn patient-centered care. While Goffman's (The presentation of the self in everyday life, p. 114, 1969) 'front stage' performances and Mishler's (The discourse of medicine: dialectics of medical interviews, p. 14, 1984) healthcare 'voices' suggest separate worlds of talk before patients and instructors, we found these worlds were not wholly separate for neophyte speakers. Mediating concepts that influence clinical novices shifting their performances before their audiences, included: (1) pedagogical inconsistencies, (2) incompatible values associated with talk, (3) discordance between patient care and student education, (4) time limitations for teaching, and (5) insufficient instructional 'scaffolding' about talk.

Balancing patient care and student education: learning to deliver bad news in an optometry teaching clinic.

Learning to counsel patients in a teaching clinic or hospital occurs in the presence of the competing agendas of patient care and student education. We wondered about the challenges that these tensions create for clinical novices learning to deliver bad news to patients. In this preliminary study, we audio-taped and transcribed the interviews of seven senior optometry students and six optometrist instructors at a Canadian optometry teaching clinic. The participants described their experiences in learning to deliver bad news. Using a grounded theory approach, our analysis was informed by situated learning and activity theory. Optometry students received formal classroom training regarding how to deliver bad news, including exposure to the medically-based six-step SPIKES protocol (Baile et al. The Oncologist, 5, 302-311, 2000). Yet, application of this protocol to the teaching clinic was limited by the lack of exposure most instructors had received to this strategy. Determinants of the students' complex learning process during their clinical apprenticeship, included: (i) knowing one's place, (ii) knowing one's audience, (iii) knowing through feedback, and (iv) knowing who speaks. The experiences of these participants pointed toward the need for: (1) more instructional "scaffolding" (Bruner and Sherwood Play: Its role in development and evolution, p. 280, 1976) in the clinical setting when the learning task is complex, and (2) explicit discussions about the impacts that unfold when the activities of patient care and student education overlap. We reflect on the possible consequences to student education and patient care in the absence of these changes.

Interprofessional communication and medical error: a reframing of research questions and approaches.

Progress toward understanding the links between interprofessional communication and issues of medical error has been slow. Recent research proposes that this delay may result from overlooking the complexities involved in interprofessional care. Medical education initiatives in this domain tend to simplify the complexities of team membership fluidity, rotation, and use of communication tools. A new theoretically informed research approach is required to take into account these complexities. To generate such an approach, we review two theories from the social sciences: Activity Theory and Knotworking. Using these perspectives, we propose that research into interprofessional communication and medical error can develop better understandings of (1) how and why medical errors are generated and (2) how and why gaps in team defenses occur. Such complexities will have to be investigated if students and practicing clinicians are to be adequately prepared to work safely in interprofessional teams.

The rhetoric of patient voice: reported talk with patients in referral and consultation letters.

Referral and consultation letters are written to enable the exchange of patient information and facilitate the trajectory of patients through the healthcare system. Yet, these letters, written about yet apart from patients, also sustain and constrain professional relationships and influence attitudes towards patients. We analysed 35 optometry referral letters and 35 corresponding ophthalmology consultation letters for reported 'patient voice' coded as 'experience' or 'agenda' and we interviewed 15 letter writers (eight optometry students, six optometrists, and one community ophthalmologist). There were 80 instances of reported 'patient voice' in 35 letters. The majority (68%) of the instances occurred in referral letters, likely due to differences in both 'letter function' and 'professional stance.' Reported 'patient voice' occurred predominantly as 'experience' (81%) rather than 'agenda' instances. Letters writers focused on their readers' needs, thus a biomedical voice dominated the letters and instances of reported 'patient voice' were recontextualized for the professional audience. While reporting 'patient voice' was not the norm in these letters, its inclusion appeared to accomplish specific work: to persuade reader action, to question patient credibility, and to highlight patient agency. These letter strategies reflect professional attitudes about patients and their care.

Working off the record: physicians' and nurses' transformations of electronic patient record-based patient information.

BACKGROUND: Electronic patient records (EPRs) are increasingly being used in health care, but little is known about how EPR-based patient information is used in daily care activities, nor about its potential influence on novice training. METHOD: Seventy-two physicians and nurses participated in an eight-month study on a single pediatric ward. Eighty hours of nonparticipant observations and 20 interviews were conducted. Data were analyzed using constructivist grounded theory and visual rhetoric. RESULTS: Three main features of participant interactions with EPR-based information were identified: (1) EPR-based information was routinely transformed into paper documents; (2) these transformations were organized by profession-specific guiding principles; and (3) transformation strategies were learned through an informal curriculum. CONCLUSIONS: This study describes how and why health care professionals work around EPR-based patient information, and suggests that an EPR's visual organization may be incompatible with professional activities. The study addresses the socializing implications of these activities, and highlights their educational potential.

What healthcare students do with what they don't know: the socializing power of 'uncertainty' in the case presentation.

Healthcare students learn to manage clinical uncertainty amid the tensions that emerge between clinical omniscience and the 'truth for now' realities of the knowledge explosion in healthcare. The case presentation provides a portal to viewing the practitioner's ability to manage uncertainty. We examined the communicative features of uncertainty in 31 novice optometry case presentations and considered how these features contributed to the development of professional identity in optometry students. We also reflected on how these features compared with our earlier study of medical students' case presentations. Optometry students, like their counterparts in medicine, displayed a novice rhetoric of uncertainty that focused on personal deficits in knowledge. While optometry and medical students shared aspects of this rhetoric (seeking guidance and deflecting criticism), optometry students displayed instances of owning limits while medical students displayed instances of proving competence. We found that the nature of this novice rhetoric was shaped by professional identity (a tendency to assume an attitude of moral authority or defer to a higher authority) and the clinical setting (inpatient versus outpatient settings). More explicit discussions regarding uncertainty may help the novice unlock the code of contextual forces that cue the savvy member of the community to sanctioned discursive strategies.

Tensions in the field: teaching standards of practice in optometry case presentations.

PURPOSE: Professional identity formation and its relationship to case presentations were studied in an optometry school's onsite clinic. METHODS: Eight optometry students and six faculty optometrists were audio-recorded during 31 oral case presentations and the teaching exchanges related to them. Using convenience sampling, interviews were audio-recorded of four of the students and four of the optometrists from the field observations. After transcribing these audio-recordings, the research team members applied a grounded theory method to identify, test, and revise emergent themes. The theme reported herein pertains to communicating standards of practice. RESULTS: Faculty optometrists demonstrated three ways of communicating standards of practice to optometry students during case presentations: Official Way, Our Way, and My Way. Although there were differences between these standards, the rationale for the disparities was rarely explicitly articulated by the instructors to the students. Without this information, the incongruity among the standards was left to the students to interpret on their own. CONCLUSIONS: The risk created by faculty not articulating the rationale underlying standards of practice was that students misinterpreted the optometrists' ways as idiosyncratic. Thus, opportunities were missed in the educational setting to assist students in making responsible decisions, locating their position in practice, and shaping their professional identity. Competing responsibilities of patient care and student education left instructors with little time to articulate rationale for standards of practice. Therefore, educators must reflect on innovative ways to bring into relief the logic behind their actions when working with novices.