Understanding How Bereaved Parents Cope With Their Grief to Inform the Services Provided to Them.

Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents' individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents' relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.

Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer.

BACKGROUND: There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a 'Train-the-Trainer' model. METHODS/DESIGN: In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. DISCUSSION: Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.

Assessing a faculty development workshop in narrative medicine.

BACKGROUND: Narrative medicine is increasingly popular in undergraduate medical curricula. Moreover, although faculty are expected to use narrative approaches in teaching, few faculty development learning activities have been described. In addition, data on the impact of faculty development initiatives designed to teach narrative are limited, and there is a paucity of tools to assess their impact. AIMS: To assess the impact and outcomes of a faculty development workshop on narrative medicine. METHODS: Two groups of clinical teachers were studied; one group had already attended a half-day narrative medicine workshop (N = 10) while the other had not yet attended (N = 9). Both groups were interviewed about their uses of narrative in teaching and practice. Additionally, the understanding of a set of narrative skills was assessed by first viewing a video of a narrative-based teaching session followed by completion of an 18-item assessment tool. RESULTS: Both groups reported that they used narrative in both their teaching and clinical practice. Those who had attended the workshop articulated a more nuanced understanding of narrative terms compared to those who had not yet attended. CONCLUSION: This study is one of the first to describe measureable impacts of a faculty development workshop on narrative medicine.

Mindful medical practice: An innovative core course to prepare medical students for clerkship.

BACKGROUND: Medical students show a decline in empathy and ethical reasoning during medical school that is most marked during clerkship. We believe that part of the problem is that students do not have the skills and ways of being and relating necessary to deal effectively with the overwhelming clinical experience of clerkship. APPROACH: At McGill University in Montreal, starting in January 2015, we have taught a course on mindful medical practice that combines a clinical focus on the combination of mindfulness and congruent relating that is aimed at giving students the skills and ways of being to function effectively in clerkship. The course is taught to all medical students in groups of 20, weekly for 7 weeks, in the 6 months immediately prior to clerkship, a time when students are very open to learning the skills they need to take effective care of patients. EVALUATION: The course has been well accepted by students as evidenced by their engagement, their evaluations, and their comments in the essays that they write at the end of the course. In a follow-up session at the simulation centre one year later students remember clearly and enact what they were taught in the course. REFLECTION: The next steps will be to conduct a formal evaluation of the effect of our teaching that will involve a combination of qualitative methods to clarify the nature of the impact on our students and a quantitative assessment of the difference the course makes to students' experience and performance in clerkship.

Paediatric palliative care: challenges and emerging ideas.

Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field need to: clearly define the population served; better understand the needs of children with life-threatening conditions and their families; develop an approach that will be appropriate across different communities; provide care that responds adequately to suffering; advance strategies that support caregivers and health-care providers; and promote needed change by cultivating educational programmes. Despite these challenges, advances in paediatric palliative care have been achieved in a short period of time; we expect far greater progress as the field becomes more formalised and research networks are established.

Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.

Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.

Writing for publication in medical education: the benefits of a faculty development workshop and peer writing group.

BACKGROUND: Although educational innovations in medical education are increasing in number, many educators do not submit their ideas for publication. AIMS: The goal of this initiative was to assist faculty members write about their educational innovations. METHOD: Twenty-four faculty members participated in this intervention, which consisted of a half-day workshop, three peer writing groups, and independent study. We assessed the impact of this intervention through post-workshop evaluations, a one-year follow-up questionnaire, tracking of manuscript submissions, and an analysis of curriculum vitae. RESULTS: The workshop evaluations and one-year follow-up demonstrated that participants valued the workshop small groups, self-instructional workbook, and peer support and feedback provided by the peer writing groups. One year later, nine participants submitted a total of 14 manuscripts, 11 of which were accepted for publication. In addition, 10 participants presented a total of 38 abstracts at educational meetings. Five years later, we reviewed the curriculum vitae of all participants who had published or presented their educational innovation. Although the total number of publications remained the same, the number of educationally-related publications and presentations at scientific meetings increased considerably. CONCLUSIONS: A faculty development workshop and peer writing group can facilitate writing productivity and presentations of scholarly work in medical education.

Developing successful workshops: a workshop for educators.

BACKGROUND: Many educators have had little or no preparation in the design, delivery or evaluation of workshops. METHODS: This faculty development intervention consisted of a faculty development workshop on Developing Successful Workshops; a workbook to guide independent study; and peer consultations. Program evaluation included immediate and delayed post-workshop evaluations, tracking of site-specific activities, and assessment of self-perceived efficacy. RESULTS: Participants found the workshop very useful, highlighting the assessment of learner needs, goal-setting, "matching" of objectives to content and methods, and use of a structured framework as most beneficial. Nine months after the intervention, seven of eleven participants had conducted a workshop in their own settings. Self-assessment of skills in workshop design also increased. CONCLUSION: A workshop on Developing Successful Workshops can help participants to understand the principles of workshop design and delivery.

Signs of life and signs of death: brain death and other mixed messages at the end of life.

Brain death is a medical, legal and cultural category constructed to fill an important need created by evolving medical technologies and practices. However, managing life and death via organ transplants and brain death criteria is not without controversy; there remains much confusion and ambivalence in both lay and medical populations regarding both organ donation and the diagnostic category of brain death. By way of a case study of cranial trauma taken from a larger study of bereaved parents, this article discusses how, from a parent's perspective, brain death and organ donation are neither morally nor medically straightforward concepts. The case study presented in this article demonstrates the necessity for more research and clinical training in communication issues regarding brain death and end-of-life care with families in critical care situations.

National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care.

BACKGROUND: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. OBJECTIVES: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. DESIGN: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3-6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. RESULTS: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI] = 1.17-2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI = 1.06-2.11), after adjusting for background variables. CONCLUSION: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.

Participatory research in pediatric palliative care: benefits and challenges.

Participatory research is an approach wherein all parties concerned play an active role throughout the research process, from initial design to the interpretation and dissemination of results. This article reports on two participatory research projects evaluating a new in-home respite program for children requiring pediatric palliative care and their families. Some of the realities, benefits, and challenges resulting from a participatory approach to research in pediatric palliative care are described. The outcomes of these two studies highlight the conclusion that organizations, professionals, volunteers, and family members accompanying the dying benefit from a participatory research method that actively engages their involvement. This approach offers participants the opportunity to voice concerns as well as supports a sense of empowerment. From the researcher's point of view, a participatory process can serve to increase both the social relevancy and impact of the research.

Physician driven variation in the care of children with spinal muscular atrophy type 1.

BACKGROUND: Increasing numbers of families are requesting active supportive management for their child with spinal muscular atrophy type 1 (SMA1), leading to longer survival and greater prevalence of affected children. Strong opinions exist among physicians for and against the provision of care measures prolonging life. OBJECTIVE: To describe current practice in the care of SMA1 in Canada, and explore the factors underlying inter-physician variability. METHODS: A cross-sectional survey of Canadian hospital-based pediatric neurologists and pediatric respirologists was performed in 2015. Odds ratios and 95% confidence intervals were calculated to compare proportions between groups. RESULTS: There was a 54% completion rate (99 physicians). Over half of participants believed that a disease modifying therapy was likely within 10 years. Quebec respirologists were 50 times less likely to offer long-term non-invasive ventilation (NIV) than respirologists in other provinces (OR 50.6, 95% CI 2.4-1075.3), and 20 times less likely to discuss tracheostomy with families (OR 20.4, 95% CI 2.0-211.8). High raters of perceived happiness of affected children were more likely to find NIV an acceptable measure for acute (OR 6.7, 95% CI 1.7-26.0) and chronic (OR 13.7, 95% CI 4.0-46.4) respiratory failure and prophylactic use (OR 5.8, 95% CI 2.2-15.6). CONCLUSION: Physician knowledge, opinions, subjective perception of child happiness, and regional factors, all influence physicians' practices and the shared decision-making process. Parents may not be informed or offered all the services available to their child. Knowledge translation initiatives are needed to enhance SMA1 care. Pediatr Pulmonol. 2017;52:662-668. © 2016 Wiley Periodicals, Inc.

Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study.

BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. METHODS: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs. RESULTS: All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days. INTERPRETATION: Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.

Professional identity formation in medical education for humanistic, resilient physicians: pedagogic strategies for bridging theory to practice.

Recent calls for an expanded perspective on medical education and training include focusing on complexities of professional identity formation (PIF). Medical educators are challenged to facilitate the active constructive, integrative developmental process of PIF within standardized and personalized and/or formal and informal curricular approaches. How can we best support the complex iterative PIF process for a humanistic, resilient health care professional? How can we effectively scaffold the necessary critical reflective learning and practice skill set for our learners to support the shaping of a professional identity?The authors present three pedagogic innovations contributing to the PIF process within undergraduate and graduate medical education (GME) at their institutions. These are (1) interactive reflective writing fostering reflective capacity, emotional awareness, and resiliency (as complexities within physician-patient interactions are explored) for personal and professional development; (2) synergistic teaching modules about mindful clinical practice and resilient responses to difficult interactions, to foster clinician resilience and enhanced well-being for effective professional functioning; and (3) strategies for effective use of a professional development e-portfolio and faculty development of reflective coaching skills in GME.These strategies as "bridges from theory to practice" embody and integrate key elements of promoting and enriching PIF, including guided reflection, the significant role of relationships (faculty and peers), mindfulness, adequate feedback, and creating collaborative learning environments. Ideally, such pedagogic innovations can make a significant contribution toward enhancing quality of care and caring with resilience for the being, relating, and doing of a humanistic health care professional.

Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not. While the circumstances are undisputedly stressful, for some parents benefits can co-occur along with the negative outcomes. This article tests two structural equation models of possible factors that allow these parent caregivers to experience growth in the circumstances. The diagnosis and illness of a child in the context of pediatric palliative care is a very complex experience for parents. The stresses are numerous and life-changing and yet the parents in this research demonstrated growth as measured by the Post Traumatic Growth Inventory. It appears that particular personal resources reflected in personal well-being are a precursor to the process of positive meaning making, which then, in turn, contributes to growth. The path to posttraumatic growth is not a simple one, but this research contributes to further elucidating it.

A faculty development workshop in narrative-based reflective writing.

Narrative approaches are used increasingly in the health professions with a range of objectives. We must acquaint educators with this burgeoning field and prepare them for the incorporation of story-telling in their pedagogical practices. The authors describe a template for a faculty development workshop designed to foster self-reflection through the use of narrative techniques and prepare clinical teachers to deploy such approaches. The design is based on a six-year experience in delivering introductory workshops in narrative approaches to medical teachers. The workshops, which served as a model for the template, have been offered to a total of 92 clinicians being trained to mentor medical students. A generic template is described. It includes a table of core concepts from narrative theory, a set of probing questions useful in a basic technical analysis of texts and a list of initiating prompts for exercises in reflective writing. A workshop organized and deployed using this template is deliverable over a half-day. The model has proven to be feasible and highly valued by participants. It can be adapted for other contexts by educators across the continuum of health professional education.

An office or a bedroom? Challenges for family-centered care in the pediatric intensive care unit.

Although the modern pediatric intensive care unit (PICU) has followed general pediatrics and adopted the family-centered care model, little is known about how families prospectively experience PICU care. The authors' goal was to better understand the experiences of families whose child was hospitalized in a PICU. They conducted a 12-month prospective ethnographic study in a PICU in a tertiary care hospital in a large North American urban center. Data were obtained via participant-observation and formal and informal interviews with 18 families and staff key informants. Findings revealed a disconnect between the espoused model of family-centered care and quotidian professional practices. This divergence emerged in the authors' analysis as a heuristic that contrasts a professional "office" to a sick child's "bedroom." PICU practices and protocols transformed the child into a patient and parents into visitors; issues such as noise, visitation, turf, and privacy could favor staff comfort and convenience over that of the child and family. The authors' discussion highlights suggestions to overcome this divergence in order to truly make the PICU family centered.