A Lasting Impression: Exploring the Meaningfulness of a Singular Moment.

How do we explore the meaning and meaningfulness of a singular event that lives on with us as a lasting impression? What are the initial beginnings and final endings of such living moments? How do we make sense of the significance of events that are so meaningful that they have become a lasting impression. This paper focuses on the phenomenology of such lasting impressions, by drawing on an exemplary anecdote about parental bereavement in newborn intensive care. The phenomenological intent is to determine the depth and magnitude of moments that as healthcare providers we may all too easily miss. As well, the methodological intent is to show how as researchers we can engage in a qualitative manner with empirically obtained experiential material.

Parents' experiences of their children's medical journeys with tracheostomies: A Focus Group Study.

Objectives: Children living with a tracheostomy have among the most complex medical care needs in Canada. The focus of this study was to gain a contemporary understanding of key aspects of these children's medical journeys. Methods: We conducted a qualitative constructivist grounded theory study using semi-structured focus groups with parents whose children are living in the community with a tracheostomy. Parents were recruited from the Stollery Children's Hospital Tracheostomy Clinic, which serves a geographically wide and diverse population. Results: Three focus groups were completed, including a total of 12 participants. Key themes leading up to tracheostomy related to contextual understanding, experiences of inclusion, and perceptions of proportionality. Parents discussed the preparedness for how a tracheostomy would affect their child, their own involvement in recovery, and the education needed for their child's medical care. Navigating hospital units related to inconsistencies in care, accommodations of families' needs, and confidence in care received. Finally, living in the community was the focus of much of the participants' discussions including coping with system-related issues, limited homecare and medical support, cost of care, and connections with the broader community of parents of children with complex medical needs. All themes encircled the family's deeply felt responsibility to care for their child. Conclusions: From both patient- and family-centered care perspectives, there exist individual and systemic issues related to the care delivery for children with a tracheostomy. It is in particular in the community where there is a severe deficiency of support afforded to these children and their families.

Factors Influencing Parental Decision-Making Regarding Analgesia for Children with Musculoskeletal Injury-Related Pain: A Qualitative Study.

OBJECTIVES: To explore and understand parental decision-making relating to acute pain management for their children presenting to the emergency department. STUDY DESIGN: This study employed one-on-one semistructured interviews. Parents of children with acute musculoskeletal injuries were recruited from 3 Canadian pediatric emergency departments. Interviews were conducted via telephone from June 2019 to March 2021. Verbatim transcription and thematic analyses occurred concurrently with data collection, supporting data saturation and theory development considerations. RESULTS: Twenty-seven interviews were completed. Five major themes regarding pain care emerged: (1) my child's comfort is a priority, (2) every situation is unique, (3) opioids only if necessary, (4) considerations when choosing opioids, and (5) pain research is important. Overall, parents were highly comfortable with their assessment of their child's pain. Participants' willingness to use opioid analgesia for their children was primarily dependent on perceptions of injury and pain severity. Opioid-averse and opioid-accepting families had similar considerations when making analgesic decisions but weighed risks and benefits differently. CONCLUSIONS: Parents assess and manage their children's pain globally and multimodally, with comfort being prioritized. For most parents, the desire to relieve their children's pain outweighed concerns of substance use disorder, misuse, and adverse events when making decisions about opioid analgesia for short-term use. These results can inform evidence-based family-centered approaches to co-decision-making of analgesic plans for children with acute pain.

Family perspectives of ex situ heart perfusion.

BACKGROUND: Pediatric patients awaiting a heart transplant have high waitlist mortality. Several strategies have been utilized to decrease waiting times, but a mortality risk still exists. New medical technologies may improve waiting times and associated mortality. Ex situ heart perfusion (ESHP) is one such technology, which can decrease the impact of cold ischemia on the donor heart and allow for a longer out-of-body time. Adoption of such technology in pediatric heart transplantation will require support from end users, including patient and families. The aim of this qualitative study was to report the perspectives of families with experience related to pediatric HTx toward ESHP. METHODS: Semistructured interviews were conducted with 12 parents or guardians of children who were awaiting or received heart transplantation. Interviews were transcribed, and data were analyzed using qualitative content analysis. RESULTS: Participants expressed varied awareness and knowledge of ESHP. Independent of their understanding of ESHP, all purported that ESHP was an excellent idea and that this technology should be implemented in the pediatric population. They did not identify fundamentally different ethical issues or concerns for ESHP being used relative to other medical technologies. Overall, most participants described consent processes for ESHP should be like any other procedure. All agreed that the surgeon should continue to describe the overall health of the donor heart, provide their medical recommendations, and allow families to have the final say. CONCLUSIONS: The concepts described by the parents and guardians are important in moving this novel technology forward. This information will serve the basis for knowledge translation that will provide educational resources to broaden the understanding and reach of ESHP.

Barriers and misconceptions of ex situ heart perfusion in pediatric donation.

BACKGROUND: Despite efforts, pediatric HTx candidates continue to have high waitlist mortality due to limited donor availability. However, there is a significant number of offered hearts not used due to concerns of viability. ESHP is a method for continuous perfusion of the donor heart that allows assessment and extended out-of-body time. It is imperative to understand healthcare stakeholders' perspectives on ESHP for implementation. Therefore, the aims of this qualitative study were to: (1) Explore pediatric stakeholders' perspectives toward ESHP; and (2) Identify barriers to widespread adoption of this technology. METHODS: Virtual focus groups were completed with pediatric HTx healthcare professional stakeholders. Following transcription of audio-recordings, the material was analyzed using content analysis. RESULTS: Four focus groups were completed with 17 participants, representing 12 institutions and three countries. Focus groups revealed varied understanding of both current and potential uses of ESHP. Participants did see the potential benefits of extending out-of-body time for and the ability to evaluate donor heart quality. However, concerns were expressed relating to patient selection, wait-list times, post-HTx outcomes, adverse events, and technical issues. These were felt to be important to understand in order to justify the costs of ESHP and impact on the healthcare system. CONCLUSIONS: This project represents the first qualitative formative evaluation of ESHP in pediatrics. The knowledge gained from stakeholders will form the basis for education initiatives, clinical trial design, and roll-out of new ESHP technologies designed for pediatrics.

Ex situ heart perfusion for optimization of pediatric donor organ utilization: Attitudes and perceptions.

BACKGROUND: Children with heart failure have the highest mortality while awaiting transplantation. Ex situ heart perfusion (ESHP), a method for continuous perfusion of the donor heart, has the potential to improve access to transplant by increasing travel distance between donor and recipient. An adult ESHP device is currently available, but as of yet there is no pediatric device. The aim of this study was to evaluate current knowledge of ESHP among pediatric heart transplant practitioners, define potential barriers, and identify uses of this novel technology. METHODS: An electronic survey was developed to assess perspectives of international pediatric heart transplant stakeholders (n = 68) on ESHP. Select questions were analyzed to evaluate for associations between groups of respondents and patterns of response. RESULTS: Most respondents were familiar but <10% had clinically utilized ESHP. There was optimism that ESHP could decrease waitlist mortality. Respondents were concerned about potential device malfunction and lack of long-term outcomes. There were no differences found in terms of ESHP familiarity among age groups, practitioner center volume, country of work, or discipline. CONCLUSIONS: ESHP has the potential to expand the pediatric heart donor pool and decrease waitlist mortality. More education on outcomes and risks/benefits is needed in order to promote widespread adoption.

Validation of a Wound Tool for Assessment of Surgical Wounds in Infants.

BACKGROUND: Wound assessment is a critical part of the care of hospitalized infants in neonatal intensive care. Early recognition and initiation of appropriate treatment of wounds are imperative to facilitate wound healing and avoid complications such as secondary infection and wound dehiscence. There are, however, no validated tools for assessing surgical wounds in infants. PURPOSE: The aim of this study was to develop and interrogate a tool for the assessment of surgical wounds. Specific aims for the tool included interrater reliability (give a consistent and dependable result independent of user) and test criterion validity (give an accurate assessment of the wound compared with an expert). METHODS: This was an exploratory cohort study involving a structured wound tool applied by nursing staff to 40 surgical wounds. The wounds were also assessed by wound experts (a pediatric wound care nurse and a pediatric surgeon). Comparisons were made to elucidate estimates of reliability and validity. RESULTS: The wound tool demonstrated interrater reliability with intraclass correlation coefficient of 0.775 (95% CI, 0.665-0.862) as well as criterion validity with rank correlation coefficient of 0.55 (95% CI, 0.34-0.76) to 0.71 (95% CI, 0.53-0.88). To obtain 100% sensitivity to distinguish mild from moderate-severe wounds, a low cutoff score was needed. IMPLICATIONS FOR PRACTICE AND RESEARCH: Wound assessment continues to be a subjective exercise, even with the utilization of a tool. Additional research is needed for strategies to support the assessment of surgical wounds in infants. Such tools are needed for future research, particularly when multiple institutions are involved.

Adolescent and Caregiver Perspectives on Living With a Limb Fracture: A Qualitative Study.

BACKGROUND: Fractures occur in up to half of children by age 16 years. After initial emergency care for a fracture, function is universally impaired in children, and impacts extend to the immediate family. Knowledge of expected functional limitations is key to providing proper discharge instructions and anticipatory guidance to families. OBJECTIVES: The primary objective of this study was to understand how changes in functional ability impact youth with fractures. METHODS: We conducted individual, semistructured interviews from June 2019 to November 2020 with adolescents and their caregivers 7 to 14 days following their initial visit to a pediatric emergency department. We used qualitative content analysis methodology; recruitment proceeded until thematic saturation was achieved. Coding and analysis were concurrent with recruitment and interviews. The interview script was modified in an iterative process, to reflect emerging themes. RESULTS: Twenty-nine interviews were completed. The most frequently affected functions were ( a ) showering and hygiene (requiring the most caregiver support), ( b ) sleep (due to pain and cast-related discomfort), and ( c ) exclusion from sports/activities. Many adolescents experienced disruptions to social activities and gatherings. Youth valued independence and took more time to complete tasks, regardless of inconvenience. Both adolescents and caregivers reported feelings of frustration from day-to-day impacts of the injury. Generally, caregivers' perspectives were in keeping with the experiences that adolescents described for themselves. Notable family impacts included "sibling burden," or conflicts that arose when a sibling had to take on extra chores/tasks. CONCLUSIONS: Overall, caregivers' perspectives were congruent with the self-described experiences of adolescents. Key messages for optimized discharge instructions include pain and sleep management, allowing extra time to complete tasks independently, considering impact on siblings, preparing for changes in activities and social dynamics, and normalizing frustration. These themes highlight an opportunity to better tailor discharge instructions for adolescents with fractures.

Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study.

Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.

Alongside: Exploring the Meaningfulness of Significant Moments in Others' Lives Through Observation and Interview.

How do we explore the meaningfulness of others' experiences? What means do we have to access their experiencing of the world? How do we express our understandings of others' experiences of body and place without reducing them to objectification? In this methodological paper, we reflect on how we can gain valuable insights into the lived experiences of others through research activities that are conducted 'alongside' participants. Phenomenological concepts of intentionality and embodiment are considered as we draw on an empirical example of exploring the experiences of hospitalized patients with neurological diseases through observations and interviews. The aim is to unfold alongside as an epistemological stance to explore the meaning of another's lifeworld. We strive to show that personal presence and engagement within this approach contains relational, existential, and aesthetic dimensions worth considering.

Parental Perspectives on Children's Functional Experiences After Limb Fracture: A Qualitative Study.

BACKGROUND: Fractures are a common childhood injury. Although the pain associated with fractures is well described, the related functional impact is less understood. When a child's function is impaired, his or her ability to participate in day-to-day life is restricted. Eighty percent of children with fractures experience compromise in daily function. An in-depth understanding of function can guide emergency department (ED) providers' discharge instructions. OBJECTIVES: Our aim was to report caregivers' perspectives of the functional impact of limb fractures on their children's day-to-day life activities. METHODS: We performed a qualitative study using interviews of caregivers of children (aged 5 to 11 years) who received care for acute, nonoperative long bone fractures in a pediatric ED. Audio-recorded, semistructured telephone interviews were completed 7 to 14 days after the ED visit. Interviews were primarily open ended, including questions targeting areas of function from existing pediatric fracture literature. Qualitative analysis was completed using content analysis. RESULTS: Twenty-five interviews were included in the final analysis. Most of the children were diagnosed with upper extremity fractures, and most participants were mothers. All parents reported a change in their child's function. The most commonly affected areas were sleep, activities of daily living, and play. Play was either self-limited by the child or restricted by the parent. Pain was worse in the first days after discharge. Many children struggled emotionally with functional limitations. All children required help from their parents to perform daily tasks; this required adaptive strategies such as planning, changes to household routine, and missed work. Key concerns from parents included regression in the child's independence and fracture healing and complications. CONCLUSIONS: Function is universally impaired in young children with fractures, significantly affecting family life after discharge. Discharge conversations with families should include pain management, changes to activities of daily living, family routines and play, and expectations for fracture healing.

Doing Phenomenological Research and Writing.

When looking through phenomenology articles in human science and philosophy journals, we may be excused to get the impression that they offer an inconsistent array of phenomenology publications. In this article, we describe three simple but helpful distinctions for determining some order: first, the great foundational publications; second, exegetical publications in the wake of the great works; and third, phenomenological studies done directly on phenomena. Our aim in this article is not to lay claim to phenomenology as a label but rather to discuss how "doing phenomenology directly on the phenomena and the things" means taking up a certain attitude and practicing an attentive awareness to the things of the world as we live and experience them. We propose that engaging in philosophical exegesis and argumentation is not very helpful for analyzing and explicating originary meanings of experiential phenomena. And we show how doing phenomenology directly on the things can be facilitated by a phenomenologically inspired interpretive attitude as well as by a sensitive talent for employing phenomenological examples.

Exploring paediatric residents' perceptions of competency in neonatal intensive care.

Assessment and stabilization of the newborn are expected competencies of trainees graduating from Canadian paediatrics residency training programs. There is limited evidence regarding the optimal approach to training, and whether such competencies are actually achieved by graduates. A national, cross-sectional survey was developed to explore paediatrics residents' self-reported experiences in performing neonatal procedures and resuscitation skills. Survey questions were constructed based on the review of the Royal College of Physicians and Surgeons of Canada objectives of training in paediatrics to include activities necessary in the assessment and stabilization of the newborn. The survey was distributed to residents across Canada. A total of 138 residents from 15 Canadian paediatrics residency training programs completed the survey. A minority of residents (17%) reported independently performing resuscitative skills (positive pressure ventilation, intubation and umbilical line insertion). Of all the different neonatal procedural skills, only lumbar puncture was reported as an activity that residents on average performed independently by senior years of training. Our study showed a direct relationship between the number of completed blocks of Neonatal Intensive Care Unit (NICU) and self-reported experiences in providing NICU resuscitation skills and procedures. We found an inverse relationship between the exposure to cross-cover calls and such experiences. Our study showed that a minority of paediatrics residents self-report evidence of competency in performing neonatal procedures and resuscitation skills. As residency programs are transitioning toward competence-based education, it is important to gain more insights with respect to strengths, deficiencies and opportunities for paediatrics residency training in terms of NICU experiences.

Needs assessment of ethics and communication teaching for neonatal perinatal medicine programs in Canada.

OBJECTIVE: To explore ethics education needs in Canadian Neonatal Perinatal Medicine (NPM) training programs. METHODS: A retrospective review of NPM trainees' performance at the National NPM Objective Structured Clinical Examination (OSCE) was undertaken for 2012 to 2017 and two distinct cross-sectional online surveys were carried out. One survey targeted recently graduated neonatologists (RGNs) who completed 2 years' training in a Canadian NPM program between 2010 and 2015; the other survey was sent to Canadian NPM training program directors (PDs). The domains of interest were: perception of education, ethics and communication topics, educational strategies, assessment of trainees' competencies, and barriers to neonatal ethics education. RESULTS: NPM trainees generally performed less well in stations involving ethics and communication relative to other domains on the National OSCE. Forty-seven RGNs (44.3%) and 12 PDs (92.3%) completed the survey. Over 90% of PDs and RGNs agreed on the importance of training in ethics and communication. Both groups highly valued training on topics related to communication. Preferred teaching strategies were experiential: observation and feedback. PDs mentioned the importance of using validated tools to regularly and formally assess trainees. They recognized challenges in regard to financial resources, physical space, and faculty training in patient-physician communication. CONCLUSIONS: National OSCE results indicate the need to improve neonatal ethics and communication training in Canadian NPM programs. RGNs and PDs identified important topics, as well as teaching and evaluation strategies. These results can be used to develop a training program for ethics and communication in NPM.

Qualitative Analysis of Pediatric Patient and Caregiver Perspectives After Recent Diagnosis With Inflammatory Bowel Disease.

PURPOSE: A diagnosis of a chronic illness is a life-altering experience for a child and his or her family. The purpose of this study was to elicit children and parent perspectives following a diagnosis of Inflammatory Bowel Disease (IBD). DESIGN & METHODS: A qualitative description design was employed. Eighteen patients were recruited from a Pediatric IBD Clinic in Western Canada. Interviews were used to gather perceptions, opinions, and attitudes from children and their parents. Transcriptions of the interviews were analyzed using a qualitative content analysis. RESULTS: Four themes were identified: perspective of diagnosis, roles in care and decision-making, sharing the diagnosis, and treating the disease. Children and parents expressed varied emotions in response to diagnosis. Families articulated the desire to become more active members in the decision-making process on treatment choices. While using conventional medical therapy was seen as an appropriate choice for short-term therapy, many parents hoped that more non-conventional and alternative therapies could be used in the future. CONCLUSION: Healthcare providers need to provide excellent education on the disease process, treatment options, and the use of CAM therapy in IBD, while at the same time supporting children and parent's voices in treatment decisions. PRACTICE IMPLICATIONS: Improvement strategies need to be implemented to allow families to feel that they have a voice when making decisions regarding treatment options. Families need to be educated and supported on the use of CAM therapies in IBD.

Exploring the transition into practice of general paediatricians from a Canadian residency program.

BACKGROUND: Paediatric training programs are committed to graduating paediatricians able to function independently in professional practice. The focus of this study was to gain understanding of a training program's strengths and deficiencies, while also exploring new methods to aid in transitioning trainees into practice. METHOD: Using the CanMEDS framework, semi-structured focus groups were conducted with recently graduated paediatricians. Data were analyzed using qualitative content analysis. RESULTS: Three focus groups were completed, including a total of nine participants. Key themes were identified pertaining to CanMEDS roles. Particular strengths were found in medical expert for managing acute illnesses, communicator for engaging in difficult conversations, and health advocate in responding to diverse patient populations. Relative deficits were recognized in collaborator for connecting patients with community services, leader related to practice development and management, and scholar for cultivating critical appraisal. Opportunities for training program growth included ensuring community exposures were timely and varied, engaging additional community preceptors in training and giving appropriate expectations and mentoring to trainees to develop as scholars. CONCLUSIONS: Educators need to be mindful of the exposures that trainees receive in residency. New graduates may also ultimately benefit from mentorship in the community or ongoing contact with their past training program.

Talking with caregivers of children living in the community with ventricular assist devices.

A VAD is a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, a VAD is used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or a destination therapy. The goal of this qualitative study was to explore the perspectives of family and professional caregivers of children who are supported by VADs in outpatient settings. Semi-structured interviews were conducted with 22 caregivers of school-aged children discharged home on VAD support. Interviews were transcribed, and data were analyzed using qualitative content analysis. Caregivers identified issues facing children on VAD support in the contexts of home, school, and other childhood places including being physically connected to a device; experiencing changes; living a medical life; negotiating restrictions; cost of care; family, kinship, and community; and, present and future living. While a child with a VAD may have much in common with other medically complex children, the technological complications and risks of living with a VAD are uniquely identified by caregivers as an issue, especially when considering the way that children with a VAD are connected to their device-implanted yet exterior, mobile yet restricted, and autonomous yet dependent.

Canadian Guidelines for Controlled Pediatric Donation After Circulatory Determination of Death-Summary Report.

OBJECTIVES: Create trustworthy, rigorous, national clinical practice guidelines for the practice of pediatric donation after circulatory determination of death in Canada. METHODS: We followed a process of clinical practice guideline development based on World Health Organization and Canadian Medical Association methods. This included application of Grading of Recommendations Assessment, Development, and Evaluation methodology. Questions requiring recommendations were generated based on 1) 2006 Canadian donation after circulatory determination of death guidelines (not pediatric specific), 2) a multidisciplinary symposium of national and international pediatric donation after circulatory determination of death leaders, and 3) a scoping review of the pediatric donation after circulatory determination of death literature. Input from these sources drove drafting of actionable questions and Good Practice Statements, as defined by the Grading of Recommendations Assessment, Development, and Evaluation group. We performed additional literature reviews for all actionable questions. Evidence was assessed for quality using Grading of Recommendations Assessment, Development, and Evaluation and then formulated into evidence profiles that informed recommendations through the evidence-to-decision framework. Recommendations were revised through consensus among members of seven topic-specific working groups and finalized during meetings of working group leads and the planning committee. External review was provided by pediatric, critical care, and critical care nursing professional societies and patient partners. RESULTS: We generated 63 Good Practice Statements and seven Grading of Recommendations Assessment, Development, and Evaluation recommendations covering 1) ethics, consent, and withdrawal of life-sustaining therapy, 2) eligibility, 3) withdrawal of life-sustaining therapy practices, 4) ante and postmortem interventions, 5) death determination, 6) neonatal pediatric donation after circulatory determination of death, 7) cardiac and innovative pediatric donation after circulatory determination of death, and 8) implementation. For brevity, 48 Good Practice Statement and truncated justification are included in this summary report. The remaining recommendations, detailed methodology, full Grading of Recommendations Assessment, Development, and Evaluation tables, and expanded justifications are available in the full text report. CONCLUSIONS: This process showed that rigorous, transparent clinical practice guideline development is possible in the domain of pediatric deceased donation. Application of these recommendations will increase access to pediatric donation after circulatory determination of death across Canada and may serve as a model for future clinical practice guideline development in deceased donation.

The Ventricular Assist Device in the Life of the Child: A Phenomenological Pediatric Study.

What is it like for a child to live with an artificial heart? The use of some medical therapies in children requires developmental considerations, is associated with psychosocial consequences, and calls for ethical sensitivities. A critical case is the ventricular assist device (VAD), a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, the device can be used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or as a destination therapy. While the mechanical-technical operation of the VAD is well understood, the clinical-technical aspects of young people living with this device are largely unexplored. Drawing on interviews of school-aged children, the aim of this phenomenological study is to explore how a VAD may structure or condition a child's meaningful experience of their world outside the hospital. The driveline of an implanted VAD is the peripheral attachment, extruding through the skin to connect the controller-power supply. The materiality of the device may be interruptive, restrictive, and disturbing to the psycho-physical being and sense of self-identity of the child as a child. And while a child equipped with a VAD is not necessarily conspicuous among other children, the child may experience the device as an exposing presence, while living with the worry of a caregiver who takes on the role not simply of parent but of watchful health professional. A phenomenological understanding of the VAD should assist parents and caregiving health professionals knowing how to deal with specific issues arising in the life of the VAD child.