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.

Tracheostomy and long-term invasive ventilation decision-making in children: A scoping review.

An increasing number of children are surviving critical illnesses requiring tracheostomy/long-term ventilation (LTV). This scoping review seeks to collate the available evidence on decision-making for tracheostomy/LTV in children. Systematic searches of electronic databases and websites were conducted for articles and reports. Inclusion criteria included: (1) children 0-18 years old; (2) described use of tracheostomy or tracheostomy/LTV; and (3) information on recommendations for tracheostomy decision-making or decision-making experiences of family-caregivers or health care providers. Articles not written in English were excluded. Of the 4463 records identified through database search and other methods, a total of 84 articles, 2 dissertations, 1 book chapter, 3 consensus statement/society guidelines, and 8 pieces of grey literature were included. Main thematic domains identified were: (1) legal and moral standards for decision-making; (2) decision-making models, roles of decision-makers, and decisional aids towards a shared decision-making model; (3) experiences and perspectives of decision-makers; (4) health system and society considerations; and (5) conflict resolution and legal considerations. A high degree of uncertainty and complexity is involved in tracheostomy/LTV decision-making. There is a need for a standardized decision-support process that is consistent with a child's best interests and shared decision-making. Strategies for optimizing communication and mechanism for managing disputes are needed.

Considerations for Practice in Supporting Parental Bereavement in the Neonatal Intensive Care Unit-a Systematic Review.

BACKGROUND: Parental bereavement after the death of an infant in a neonatal intensive care unit (NICU) is a complex and nuanced experience. Support from healthcare practitioners can have a significant impact on bereavement experiences in the short- and long-term. Although several studies exist exploring parental perceptions of their experience of loss and bereavement, there has not been a recent review of beneficial practices and common themes in the current literature. OBJECTIVE: This review synthesizes empirical research to identify considerations that ought to guide the caregiving practices of healthcare professionals to support parental bereavement. SETTINGS/SUBJECTS: Data was collected from studies identified in MEDLINE, Embase, and CINAHL. The search was limited to English-language studies describing parental bereavement in the NICU population from January 1990 to November 2021. RESULTS: Of 583 studies initially identified, 47 studies of varying geographic locations were included in this review. Various themes surrounding healthcare support in parental bereavement were identified including ensuring the opportunity for parents to spend time caring for their child, understanding their perception of infant suffering, recognizing the impact of communication experiences with healthcare providers, and offering access to alternative means of support, all of which have been described as suboptimal. Parents generally want the opportunity to say goodbye to their infant in a private and safe space, be supported through their decision-making and be offered bereavement follow-up after loss. CONCLUSION: This review identifies methods of support in parental bereavement based on first-hand parental experiences and routine implementation of these strategies may be beneficial in supporting parents through their bereavement after the loss of a baby in the NICU.

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.

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.

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.

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.

The Delivery of Palliative and End-of-Life Care to Adolescents and Young Adults Living with Cancer: A Scoping Review.

The primary purpose of this scoping review was to provide an overview of the existing evidence on the delivery of palliative and end-of-life care to adolescents and young adults (AYAs) living with cancer, by identifying knowledge gaps and discussing the key characteristics and types of evidence in this field. This study employed a JBI scoping review design. CINAHL (EBSCO), Embase (Elsevier), MEDLINE (Ovid), APA PsycINFO (EBSCO), and Web of Science (Science Citation Index Expanded and Social Sciences Citation Index; Clarivate Analytics) databases were searched along with grey literature sources to February 2022 for related studies on the delivery of palliative and end-of-life care to AYAs. No search restrictions were applied. Two independent reviewers screened titles, abstracts, and full-text articles for eligibility, and they extracted data from studies that met the inclusion criteria. A total of 29,394 records were identified through our search strategy and 51 studies met the inclusion criteria of the study. The studies were published between 2004 and 2022, with the majority from North America (65%). The included studies involved patient, healthcare provider, caregiver, and public stakeholders. Their primary foci were often on end-of-life outcomes (41%) and/or advance care planning/end-of-life priorities and decision-making (35%). This review identified several evidence gaps within the field, including a focus primarily on patients who have died. Findings highlight the need for more collaborative research with AYAs on their experiences with palliative and end-of-life care, as well as their involvement as patient partners in research.

What influences physician opioid prescribing for children with acute pain?

Background: Pain is one of the most common symptoms encountered in the healthcare system, and opioids are among the top three medications used to treat it. Understanding the reasoning behind physicians' opioid prescribing practices is vital to safe practice. The primary objective of our study was to describe pediatric emergency physicians' decision-making process when prescribing opioids for children's acute pain management. Methods: This study employed qualitative methodology, using one-on-one semi-structured interviews within a grounded theory analytic framework. We employed purposeful sampling to recruit pediatric emergency physicians from across Canada. Interviews were conducted by telephone (December 2019-January 2021). Transcript analysis occurred concurrently with data collection, supporting data saturation and theory development considerations. Results: Eleven interviews were completed with participants representing each of Canada's geographic regions. Nine major themes emerged: (1) practice setting and outpatient opioid use, (2) condition-specific considerations, (3) physician confidence in medical evidence, (4) pain assessment challenges, (5) patient and family perspectives, (6) opioid safety concerns, (7) personal biases and experiences, (8) personal practice context, and (9) the Opioid Crisis/media influence. Most clinicians felt that they limited opioid use to those who needed it most; all participants described challenges managing acute pain, emphasizing the need for accurate pain measurement and better guidelines, evidence-based data, and knowledge translation. Clinicians were more comfortable treating pain in the emergency department, compared to discharge prescribing. They recognized the importance of co-therapy with non-opioids and the need for opioid risk assessment when prescribing. A family centered approach was recognized as the goal of practice. Conclusion: Clinicians are less comfortable prescribing opioids to children for at-home use and find pain assessment and lack of clear guidelines to be barriers to pain care. Knowledge translation strategies for safer practice and optimal acute pain management could support responsible and judicious opioid use.

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.

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.

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.

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.

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.

Using eye-tracking augmented cognitive task analysis to explore healthcare professionals' cognition during neonatal resuscitation.

AIM: We aimed to describe the cognitive processes of healthcare providers participating as airway leads in delivery room neonatal resuscitations using eye-tracking assisted debriefing to facilitate recall and provide situational context. METHODS: Delivery room neonatal resuscitations were recorded using eye-tracking glasses worn by participants who acted as airway leads. These glasses analyze eye-movements to produce an audio-visual recording approximating what was "seen" by the participant and marking their visual attention. Participants then reviewed and debriefed their recordings. Debriefing involved a retrospective think-aloud prompted by eye-tracked recordings and an integrated semi-structured interview. Debriefing sessions were transcribed and subjected to thematic analysis. RESULTS: Eight healthcare providers participated in 10 interviews; two providers participated twice in two separate resuscitations. Most visual attention was directed at the infant (62%), with 16% directed to monitors/gauges, 3% to team members. Five major themes emerged including situation awareness, performance, working in teams, addressing threats to performance, and perception of eye-tracking. Information processing was complex and involved top-down and bottom-up processing of environmental stimuli, integration of knowledge/experience, and anticipation of patient response. Despite the focus on individual cognition, interpersonal interactions and teamwork emerged as key aspects of resuscitation performance. Potential threats to performance include equipment issues, mental stress, distractions, and parental presence. Eye-tracking recordings were well-received by the participants. CONCLUSION: Retrospective think-aloud prompted by point-of-view eye-tracked recordings is a useful means of examining cognition of healthcare providers during neonatal resuscitation. Themes identified in this project aligned with existing models of clinical reasoning.

The delivery of palliative and end-of-life care to adolescents and young adults living with cancer: a scoping review protocol.

OBJECTIVE: This review will provide an overview of the evidence on the delivery of palliative and end-of-life care to adolescents and young adults living with cancer, by identifying knowledge gaps and discussing the key characteristics and types of evidence in this field. INTRODUCTION: Adolescents and young adults receive their diagnoses at an important stage of development, and often access health systems that are ill-equipped to deal with them, leading to many unmet needs. Some of these needs can be addressed by holistic palliative care services. A better understanding of the literature in this area is needed to identify what is known about the delivery of care to adolescents and young adults. INCLUSION CRITERIA: This review will consider studies that pertain to the delivery of palliative and end-of-life care for adolescents and young adults living with cancer. Relevant research may be in the context of ambulatory services, advance care planning, palliative care units, home care, hospices, and end-of-lifecare facilities. Studies that concern other oncology populations will be excluded. METHODS: CINAHL (EBSCO), MEDLINE (Ovid), Embase (Elsevier), APA PsycINFO (EBSCO), and Web of Science (Science Citation Index Expanded and Social Sciences Citation Index; Clarivate Analytics) databases will be searched, along with other sources of gray literature. No date limit will be set. Two independent reviewers will screen titles and abstracts for studies that meet the review's inclusion criteria and the fulltext of eligible studies will be reviewed. Data from studies that are eligible for inclusion will be extracted using two independent reviewers and presented in a tabular form with an accompanying narrative summary.

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.

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.