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.
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.
Family perspectives of ex situ heart perfusion Conway, Jennifer; Deschenes, Sadie; Pidborochynski, Tara ...
Pediatric transplantation,
November 2023, Volume:
27, Issue:
7
Journal Article
Peer reviewed
Open access
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.
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.
What distinguishes phenomenology as a method for human science inquiry? How does human science phenomenology share a common concern with phenomenological philosophy? Is phenomenology always, already ...innovative? In this article, I explore these questions through the example of antenatal ultrasound, the common medical practice of prenatal imaging to “look through” the pregnant body. An experiential account of antenatal ultrasound offers several potential topics for phenomenological reflection to reveal ultrasound imaging in its sociality, temporality, and diagnostic complexity. And this example shows how insights can ultimately be drawn from an engagement with descriptive experiential material as the ground for phenomenological reflection.
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.
Ex situ heart perfusion has the potential to expand the pediatric heart donor pool and decrease waitlist mortality. 68 pediatric heart transplant practitioners from around the world responded to a 28‐question survey. Despite increasing use in adult heart transplant, pediatric heart transplant practitioners remain hesitant about the use of this new technology.
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.
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.
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