In this article the authors present findings on professional carers' experience of providing pediatric palliative care to children with life-limiting conditions. For this qualitative study, part of a national pediatric palliative care needs analysis, the authors engaged in 15 focus group interviews and drew on the responses of open-ended questions to give voice to the experiences of professional carers and to situate the humanity of their caring reality. This humanity is articulated through three themes: clarity of definition and complexity of engagement, seeking to deliver a palliative care service, and the emotional cost of providing palliative care. Further analysis of these themes points to a work-life experience of skilled and emotional engagement with children, and their parents, in complex processes of caregiving and decision making. Pediatric palliative care occurs in an environment where parents shoulder a large burden of the care and professionals find themselves working in underresourced services.

Download full-text PDF

Source
http://dx.doi.org/10.1177/1049732307308316DOI Listing

Publication Analysis

Top Keywords

palliative care
24
pediatric palliative
16
professional carers'
8
providing pediatric
8
care service
8
care analysis
8
care
7
palliative
6
carers' experiences
4
experiences providing
4

Similar Publications

Background: Delirium frequently occurs in palliative care settings, yet its screening, identification, and management remain suboptimal in clinical practice. This review aims to elucidate the barriers preventing healthcare professionals from effectively screening, recognizing, and managing delirium in adult patients receiving specialist palliative care, with the goal of developing strategies to enhance clinical practice.

Methods: A mixed-methods systematic review was conducted (PROSPERO: CRD42024563666).

View Article and Find Full Text PDF

Objective: To compare the sociodemographic and clinical profiles of patients with advanced cancer admitted to a tertiary palliative care unit before and during the COVID-19 pandemic.

Methods: This is an analysis of data from patients receiving care before (10/21/2019 to 03/16/2020) and during (09/23/2020 to 08/26/2021) the COVID-19 pandemic. Sociodemographic and clinical data were evaluated.

View Article and Find Full Text PDF

Background: While an extensive body of research in palliative care exists on the experiences of grief and bereavement among family caregivers, much of this research is based on normative assumptions of who family caregivers are - housed, financially stable, and with extended family and/or friends to draw on for support. Research shows that in contexts of social disadvantage(e.g.

View Article and Find Full Text PDF

Background: Despite growing research on the daily life of people with advanced cancer, more specific knowledge is needed about the specific strategies these people use to manage everyday activities.

Purpose: This study explores how people with advanced cancer manage their everyday activities and describe their specific strategies.

Methods: The qualitative study was designed with an explorative approach.

View Article and Find Full Text PDF

Background: People with malignancy of undefined primary origin (MUO) have a poor prognosis and may undergo a protracted diagnostic workup causing patient distress and high cancer related costs. Not having a primary diagnosis limits timely site-specific treatment and access to precision medicine. There is a need to improve the diagnostic process, and healthcare delivery and support for these patients.

View Article and Find Full Text PDF

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!