The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic study
and/or publication of this; article.; authorship; child; communication; Covid-19; of interest with respect to the research; Palliative care; pandemics
BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to study health communication during pandemic times. However, it is unknown how communication within consultations might change during pandemics. AIM: This study, a sub-study of a larger project, aimed to examine real-world instances of communication in paediatric palliative care consultations prior to and during the COVID-19 pandemic to understand how clinicians and families talk about the pandemic. DESIGN: Paediatric palliative care consultations prior to, during, and immediately following the initial peak of COVID-19 cases in Australia were video recorded and analysed using Conversation Analysis methods. SETTING/PARTICIPANTS: Twenty-five paediatric palliative care consultations (including face-to-face outpatient, telehealth outpatient and inpatient consultations) were video recorded within a public children's hospital in Australia. Participants included 14 health professionals, 15 child patients, 23 adult family members and 5 child siblings. RESULTS: There was a pervasive relevance of both serious and non-serious talk about COVID-19 within the consultations recorded during the pandemic. Topics typical of a standard paediatric palliative care consultation often led to discussion of the pandemic. Clinicians (55%) and parents (45%) initiated talk about the pandemic. CONCLUSIONS: Clinicians should not be surprised by the pervasiveness of COVID-19 or other pandemic talk within standard paediatric palliative care consultations. This awareness will enable clinicians to flexibly address family needs and concerns about pandemic-related matters that may impact health and wellbeing.
Ekberg K; Weinglass L; Ekberg S; Danby S; Herbert A
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216320950089" target="_blank" rel="noreferrer noopener">10.1177/0269216320950089</a>
Family meetings in paediatric palliative care: an integrative review
communication; Communication strategies; family meetings; integrative review; pediatric palliative care
OBJECTIVE: Our aim was to synthesise the available evidence surrounding the structure, processes and outcomes of family meetings in the paediatric palliative care literature. METHOD(S): We undertook an integrative literature review informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The protocol was registered with PROSPERO (CRD42019138938). Electronic databases were systematically search using keywords and hand searching of reference articles and grey literature was also completed. RESULT(S): Ten empirical studies and five theoretical articles were included in the synthesis. Empirical studies provided more information about meeting structure, whereas theoretical articles more frequently described a desired process for planning and undertaking meetings. No articles identified how the success of a meeting was defined or made recommendations for doing so. Despite reports that family meetings are commonly occurring, few articles described outcomes from either the family or clinician perspectives. CONCLUSION(S): Family meetings are essential communication strategies commonly used in paediatric palliative care, yet there is little guidance about how meetings should be organised and conducted, who should participate and when they should occur. The limited data available on the outcomes of family meetings suggest improvements are required to meet the needs of families. We present a framework that synthesises the available evidence. The framework offers an overview of the elements to consider when planning for and undertaking family meetings in paediatric palliative care and may be useful for both clinicians and researchers. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Bradford N; Rolfe M; Ekberg S; Mitchell G; Beane T; Ferranti K; Herbert A
BMJ supportive & palliative care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2020-002333" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2020-002333</a>
Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
Human; Child; Adult; Emotions; Professional-Patient Relations; Collaboration; Siblings; PubMed; Qualitative Studies; Embase; CINAHL Database; Thematic Analysis; Medline; Palliative Care -- In Infancy and Childhood; Systematic Review; Honesty; Life Expectancy -- In Infancy and Childhood; Patient Attitudes; Psycinfo
Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric palliative care. Objective: To synthesize existing qualitative research exploring healthcare users' experiences of communicating with healthcare professionals about children with life-limiting conditions. Design: The results of a systematic literature search were screened independently by two reviewers. Raw data and analytic claims were extracted from included studies and were synthesized using thematic analysis methods for systematic reviews. Data Sources: MEDLINE, PubMed, CINAHL, Embase, PsycINFO, Scopus, Web of Science, ProQuest, and ScienceDirect were searched for articles published in English between 1990 and May 2017. Results: This review included 29 studies conducted across 11 countries and involving at least 979 healthcare users (adults [n?=?914], patients [n?=?25], and siblings [n?=?40]). The four domains of communication experience identified through thematic synthesis are: Information, Emotion, Collaboration, and Relationship. Although included studies were from a range of settings and diverse populations, further research is needed to explore whether and how domains of communication experience differ across settings and populations. In particular, further research about children's palliative care experiences is needed. Conclusions: Healthcare users typically value communication with healthcare professionals: that (1) is open and honest, (2) acknowledges emotion, (3) actively involves healthcare users, and (4) occurs within established and trusting relationships.
Ekberg S; Yates P; Bradford Natalie K; Herbert A; Danby S
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2017.0422" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0422</a>