How bereaved families conceptualise good care and communication in intensive care in South Australia

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dc.contributor.authorCarter, D.
dc.contributor.authormoodie, S.
dc.contributor.authorReddi, B.
dc.contributor.authorYeo, N.
dc.contributor.authorLaver, H.
dc.contributor.authorSundararajan, K.
dc.date.issued2024
dc.description.abstractSince 2018, DonateLife South Australia and the Royal Adelaide Hospital (RAH) have collaborated to deliver routine family follow-up after bereavement in the intensive care unit (ICU). This follow-up includes a telephone interview that invites bereaved family members to comment on the quality of care and communication experienced in the ICU. To identify bereaved families’ experiences, including how they conceptualise good care and communication in intensive care, an analysis was conducted on all qualitative data collected during 118 interviews completed between 1 February 2018 and 30 May 2019. Refexive thematic analysis was undertaken in an inductive and semantic way, with coding and theme generation being directed by the explicit content of the data, as conceptualised by Braun and Clarke. Initial codes were based on the interview questions, then additional codes were created during data analysis. Coding was informed by philosophical insights about concepts and the spirit of interpersonal engagement developed by Wittgenstein and Cordner, respectively. A concept map of the relationships observed between patterns of meaning in the data was created. Participants deeply appreciated staf providing them and their loved one with practical expressions of care and hospitality, however modest. These, along with staf sometimes crossing professional boundaries, expressed staf’s spirit of engagement, which in turn helped to maintain the patient’s dignity. Private space also helped to maintain the patient’s dignity, and it helped family to have enough time to say goodbye. Family not feeling rushed and being informed about their loved one dying also helped family to have enough time to say goodbye. Being informed depended on the quality of doctors’ communication. When family were not clearly informed, or had to wait long periods, they felt rushed and that they did not have enough time to say goodbye. Documents written to guide the assessment of intensive care comment on almost all of these matters, but the present study newly maps how they interact based on the extensive empirical evidence that it collected. Guidance documents should comment on giving staf scope to occasionally traverse a boundary, such as an institutional border or rule, to better support the patient and family, since families experience exceptionless practice insensitive to context as callous or disruptive of care.
dc.description.statementofresponsibilityDrew Carter, Stewart Moodie, Benjamin Reddi, Nikki Yeo, Heylen Laver, and Krishnaswamy Sundararajan
dc.identifier.citationBMC Health Services Research, 2024; 24(1):1617-1-1617-11
dc.identifier.doi10.1186/s12913-024-11877-1
dc.identifier.issn1472-6963
dc.identifier.issn1472-6963
dc.identifier.orcidCarter, D. [0000-0002-1221-6656]
dc.identifier.orcidReddi, B. [0000-0003-4110-5055]
dc.identifier.orcidSundararajan, K. [0000-0002-3377-6062]
dc.identifier.urihttps://hdl.handle.net/2440/143780
dc.language.isoen
dc.publisherBMC
dc.rights© The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modifed the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.
dc.source.urihttps://doi.org/10.1186/s12913-024-11877-1
dc.subjectIntensive care unit; End of life care; Quality of care; Communication; Ethics; Patient dignity; Bereavement follow-up; Resource allocation; Bereavement; Family perspectives; Grief; Complicated grief; Organ donation
dc.titleHow bereaved families conceptualise good care and communication in intensive care in South Australia
dc.typeJournal article
pubs.publication-statusPublished

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