UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

Home or hospital as the place of end-of-life care and death: A grounded theory study of parents' decision-making

Papadatou, D; Kalliani, V; Karakosta, E; Liakopoulou, P; Bluebond-Langner, M; (2021) Home or hospital as the place of end-of-life care and death: A grounded theory study of parents' decision-making. Palliative Medicine , 35 (1) pp. 219-230. 10.1177/0269216320967547. Green open access

[img]
Preview
Text
Papadatou et al-Home or hospital-PUBLISHED-2020-12-14.pdf - Published version

Download (447kB) | Preview

Abstract

BACKGROUND: While several studies have examined 'what' families want with regard to the place of a child's end-of-life care and death, few have explored 'how' parents reach a decision. AIMS: (1) to develop a model explaining how parents of a child with a life-threatening illness in Greece decide about the place of end-of-life care and death; (2) to identify the factors affecting decision-making; (3) to consider the implications for clinical practice. DESIGN: Grounded theory study of bereaved parents using semi-structured open-ended interviews following Strauss and Corbin's principles of data collection and analysis. SETTING/PARTICIPANTS: Semi-structured interviews with 36 bereaved parents of 22 children who died at home (n = 9) or in a paediatric hospital (n = 13) in Athens, Greece. RESULTS: (1) Decisions regarding place of care and death were reached in one of four ways: consensus, accommodation, imposition of professional decisions on parents or imposition of parents' decisions without including professionals. (2) Six factors were identified as affecting decisions: awareness of dying, perceived parental caregiving competence, perceived professional competence, parents' view of symptom management, timing of decision-making, and being a 'good parent'. (3) Decisions were clear-cut or shifting. Few parents did not engage in decisions. CONCLUSION: Parents' decisions about place of end-of-life care and death are affected by personal, interpersonal, timing and disease-related factors. Parents are best supported in decision-making when information is presented clearly and honestly with recognition of what acting as 'good parents' means to them, and opportunities to enhance their caregiving competence to care for their child at home, if they choose so.

Type: Article
Title: Home or hospital as the place of end-of-life care and death: A grounded theory study of parents' decision-making
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/0269216320967547
Publisher version: https://doi.org/10.1177/0269216320967547
Language: English
Additional information: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: Decision-making, end-of-life, grounded theory, home care, hospital, place of death
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10117719
Downloads since deposit
5Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item