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

Επιστημονική δημοσίευση - Άρθρο Περιοδικού uoadl:3103279 11 Αναγνώσεις

Μονάδα:
Ερευνητικό υλικό ΕΚΠΑ
Τίτλος:
Home or hospital as the place of end-of-life care and death: A grounded theory study of parents’ decision-making
Γλώσσες Τεκμηρίου:
Αγγλικά
Περίληψη:
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. © The Author(s) 2020.
Έτος δημοσίευσης:
2021
Συγγραφείς:
Papadatou, D.
Kalliani, V.
Karakosta, E.
Liakopoulou, P.
Bluebond-Langner, M.
Περιοδικό:
Advances in Palliative Medicine
Εκδότης:
SAGE Publications Ltd
Τόμος:
35
Αριθμός / τεύχος:
1
Σελίδες:
219-230
Λέξεις-κλειδιά:
accommodation; Article; awareness; child; child care; child health; clinical practice; decision making; female; grounded theory; home care; hospital care; hospitalization; human; human experiment; intensive care unit; interpersonal communication; male; malignant neoplasm; mortality; parental behavior; pediatric hospital; perception; professional competence; semi structured interview; structured questionnaire; terminal care; child parent relation; grounded theory; hospital; terminal care, Child; Decision Making; Grounded Theory; Hospitals; Humans; Parents; Terminal Care
Επίσημο URL (Εκδότης):
DOI:
10.1177/0269216320967547
Το ψηφιακό υλικό του τεκμηρίου δεν είναι διαθέσιμο.