The experience of fathers of children hospitalised with advanced heart disease.

Autor:	Samsel C; Department of Psychiatry and Behavioral Sciences, Boston Children's Hospital, Boston, USA.; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, USA.; Department of Psychiatry, Harvard Medical School, Boston, USA., Reichman JR; Department of Cardiology, Boston Children's Hospital, Boston, USA., Barreto JA; Department of Cardiology, Boston Children's Hospital, Boston, USA.; Department of Pediatrics, Harvard Medical School, Boston, USA., Brown DW; Department of Cardiology, Boston Children's Hospital, Boston, USA.; Department of Pediatrics, Harvard Medical School, Boston, USA., Hummel K; Department of Pediatrics, University of Utah, Salt Lake City, USA., Sleeper LA; Department of Cardiology, Boston Children's Hospital, Boston, USA.; Department of Pediatrics, Harvard Medical School, Boston, USA., Blume ED; Department of Cardiology, Boston Children's Hospital, Boston, USA.; Department of Pediatrics, Harvard Medical School, Boston, USA.
Jazyk:	angličtina
Zdroj:	Cardiology in the young [Cardiol Young] 2024 Jun; Vol. 34 (6), pp. 1274-1278. Date of Electronic Publication: 2024 Jan 10.
DOI:	10.1017/S1047951123004390
Abstrakt:	Background: There are little reported data on the perspectives of fathers caring for children with chronic conditions. Although survival of children with advanced heart disease has improved, long-term morbidity remains high. This study describes the experience and prognostic awareness of fathers of hospitalised children with advanced heart disease. Methods: Cross-sectional survey study of parents caring for children hospitalised with advanced heart disease admitted for ≥ 7 days over a one-year period. One parent per patient completed surveys, resulting in 27 father surveys. Data were analysed using descriptive methods. Results: Nearly all (96%) of the fathers reported understanding their child's prognosis "extremely well" or "well," and 59% felt they were "very prepared" for their child's medical problems. However, 58% of fathers wanted to know more about prognosis, and 22% thought their child's team knew something about prognosis that they did not. Forty-one per cent of fathers did not think that their child would have lifelong limitations, and 32% anticipated normal life expectancies. All 13 fathers who had a clinical discussion of what would happen if their child got sicker found this conversation helpful. Nearly half (43%) of the fathers receiving new prognostic information or changes to treatment course found it "somewhat" or "a little" confusing. Conclusions: Fathers report excellent understanding of their child's illness and a positive experience around expressing their hopes and fears. Despite this, there remain many opportunities to improve communication, prognostic awareness, and participation in informed decision-making of fathers of children hospitalised with advanced heart disease.
Databáze:	MEDLINE
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