Advance care plan discussion among parents of children with cerebral palsy

Khalid, Farah and Voon, Swee Im Ng and Ong, Lai Choo and Lim, Wei Kang and Li, Limin and Adnan, Azirah and Ganesan, Vigneswari and Teh, Chee Ming and Fong, Choong Yi (2022) Advance care plan discussion among parents of children with cerebral palsy. Developmental Medicine and Child Neurology, 64 (8). pp. 1025-1033. ISSN 0012-1622, DOI

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Aim To evaluate parental perception of advance care plan (ACP) discussions in families of Malaysian children with bilateral cerebral palsy (CP) classified in Gross Motor Function Classification System levels IV or V for (1) acceptance of the ACP discussion, (2) feedback on the usefulness of ACP discussion, and (3) exploration of possible factors related to parental acceptance of ACP. Method This was a prospective pre- and post-ACP discussion questionnaire study for parents of children with bilateral CP. Results Sixty-nine patients were recruited to the study; 64 (93%) had at least one additional comorbidity. The median age was 8 years (interquartile range 5 years 1 month-11 years 6 months). Fifty-seven (82.6%) parents found the ACP discussion acceptable, and most reported positive feedback on various components of the discussion (88.4-97.1%). One-third of participants were not comfortable discussing end-of-life care plans. On multivariate analysis, parents who were comfortable discussing end-of-life care plans were more likely to find the ACP discussion acceptable (odds ratio 27.78, 95% confidence interval 2.9-265.1, p = 0.004). Interpretation Most parents of Malaysian children with bilateral CP reported the ACP discussion as both acceptable and beneficial. Parents need to be comfortable about discussing end-of-life care plans for their child to enable the ACP discussion to be an acceptable experience.

Item Type: Article
Funders: None
Uncontrolled Keywords: Palliative; Care discussions; Hope
Subjects: R Medicine > RJ Pediatrics
Divisions: Faculty of Medicine > Paediatrics Department
Depositing User: Ms. Juhaida Abd Rahim
Date Deposited: 13 Oct 2023 02:31
Last Modified: 13 Oct 2023 02:31

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