Advance Care Plan Discussion among Parents of Children with Cerebral Palsy

Advance Care Plan Discussion among Parents of Children with Cerebral Palsy

Khalid F; Ng Voon SI; Ong L C; Lim WK; Li L; Adnan A; Ganesan V; Teh C M; Fong CY

Developmental Medicine and Child Neurology

2022

Child; Comorbidity; Terminal care; Cerebral palsy; Advance care plan; School

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.

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

September 2022 List