Advance Care Plan Discussion among Parents of Children with Cerebral Palsy
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.
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
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).
<a href="http://doi.org/10.1111/dmcn.15184" target="_blank" rel="noreferrer noopener">10.1111/dmcn.15184</a>
Primary palliative care: Skills for all clinicians
advance care plan; American Academy of Pediatrics; end-of-life; goal of care; goals of care; hospice and palliative medicine; palliative care; quality of care
The number of children with life-threatening and life-limiting conditions is increasing, requiring an individualized approach and additional supportive care. The American Academy of Pediatrics has called for pediatric palliative care to be available to all children who would benefit.$^{\textrm{1,2}}$ High quality pediatric palliative care is essential for these children. Collaborative team-based methods focused on improving quality of life have shown to improve outcomes in physical, emotional, and cognitive domains.$^{\textrm{3}}$ Palliative care involvement at the time of diagnosis rather than just at the end of life has moved coordinated care upstream. All clinicians can and should deliver palliative care. The Joint Commission recommends having patient-centered palliative care services available for children, and the Centers for Medicare and Medicaid Services is reimbursing clinicians for this coordinated care. This article details how all pediatric clinicians can positively influence the care of seriously ill children by incorporating palliative care principles into their daily care, resulting in better outcomes for their patients and families. Copyright © 2020 Elsevier Inc.
Sreedhar S S; Kraft C; Friebert S
Current Problems in Pediatric and Adolescent Health Care
2020
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).
<a href="http://doi.org/10.1016/j.cppeds.2020.100814" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2020.100814</a>