Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study

Title

Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study

Creator

Wong FKY; Ho JMC; Lai TC; Lee LPY; Ho EKY; Lee SWY; Chan SCW; Fung CW; Ho ACH; Li CH; Li CK; Chiu ATG; Tsui KW; Lam KKW

Publisher

Archives of Disease in Childhood

Date

2023

Subject

child; diagnosis; article; female; human; male; social support; palliative therapy; Internet; interview; medical information; physician; health care personnel; therapy; caregiver; semi structured interview; case study; nurse; child health; Hong Kong

Description

Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured interviews was employed with a within-case and across-case analysis. Themes and subthemes emerging from the cases were compared and contrasted in the across-case analysis to explore the similarities and variations in participant perceptions. Setting/participants: The setting was the paediatric departments of five regional hospitals in Hong Kong. Twenty-five sets of informants (CLLC-parent-healthcare provider) were recruited, with 65 individual interviews conducted. Results: A total of 3784 units of analysis were identified, resulting in three themes with subthemes. 'Living with the disease' (55.8%) occupied the largest proportion, followed by 'information and understanding about the disease' (27.4%), and 'care support and palliative care' (16.8%). Healthcare provider support mainly focused on physical concerns. Family and social support were present, but carer stress created tension between couples. Doctors were the primary source of medical information, but the parents had to seek further information via the internet and support from patient groups. There was a perceived need for better coordination and collaboration of care. The palliative care approach coordinated by nurses was seen as helpful in addressing the care needs of the CLLC.

Rights

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).

Citation List Month

February List 2024

Collection

Citation

Wong FKY; Ho JMC; Lai TC; Lee LPY; Ho EKY; Lee SWY; Chan SCW; Fung CW; Ho ACH; Li CH; Li CK; Chiu ATG; Tsui KW; Lam KKW, “Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study,” Pediatric Palliative Care Library, accessed May 29, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19508.