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

Abstract

ObjectiveTo compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers.DesignA 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/participantsThe 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.ResultsA 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.ConclusionsThis original study identified the importance of palliative care with active engagement of parents which can address the service gap for CLLC.