What does ‘good’ palliative care look like for children and young people? A qualitative study of parents’ experiences and perspectives

Abstract

Background: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children’s palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care. Aim: This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what ‘good’ palliative care is. Design: Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry. Setting/participants: Participants were parents of children and young people (aged 0–17 years) in England, who were receiving palliative care, and parents whose child had died. Results: Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children’s hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life. Conclusions: Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care.

Experiences of Pediatric Palliative Care Among Bereaved Parents Who Lost a Child With Leukemia in South Korea

“…Even in Western countries with a relatively long history of palliative care, many parents experience difficulties despite a well-established system. Fields et al 22 observed that parents from the United Kingdom experienced an excessive burden as caregivers owing to the absence of a coordinator who oversees and leads care. A Dutch study by Kochen et al 23 showed that although parents want to faithfully fulfill their role as parents for the limited time their children have, the pain of their child's imminent death affects their role as caregivers.…”

Coordinating Children's Palliative Care in Municipalities: A Qualitative Study

“…Successful palliative care is characterised by trusted cooperation between families and professionals, as this enables parents to be more than just caregivers for their sick children (11). For children needing palliative care, the municipal coordinator should ensure that the children and their families receive active and comprehensive care tailored to their unique needs (12).…”