Experiences and needs of parents of palliative paediatric oncology patients: A meta-synthesis.

Résumé

INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of end-of-life palliative paediatric oncology patients.METHODS: Six electronic databases were searched as follows: CINAHL, The Cochrane Library, Embase, PubMed, Scopus and PsycINFO. Included studies were appraised using the Critical Appraisal Skills Programme Checklist. They were then analysed using a two-step approach comprising firstly meta-summaries followed by meta-synthesis for generating fresh insights to the topic.RESULTS: Thirteen studies were included. Three themes emerged as follows: (1) normalising the pain; (2) failure as a parent; and (3) importance of communication and social support. Parental experiences included moving on despite the pain and harbouring hopes for their children. However, parents felt immense guilt and a sense of failure in carrying out their parental roles. Effective communication with healthcare providers, availability of family support and religion were necessary to help them cope.CONCLUSIONS: Given the emotional challenges faced by parents, healthcare policies and practices should be revised to include parental support in paediatric palliative care services. Future healthcare communication trainings should consider parental need for sensitivity in communication, empathy and kindness from healthcare professionals.