Background: To ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges experienced by paediatric healthcare professionals caring for children with LLC is needed.
Aim: To explore the barriers paediatricians face in initiating and implementing palliative and end-of-life care for children with LLC.
Methods: Due to the challenges of COVID-19, the study was performed as a service evaluation using semi-structured interviews and an online questionnaire with consultant paediatricians in general paediatrics, community paediatrics and multiple subspecialties at a UK children's hospital between December 2020 and August 2021. Twelve interviews and 18 online questionnaires were completed. Interviews were analysed using reflexive thematic analysis, and descriptive statistics were used for questionnaire responses.
Results: Recurring themes from both data sets were further analysed and five themes were developed: (1) Problems with the leadership of palliative and end-of-life care; (2) Problems with preparing advanced care plans; (3) Lack of training in paediatric palliative care and advanced communication; (4) Problems communicating with families; and (5) Lack of recognition of children with LLC and high-profile cases.
Conclusions: We found that the barriers to effective palliative and end-of-life planning are multifaceted and pervasive, so healthcare professionals must establish clearer pathways to overcome them. Approaches suggested included (1) discussing palliative care for children with LLC at professional encounters, for example, departmental meetings, peer-review meetings and morbidity and mortality meetings and (2) advanced communication training in palliative and end-of-life care.
Keywords: Paediatrics; Palliative Care.
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