Background and aim Palliative Care for Children is defined as ‘an active and total approach to care, from the point of diagnosis or recognition throughout the child’s life, death and beyond’. It is recognised that the prevalence of children with life-limiting conditions (LLC) is increasing. In Ireland the majority of children with LLC are cared for by paediatricians working in hospitals with no direct access to specialist paediatric palliative care(PPC) services.
This study was part of a learning needs assessment of paediatrician’s training and experience in PPC.
Methods Consultants and Specialist Registrars in Paediatrics were approached by email and asked to complete a questionnaire regarding their learning needs in PPC. The Quality of Care Collaborative for Australia in PPC Project Research Study Group Learning Needs Assessment template was used with permission.
The questionnaire included both multiple choice and free-text questions. Quantitative data from the study has been reported elsewhere. Thematic analysis based on the approach of Braun and Clarke (2006) was used to analyse data provided in the free-text answers.
Results 114 paediatricians responded to the survey, 72 respondents (63%) provided free-text answers to the question ‘Reflecting on your most recent clinical interactions with children requiring palliative care support. What were the challenges?’
On analysis, three overarching themes emerged, ‘Best interests of the child’, ‘Inadequate training and confidence’ and ‘Co-ordinating care’.
‘Best interests of the child’ referred to the challenges experienced in ensuring that best interests of the child remain at the core of all decisions made when providing palliative care. This overarching theme included two sub-themes ‘Complex communication’ which referred to the challenges in managing parental expectations in increasingly technologically advanced healthcare systems and ‘First do no harm’ referring to the frequent ethical dilemmas that arise in PPC.
‘Inadequate adequate training and confidence’ referred to lack of specific education in complex symptom management and also to lack of familiarity with community based healthcare services. The theme of ‘coordinating care’ encompassed the need to liaise with community services but also the need to provide holistic care to the whole family which may be unfamiliar paediatricians working in an acute hospital setting.
Conclusion This study explores the challenges experienced by paediatricians providing palliative care to children with LLCs. The themes provide insight into those experiences and provides valuable direction to support the development of future educational programmes in this important and rapidly evolving paediatric sub-speciality.
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