Background We want to explore the versatility of RNLDs. Why and how have they become important partners in paediatric palliative care? Factors influencing this new trend (Brigham, Atkinson, Jackson et al., 2000). (i) National (children’s) nursing shortage (especially in paediatric palliative care (Munn, 2017). (ii) Advancement in medical practice and technology, prolonging lives and increasing complexity of needs in children with medical conditions and disabilities (Evans, 2018). (iii) RNLDs’ unique passion for supporting the most vulnerable children, and increasing motivation to advance careers in this highly specialised field.
Aim Identifying and acknowledging RNLDs’ contribution to paediatric palliative care and further developing their roles and skills in hospice settings.
Method Two case studies identifying best practice examples. Collective reflection by hospice-based RNLDs on experiences and learning. Systematic analysis of RNLDs’ unique skills. Map these against best practice NICE guidelines (National Institute for Health Care Excellence, 2016). Identify competencies necessary to make PPC a safe endeavour for RNLDs. Short survey: RNLD workforce in UK children’s hospices. Experiences mirrored in other children’s hospices (Schwaebisch, 2018, unpublished report).
Findings RNLDs’ specialised skills can contribute to making care of children with life limiting conditions safer in key areas, including enhanced communication, management of epilepsy, acute deterioration and challenging behaviour.
These and other specialised skills can make all the difference when building therapeutic relationships with families, because they include being acutely sensitive and responsive to the needs of children with profound disabilities or critical illnesses. There are moments when advocacy for the most vulnerable can have a vital impact on holistic outcomes.
Conclusion Further exploration/research in this area is needed. The evidence collected suggests RNLDs have a positive impact within the field of paediatric palliative care. For RNLDs, paediatric palliative care is an enriching and satisfying career choice. We also suggest that the palliative field invite RNLDs as nursing partners to offer people with learning disabilities the specialist person-centred care they deserve.
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