Background Advances in medicine mean children with life-limiting illness are living into, and therefore dying in, adulthood when they would once have died in childhood. Studies suggest a lack of training for physicians is a major obstacle to achieving adequate care for these young people (YP). The adult palliative care specialist training curriculum requires attainment of broad-brushstroke objectives only. The curriculum needs to provide a workforce competent to deliver palliative care for YP with life-limiting illness.
Aims To identify what issues experienced doctors working with YP with life-limiting illness perceive are key to delivering good palliative care to this group of patients.
Methods 15 semi-structured, face-to-face interviews with experts were undertaken exploring the key issues faced by YP with life-limiting illness. Participants were also invited to comment on the current palliative care specialist training curriculum. Data were analysed using the principles of grounded theory analysis.
Results Six main themes were identified: context, challenges, clinical care, communication, decision-making and planning ahead.
Conclusions The learning-objectives pertaining to YP and transition in the current curriculum are unlikely to generate a workforce competent to provide palliative care to this group. An understanding of the unique contexts of these YP and their families as they transition from children’s services is required to provide excellent holistic palliative care. Challenges and clinical skills were identified that should be considered within the curriculum for delivery of services and good clinical care to this relatively unfamiliar group of YP. Adolescents, YP with cognitive- and communication-problems and families with long-established patterns of interacting require a distinct set of communication skills. Prior experiences of decision-making should be taken into account. A common framework for prognosticating, identifying palliative care need and supporting advance care planning in this group of YP is yet to evolve.
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