This study highlights the genetics education needs of hospice nurses in providing end-of life care for patients and their families affected by inherited genetic conditions.
Children's hospice nurses are required to care for children and families affected by life-limiting genetic conditions and many have complex support needs, which require an insight into issues associated with genetics. This study demonstrates that more education about genetics is required by children's hospice nurses. The focus of educational courses should be on the psychosocial aspects of care, which are needed in the context of hospice care, because this is considered the most important and where nurses were slightly more confident.
This study involved two stages: a single-page survey to children's hospice directors of nursing designed to determine the nature of children's hospice care provision in England and Wales. Second, a postal survey using a structured, self-administered questionnaire was sent to nursing staff in a sample of children's hospices in England and Wales. A total of 277 packs were sent to the hospices for distribution to children's nurses working in their employment. Likert scales were used to rate the importance of genetic activities relevant to children's hospices, and nurses' confidence in performing them. Demographic data were also collected. The results, the discussion of the findings and implications for practice will be discussed in part 2.
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