International journal of palliative nursing
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Children's hospices have the facilities to enable a child to remain at the hospice following their death until the time of the funeral if desired by the family. The use of cold bedrooms (or beds) to reduce the rate of the body's physical deterioration enables the family to have unrestricted access and close proximity to the child throughout the 24-hour period. ⋯ The study has methodological limitations but presents an investigation into the experiences of parents whose child has been cared for in a cold bedroom. These families all described the experience positively.
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Many children receiving hospice care are affected by inherited genetic conditions. To provide appropriate care, children's hospice nurses require knowledge and awareness of the issues faced by the child and their family along with the implications of having, or being at risk from, an inherited genetic condition. Little is currently known about the competence levels of children's hospice nurses to support these children and their families. ⋯ 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.