Children affected by genetic conditions in end-of-life care. Part 1: Development of a study

BACKGROUND: 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. AIM: This study aims to explore how important children's hospice nurses perceived genetics to be within children's hospice care provision, and their level of confidence in meeting the care needs of children and their families with a genetic predisposition to disease. METHOD: 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.BACKGROUND: 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. AIM: This study aims to explore how important children's hospice nurses perceived genetics to be within children's hospice care provision, and their level of confidence in meeting the care needs of children and their families with a genetic predisposition to disease. METHOD: 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.