Children affected by genetic conditions in end-of-life care. Part 2: findings and discussion

BACKGROUND: Many children cared for in hospice settings are affected by a genetic condition. Therefore, children's hospice nurses require knowledge and awareness of the issues faced by families affected. AIM: The authors carried out a study to ascertain how important children's hospice nurses perceived genetics to be within care provision generally and explore how confident they were personally in meeting these care needs. METHOD: A questionnaire survey was sent out to 277 nurses working in children's hospices across the UK. The methods used are described in detail in part 1 of the study. RESULTS: One hundred (36%) questionnaires were returned. Most children's nurses felt that an understanding of genetics was very important within children's hospice care. However, they were not confident about integrating most aspects of genetics into clinical practice. DISCUSSION: 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.