An investigation of the terminology used for children with life-limiting conditions

The purpose of this quantitative study was to investigate the terminology that Irish nurses used when referring to children with life-limiting conditions. The study was part of the preliminary work that was undertaken as part of a Doctoral study that explored mothers’ experiences of caring for children with complex needs. Given the sensitivity that can surround the term ‘life-limited’, this study was undertaken to identify the terminology that nurses use in their practice. Data were collected from a sample of 46 registered nurses using a specifically-designed, structured questionnaire administered by telephone interview. The questionnaire was based on the definitions of life-limited outlined by the Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT) and the Royal College of Paediatrics and Child Health, and the four broad groups of life-limited children they describe. The results indicate that a wide range of terms are used by nurses for children with life-limiting conditions. Terms used refer to the child’s diagnosis, the chronic nature of the illness and the limitations that the illness causes. The study findings suggest that the terminologies used differ despite a common available definition that, because of its diagnostic focus, may not accurately reflect the complex nature of these children’s nursing and care needs.