Children matter: what is important to the child living with a life-threatening illness

Abstract

When a child lives with a life-threatening illness there is a range of emotions that affect the child, family and people close to the child. Health professionals require a deeper understanding of the experiences of the child to plan and provide the most valuable, responsive and appropriate support to meet the child's needs. This study utilizes a narrative approach to explore what the child puts emphasis on in what is important to them as they live with serious illness. The study incorporates the nurse as narrator with the 'narratives' of the children integrated into her reflections to gain a broader understanding, the focus is on listening intently to the spoken needs of children, their story and the meaning they make of their situation when they live with their illness. 'Children' classified in this study will be between the ages of six years to 15 years. The aim of this research is to provide a clear understanding of the lived experience, which may illuminate the needs of the child and what is required throughout the time of illness; therefore informing health professionals of a culture of care that may support these needs. A broader understanding and deeper insight into the complexity of children living with life-threatening illnesses provides a basis for the development of sensitive, humanistic quality nursing care for both the child and his/her family, this then enhances the potential for best practice for children living with a life-threatening illness.