Just a little needle stick. Pain and fear related to long-term needle injections in children with rheumatic diseases: An exploratory study

Abstract

Children with rheumatic diseases (RDs) have experienced substantial improvements in symptom burden and physical function due to new medical treatments. However, this treatment usually requires weekly subcutaneous injections for years. The children receive the first injection at the hospital, and there after the family is responsible for the treatment at home. Needle-related pain and fear in children are common, but sufficient research was lacking in children with RDs. The aim of this study was to explore needle-related pain and fear in children with RDs who require long-term injection-based treatment. Furthermore, to examine the injection training provided by the nurses at the hospital and the experiences of children and parents who manage the treatment at home. We obtained data using video observation of training sessions, individual interviews with children and parents, as well as focus groups with children, parents and nurses. The findings provide insights into the complexity of the training sessions and the demands placed on nurses to manage both technical and emotional challenges. Fear of needle-pain often remained unaddressed and continued at home, even if the children reported the pain less intense than expected. Nurses’ acknowledging communication tended to influence the child’s emotions positively, involving the child in decision-making. The families lacked technical training and sufficient emotional guidance. Although the nurses considered their educational role important, they lacked pedagogical competence, and struggled to complete the training sessions in a busy children’s ward with competing critical procedures. Overall, the findings in this study emphasize that children in need of long-term injections require nurses with competencies to meet children and parents’ emotional needs, as well as technical skills. Further studies are needed to examine the effect of web-based information channels and the impact of improving nurses’ communication skills.