Abstract
BackgroundTreatment of rheumatic diseases in children often includes long-term needle injections, which represent a risk for refusing medication based on potential needle-fear. How nurses manage children’s fear and pain during the initial educational training session of subcutaneous injections, may affect the management of the subsequent injections in the home settings. The aim of this study was to explore how children expressed fear and pain during these training sessions, and how adults’ communication affected children’s expressed emotions.MethodsThis qualitative explorative study used video observations and short interviews during training sessions in a rheumatic hospital ward. Participants were children between five and fifteen years (n = 8), their parents (n = 11) and nurses (n = 7) in nine training sessions in total. The analysis followed descriptions of thematic analysis and interaction analysis.ResultsThe children expressed fears indirectly as cues and nonverbal signs more often than direct statements. Three children stated explicit being afraid or wanting to stop. The children worried about needle-pain, but experienced the stinging pain after the injection more bothersome. The technical instructions were detailed and comprehensive and each nurse shaped the structure of the sessions. Both nurses and parents frequently offered coping strategies unclearly without sufficient time for children to understand. We identified three main adult communication approaches (acknowledging, ambiguous and disregarding) that influenced children’s expressed emotions during the training session.ConclusionsChildren’s expression of fear was likely to be indirectly, and pain was mostly related to the injection rather than the needle stick. When adults used an acknowledging communication and offered sufficient coping strategies, children seemed to become involved in the procedure and acted with confidence. The initial educational training session may have a great impact on long-term repeated injections in a home setting by providing children with confidence at the onset.
Highlights
Treatment of rheumatic diseases in children often includes long-term needle injections, which represent a risk for refusing medication based on potential needle-fear
Children with rheumatic diseases like juvenile idiopathic arthritis (JIA) are especially vulnerable, as they are often treated with longterm subcutaneous injections of Disease-modifying antirheumatic drugs (DMARDs) and biologics [2, 4]
Targeted medical treatment with DMARDs and biologics may improve the quality of life of JIA patients and may even bring the disease into remission [6]
Summary
Treatment of rheumatic diseases in children often includes long-term needle injections, which represent a risk for refusing medication based on potential needle-fear. The aim of this study was to explore how children expressed fear and pain during these training sessions, and how adults’ communication affected children’s expressed emotions. Needle related fear is common, in children [1]. It may impede vaccination and treatment programs based on medical injections [2, 3]. Adults who had suffered from JIA for 30 years had lower physical function, lower health related quality of life and more pain than the general population [5]. The risk of relapse is significant and requires ongoing medication for years [7]
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