Abstract
BackgroundOverall outcomes of pediatric rheumatic diseases (RD) have improved due to treatment with biologic agents and methotrexate. For many children, this treatment often entails regular needle injections. Pain and fear of needle injections are common in childhood, but how children and parents handle long-term needle injections at home has not been fully explored. This study aimed to explore how regular needle injections affect children with RD and their parents in their daily living.MethodsThis explorative qualitative study used individual interviews and focus groups to ensure a comprehensive investigation of the topic. Children aged 6 to 16 years (n = 7) and their parents (n = 8) were interviewed individually 4 to 6 months after the onset of needle injection treatment. The focus groups included children aged 11 to 17 years (n = 9) and parents (n = 8) with a minimum of 6 months of experience with injection treatment. Data were analyzed using thematic analysis.ResultsThe main themes; “challenges,” “motivational factors,” and “routines” captured experiences and strategies that influenced the continuation of needle injections at home. Many children feared the moment immediately before the needle stick, although they had become accustomed to the pain. Most parents felt insecure about handling needle injections and lacked follow-up from healthcare providers. The children’s experience of treatment effects and self-confidence were essential to maintain motivation for further injections. A number of coping strategies helped children focus away from injection related discomfort, often discovered by chance. Facilitating firm routines and shared responsibility within families helped children develop self-confidence during the procedure. Children and parents struggled to find suitable information on the Internet.ConclusionsChildren and parents experienced long-term needle injections challenging. They used their own limited resources and cooperated within the families to create routines and to introduce coping strategies necessary to manage and keep up with the procedure. Although the injection itself was not experienced very painful, the discomfort, worries and impact on daily life represented far more than a little needle stick, and thus needs more attention from healthcare providers.
Highlights
Overall outcomes of rheumatic diseases (RD) in childhood have improved substantially due to new treatment programs, including the use of biologic agents and methotrexate combined with physical activity [1,2,3,4]
Could anything have been done differently? Can you tell about your disease and if the injection helps you? What do children need to know when they start with needle injections? What do you think about continuing with needle injections? Is there anything else you want to tell?
Tell about the education for needle injections In what ways do the injections affect you in school, home and leisure activities? What do you think about continuing with needle injections? What do children need to know when they start with needle injections? Is there anything else you want to tell?
Summary
Tell about the education for needle injections In what ways do the injections affect you in school, home and leisure activities? What do you think about continuing with needle injections? What do children need to know when they start with needle injections? Is there anything else you want to tell? Finish. Overall outcomes of pediatric rheumatic diseases (RD) have improved due to treatment with biologic agents and methotrexate. For many children, this treatment often entails regular needle injections. Pain and fear of needle injections are common in childhood, but how children and parents handle long-term needle injections at home has not been fully explored. Overall outcomes of rheumatic diseases (RD) in childhood have improved substantially due to new treatment programs, including the use of biologic agents and methotrexate combined with physical activity [1,2,3,4]. Pain and fear of needle injections are common among children [5, 6] and may cause reluctance to use injections and nonadherence to treatment [7, 8]. In some cases, repeated painful procedures may lead to post-traumatic stress syndrome, non-adherence to medical treatment, and aversion to health care later in life [10, 19]
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