I don’t want to think about it: a qualitative study of children (6–18 years) with rheumatic diseases and parents’ experiences with regular needle injections at home

Abstract

Background 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. This study aimed to explore how regular needle injections affect children with RD and their parents in their daily living. Methods This 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. Results The 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. Conclusions Children 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.

“Every Little Furrow of Her Brow Makes Me Want To Stop”: An Interpretative Phenomenologic Analysis of Mothers' Experiences With Juvenile Idiopathic Arthritis Treatments

“…Unfortunately, mothers in this study reported receiving minimal support regarding their child's treatments. Although it seemed that emotional responses tended to improve with habituation, confidence, and knowledge with treatments, which would be consistent with other literature (20,28), it is important that parents receive psychosocial support early on and throughout these processes, as emotions can change with the disease course (42). While parents have been included in psychosocial interventions in JIA (e.g., 29), they have rarely been the focus, and there is a clear need for more evidence-based interventions geared toward them.…”

“…Another key implication of this study is the importance of supporting mothers through these treatments, decisions, and transitions of care not only for their own well‐being, but for the health of their child (49). Based on the results of this study, it is recommended that health care providers check in with mothers regularly with regard to their experiences with their child's treatments and support them either through treatment‐specific education and training (10,26,28), referrals to JIA communities for social support (34,50), or referrals to evidence‐based psychological therapies to manage their child's treatment pain or the mother's own mental health (29–31).…”

“…Although some mention parents' perspectives on their child's treatments (e.g., the burdensomeness) (20)(21)(22)(23)(24)(25), a focused approach is required to understand parents' experiences with these treatments. This will provide insight into how parents' experiences may subsequently impact treatment adherence and how we can best support parents through these challenging regimens (e.g., via education [10,26,28] or mental health support [29][30][31]). The objective of this study was to explore the lived experiences of parents with self-identified challenges with their child's pharmacologic and/or nonpharmacologic JIA treatments.…”

Tapering of biological treatment in autoinflammatory diseases: a scoping review

“…In a Childhood Arthritis Rheumatology Research Alliance (CARRA) survey the physicians’ attitudes towards tapering in sJIA were assessed; 39% preferred tapering biological treatment over 2–6 months and favoured interval prolongation [ 37 ]. Particularly for children, interval prolongation often increases quality of life due to a reduced hospitalization rate for infusions or decreased frequency of s.c injections, which are often associated with discomfort, fear and worries [ 38 ]. Furthermore, interval prolongation may result in lower drug costs, as absolute treatment doses needed in childhood are commonly lower than those offered in the adult-dose vial, resulting in expensive drug discharge with every injection.…”

Estrategias no farmacológicas como adyuvantes para manejo del dolor agudo por punción en pediatría

“…A corto plazo, el manejo inadecuado del dolor provoca estrés, ansiedad, prolongación de estancias hospitalarias y aumento de costos 6 , mientras que a largo plazo ocasiona hiperalgesia, rechazo a los establecimientos de salud 7 y estrés postraumático 8 , ocasionando una reducción a la adherencia en los tratamientos crónicos 9 .…”