Nearly 300,000 children in America are affected by some form of juvenile arthritis (American College of Rheumatology, 2021). Juvenile arthritis (JA) takes a unique physical and emotional toll on children, often resulting in debilitating pain and feelings of loneliness and isolation (Arthritis Foundation, 2021). There is no cure for juvenile arthritis however, with early diagnosis and treatment, remission is possible (Arthritis Foundation, 2021). July is national juvenile arthritis awareness month. To shed light and bring awareness to this disease, below is a starting point of resources for working with children with JA.
Research:
Children with juvenile idiopathic arthritis (JIA) are faced with a complex medical journey requiring consistent adherence to treatments to achieve disease management. Parents are intimately involved in JIA treatments; however, little is known about their experiences in this role. This is relevant as many treatments necessitate procedural pain (e.g., self-injections) or side effects (e.g., nausea), which may impact a parents’ ability to follow treatment plans. The objective of this study was to explore the lived experiences of parents who identified challenges with their child’s JIA treatments. Four superordinate themes were present in mothers’ experiences: (1) treatments altered mothers’ roles within the family, increasing their caregiver burden and advocacy; (2) treatments positively and negatively impacted their relationships (e.g., increased support from others, decreased time with others); (3) treatments elicited various emotional responses (e.g., frustration, grief) which affected their well-being; and (4) treatments were at times a source of internal conflict, affecting mothers’ actions and adherence. Results highlight the value of supporting parents through these complex treatment regimens and incorporating their experiences in treatment decisions to help promote optimal outcomes for children with JIA and their families.
Intra-articular corticosteroid injection (IAS), a common procedure in the therapy of juvenile idiopathic arthritis (JIA), is usually associated with anxiety and pain. In a previous study we reported on the effectiveness and safety of nitrous oxide (NO) analgesia in our JIA patients who were scheduled for IAS. We concluded that NO provides effective and safe sedation for JIA children undergoing IAS, but we also noted that major part of the success in reducing the pain, was associated with the level of the child's anxiety before even starting the procedure. Following the introduction of "dream doctors"- medical clown in our pediatric department, we added a medical clown as an important integral part of the team in doing the IAS. Medical clown is the first team member who meets the child and his parents. This interaction leads to significant reduced anxiety before the procedure. The pain score and the satisfaction level have been improved. By this approach, a painful procedure, that many JIA patients experience more than once, happen to be a "good experience". Some children remember the medical clown more than the injection itself.
Juvenile idiopathic arthritis (JIA) represents the most common inflammatory rheumatism of childhood. Because of a prolonged course of active disease, many patients experience physical and psychosocial limitations. Illness perceptions involve the personal beliefs that patients have about their illness and may influence health behaviors considerably. The present study aimed to investigate the illness perception of patients with JIA. The study highlighted the importance of assessing illness perception in JIA patients. Patient education programs should be implemented since diagnosis for better disease management. Perceiving symptoms were significantly related to being affected by the disease. Those who were concerned about the disease perceived more the consequences of their illness and understood it more. A positive correlation was found between perceiving symptoms as well as consequences and timeline, showing that the perception of chronicity was associated with pain and the burden of the disease.
Resources:
This is a website with resources about juvenile arthritis. Sponsoring Organization Arthritis Foundation
This text explores a young person's experience with the diagnosis of Lupus. The text explores the different stages from diagnosis through remission. Provides factual information about the illness as well as coping methods. The intent of the text is to spark family interactions and open up discussions.
References:
American College of Rheumatology. (2021). Juvenile Arthritis. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Juvenile-Arthritis.
Arthritis Foundation. (2021). July is Juvenile Arthritis Awareness Month. http://blog.arthritis.org/juvenile-arthritis/july-is-juvenile-arthritis-awareness-month/.