Dept of Psychology and Neuroscience, Faculty of Science, Dalhousie University
Supervisor: Dr. Christine Chambers, Dalhousie University
Project title: Parental perceptions of pain and treatment adherence in juvenile idiopathic arthritis (JIA)
Annual Commitment:
Year 1: $10,500
Year 2: $10,500
Year 3: $10,500
Keywords:Juvenile Idiopathic Arthritis, pain, treatment adherence, physical activity, medication, parent, coping, catastrophizing, attitudes, pain management
Project Lay Summary:
“Zachary lived with the pain of arthritis for nine months. Despite the fact that he knows that the medicine in the injections is making him feel better, it doesn’t make it any easier to receive the painful poke each day” [35]. Around 24,000 children across Canada live with Juvenile Idiopathic Arthritis (JIA) [1], making it one of the most common childhood chronic illnesses [2]. Pain is the most frequently reported symptom [3], caused by both the illness itself and its associated treatments. Treatment aims to manage the pain and prevent damage to the joint tissues through both medication and physical therapy [4], which when followed leads to improved outcomes [5-11]. Unfortunately, following these recommendations can be hard [6, 12-23]; many of the treatments are painful (e.g., weekly injections), or have uncomfortable side effects (e.g., nausea) [24-29]. While pain is usually something we try to avoid [61], this is not ideal when it comes to treatment-related pain. It can be difficult for a child to understand how something that hurts can be good for them, so we must rely on parents to encourage treatment adherence. Parents however, are stuck between knowing what’s best for their child, and not wanting to see their child in pain. Previous research tells us that parents behaviours and beliefs regarding their child’s experience of pain may be related to avoidance behaviours [30-32]. Now we would like to see how parents might have an effect on treatment adherence in children with JIA.
This study will look at whether parent-level factors relate to treatment adherence in children with JIA. We expect that parents who cope by avoiding things, have negative feelings about pain and medication, have little knowledge of pain-management, and score higher on fear of pain and pain catastrophizing scales will have children who are less adherent to their treatment plan.
Parents of children with JIA will be recruited via social media with the help of Cassie & Friends [33]. All families in Canada with a child under the age of 18 who has been diagnosed with JIA will be eligible. After agreeing to participate, parents will fill out online questionnaires about their child’s diagnosis and treatment, adherence, coping, self-efficacy, fear of pain, catastrophizing, and their own knowledge and attitudes regarding pain. Some of the participants will also be interviewed to better understand the barriers they face when following treatments. Analyses will determine how these parent-level factors relate to treatment adherence.
The proposed study may identify how the parent’s beliefs and knowledge around pain relate to treatment adherence, which can have significant effects on their child’s health and well-being [5-7, 34]. Once parent factors are identified, we would like to teach families ways to manage pain to see if this will reduce parental fears and anxieties. JIA is a chronic disease that has long-term effects on physical health, education, employment, mood, and relationships [71-73]. We hope that results from this study will contribute to improving treatment adherence and these long-term outcomes for children with JIA across Canada.