Understanding Pain Management Information Needs in Caregivers of Children with Arthritis

Abstract

Introduction/Aim: Juvenile Idiopathic Arthritis (JIA) affects approximately 24,000 children throughout Canada, many of whom report pain as the predominant symptom. Caregivers play an important role in managing JIA-related pain; not only are they the primary support, many are also tasked with administering potentially painful treatments at home. This study explored caregivers’ confidence and information needs in managing their child’s pain. Methods: Recruitment took place worldwide by engaging partner organizations and sharing across online and social media platforms. 216 caregivers of children with JIA aged 0–17 participated in an online survey, completing questions about their child’s arthritis and pain, and their own information needs. Participants were predominantly mothers (96%) residing in North America (77%). Results: Caregivers reported lacking confidence in alleviating their child’s arthritis-related pain (M = 4.11, SD = 2.60, range = 0–10). Although all participants reported wanting some information, regressions demonstrate that lower caregiver confidence related to a need for more information [t = −2.91, β = −0.34 (−0.57, −0.12)]. The most frequently identified needs included managing emotions related to painful experiences (60%) and differentiating arthritis pain from normal pain (56%). Caregivers strongly valued developing partnerships between researchers and parent organizations wherein evidence-based information related to arthritis pain could be shared (M = 4.25, SD = 1.05, range = 1–5). Discussion/Conclusions: As caregivers of children with JIA are tasked with helping to manage their child’s pain, it is important that they have the necessary tools to do so. This research demonstrates that although parents’ lack confidence in pain management, they are keen to learn more. Implications will be discussed for knowledge translation within this community.