Family caregiver observations of pain behaviors in infants and young children less than 3 years of age

Abstract

Pain in very young, preverbal children is often inadequately assessed and thus poorly treated, leading to short- and long-term negative consequences. Family caregivers are often the primary observers of young children's pain, but their perspectives are often overlooked. There are no well-designed or validated caregiver-reported pain measures for children under 3 years of age. This study used qualitative concept elicitation interviews with 44 caregivers of young children aged birth to <3 years who had experienced acute pain associated with injury, chronic illness, or medical procedure to identify key indicators caregivers use when assessing pain in their children. Caregivers described pain indicators that were categorized as sounds, movements, facial color change and expressions, emotional expression/behavioral changes, and related elements, such as vital sign changes. Caregivers also identified key indicators for mild, moderate, and severe pain. Most caregivers noted that it became easier to identify pain over time as they learned their child's cues and as their child's communication developed. Caregivers of young children provide a unique perspective on their child's pain experience and severity. Caregiver-identified pain indicators from this study will inform the design of a caregiver-reported acute pain measure that, once validated, could be used in clinical research studies and trials or practice. PERSPECTIVE: Validated family caregiver-reported pain measures for children <3 years are lacking. Using concept elicitation interviews, caregivers of children <3 who recently experienced acute pain described pain indicators in the categories of sounds, movements, facial color/expressions, emotional/behavioral changes, and physiological changes. Caregivers offer a unique perspective on young children's pain experiences.

Keywords: Acute pain; Clinical outcome assessment; Family caregivers; Observer-reported outcomes; Pediatric population; Qualitative study.