Agreement between children with neurodevelopmental disorders and their primary caregivers on participation : attendance, involvement, and perceived important activities

Abstract

PURPOSES : To investigate item-level agreement between children with neurodevelopmental disorders (NDD) and their primary caregivers regarding perceived participation attendance and involvement, and identify differences in their selections of the important activities to children. MATERIALS AND METHODS : The participants included 143 children with NDD aged 6 to 12 years and their primary caregivers (n = 130). Each completed the Picture My Participation (PmP) separately. Weighted Kappa coefficients and absolute agreement/disagreement were calculated to assess agreement between child–primary caregiver dyads in attendance and involvement ratings. Frequencies of items selected as one of the three most important activities were analyzed. RESULTS : Slight to moderate agreement was found between children and primary caregivers in perceived attendance (κ = 0.10 − 0.47, p < 0.05) and involvement (κ = 0.12 − 0.48, p < 0.05) at the item level. Children more frequently identified social activities, caregiving for others or animals, personal care, and school learning as important compared to their primary caregivers. CONCLUSIONS : The relatively low agreement between children with NDD and their primary caregivers highlights the importance of including children’s perspectives in collaborative goal-setting. Clinicians should tailor tools and strategies to address children’s and caregivers’ differences in perceived participation and important activities to facilitate the co-construction of participation goals. IMPLICATIONS FOR REHABILITATION • Clinical decision-making around participation primarily relates to specific activities. • Children with neurodevelopmental disorders and their primary caregivers had relatively low agreement in their perceived participation, particularly concerning children’s involvement in activities related to socialization, caregiving, personal care, and school learning. • Children’s perceptions of involvement and activity importance are essential to measure for the co-construction of participation goals, ensuring goals are grounded in the activities important to children. • Clinicians should implement tools and strategies to bridge the discrepancies in children’s and caregivers’ perceptions, tailoring interventions to address needs from both perspectives.