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

Abstract

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. The participants included 143 children with NDD aged 6 to 12 years and their primary caregivers (<i>n</i> = 130). Each completed the Picture My Participation (PmP) separately. Weighted <i>Kappa</i> 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. Slight to moderate agreement was found between children and primary caregivers in perceived attendance (κ = 0.10 - 0.47, <i>p</i> < 0.05) and involvement (κ = 0.12 - 0.48, <i>p</i> < 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. 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.