Agreement between children with neurodevelopmental disorders and their primary caregivers on participation:...

Area of Science:

• Pediatric Occupational Therapy
• Developmental Psychology
• Child Health Research

Background:

• Children with neurodevelopmental disorders (NDD) often have unique participation needs and perspectives.
• Understanding agreement between children with NDD and their caregivers is crucial for effective intervention and goal setting.
• Existing research may not fully capture the nuanced differences in how children and caregivers perceive participation.

Purpose of the Study:

• To investigate item-level agreement between children with NDD and their primary caregivers regarding perceived participation attendance and involvement.
• To identify differences in how children with NDD and their caregivers select important activities.
• To inform therapeutic strategies for collaborative goal-setting in pediatric populations.

Main Methods:

• 143 children with NDD (aged 6-12) and 130 primary caregivers completed the Picture My Participation (PmP) tool separately.
• Weighted Kappa coefficients and absolute agreement were calculated to assess child-caregiver agreement on attendance and involvement.
• Frequencies of activities identified as most important by children and caregivers were analyzed.

Main Results:

• Slight to moderate agreement (κ = 0.10–0.48) was observed between children with NDD and caregivers in perceived attendance and involvement.
• Children with NDD more frequently identified social activities, caregiving, personal care, and school learning as important compared to their caregivers.
• Significant differences highlight varying priorities in perceived participation.

Conclusions:

• The low agreement underscores the necessity of incorporating children's perspectives in collaborative goal-setting processes.
• Clinicians should utilize tailored tools and strategies to bridge the gap between children's and caregivers' views on participation.
• Facilitating co-construction of participation goals requires acknowledging and addressing these differing perceptions.