Illness Perceptions in Pediatric Spinal Muscular Atrophy: Agreement between Children and their Parents, and its Association with Quality of Life

This study investigated agreement in illness perceptions of children with Spinal Muscular Atrophy (SMA) and their parents, the association between the child’s illness perceptions and QoL, and the relation between child-parent agreement in illness perceptions and the child’s QoL. Twenty -six children and their parents completed the Brief Illness Perception Questionnaire (BIPQ) and the Kidscreen-52 QoL questionnaire (children only). Correspondence between children’s and parents’ illness perceptions was low. Generally, parents held more negative illness perceptions about SMA. Whe reas children’s illness perceptions were related to QoL, no clear association was found between agreement in illness perceptions and children’s QoL. Therefore, to understand and improve QoL, healthcare professionals should discuss children’s own illness perceptions during consultations.
Source: Journal of Developmental and Physical Disabilities - Category: Disability Source Type: research