Functionally impaired children and their caregivers: A study in a clinical neuropaediatric setting on validity and usefulness of screening instruments completed by caregivers, and caregivers' satisfaction with neuropaediatric assessment

Abstract

This dissertation is based on a naturalistic multicentre study in the context of an interdisciplinary assessment in neuropediatric clinics. The main objective was to expand knowledge about this assessment, focusing primarily on the role of screening instruments completed by caregivers and their satisfaction with the assessment. The validity and usefulness of screening tools for parental mental health and children's functional impairment were evaluated. The results showed that the screening instruments were valid and useful for screening in the neuropediatric patient population. Parental distress was significantly related to the child’s parentally evaluated functional impairment and continuous measures of child´s mental health symptoms, not diagnoses of neurodevelopmental disorders. The child's functional impairment evaluated by parents was a good indicator of clinical significance and the child's diagnoses of ADHD and autism. The conclusion about parental experiences with the assessment was that they were more satisfied when the assessment was suited to the child's situation, they experienced good cooperation with other public services and were given adequate information about the child's diagnosis. The overall conclusion was that screening instruments filled out by caregivers were valid and useful for screening in the neuropaediatric patient population.

Denne avhandlingen er basert på en naturalistisk multisenterstudie i konteksten av en tverrfaglig utredning ved barnehabiliteringsenheter i Nord-Norge. Det primære målet var å utvide kunnskapen om denne utredningen, med hovedfokus på rollen til kartleggingsinstrumenter utfylt av foreldre, i tillegg til foreldres tilfredshet med utredningen. Validiteten og nytten av kartleggingsinstrumentene for foreldres psykiske helse og barns funksjonsnedsettelse ble evaluert. Resultatene viste at kartleggingsinstrumentene var valide og nyttige for screening i den pasientpopulasjonen. Resultatene viste at foreldrenes velvære hadde en betydelig sammenheng med foreldrevurdert barns funksjonsnedsettelse, men ikke barns utviklingsforstyrrelsesdiagnoser. Videre viste resultatene at mål på foreldrevurdert barns funksjonsnedsettelse var en god indikator på signifikant funksjonsnedsettelse hos barn med ADHD og autisme. Foresatte var mer fornøyde når utredningen var tilpasset barnets situasjon, det var et godt samarbeid med andre offentlige tjenester og når de fikk tilstrekkelig informasjon om barnets diagnose. Den overordnede konklusjonen var at kartleggingsinstrumenter fylt ut av omsorgspersoner var valide og nyttige for screening i barnehabiliteringspasientpopulasjonen.