Table 2 Instruments
Instrument | Reference | Captures | Domains | Type of variable | Translations required |
|---|---|---|---|---|---|
Life-H | [24] | Child's Participation | Communication Personal care Around the house Feeding Mobility Fitness Responsibility Recreation Education Community Life Interpersonal relations | Dependent. Primary outcome | Danish, French, German, Italian, Swedish |
Frequency of Participation Questionnaire (FPQ) | Being developed within the study | Frequency of participation where measurement is meaningful and the participation is discretionary | Dependent. Primary outcome | Danish, French, German, Italian, Swedish | |
Kidscreen | [28] | Child's Quality of Life | Psychological Emotion Social support Home life Self perception Autonomy School Social acceptance Finance Physical well-being | Dependent. Primary outcome | Danish, Italian Minor adaptations required for professional and proxy versions in all languages |
European Child Environment Questionnaire (ECEQ) | Being developed within the study | Extent to which environment facilitates or hinders participation | Physical Social Attitudinal | Explanatory | Danish, French, German, Italian, Swedish |
Strength and Difficulties Questionnaire (SDQ) | [29] | Child's behaviour | Emotional symptoms Conduct problems Hyperactivity Peer problems Prosocial behaviour | Explanatory | None |
Parenting Stress Index Short Form (PSI-SF) | [30] | Parental stress | Parental distress Parent-child dysfunctional interaction Difficult child PSI Life stress scale | Explanatory | Danish French for Life Stress Scale items only |
Child Health Questionnaire (CHQ) | [31] | General child health | Global health Physical functioning Social emotional Social physical Bodily pain Behaviour Global behaviour Mental health Self esteem General health perceptions Change in health Parental impact – emotional Parental impact – time Family activities Family cohesion | Primarily included to validate other instruments | None |
Impairment | Descriptive | Child's Impairments | Type of cerebral palsy Gross motor function Upper limb function Intelligence Hearing Vision Seizures Communication Feeding | Explanatory | Danish, French, German, Italian, Swedish |
Background child and family factors | Descriptive | Age Sex School Siblings Partner status Parental academic qualifications Parental employment Parental occupation | Explanatory | Danish, French, German, Italian, Swedish |