Low vision
Conditions
Interventions
None listed
Sponsors
Stichting ter Verbetering van het Lot der Blinden
Eligibility
Age
2 Years to 17 Years
Inclusion criteria
Inclusion criteria: In order to obtain a representative research group, all children between the selected ages who are registered at the regional centres of Bartiméus and Royal Visio are invited to participate. Inclusion criteria are: o For the baby cohort: Age at the start of participation in the project is between six and 30 months. For the intensive cohort the age is between six and 20 months. For the teenager cohort: Initial age is between 12 and 14 years. o The participant has to grow up in a family, with care by one or two (foster/step)parents o Parents and teenager partcipants master the Dutch language o Registered at one of the regional centers of Bartiméus or Royal Visio. For the teenager cohort, registration for special education or itinerant teacher support also applies. o The following information must be present: visual functioning (minimum vision both eyes together or best eye, field of vision), type of eye condition, disorder/disease/syndrome, date of birth, term date, status comorbid disorders and sex. Parents and siblings of the children with VI (if present) will be involved in the study and they are asked to participate in the measurements. Participation of (a) parent(s) is compulsory, that of siblings is not. There is no age limit for the siblings when participating in video recordings (intensive cohort). For the measurements among well-being (extensive cohort), siblings should be at least four years old.
Exclusion criteria
Exclusion criteria: Children with clear multiple disabilities are excluded. This applies to the starting moment of participation in the project. For the baby cohort, children who may turn out to have multiple disabilities at a later age can participate in the project.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The fPCR framework is intended to be filled with empirical data. The outcome measures we use are: sense of self, preferences, activity competences, attendance and environment. These factors are operationalized by various instruments. Baby cohort: Preferences Expectations future Interview expectations for the future Well-being Cantril ladder Activity competences Sensorimotor understanding Reynell-Zinkin scales (RZS) Response to sound and verbal comprehension RZS Expressive language structure RZS Social Adaption RZS Social and emotional development Developmental Journal Babies Visual Impairment (DJVI) Communication language and meaning DJVI Play and learning DJVI Movement and mobility DJVI Towards independent self-care DJVI Mental Health Child Behaviour Checklist (CBCL) Vision impairment Type/cause vision impairment Sense of self Motivation Dimensions of Mastery Questionnaire (DMQ) Environment Family function Vragenlijst Gezinsfunctioneren voor Ouders (VGFO) Well-being parents Cantril ladder Well-being siblings Cantril ladder Encouragement PICCOLO Affection PICCOLO Responsiveness PICCOLO Teaching PICCOLO Parenting Nijmeegse Opvoedingsvragenlijst (NOV: autonomy, responsiveness Amsterdamse versie van Parental Attitude Research Instrument (APARI: autonomy, overpretection) Vragenlijst Toezicht Houden (VTH: supervision) Parental Dimension Inventory (PDI: consistency) Parental self-efficacy Self-efficacy in the Nurturing Role Questionnaire (SENR) Self-esteem parents The Rosenberg self-esteem scale (RSES) Important life situations interview (3 questions) Participation Attendance Diary activities child with VI Tiener cohort: Preferences Expectations future Interview expectations for the future Well-being Cantril ladder Experience of parenting Interview about experiences of the parenting Activity competences Cognitive functioning Schooltype Independence of mobility Interview Adaptive behaviour Vineland Adaptive Behavior Scales | — |
Secondary
| Measure | Time frame |
|---|---|
| not applicable. | — |
Countries
Netherlands
Outcome results
None listed