Intellectual disability, epilepsy Intellectual disability, epilepsy
Conditions
Interventions
Not applicable.
Sponsors
Stichting Epilepsie Instellingen Nederland (SEIN)
Eligibility
Age
2 Years to 64 Years
Inclusion criteria
Inclusion criteria: -Parents/caregivers involved in the care of children and young adults aged 0-30 with refractory epilepsy and an intellectual disability who live at one of the two organizations involved (SEIN or Kempenhaeghe). - Diagnosis of epilepsy according to the clinical definition by Fisher et al. (2014). - Diagnosis of intellectual disability or current adaptive functioning at the level of intellectual disability as assessed by the client's behavioral scientist.
Exclusion criteria
Exclusion criteria: - Parents/caregivers involved in the care of individuals over 30 years of age. - Parents/caregivers involved in the care of individuals without intellectual disabilities. - Parents/caregivers involved in the care of individuals who have not been diagnosed with epilepsy.- Children/young adults not living at one of the two organizations involved (SEIN or Kempenhaeghe).
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The child-parent relationship;Quality of life of the children/young adults;Family-centered care;Parental involvement quantity (parent-child contact);Parental involvement quality (experiences regarding parental involvement). | — |
Secondary
| Measure | Time frame |
|---|---|
| Demographic data of the parents/carers and children;Severity of the epilepsy;Severity of the intellectual disability;Behaviour of the children/young adults. | — |
Countries
Netherlands
Contacts
Public ContactL. Verhoeks
Stichting Epilepsie Instellingen Nederland (SEIN)
Outcome results
None listed