intestinal failure / chronic intestinal failure
Conditions
Interventions
None listed
Sponsors
Erasmus MC, Universitair Medisch Centrum Rotterdam
Eligibility
Age
No minimum to 64 Years
Inclusion criteria
Inclusion criteria: 1. Children known with intestinal failure, who receive parenteral nutrition at home and therefore (regularly) visit the outpatient clinic of the multidisciplinary intestinal failure team of the Erasmus MC Sophia Children*s Hospital (Rotterdam) or Amsterdam UMC Emma Children's Hospital (Amsterdam). 2. Children previously dependent on parenteral nutrition at home in the past and now still visiting the outpatient clinic of the multidisciplinary intestinal failure team or the CHIL (surgical long term follow up) of the Erasmus MC Sophia Children*s Hospital for feeding difficulties or regular follow up.
Exclusion criteria
Exclusion criteria: - Participation in an intervention study, interfering with the primary outcome of this study - Absence of written informed consent - Insufficient knowledge of the Dutch language of the parents/caregivers and participants (if older than 12 years)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Disturbed parent-child attachment and interaction, measured by the Attachment Insecurity Screening Inventory (AISI), Emotional Availability Scales (EAS) and the Parent-Child Interaction Questionnaire-Revised (PACHIQ-R). | — |
Secondary
| Measure | Time frame |
|---|---|
| Cognitive impairment and social-emotional problems, measured by age attuned psychological instruments. | — |
Countries
Netherlands
Outcome results
None listed