(1) To assess parent-child attachment and interaction in a cohort of children and adolescents known with IF and (a history of) home PN dependence, and (2) to assess cognitive development and social-emotional functioning in these children.
ID
Source
Brief title
Condition
- Gastrointestinal tract disorders congenital
- Gastrointestinal conditions NEC
- Gastrointestinal therapeutic procedures
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
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 outcome
Cognitive impairment and social-emotional problems, measured by age attuned
psychological instruments.
Background summary
The last decades, parenteral nutrition (PN) treatment in multidisciplinary
teams has tremendously improved intestinal failure (IF) survival rates and
decreased complications. Therefore, new challenges become apparent, concerning
cognitive development, social-emotional aspects and parent-child relationship.
Secure attachment is thought to be the basis for future psychosocial
competence, and is associated with better cognitive development in later life.
We hypothesize that a disturbed parent-child relationship is common in children
with IF, since these children are hospitalized for a great part of their
childhood with multiple caregivers and changes in parental roles. Parent-child
interaction may be challenged even more in children with IF depending on PN,
due to the presence of major feeding problems. In early life, the process of
feeding and the interaction and contact between parent and child during feeding
is very important in the development of attachment. Diminished (oral) feeding
opportunities disturb parent-child bonding. Also, after hospital admission,
parents are trained to do all the required complex medical treatments at home,
including administration of the PN and emergency care of the central venous
line (CVL). This demanding daily medical care can pressurize the parent*s role
in a child*s development.
Furthermore, in studies of children with chronic diseases, congenital
gastrointestinal disorders and preterm birth - which have aspects in common
with children with IF - it was shown that they have impaired cognitive
development and social-emotional problems at a later age. We expect to find
this in children with IF too, maybe even to a larger extent because of multiple
line infections (affecting the brain), limited freedom of movement due to the
PN (impeding exploratory play), and experiencing (social) mealtimes
differently.
Study objective
(1) To assess parent-child attachment and interaction in a cohort of children
and adolescents known with IF and (a history of) home PN dependence, and (2) to
assess cognitive development and social-emotional functioning in these
children.
Study design
Cross-sectional observational cohort study. Age-specific psychological
questionnaires, interviews and observations will take place to assess
parent-child attachment and interaction, cognitive development, and
social-emotional functioning in children and adolescents with IF. Also, the
Pediatric Quality of Life Inventory Gastrointestinal module (PedsQL GI) will be
filled out to evaluate feeding problems and gastrointestinal complaints.
Study burden and risks
The risks of participating in the study are negligible. Children and/or their
parents will be asked to fill out five to six questionnaires, taking one and a
half hour in total to complete. A psychological interview and observation will
take place and a cognitive test will be done, taking four and a half hours in
total. There is some burden of participating in the study, since all
investigations are not part of standard care, cost time, and can be mentally
demanding. However, children will be investigated for study purposes during
standard outpatient clinic visits as much as possible, so no extra visits are
required. Parents will be compensated for travel expenses and children will
receive a study present. Also, if necessary based on the results of the
psychological assessment, children (and their parents) will be offered
appropriate treatment and guidance. In this way, individual participants may
directly benefit from participating. When we indeed find increased parent-child
interaction problems in our pediatric IF population, we can in the future take
early necessary measures and offer guidance to parents and children with IF.
Hereby we help vulnerable children and their parents, to prevent cognitive and
psychosocial problems later in life.
Wytemaweg 80
Rotterdam 3015 CN
NL
Wytemaweg 80
Rotterdam 3015 CN
NL
Listed location countries
Age
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
- 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
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL67145.078.19 |