Impact of Providing Nursing Support on Parental Stress Related to Preoperative Care of a Newborn With Hirschsprung's Disease
Hirschsprung Disease
What this study involves
The registry says this study is recruiting. Individual locations may have different availability.
- Study type
- Interventional
- Phase
- Not applicable
- Age range
- Not specified - Not specified
- Sex eligible
- All sexes
- Healthy volunteers
- Not accepted
- Participants
- 20 Estimated
These are starting points, not an eligibility decision. The research team must review the full requirements.
About the research
Impact of providing nursing support on parental stress related to preoperative care of a newborn with Hirschsprung's disease
Who may be able to participate?
The list below is the sponsor’s full registry wording. It can include conditions, prior treatment, test results and other requirements. A match in search does not mean you qualify.
Inclusion Criteria:
- Families (one or two parents) with a newborn or infant under 2 months with confirmed or suspected Hirschsprung disease, for whom nursings are effective and performed 1 to 2 times a day while waiting for surgery.
- With a possible return home before surgery
- With an information leaflet and non-opposition form signed by one or both parent(s) or by the legal representative.
Exclusion Criteria:
- The absence of daily nursings
- Initial ineffectiveness of nursings requiring a digestive stoma
- Failure to return home before surgery
- Refusal of one or both parent(s) or legal representative(s)
Treatment, groups and participation
The registry may describe treatments and study duration without a complete visit calendar. Ask the study team for the exact schedule, procedures, risks, costs and alternatives. Keep your usual care plan unless your treating clinician tells you otherwise.
- Assignment
- Not randomized
- Masking
- Single masked
With Hospitalisation at Home (HAH)
families living in Marseille, whose parents will be able to return home under the supervision of nursery nurses from the pediatric HAH.
Behavioral: Pediatric HAH
Without Hospitalisation at Home (HAH)
Families living outside Marseille whose parents will have to carry out nursings at home independently, without the help of pediatric HAH.
Pediatric HAH BEHAVIORAL
Pediatric HAH nursing support for home nursery care provided by parents as part of their child's disease.
What researchers are measuring
Outcome measures describe what is being studied. They are not proof that a treatment works.
Primary measures
Questionnary to evaluate stress on parents
Time frame: From enrollment to the end of treatment at 6 months
Evaluation of the impact on parental stress of nursing support by pediatric HAH in nursery care performed at home by parents as part of their child with Hirschsprung using Perinatal Posttraumatic Stress Disorder Questionnaire (PPQ).
Secondary measures
Auto-Questionnary MIB (Mother Infant Bounding) to evaluate the impact of nursing support
Time frame: From enrollment to the end of treatment at 6 months
Estimate the impact of nursing support by pediatric HAH in nursery care performed at home by parents on the development of the parent-child bond, the burden felt by parents in relation to their child's illness, the length of pre-operative hospital stay (initial and re-hospitalization), the pre-operative complications (recurrent occlusion, enterocolitis) and the home nursing care provided by parents (quality of nursings, pace of nursings, difficulties encountered, child's tolerance)
Self-Questionnary Burden inventory to evaluate the nursery training provided
Time frame: From enrollment to the end of treatment at 6 months
Evaluate nursery training provided by the paramedical team (feedback from parents) : parent training (nursing, understanding illness, understanding illness-related risks) and training aids (sheet, video)
Review the complete result tables and limitations in the official record.
Open official results ↗Research locations (1)
The overall study status and a local site’s status can differ. Confirm that location’s availability before traveling.
1 locations
APHMMarseille, FranceRecruiting
Study team and timeline
- Lead sponsor
- Assistance Publique Hopitaux De Marseille
- Study start
- Aug 14, 2023 Actual
- Primary completion
- Feb 13, 2027 Estimated
- Study completion
- Feb 13, 2027 Estimated
- First posted
- Oct 21, 2024 Actual
- Last updated
- Nov 10, 2026 Actual
Official study contacts
Official study title
Impact of Providing Nursing Support on Parental Stress Related to Preoperative Care of a Newborn With Hirschsprung's Disease
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Source: ClinicalTrials.gov API v2. Information is submitted by sponsors and investigators. NLM does not approve the safety or science of all listed studies. Registry disclaimer.
Retrieved: Nov 12, 2026 · Last registry update: Nov 10, 2026