In Norway, 100-120 children are born with CLP (1.9 per 1,000 live births) each year. Parents of infants with CLP need information and support, especially with feeding immediately after birth. These needs are often not met. The purpose of this study is to investigate the effect of systematic follow ups of parents with infants with CLP performed by a special trained nurse. Parental information needs, parental coping and stress and infant growth and feeding will be explored and compared to a control group receiving standard care. 26 parents (mothers and fathers) or more shall be included in each group according to specific criteria. The control should be examined first. Both groups will answer questionnaires 3 times during the child's first year.
Study Type
INTERVENTIONAL
Allocation
NON_RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
145
Comparison between Arm A who will receive standard care and Arm B who will receive systematic follow up performed by a special trained nurse will be performed.
Oslo university hospital; Rikshospitalet
Oslo, Norway
Parental stress as measured by Parenting Stress Index (PSI), Perceived Stress Scale (PSS)
Both groups
Time frame: 1 month post partum
Parental coping as measured by Post-Discharge Coping Difficulty Scale (PDCDS)
Both Groups
Time frame: 1 month post partum
Quality of discharge teaching as measured by Quality of Discharge Teaching Scale (QDTS)-Parent form
Both groups
Time frame: 1 month post partum
Infant growth as measured by "Demographic data Questionnaire" and "Child health card"
Both groups
Time frame: 1 month post partum
Infant feeding as measured by Survey of infant diets and "Feeding Questionnaire" (study specific questionnaire)
Both groups
Time frame: 1 month post partum
Parental stress as measured by Parenting Stress Index (PSI), Perceived Stress Scale (PSS)
Both groups
Time frame: 6 months post partum
Infant feeding as measured by Survey of infant diets and "Feeding Questionnaire" (study specific questionnaire)
Both groups
Time frame: 6 months post partum
Parental stress as measured by Parenting Stress Index (PSI), Perceived Stress Scale (PSS)
Both groups
Time frame: 13 months post partum
Infant growth as measured by "Child health card"
Both groups
Time frame: 13 months post partum
Infant feeding as measured by Survey of infant diets and "Feeding Questionnaire" (study specific questionnaire)
Both groups
Time frame: 13 months post partum
Parental views on the follow up as measured by "Response on the follow up" (study specific questionaire)
Both groups
Time frame: 6 months post partum
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