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Qualitative interview study exploring distress and support needs of siblings of children with congenital heart defects

Conditions
Distress and support needs of siblings of children with congenital heart disease
Registration Number
DRKS00025031
Lead Sponsor
Klinik und Poliklinik für Kinderkardiologie, Uniklinik Köln
Brief Summary

Not available

Detailed Description

Not available

Recruitment & Eligibility

Status
Complete
Sex
All
Target Recruitment
20
Inclusion Criteria

Children and adolescents/young adults aged 10 to 21 years who have a sibling with CHD
- Parents of children with congenital heart defects who also have a healthy sibling, ages 10 to 21, who has agreed to participate in this interview study (no age restriction)
- Stable mood according to self-assessment of the participants
- Informed, written declaration of consent to participate in the interviews of adult participants or of the legal guardians of non-adult participants who have been informed in detail and have given their own consent
- German as native language or very good knowledge of German

Exclusion Criteria

- Younger than 10 or older than 21 years (siblings)
- Currently unstable mood according to participant's self-assessment
- Lack of written informed consent from participants or legal guardians
- Lack of German language skills

Study & Design

Study Type
observational
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
Concerns, distress and factors influencing well-being and quality of life in siblings of children with CHD.<br><br>Measured by self-developed interview guide and brief questionnaire based on the findings of a previous Systematic Review of the working group regarding knowledge gaps in the above mentioned outcomes.
Secondary Outcome Measures
NameTimeMethod
eeds, or requirements regarding an intervention. <br><br>Measured by self-developed interview guide based on the findings of a previous Systematic Review of the working group regarding knowledge gaps in the above mentioned outcomes.
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