Distress and support needs of siblings of children with congenital heart disease
Conditions
Interventions
Group 1: Siblings of children with CHD and one parent each complete a one-time brief questionnaire, are interviewed once, and a one-time observation form is completed.
Sponsors
Klinik und Poliklinik für Kinderkardiologie, Uniklinik Köln
Eligibility
Sex/Gender
All
Age
10 Years to No maximum
Inclusion criteria
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
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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Concerns, distress and factors influencing well-being and quality of life in siblings of children with CHD. 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
| Measure | Time frame |
|---|---|
| Needs, or requirements regarding an intervention. 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. | — |
Countries
Germany
Contacts
Public ContactAlice Schamong
Klinik und Poliklinik für Kinderkardiologie, Uniklinik Köln
Outcome results
None listed