Children living with 22q11DS often have a range of health problems which can make life more challenging for themselves, as well as their parents and/or other family members. Studies have found that families with a member who has 22q11 report feeling stress, facing stigma, and feelings of uncertainty for their child’s wellbeing. Along with these difficulties, families may experience a major cost increase due to things such as medical equipment, hospital stays, or caregiver fees. Recognizing these challenges is important when trying to help these families with the difficulties they face.
The eCare-22q11 initiative aims to gain a better understanding of these difficulties, and above all of the needs of the people who provide daily support to these children, in order to make their lives easier.
This international study brings together experts in genetics and e-health to :
- Identify the social, mental and financial difficulties faced by caregivers of children with 22q11 syndrome.
- Create accessible and easy online coaching to help and support caregivers through their difficulties.
- Ensure that patients/carers are strongly involved so that coaching really targets their needs.
Requirements for participation:
- You are over 18 years old,
- You are caring for a child aged between 3 and 15 (for at least 6 months).
- You speak English, French or German