Having a child in a clinical study can affect the whole family. Parents must think about the amount of time that will be required, the emotional impact on the family and how to give and get support when their child is in a study.
Time
The time and the number of demands on the family can vary widely between studies.
- A lot of studies simply ask a child a few questions after they get a medication—this may take ten minutes.
- Some studies can be short with few demands, such as, one extra blood draw.
- Other studies can take years. They may have repeat visits weekly or monthly. They may require a hospital stay. Those studies can have a bigger time burden than others.
The time commitment and effect on the family depends a lot on the nature and length of the study, the age of the child and the condition. It is important that you understand what will be asked of you and your child.
You may want to ask the following questions:
- Will I need to take time off of work?
- Will any overnight stays be required?
- Will we need to do any long-distance travel?
- How much time will I spend at home keeping diaries, answering surveys, or giving medicines and doing procedures for the study?
- How much time will any procedures require?
Emotional Impact
Being in a study can require effort and understanding from every member of the family. Participating in a study may also take time away from other children and normal family activities. Added to this is the emotional stress of realizing that your child may be sick and may, for a time anyway, not be like other kids.
You may want to ask the following questions:
- How much information should I give to my child about the study and what will happen?
- How can my family cope with being in a study especially if my child is sick?
- Who can care for my other children during study visits or overnight stays?
- How will I manage my family and work responsibilities if we are in a study?
- Will my child be able to participate in regular school and social activities?
Giving and Getting Support
Seeking out help and sharing the burden with trusted family, friends, teachers, and community members can help parents and children throughout a study.
Study teams are part of that network too and have resources to help with the stress of having a sick child or with the additional activities you may have been asked to do. Talk to your research team for help.
You may want to ask the following questions:
- How can I support my child and my other children during a study?
- Who can help support me during this time?
- Who can help me make decisions?
- Are there support groups, other parents, or social workers I can speak with?
- How can the study team make it easier for us to join and stay in the study?
