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Studies may be short or very long - recognizing the effect of a research study on siblings or other family members should be discussed.

Effect on the Family

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 like 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:

  • 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...and may 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...may, for a time anyway, not be like other kids.

You may want to ask:

  • 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:

  • 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?
This graphic visually depicts the role of many people or groups in a study, including family, friends, teachers, communities, and neighborhoods.

"It's just a couple of extra trips down to the hospital...But it really just involved a matter of a few hours time."
Jose, father of child in heart defect study

"...it takes a lot of planning and...getting things lined up where you can take off to come up here and do things you need to do. You just make plans ahead of time and make the arrangements you need to make..."
Britt, parent of child in chronic granulomatous disease study

"...it's devastating again at the beginning. Everybody had their tears to shed. But it's brought everybody closer. Everybody knows everything. Family's a good- a good support."
Dawn, mother of child in chronic granulomatous disease study

"...within the space of an hour or two, we may be talking about some very difficult decisions that a family needs to make...if there is a research protocol, getting engaged in that..."
Dr. Joe Wright, Pediatrician

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