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Table 5 Qualitative summary of the focus group discussions (FGD) conducted among parents/primary caregivers of the children who dropped out and from the study

From: Why do participants drop-out: findings from a prospective pediatric cohort for fever surveillance established at Vellore, southern India

FGD question

Response of the participants

What were the reasons that influenced your decision to withdraw your child from the study?

“FRA visiting home/calling every week asking about fever is too much; FRA in previous studies contacted us only once-a-month.”

“My husband dislikes male FRA visiting our house.”

“As soon as the FRA inquires about any fever, my child immediately falls sick.”

“Too much of blood is being drawn from my child for a blood test.”

“Collecting blood from my child for testing makes my child very weak.”

“My child became weak after the last blood test.”

“Study clinic initiates antibiotics for my child only after three days of fever whilst private practitioners initiate antibiotics and gives injections early, and hence recovery is faster with care from a private practitioner.”

“At the time of consenting, I was not aware that a blood test would be requested if my child has a fever for more than 3 days.”

“My daughter has attained puberty.”

“My child’s school is strict and does not permit leave for my child to visit the study clinic for a blood test.”

“There is no specific reason, but my husband does not want our child to participate in the study further.”

Did you read and understand the information sheet before signing the consent form?

“I am not sure if I read the information sheet before consenting.”

“I did not read the information sheet, but my husband did.”

“I read and understood the information sheet and consented, however, I later changed my mind as I did not want my child to be subjected to the voluminous and frequent blood tests.”

“Yes, I read the information sheet and signed it, as I thought it is good for my child to be in the study no matter what.”

Did you discuss with husband/family members before enrolling your child in the study?

“No, I did not discuss with my husband or family members before joining the study. I decided to enrol my child in the study on my own and hence consented.”

According to you, what were the good aspects of the study?

“The FRA advised us to boil water and drink at all times especially during the rainy season, and that prevented my family members from falling sick too often.”

“FRAs taught us the importance of wearing foot-wear, washing vegetables before use and handwashing.”

Do you think research is helpful to your community?

Yes, previous studies in the area helped bring in a new vaccine* by the government to protect children from diarrhoea.

Will you participate in future research studies if conducted in your area?

“Yes, we will participate provided there are no blood tests in children.”

“We will decide when a study comes up in the future.”

“No, I will not participate as my husband is against research studies on my child.”

  1. † unknown injections *Rotavirus vaccine