Initial consent processesHaving to seek either full consent or nothing—no assent process Parents not wanting all of the information or not listening Parents put off by blood samples What to do where a mother consents and then someone else wants her to change her mind—what if the mother still wants the child to be in the study
Consenting controls Ending the study Ending the study when a child has died and verbal autopsies (VAs) | Some elements of the study emotionally challengingBlood sampling: Painful to hear children cry and mothers upset Socioeconomic status, nutrition and mental health questions: Because of the questions that have to be asked, getting to hear about, for example, how hungry families are and about high levels of depression
Levels of compensation of families:‘Small’ differences between studies in what is given/paid for a routine study clinic—for example, if a banana is given, and 350/=vs 300/= Lack of clarity on lunch provision for hospital visits over lunch and whether food/fares can be given to others accompanying the mother to hospital Home visits for research costing household members money (cannot earn) or preventing household (HH) tasks, especially where take longer than expected Why cannot we give more to people who earn more, otherwise they will drop out?
Referral of inadequate perceived quality or unlikely to be taken upWhere the types of clinical needs are way beyond what’s easily desirable, available or affordable to families Where does a referral end? For example, depressed mother
| Ability to help as fellow community members Attending funerals Levels of compensation of staff for emergency costs incurred Other |