Table 1

Ethics issues and dilemmas raised by frontline staff

Consenting for and ending the study	Conducting study procedures: blood sampling, compensation and ancillary care	Broader interactions and relationships
Initial consent processes Having 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 How can we ask them to give samples when their children are not even sick? Ending the study Families wanting to stay part of KEMRI or believing the child must be well Ending the study when a child has died and verbal autopsies (VAs) Are some families who lose study children being subjected to two VA Feeling underprepared and undersupported to conduct VAs	Some elements of the study emotionally challenging Blood 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 up Where 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 What we are allowed to give/do as we normally would as clinicians or as community members without undermining the study procedures and goals? Attending funerals Can/should field staff attend funerals where children have died in studies? Can they offer a condolence fee? Levels of compensation of staff for emergency costs incurred Being unable to refunded by the research centre for unexpected costs incurred out of humanitarian support Other Handling romantic advances from study parents to staff

Consenting for and ending the study

Conducting study procedures: blood sampling, compensation and ancillary care

Broader interactions and relationships

Initial consent processes

Having 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

How can we ask them to give samples when their children are not even sick?

Ending the study

Families wanting to stay part of KEMRI or believing the child must be well

Ending the study when a child has died and verbal autopsies (VAs)

Are some families who lose study children being subjected to two VA
Feeling underprepared and undersupported to conduct VAs

Some elements of the study emotionally challenging

Blood 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 up

Where 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

What we are allowed to give/do as we normally would as clinicians or as community members without undermining the study procedures and goals?

Attending funerals

Can/should field staff attend funerals where children have died in studies? Can they offer a condolence fee?

Levels of compensation of staff for emergency costs incurred

Being unable to refunded by the research centre for unexpected costs incurred out of humanitarian support

Other

Handling romantic advances from study parents to staff