Table 1

Ethics issues and dilemmas raised by frontline staff

Consenting for and ending the studyConducting study procedures: blood sampling, compensation and ancillary careBroader 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

  • Handling romantic advances from study parents to staff