204
adolescent 78, 127, 152-153, 172
1
agency 12, 14, 41, 65, 107, 152, 172
anonymity 36, 74, 76-77, 82-83, 119, 122, 157, 159, 172
waiving anonymity 82, 119
appreciation payments, see also incentives and payment 89, 92, 110, 175
armed conict 40, 42, 123, 125, 196, 200
artwork 61, 76, 84
assent 60-62, 83, 117, 172
benet
of children’s participation in research 14-17, 23, 29-51, 58, 61-63, 67, 78, 82, 87-89, 104, 107,
116-137, 158, 163-165, 172, 188-190, 198
benecence 16-17, 26, 31, 43, 36, 48, 80, 82, 92, 104, 172
see also non-malecence
biomedical studies 31, 34, 38, 43, 60, 63, 74-76, 99, 194, 198
caregivers, see also parents 13, 26-27, 31, 33, 43, 45, 130, 145, 151, 158
case studies ii, 3, 115-166
Centre for Children and Young People, Southern Cross University 5
child
denition of 7-8, 172
evolving capacities 7-8, 23, 44, 47, 56-59, 81, 106
child protection, see safety
child-led research, see also peer research 49, 97
children
aected by hiv/aids 32, 45, 65, 76, 130, 132, 150, 153, 188, 199
and ethics 50, 135-137
asylum seeking 47, 59, 138
children’s relationships 37, 121
competence 14, 31, 60, 70, 75, 100, 111
consciousness-raising 43
disadvantaged 32, 38, 90-92, 145
distress during, or following, research participation 30-31, 39-40, 42, 44-45, 52, 68, 105, 111,
121,130-131, 155, 160, 174, 188
homeless 34, 38, 67
inclusion of 14, 16-17, 38-39, 48-49, 81, 100, 105, 123-124, 134-135, 138, 188
out-of-home care 81, 120, 159-161
marginalised 51, 105, 125, 154
representation of 12, 37, 39, 49, 83, 123-125
unaccompanied 38, 40, 66, 138-140, 188
vulnerable/vulnerability 2, 14, 38-39, 42, 44, 48, 58, 60, 65-67, 91, 133, 138, 140, 150-151, 160,
177, 188
with disability 38-39, 49, 58, 64, 79, 105, 109, 119, 134, 153, 147-148, 154-156, 189, 198
Children’s Issues Centre, University of Otago 5
Childwatch International Research Network 5
clinical research 33, 43, 48, 63, 111, 118, 128-129, 132, 191
condentiality
in focus groups 37, 79, 121-123
in online research 35, 44, 48, 83
limits when there are safety concerns 35, 46, 80, 84, 111, 157-158, 172, 191-192
community
consultation, see also consultation, local 46, 56-57, 79, 88, 90, 97, 117,189, 193
compensation, see also incentives, payment and reimbursement 87-93, 110, 117, 162-165, 175, 192-194
consent
caregiver consent, see also parental consent 66-67, 150
collective consent 57, 63
informed consent 14 – 15, 23, 27, 42-43, 48, 55-70, 76-77, 83, 89, 91, 100, 107, 111, 119, 129,
138-139, 138-151, 159, 163, 165, 174, 190-191
in group contexts 58-59, 138-141
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Numbers in bold type indicate the page number in the Glossary of Terms where the term is dened.