@article{fdi:010075289,
  title = {{I}mproving the informed consent process among {HIV}-infected undisclosed minors participating in a biomedical research : insights from the multicentre nutritional {SNACS} study in {S}enegal},
  author = {{H}ejoaka, {F}. and {V}arloteaux, {M}arie and {D}esclaux-{S}all, {C}. and {N}diaye, {S}. {M}. and {D}iop, {K}. and {D}iack, {A}. and {N}iasse, {F}. and {C}ames, {C}{\'e}cile},
  editor = {},
  language = {{ENG}},
  abstract = {{O}bjectives {P}roviding research information in a manner accessible to minors participating in biomedical research is a major challenge. {G}uidance is dramatically lacking regarding best practices for seeking informed consent among undisclosed minors enrolled in {HIV}-related research. {W}e implemented an improved informed consent process ({IICP}) and identified factors associated with understanding of the information presented to {HIV}-infected minors prior to their enrolment in a study. {M}ethods {W}e enrolled study participants attending 12 paediatric {HIV} clinics in {S}enegal. {C}hildren >= 7 years were provided with standardised research information using the {IICP}, which involves viewing a video and taking part in extended group discussions. {U}nderstanding was assessed by seven basic questions scored 1 or 2 points, with a maximum score of 11 points. {A} score of 9 or more points was defined as satisfactory understanding. {F}actors associated with understanding were identified using a stepwise logistic regression model. {R}esults {O}verall, 112 children, with a median age of 12.9 years ({IQR}: 10.2-15.0), participated in the {IICP}, of whom 37% were {HIV} disclosed. 71% achieved a satisfactory understanding score and all gave consent to participate in the research. {HIV}-disclosed children were more likely to demonstrate satisfactory understanding than undisclosed children (a{OR} = 3.2, 95% {CI}: 1.1-9.6). {A}ge, study setting and education level were not associated with satisfactory understanding. {C}onclusion {T}hese findings provide practical guidance for the development of improved and friendly informed consent processes in research involving minors. {T}he implementation of the paediatric {HIV} research agenda will require a standardised and operational definition of informed consent, integrating the issue of {HIV} disclosure.},
  keywords = {informed consent ; paediatric research ; {HIV} research ; research ; information ; ethics ; adolescents ; {HIV} disclosure ; sub-{S}aharan {A}frica ; {SENEGAL} ; {AFRIQUE} {SUBSAHARIENNE}},
  booktitle = {},
  journal = {{T}ropical {M}edicine and {I}nternational {H}ealth},
  volume = {24},
  numero = {3},
  pages = {294--303},
  ISSN = {1360-2276},
  year = {2019},
  DOI = {10.1111/tmi.13202},
  URL = {https://www.documentation.ird.fr/hor/fdi:010075289},
}