Conrad V. Fernandez|Jun Gao|Caron Strahlendorf|Albert Moghrabi|Rebecca D. Pentz|Raymond Barfield|Justin N. Baker|Darcy A. Santor|Charles Weijer|Eric Kodish
Providing Research Results to Participants: Attitudes and Needs of Adolescents and Parents of Children With Cancer
Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University|Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University|Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University|Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University|Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University|Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University|Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University|Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University|Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University|Izaak Walton Killam Health Centre|Cancer Care Nova Scotia|Dalhousie University
purpose increasing demand researchers provide research results participants aim define appropriate process based needs attitudes participants methods multicenter survey five sites united states canada offered parents children cancer adolescents cancer respondents indicated preferred mode communication research results respect implications timing provider content results reasons providing results barriers providing results results four hundred nine parents including 19 deceased children 86 adolescents responded parents n 385 942 felt strong right research results positive results wanted letter email summary n 238 582 phone call followed letter n 100 244 results negative phone call n 136 333 personal visits n 150 367 preferred parents wanted summary include longterm sequelae suggestions participants n 341 834 effect future treatments n 341 834 subsequent research steps n 284 695 understanding researcher main concern receiving results n 145 355 parents felt results provide information support quality life n 315 77 raise public awareness research n 282 689 adolescents identified similar preferences conclusion parents children cancer adolescents cancer feel strongly right offered research results specific preferences information communicated