"Where Does it Come from?" Experiences Among Survivors and Parents of Children with Retinoblastoma in Kenya.

Autor: Gedleh A; Division of Social & Behavioural Sciences, University of Toronto, Toronto, Canada., Lee S; Division of Social & Behavioural Sciences, University of Toronto, Toronto, Canada., Hill JA; Department of Ophthalmology & Vision Science, The Hospital for Sick Children, 555 University Ave, Toronto, ON, M5G 1X8, Canada., Umukunda Y; Human Biology Program, University of Toronto, Toronto, Canada., Qaiser S; Human Biology Program, University of Toronto, Toronto, Canada., Kabiru J; Presbyterian Church of East Africa Kikuyu Hospital Eye Unit, Kikuyu, Kenya., Kimani K; Kenyatta National Hospital, Nairobi, Kenya.; Department of Ophthalmology, University of Nairobi, Nairobi, Kenya., Njambi L; Kenyatta National Hospital, Nairobi, Kenya.; Department of Ophthalmology, University of Nairobi, Nairobi, Kenya., Kitonyi G; Kenyatta National Hospital, Nairobi, Kenya.; Department of Human Pathology, University of Nairobi, Nairobi, Kenya., Dimaras H; Department of Ophthalmology & Vision Science, The Hospital for Sick Children, 555 University Ave, Toronto, ON, M5G 1X8, Canada. helen.dimaras@utoronto.ca.; Human Biology Program, University of Toronto, Toronto, Canada. helen.dimaras@utoronto.ca.; Department of Human Pathology, University of Nairobi, Nairobi, Kenya. helen.dimaras@utoronto.ca.; Division of Clinical Public Health, Dalla Lana School of Public Health, University of Toronto, Toronto, Canada. helen.dimaras@utoronto.ca.; Department of Ophthalmology & Vision Science, Faculty of Medicine, University of Toronto, Toronto, Canada. helen.dimaras@utoronto.ca.; Child Health Evaluative Sciences Program, SickKids Research Institute, Toronto, Canada. helen.dimaras@utoronto.ca.; Centre for Global Child Health, SickKids Research Institute, Toronto, Canada. helen.dimaras@utoronto.ca.
Jazyk: angličtina
Zdroj: Journal of genetic counseling [J Genet Couns] 2018 Jun; Vol. 27 (3), pp. 574-588. Date of Electronic Publication: 2017 Nov 23.
DOI: 10.1007/s10897-017-0174-8
Abstrakt: Genetic testing and counseling have become integral to the timely control of heritable cancers, like the childhood eye cancer retinoblastoma. This study aimed to determine attitudes, knowledge and experiences related to retinoblastoma genetics, among survivors and parents of children with retinoblastoma in Kenya. This qualitative study used focus groups as the primary data collection method, coupled with a brief demographic questionnaire. Study settings were Kenyatta National Hospital and Presbyterian Church of East Africa Kikuyu Hospital. Thematic analysis was used to identify key themes. Thirty-one individuals participated in five focus groups. Two main concepts emerged: (1) the origins of retinoblastoma are unclear, and (2) retinoblastoma is associated with significant challenges. The lack of clarity surrounding the origins of retinoblastoma was linked to limited knowledge of retinoblastoma genetics, and limited genetic counseling delivery and uptake. The challenges associated with retinoblastoma were discussed in terms of the impact of the diagnosis on individuals and families, and unmet healthcare needs related to the diagnosis. Next steps will incorporate these findings to develop evidence-informed and accessible cancer genetic services in Kenya.
Databáze: MEDLINE
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