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

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 retinoblas...

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Bibliographic Details
Published in:Journal of genetic counseling 2018-06, Vol.27 (3), p.574-588
Main Authors: Gedleh, Amal, Lee, Siwon, Hill, Jessica A., Umukunda, Yvonne, Qaiser, Seemi, Kabiru, Joy, Kimani, Kahaki, Njambi, Lucy, Kitonyi, Grace, Dimaras, Helen
Format: Article
Language:English
Subjects:
Biomedical and Life Sciences
Biomedicine
Cancer
Childhood
Children
Clinical Psychology
Ethics
Eye
Eye diseases
Focus groups
Genetic counseling
Genetic screening
Genetic testing
Genetics
Gynecology
Health care
Human Genetics
Inheritance
Kenya
Medical diagnosis
Original Research
Patient perspectives
Public Health
Qualitative research
Questionnaires
Retina
Retinoblastoma
Survivor
Tumors
Uptake
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Summary: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.
ISSN:1059-7700
1573-3599
DOI:10.1007/s10897-017-0174-8