ArticleJournal of genetic counseling2018
"Where Does it Come from?" Experiences Among Survivors and Parents of Children with Retinoblastoma in Kenya.
Article in Journal of genetic counseling, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
9 citing papers in PubMed, 25 citations in OpenAlex.
- Narrative review on ethical and psychological issues raised by genetic and genomic testing in pediatric oncology care.Journal of genetic counseling · 2025Review
- Development and preliminary evaluation of a genetics education booklet for retinoblastoma.Journal of genetic counseling · 2025Article
- Cancer health literacy in Kenya - A scoping review on evidence, concept and a situational analysis of interventions.Frontiers in public health · 2025Article
- Toward advances in retinoblastoma genetics in Kenya.Nature genetics · 2024Article
- Self-Reported Late Effects in Childhood Cancer Survivors in Kenya.African health sciences · 2024Article
- Improving health and social systems for all children in LMICs: structural innovations to deliver high-quality services.Lancet (London, England) · 2022Review
- Children's and adolescents' experiences of healthcare professionals: scoping review protocol.Systematic reviews · 2020Article
- Parent Knowledge of Screening and Genetic Testing in Retinoblastoma.Journal of ophthalmology · 2020Article
- Paroxysmal Kinesigenic Dyskinesia: First Molecularly Confirmed Case from Africa.Tremor and other hyperkinetic movements (New York, N.Y.) · 2019Article
Corrections and comments
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Authors and funding
10 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.