'Where Does it Come from?' Experiences Among Survivors and Parents of Children with Retinoblastoma in Kenya
| Autor: | Njambi L, Kahaki Kimani, Helen Dimaras, Amal Gedleh, Kitonyi Gw, Jessica A. Hill, Joy Kabiru, Siwon Lee, Seemi Qaiser, Yvonne Umukunda |
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| Rok vydání: | 2017 |
| Předmět: |
0301 basic medicine
Male Parents medicine.medical_specialty Genetic counseling Retinal Neoplasms Genetic Counseling 030105 genetics & heredity 03 medical and health sciences Cancer Survivors Health care medicine Humans Genetic Testing Child Genetics (clinical) Qualitative Research Genetic testing medicine.diagnostic_test business.industry Retinoblastoma Public health Focus Groups medicine.disease Focus group Kenya eye diseases Family medicine Child Preschool Female Thematic analysis business Qualitative research |
| Zdroj: | Journal of genetic counseling. 27(3) |
| ISSN: | 1573-3599 |
| Popis: | 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: | OpenAIRE |
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