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.
IntroductionBreast cancer ranks among the most common adult cancers in Kenya. Individuals with a family history of the disease are at increased risk. Mutations most commonly associated with breast cancer affect BRCA1 and BRCA2; mutations in several other genes may also confer breast cancer risk. Genetic testing and counseling can help patients understand their risk and assist clinicians in choosing therapies. We aimed to uncover what patients know, experience, and think with regard to breast cancer genetics in Kenya.MethodsParticipants included breast cancer survivors age > 18 years. Participants completed a demographic questionnaire before participating in focus group discussions to uncover knowledge of, experiences with, and attitudes toward the genetics of breast cancer. Data were analyzed by inductive thematic analysis.ResultsFour focus groups were conducted. Participants had rudimentary knowledge about genetics and cancer development, and although they understood breast cancer could be familial, many suspected environmental factors causing spontaneous disease. They reported limited experience with counseling about genetic risk, perceiving that their physicians were too busy to provide comprehensive information. Many indicated they promoted cancer screening among family to promote early diagnosis. Participants expressed a need for more comprehensive counseling and access to genetic testing, recognizing the added clarity it would bring to their families’ risk of cancer.ConclusionImproved communication from health care teams could clarify the risk of cancer for affected families. The introduction of affordable genetic testing and counseling for breast cancer in Kenya is welcomed by survivors.
Armenia’s health spending is characterized by low public spending and high out-of-pocket expenditure (OOP), which not only poses a financial barrier to accessing healthcare for Armenians but can also impoverish them. We analyzed Armenia’s Integrated Living Conditions Surveys 2014–2018 data to assess the incidence and correlates of catastrophic health expenditure (CHE) and impoverishment. Households were considered to have incurred CHE if their annual OOP exceeded 40 percent of the per capita annual household non-food expenditure. We assessed impoverishment using the US$1.90 per person per-day international poverty line and the US$5.50 per person per-day upper-middle-income country poverty line. Logistic regression models were fitted to assess the correlates of CHE and impoverishment. We found that the incidence of CHE peaked in 2017 before declining in 2018. Impoverishment decreased until 2017 before rising in 2018. After adjusting for sociodemographic factors, households were more likely to incur CHE if the household head was older than 34 years, located in urban areas, had at least one disabled member, and had at least one member with hypertension. Households with at least one hypertensive member or who resided in urban areas were more likely to be impoverished due to OOP. Paid employment and high socioeconomic status were protective against both CHE and impoverishment from OOP. This detailed analysis offers a nuanced insight into the trends in Armenia’s financial risk protection against catastrophic and impoverishing health expenditures, and the groups predominantly affected. The incidence of CHE and impoverishment in Armenia remains high with a higher incidence among vulnerable groups, including those living with chronic disease, disability, and the unemployed. Armenia should consider different mechanisms such as subsidizing medication and hospitalization costs for the poorest to alleviate the burden of OOP.
Despite literature documenting limited and asymmetrical benefits along with ethical issues, short-term international volunteering is increasingly popular among North American university students as a perceived advantage when applying to professional healthcare schools or the job market. Academic institutions are also encouraging students to pursue international experiences in order to cultivate values as global citizens. These experiences are most typically limited to economically privileged students. Furthermore, international activities in developing countries often lack a pedagogy of social justice and may confirm a simplistic understanding of development. Brazilian educator Paulo Freire’s “liberation pedagogy” provides a framework for understanding the limitations of international volunteering, whereby the presence of privileged volunteers implementing Western models of development may hinder aspects of local movements. Regardless, university students face intense competition in accessing opportunities, such as medical school, and pay large sums to participate in volunteering to strengthen their academic credentials. We propose that these students form “the voluntariat.” They simultaneously play two roles by, first, contributing to the conditions that oppress the very communities in which they volunteer and, second, by playing a role as objects of oppression by the liberal institutions of learning and employment to which they are attempting to gain access.
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