My dissertation examines why different immigrant groups, particularly those that do not currently face much economic discrimination, on average, choose different strategies of political assimilation by the third generation. The answers to this question are important to understanding the political integration of immigrant groups of all income levels. The primary argument I make is that racial or ethnic identifications that result from experiencing discrimination often explain political behaviors and attitudes among immigrant groups. First, I argue that membership in a relatively exclusive ethnic group experiencing discrimination is associated with ethnic voting. Second, consistent with and extending Mary Waters' (1996) argument, I argue that non-white immigrant groups are more inclined to support race-based government measures, such as racial quotas for university admissions and government jobs that benefit other non-white groups because of personal experiences and awareness of racial discrimination in society. Furthermore, I argue that the agricultural cooperatives on which the first Japanese and Jewish immigrants worked provided them the social capital to form other ethnic community-based organizations, which facilitated their political incorporation in Brazil. This is an advantage not shared by current economic immigrants, and Catholic NGOs step in to help these current immigrants overcome this disadvantage.
BACKGROUND AND OBJECTIVES: Presymptomatic testing is available for early diagnosis of hereditary autosomal dominant polycystic kidney disease (ADPKD). However, the complex ethical and psychosocial implications can make decision-making challenging and require an understanding of patients' values, goals and priorities. This study aims to describe patient and caregiver beliefs and expectations regarding presymptomatic testing for ADPKD. DESIGN, SETTING AND PARTICIPANTS: 154 participants (120 patients and 34 caregivers) aged 18 years and over from eight centres in Australia, France and Korea participated in 17 focus groups. Transcripts were analysed thematically. RESULTS: We identified five themes: avoiding financial disadvantage (insecurity in the inability to obtain life insurance, limited work opportunities, financial burden); futility in uncertainty (erratic and diverse manifestations of disease limiting utility, taking preventive actions in vain, daunted by perplexity of results, unaware of risk of inheriting ADPKD); lacking autonomy and support in decisions (overwhelmed by ambiguous information, medicalising family planning, family pressures); seizing control of well-being (gaining confidence in early detection, allowing preparation for the future, reassurance in family resilience); and anticipating impact on quality of life (reassured by lack of symptoms, judging value of life with ADPKD). CONCLUSIONS: For patients with ADPKD, presymptomatic testing provides an opportunity to take ownership of their health through family planning and preventive measures. However, these decisions can be wrought with tensions and uncertainty about prognostic implications, and the psychosocial and financial burden of testing. Healthcare professionals should focus on genetic counselling, mental health and providing education to patients' families to support informed decision-making. Policymakers should consider the cost burden and risk of discrimination when informing government policies. Finally, patients are recommended to ...
In: Logeman , C , Cho , Y , Sautenet , B , Rangan , G K , Gutman , T , Craig , J , Ong , A , Chapman , A , Ahn , C , Coolican , H , Tze-Wah Kao , J , Gansevoort , R T , Perrone , R , Harris , T , Torres , V , Fowler , K , Pei , Y , Kerr , P , Ryan , J , Johnson , D , Viecelli , A , Geneste , C , Kim , H , Kim , Y , Howell , M , Ju , A , Manera , K E , Teixeira-Pinto , A , Parasivam , G & Tong , A 2020 , ' 'A sword of Damocles' : patient and caregiver beliefs, attitudes and perspectives on presymptomatic testing for autosomal dominant polycystic kidney disease: a focus group study ' , BMJ Open , vol. 10 , no. 10 , e038005 . https://doi.org/10.1136/bmjopen-2020-038005 ; ISSN:2044-6055
BACKGROUND AND OBJECTIVES: Presymptomatic testing is available for early diagnosis of hereditary autosomal dominant polycystic kidney disease (ADPKD). However, the complex ethical and psychosocial implications can make decision-making challenging and require an understanding of patients' values, goals and priorities. This study aims to describe patient and caregiver beliefs and expectations regarding presymptomatic testing for ADPKD. DESIGN, SETTING AND PARTICIPANTS: 154 participants (120 patients and 34 caregivers) aged 18 years and over from eight centres in Australia, France and Korea participated in 17 focus groups. Transcripts were analysed thematically. RESULTS: We identified five themes: avoiding financial disadvantage (insecurity in the inability to obtain life insurance, limited work opportunities, financial burden); futility in uncertainty (erratic and diverse manifestations of disease limiting utility, taking preventive actions in vain, daunted by perplexity of results, unaware of risk of inheriting ADPKD); lacking autonomy and support in decisions (overwhelmed by ambiguous information, medicalising family planning, family pressures); seizing control of well-being (gaining confidence in early detection, allowing preparation for the future, reassurance in family resilience); and anticipating impact on quality of life (reassured by lack of symptoms, judging value of life with ADPKD). CONCLUSIONS: For patients with ADPKD, presymptomatic testing provides an opportunity to take ownership of their health through family planning and preventive measures. However, these decisions can be wrought with tensions and uncertainty about prognostic implications, and the psychosocial and financial burden of testing. Healthcare professionals should focus on genetic counselling, mental health and providing education to patients' families to support informed decision-making. Policymakers should consider the cost burden and risk of discrimination when informing government policies. Finally, patients are recommended to ...