Browsing by Author "Tong, Catherine"

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    "...but I know something's not right here": Exploring the diagnosis and disclosure experiences of persons living with ALS
    (Public Library of Science (PLOS), 2024) Foldvari, Kathleen M.; Stolee, Paul; Neiterman, Elena; Boscart, Veronique; Tong, Catherine
    Background Amyotrophic Laterla Sclerosis (ALS), an incurable motor neuron disease, primarily affects those between the ages of 60-79, and has an approximate post-diagnosis life-expectancy of only two to five years. The condition has an unpredictable but ultimately terminal trajectory that poses challenges for patients, caregivers and healthcare providers. While the diagnosis and disclosure are critical periods for intervention and support, knowledge regarding the relational, communicational and psychodynamic forces that occur within the process of diagnostic disclosure is relatively limited. Objectives The purpose of this study was to explore the experiences of persons living with ALS in the diagnosis and disclosure of that condition, with the support of their caregivers. Methods We conducted a focus group and in-depth individual interviews with people living with ALS (n=9), and caregivers (n=9). The interviews were transcribed, cleaned, and anonymized, and then entered into NVivo 11 for thematic analysis. Results Participants discussed the diagnostic process, including inklings and subtle changes prior to diagnosis, attempts at self-diagnosis, and the lengthy assessment process. Time was also a consideration in the diagnostic disclosure process, in which participants shared how the disclosure was the product of longstanding conversations with their care providers. It was described as rarely a shock to finally have confirmation. Participants shared their information seeking strategies and needs for a diagnosis that, for them, typically came with insufficient information on the disease, prognosis, and next steps. Significance This project serves as a step in bridging the relevant gaps in our knowledge and understanding towards improved person-centered care practices in the diagnosis and disclosure of ALS.
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    Healthcare Experiences of South Asian Older Adults in Canada: Aging well, Engagement, and Access
    (University of Waterloo, 2023-09-01) Chowdhury, Diya; Stolee, Paul; Tong, Catherine
    Background: Racial and ethnic disparities in healthcare have negative consequences for the health and quality of life of immigrants, while the lack of clarity in healthcare systems on how to best provide social and health services for these populations further exacerbates these disparities. With an increase in immigration and in the number of older adults in the Canadian demographic landscape, further research is necessary to understand the diverse ways through which racialized foreign-born older adults experience aging and how structural determinants impact their health and healthcare experience. Objectives: My research aims to (1) describe how foreign-born South Asian older adults define and conceptualize the notion of healthy aging, (2) examine South Asian-born older adults’ experiences and approaches to patient engagement and healthcare decision-making (3) identify and understand the structural determinants and systemic factors influencing the healthcare experiences and well-being of South Asian older adults in Canada. Methods: Employing a descriptive, multilingual, and cross-cultural qualitative approach, 47 South-Asian older adults (60+) were interviewed in a semi-structured format, in Hindi, Tamil, Punjabi, Urdu, Bangla, and English over Zoom. Interviews lasted an average of 84 minutes (min: 32, max: 120). I participated in 167 hours of online community events to support relationship building prior to the interviews. Results: This thesis demonstrates that South Asian older immigrants are a diverse and heterogeneous population and that their conception of healthy aging is strongly influenced by their country of origin. The findings show how racialized foreign-born older adults might provide distinctive perspectives on the aging process and on social theories of aging due to their simultaneous immersion in and belonging to global majority and global minority cultures. The findings also highlight the nuances of language and how miscommunication can arise even when patients and providers are conversing in the same language. Patient engagement and shared decision-making, including the desire for family involvement, are heavily influenced by both culture and gender. Additionally, perceptions of patients regarding the status of physicians can have a notable influence on patient engagement, leading to an increased tendency for patients to agree with healthcare providers’ approach to care. Lastly, this thesis demonstrates participants' perceptions of access to virtual and systemic factors, such as mandatory assimilation and whiteness as a taken-for-granted norm impacting the health and well-being of South Asian older adults.