The development and preliminary testing of an instrument to measure the perceived economic burden of a subtype of arrhythmogenic right ventricular cardiomyopathy (ARVC) on patients and families in Newfoundland

The goal of this thesis was to develop, construct, and validate the Perceived Economic Burden scale to quantitatively measure the burden associated with a subtype Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) in families from the island of Newfoundland. An original 76 item self-administered survey was designed using content from existing literature as well as themes from qualitative research conducted by our team and distributed to individuals of families known to be at risk for the disease. A response rate of 37.2% (n = 64) was achieved between December 2013 and May 2014. Tests for data quality, Likert scale assumptions and scale reliability were conducted and provided preliminary evidence of the psychometric properties of the final constructed perceived economic burden of ARVC scale comprising 62 items in five sections. Findings indicated that being an affected male was a significant predictor of increased perceived economic burden in the majority of economic burden measures. Affected males also reported an increased likelihood of going on disability and difficulty obtaining insurance. Affected females also had an increased perceived financial burden. Preliminary results suggest that a perceived economic burden exists within the ARVC population in Newfoundland.

Vernacular perceptions of masculinity and fatherhood among Newfoundland offshore workers and their families

My thesis is an ethnographic study of how offshore workers of Newfoundland and Labrador, as well as their families, express and reflect upon traditional Newfoundland constructs of fatherhood and masculinity through narrative and ritual. With a schedule that often involves a constant shift between home and away, offshore workers in the province take part in high-risk professions in order to provide for their families back home. These professions, and their associated lifestyles, involve the incorporation of routine strategies that allows family culture to maintain itself. At the same time, these professions largely carry on a tradition of hegemonically masculine practices, albeit in a newer context. Drawing on a blend of literary and ethnographic research based on the Avalon Peninsula, I utilize examples of current Newfoundland culture to describe how nostalgic memoirs of outport Newfoundland create models of hegemonically masculine fatherhood in the province. I go on to explain how those models manifest themselves in the experiences of current offshore workers, and how they affect their spouses and children. Furthermore, through examining how young adults with offshore-working parents describe their experiences of their fathers, it is possible to see how the effects of local hegemonic masculinities are manifested through narratives about fathers who worked away from home.