Negotiating serious illness : understanding young women's experiences through Photovoice

Abstract

Although serious illness is often associated with aging in contemporary society, increasing numbers of young adults are being diagnosed with a variety of serious illnesses. In order to learn more about what it is like to be seriously ill during young adulthood, I completed a qualitative study with ten young women who had recently been affected by a life-threatening or chronic illness. The research was informed by a theoretical approach based on social constructionist and phenomenological principles that recognize that physiological processes such as illness are socially mediated and given meaning within a certain socio-cultural context. Thus,the life course and its corresponding stages are not universal or biologically determined, but rather are social constructions based on socio-cultural factors and the meanings given to certain biological events. This research involved participants between the ages of 20 and 37 from around Saskatchewan who had been affected by a serious illness within the previous three years. The methodological approach that I utilized was interpretive and drew upon phenomenological, feminist, and participatory visual approaches to qualitative research. The young women participated in phenomenological interviews and a photovoice project that explored their ‘lived experiences’ of serious illness and the specific issues that they faced because of illness. I analyzed the data thematically, incorporating phenomenological concepts of embodiment, temporality, and relationality. Although the interview and photographic data highlighted a range of experiences, the data highlighted several similarities among participants. Foremost, the data revealed that serious illness was highly disruptive for the young women; specifically, participants were required to negotiate disruptions to their sense of embodiment, everyday lives, expectations for the future, and social relationships. Ultimately, serious illness brought about embodied and social experiences that conflicted with how participants had previously envisioned young adulthood and their life course. As such, their experiences of illness had profound implications for their self identity and brought about a complex process of trying to make sense of illness. Based on these findings, I conclude that the young women experienced and made sense of illness within the context of socio-cultural expectations related to age and the life course, as well as gender. I also identify the implications of this research for health care and support services aimed at this population.