Based on previous community research, we prioritise the need to understand better how experiences and feelings of invisibility could be shaped by relational dynamics, interfacing with service provision, and social forces, with the overarching view of understanding better the experiences of participants living with Parkinson's disease. A photovoice methodology was employed. A discussion of one case study of Bindy and Volta leads to a better understanding of how strong spousal support can significantly alter how one individual experiences and defines living with Parkinson's.
The purpose of this paper is to explore how relating to the ‘whole’ person – both the physical body and the invisible aspects of the ‘self’ – is essential in the establishment of a strong therapeutic alliance between patients and health care providers. Our work is based on interviews conducted with individuals affected by neurological illnesses (patients and family care providers). Hsieh and Shannon’s (2005) conventional content analysis was used to analyze the data. Under the broad theme of ‘maintaining a coherent sense of self’ we identified four distinct sub-themes related to interactions with health care providers. The results elucidate the more complex and deep needs of patients who must access care on an ongoing basis, and highlight the important role that care providers play in supporting individuals who are experiencing physical, spiritual and social losses. Care must attend to the deep needs of these individuals by communicating in a style that addresses both emotional and cognitive needs of patients, by thorough and holistic assessment and by appropriate referrals.
The authors explore the steps between conceptualizing a qualitative study based on Charmaz's definition of grounded theory and carrying it out in the field. We reflect on how the reality of the vulnerable population to be studied (individuals living with a condition that involves neurological decline) required us to shift our original conceptualization, not only of the research question but of the recruitment and interview process as well. Other factors such as organizational gatekeeping, clinical procedures, university regulations as well as recruitment strategies are discussed. The authors reflect on the study of persons who are living with chronic conditions and end-of-life realities for whom research is not considered a priority. We discuss the sequential steps that had been envisioned for the study and the real -world conditions that required revisions to conduct the study. Recommendations emerge that will assist students and researchers alike when studying a similar vulnerable population.
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