Understanding the Meaning of Living with Parkinson's Disease in an Australian Community Setting from the Perspectives of the Person Diagnosed and Their Partner/Carer

Parkinson’s disease (Pd) is classified as a neurodegenerative disorder characterized by non-motor and motor symptoms, which can include sleep disturbance, depression and cognitive impairment, as well as tremor, muscle rigidity and body slowness. Observable motor symptoms lead to a diagnosis; the majority of people diagnosed are over 65 years of age; and no two cases are considered to be the same. The cause and pathogenesis of Pd is unknown and current medical treatments can only provide the person with temporary symptomatic relief.

In 2011 it was estimated that over 64,000 Australians were living with Pd; this population is expected to grow at 4% p.a. over the next 20 years; and there is a lack of community awareness of Pd. A literature review to date has found there are no sociological and qualitative studies that report on the social dimension of people who are ageing and living with Pd in an Australian community setting.

Enmeshed with senescence, embodied Pd is made knowable in the context of a disease-specific health care framework. Within their life course the person diagnosed and their partner/carer embark on a quest to minimize suffering, know the future and maintain independence. Interviews and focus groups are used to gather empirical data on these perspectives. Grounded Theory is then used to examine how each person constructs meaning within interrelated elements of biology, mind, self, symbolic interaction, society and social change.

The purpose of this study is to construct an interpretive schema that describes Pd as a perspectival and social experience. A pilot study has been completed and informs a larger study, which is due to commence in October 2013 and will be reported on at the Congress. This research forms part of a doctoral thesis that aims to add to knowledge on living with this chronic illness.