Meanings of Parkinson's Disease from the Perspectives of People Diagnosed and their Partner-carers Living in an Australian Community Setting

Abstract

In Australia the medical model dominates how Parkinson’s disease is described and understood. Little is known about how older Australians age and live with this chronic illness in social terms. More specifically, there is a paucity of empirical research on personal descriptions of the illness experience in social contexts; how the person diagnosed and partner-carer define their own care needs in everyday life, and how they are supported by health and aged care services. As Parkinson’s disease is associated with the ageing process, it is projected that within the context of population ageing the prevalence will increase and, generally, the demand for health care services will also increase in the coming decades. This demographic change has generated reform of aged care services in Australia to be more person-centred and consumer directed. This model of ageing aims to enable older people to maximize their independence and avoid premature entry into residential aged care. The purpose and aim of this thesis is to construct a framework for developing a more holistic understanding of how older Australians live with Parkinson’s disease, to add knowledge to the existing literature on this topic, and to inform relevant health and aged care services. The premise is that a person’s experience of Parkinson’s disease cannot be fully or effectively understood by focusing solely on the disease, symptoms, treatments, life stage, age and current social role. Therefore, this study takes life histories and a long-term marital relationship as the social context in which the participants are ageing and, for some, with bodies manifesting Parkinson’s disease. The broad research questions underpinning this study are: Given the medical model addresses only the symptomatic presentation of, and available treatments for Parkinson’s disease, what approach is needed to provide a fuller and more effective understanding of the experience of living with Parkinson’s disease? When asked, how do older Australians socially construct meanings of Parkinson’s disease? How might the findings in this study be informative for health and aged care services? A theoretical framework has been developed through a critical review of social theories on the self, body and chronic illness. Concepts that were compatible with the aims of this study included; performing the body and self; seeing the self and body as both integrated and disintegrated; applying the biopsychosocial model which takes the self, body, other and social environment as relational factors in people’s lived experiences and how they make sense of them; and ensuring the body is factored into people’s interpretations of living with Parkinson’s disease. The focus is on the context of the person’s life course and relationship dyad with a partner-carer as a way to examine meanings of Parkinson’s disease according to their corporeal, temporal and ontological dimensions. The main research question for the literature review asked: How have older people’s lived experiences of ageing and Parkinson’s disease been described by qualitative researchers? The review found that qualitative studies on ageing in Australia explain the main social issues for older Australians as ageism, social isolation and loneliness, which can negatively affect their health and wellbeing. International qualitative studies on lived experiences of Parkinson’s disease concentrate on how the person diagnosed has been negatively impacted by the symptoms which cause physical and emotional suffering and loss of independence; and Australian studies identify the knowledge gaps in local aged care services which do not adequately support people’s needs in living with Parkinson’s disease. The literature tends to concentrate on the issue of older people being unsupported as they become increasingly dependent, and partitions off how they actively continue to self-manage their identities, health and wellbeing: Few studies have examined, evidenced and explained the diversity of people’s experiences of ageing and living with Parkinson’s disease. Therefore a comprehensive resource is needed to show the diversity of older Australians’ experiences of Parkinson’s disease, and to provide an in-depth account from the perspective of the person diagnosed and their partner-carer. This research applied an interpretive and constructivist approach using qualitative methods in examining the lives and social experiences of people living in the Sydney metropolitan area. All of the study participants (n=50) who participated in focus groups and/or interviews were recruited through Parkinson’s support groups in three geographical locations of Sydney with differing socio-economic levels and access to health care services. The selection criteria included people over 55 years old who were working or retired; diagnosed with idiopathic Parkinson’s disease and have a partner-carer who was willing to participate in the study. Focus groups (n=6) were used to collect data on what people diagnosed and partner-carers discuss within each group; and individual semi-structured interviews (n=18) were used to collect narrative data on living with Parkinson’s disease in the context of the person’s life history and marital relationship. The analysis examined people’s ageing in relation to their unfolding life course, and linked their experiences and meanings of Parkinson’s disease to symptomatic bodies, individual perspectives, personal relationships, and social structures in the context of an Australian community setting. Differing perspectives were evident. In the focus groups, partner-carers felt they were very much depended on, while people diagnosed felt partner-carers intervened too much. All participants were actively seeking information to improve their own understanding and ways of self-managing the illness experience. Individual interview narratives evidenced how people’s lived experiences are emergent internal and external realities, which belong to Self and Other; each holding a perspective that is both separate and shared. People diagnosed and partner-carers related their earlier experiences to later experiences in life and described ways in which they wanted to protect the Self as the locus of control and prevent being overpowered by the biological effects of ageing and disease on their bodies. Each person’s perception of the self is transformed by biological, social and historical factors over time; and through each relationship dyad a couple aligns their actions, interactions and emotional responses within the social context of their marriage and life stage. People diagnosed wove into their narratives coping with fears about the future; these were generated from understanding how past lived experiences contrasted with present realities. They presented the Self as coping with Parkinson’s disease in everyday life in ways that were contextually specific to their social relationships. Partner-carers constructed coping strategies in the context of a caring relationship with their life partner having Parkinson’s disease, and they were more reactive to their situations. Like people diagnosed, partner-carers also interpreted being vulnerable to physical and emotional risks in the future although they did not focus as closely on the body and directed their strategies towards coping with personal goals, relationships, and lifestyle. This study evidences the productive action people diagnosed and partner-carers take towards self-managing their illness. Meanings of Parkinson’s disease were constructed out of people’s lifelong processes, developmental trajectories and current circumstances, and reflect their own needs. People diagnosed and partner-carers described Parkinson’s disease as a manageable illness, but people needed additional social support in how they perceive, interpret and give meaning to the illness experience in a non-clinical sense; and how they can manage the frequent and intermittent biographical disruption in everyday life. Participants’ narratives evidenced how for them Parkinson’s disease is equally a medical and social issue and, coupled with ageing, they need additional specialized support to help them emotionally understand the changes they are experiencing as either the person diagnosed or partner-carer in the context of their marital relationship and life history. The social context of people’s perspectives needs to be factored into the person-centred and consumer-directed model now in place to assist older Australians design their care plan.