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Living with leukaemia: participatory documentation using video methodologies

Conference Paper


Abstract


  • This paper provides initial results of an exploratory study conducted in partnership with the Leukaemia

    Foundation of Australia into the daily activities and lives of Leukemia patients/survivors. These

    patients/survivors have volunteered to develop in conjunction with the researchers, video documentation that

    shows others the effect, impact and consequences of their various forms of the disease. The study draws on

    Scandinavian approaches to video methodology, typically employed in Services Marketing and Management

    areas for the detailed description of service encounters, service spaces and services systems, and broader

    traditions of participatory, community-based documentation and multi-modal digital story telling. The study

    enables Leukemia patients/survivors to speak about issues that are of concern to them, as well as co-creating

    personal and social narratives about their disease, for the purposes of communicating within their communities

    and also outside of them. The study also provides information on the kinds temporary and persistent coalitions

    entered into by patients/survivors with a large number of stakeholders, both direct and indirect, in order to meet

    a variety of needs. Relevant coalitions include but are not limited to health careers, complementary careers, and

    health and business professionals as well as direct support groups like careers, family and friends that can

    provide high levels of support. These stakeholders provide psychosocial care, spiritual care, socio-cultural care,

    stress, grief and bereavement care, as well as physical symptom management and in particular pain

    management. Emphasis will be placed on theoretical, methodological aspects of the study including the use of

    technology in media acquisition and qualitative analysis. The paper will also describe the ethics process in the

    design of the project. These methodologies have the potential to create a deeper understanding of the

    challenges facing those with these diseases.

Publication Date


  • 2009

Citation


  • Clarke, R. J., Noble, G. I. & Kyriazis, E. (2009). Living with leukaemia: participatory documentation using video methodologies. Proceedings of Social Innovation Network (SINet) Conference (p. 12). Wollongong, Australia: University of Wollongong.

Start Page


  • 12

Place Of Publication


  • Wollongong, Australia

Abstract


  • This paper provides initial results of an exploratory study conducted in partnership with the Leukaemia

    Foundation of Australia into the daily activities and lives of Leukemia patients/survivors. These

    patients/survivors have volunteered to develop in conjunction with the researchers, video documentation that

    shows others the effect, impact and consequences of their various forms of the disease. The study draws on

    Scandinavian approaches to video methodology, typically employed in Services Marketing and Management

    areas for the detailed description of service encounters, service spaces and services systems, and broader

    traditions of participatory, community-based documentation and multi-modal digital story telling. The study

    enables Leukemia patients/survivors to speak about issues that are of concern to them, as well as co-creating

    personal and social narratives about their disease, for the purposes of communicating within their communities

    and also outside of them. The study also provides information on the kinds temporary and persistent coalitions

    entered into by patients/survivors with a large number of stakeholders, both direct and indirect, in order to meet

    a variety of needs. Relevant coalitions include but are not limited to health careers, complementary careers, and

    health and business professionals as well as direct support groups like careers, family and friends that can

    provide high levels of support. These stakeholders provide psychosocial care, spiritual care, socio-cultural care,

    stress, grief and bereavement care, as well as physical symptom management and in particular pain

    management. Emphasis will be placed on theoretical, methodological aspects of the study including the use of

    technology in media acquisition and qualitative analysis. The paper will also describe the ethics process in the

    design of the project. These methodologies have the potential to create a deeper understanding of the

    challenges facing those with these diseases.

Publication Date


  • 2009

Citation


  • Clarke, R. J., Noble, G. I. & Kyriazis, E. (2009). Living with leukaemia: participatory documentation using video methodologies. Proceedings of Social Innovation Network (SINet) Conference (p. 12). Wollongong, Australia: University of Wollongong.

Start Page


  • 12

Place Of Publication


  • Wollongong, Australia