Describing transition - chronic illness (ARC) synopsis
Project Team
Dr Debbie Kralik (Project Manager), Professor Tina Koch, Kay Price, Jim Warren, Gino Pignone, Peter Jenkin, Natalie Howard
Project Dates
February 2003 to February 2005
Project Summary
A three year research grant (2003-2005) from the Australian Research Council (ARC) incorporates a Post Doctoral Fellowship for Dr Kralik. This cutting edge research project will progress understandings about 'illness transitions'.
In the past few years we have consolidated our chronic illness research program, continually revising and validating the emerging constructs evolving from the stories of participants. The two major constructs that have emerged from peoples storied accounts of their experiences with chronic illness are:
Extraordinariness and Ordinariness
Extraordinariness is experienced when people are first confronted by the challenges imposed by a chronic condition. This turmoil is expressed as a difficulty in coming to terms with the intrusion of illness, as they draw comparisons with their life before illness. What is acknowledged, is the way in which they had taken for granted the 'Ordinariness' or sense of living well in their everyday lives. Consequently, in addition to dealing with the impact of the physical symptoms of illness, an overwhelming unpredictability challenges how these people maintain stability as they experience this unfamiliar or extraordinary state.
Over time people plan and learn strategies to incorporate the impact and consequences of living with a chronic condition into their lives revealing a sense of having made a transition to again reflect the construct of Ordinariness. When our research participants describe 'Ordinariness' they describe a sense of reclaiming control of their lives. This is not to say that they have accepted the illness, rather they manage their lives and develop a changed perception of self as a deeper understanding of 'self' develops through reflection. If we accept that participants' accounts mirror what makes sense to them, what we propose is that it is precisely the unpredictability or the Extraordinariness of the turmoil that people with chronic illness experience that makes them desire the transition to Ordinariness.
We have found that the experience of being in transition from Extraordinariness to Ordinariness (and sometimes back again) to be non-linear processes that are sometimes cyclical, often convoluted and potentially recurring throughout people's lives as changes both in life and illness create new challenges. But it is how Ordinariness is constructed and the way in which people incorporate the impact and consequences of living with a chronic condition into their lives, and how it is that these people make a transition towards Ordinariness, that is important to understand.
Understanding transition, places health care professionals in an excellent position to facilitate 'moving on'. Moving on in this sense meaning assisting the person living with chronic illness. We make the assertion that how a person makes sense of what may be for them, is linked to how they give meaning to 'their sense of self' and 'their sense of self-capacity'. In turn, these meanings influence how they come to make sense of becoming ordinary: Ordinariness. What we are proposing is that 'the sense of self' and 'the sense of self-capacity' are key concepts in understanding how the experience of living with a chronic illness can progress from Extraordinariness to Ordinariness: transition.
Aims of the project
Our primary aim is to explicate transition, that is, the way in which people are able to transform their chronic illness experiences.
Objectives
In collaboration with the participants, the objectives are to
- Identify shift and movement in the transition process (21 month longitudinal study)
- Identify how people learn and move on
- Build on our early understandings:
- Explore the impact of sharing of one's chronic illness story, being heard,
- Contribute to the concepts of body, self and identity
- Explore the impact of bodily contingencies
- Account for variations in transitional experiences
- In relation to the collaborative research methodology the objectives are to:
- Articulate and analyse group process dynamics
- Account for levels of learning/ interaction / change for individuals and groups.
To achieve the aim and objectives, we will embrace the principles of participatory action to facilitate email conversations (via list servs) with groups of men and women (n=200). In this process we will
- ask participants to share their biographies of illness,
- follow illness careers,
- observe critical events in their lives
- explore ways in which people learn and are able to move forward
Individual accounts are part of an open-ended process. The relation between self and identity in chronic illness is a social process that alters through time, as bodily contingency changes.
Ongoing e-mail correspondence for 21 months will produce evidence of continuous transformations. Correspondence is a collaborative experience and 'we' (participants and researchers) will be able to develop relationships that will last over a long period.
Our research plan is to understand what is involved in transition and this quest for knowledge underpins all our research endeavours with men and women living with chronic illness. The emerging understandings of the experience of transition in chronic illness are of paramount importance for community nursing because we contend that facilitation of transition is pivotal to the promotion of self-care management of chronic illness.
If you would like to participate in this project, please go to: http://www.unisa.edu.au/nur/arc_project/
for further information.
For information on other services visit our web site: www.rdns.org.au
