Tepora-Niemi, Suvi-Maaria
(2020)
Inequality in work and rehabilitation. Agency in the life course of a person with a chronic illness or disabilities
In this qualitative longitudinal study, I report on analyses of the agency of people diagnosed with a severe chronic illness when young and the change of agency in the course of their life in relation to the illness, rehabilitation and work. The research subjects had been treated as persons with a chronic illness or disabilities, and disability is understood broadly as limitations of functions and participation in society. The research material consists of deep narrative interviews conducted between 2012 and 2018 of the same people diagnosed with multiple sclerosis (MS) when young. In this study, MS is treated as an example of a disabling illness in illustrating the relationship between society, a chronic illness and disability, since the social experiences of chronic illness and disability are often similar regardless of the specific illness or disability. One goal of the study was to broaden the overall view of disability in Finland from the perspectives of work and rehabilitation. The results of the study are experience-based knowledge on the processes of falling ill, rehabilitation and changes of agency. It is possible to follow these processes in a qualitative longitudinal study.
The theoretical basis of the study are the ideas of Anthony Giddens on the relationship between an agent and a structure, the capability approach of Amartya Sen and Martha Nussbaum, the actantial model and types of pragmatic modality of Algirdas Julien Greimas, and the theoretical-methodological framework of the modalities of agency, developed further from the types of pragmatic modality by Jyrki Jyrkämä. The concept of modality makes it possible to analyse the nature of a chronic illness and disability in relation to society and to understand health, chronic illness and disability in the course of life as a continuum, in which different phases of chronic illness and comprehensive well-being alternate.
The objective of the study was to investigate the kind of agency that is developed in a person diagnosed with a severe chronic illness when young, along with the life course in work and in rehabilitation supporting daily life. The research questions are: 1. What kind of agency is developed in such a person with relation to the illness and rehabilitation, and how does the agency change as the illness progresses and as time passes from the diagnosis? 2. What are the options for such a person to self-determination in planning their rehabilitation and how do these options change as the process of accepting the illness progresses? 3. How does the agency of such a person in relation to work change as the illness and the process of accepting it progress? 4. How is the course of life related to the development of the agency of such a person? The study is based on three sub-studies, from which empirical articles have been written. The research method of the first and third sub-studies was theory-driven content analysis, and that of the second sub-study is narrative actantial analysis.
Accepting the diagnosis of a chronic illness is a sensitive process, which requires time. The process comprises the person’s desire, knowledge, abilities and opportunity to process their falling ill and to promote their own cause in social and healthcare services. Significant factors for the acceptance process are the time elapsed since the diagnosis and being admitted to rehabilitation or being left out of it. A recurring experience in the study has been the experience of the interviewees as being left alone without the long-term support of social and healthcare professionals immediately after the diagnosis. The lack of long-term early psychological rehabilitation is related to the difficulty of developing a rational agency to promote one’s own cause in social and healthcare services. Instead, strong emotions dominate the agency of the interviewees in relation to their own illness and rehabilitation soon after the diagnosis.
Changing doctors made it more difficult for the interviewees to be admitted to rehabilitation and to initiate it. The difficulty participating in rehabilitation and the rehabilitees’ inadequate understanding of the content, objective and purpose of rehabilitation are related to the paucity of interaction between professionals and the rehabilitees, to missing rehabilitation plans, to beginning rehabilitation too late and to the prejudices associated with rehabilitation and the fears of its stigmatising effect. These are problems of the multi-sectoral rehabilitation service system that are difficult to discern. They also reduce the opportunities of persons with chronic illness or disabilities to self-determination in planning their own rehabilitation.
The agency of the interviewees in relation to work changes as the symptoms of chronic illness and the process of accepting it progress individually. The change can be explained by the ability of the interviewees to accept the decline of their abilities and the options to adjust their existing work to it, part-time work or the opportunity to change their job description or line of work. Confidence in staying in work is provided by the support of the employer and work community, whereas distrust in the employer experienced by the interviewees reduces most their desire to negotiate on reconciling their chronic illness and work. Occupational and medical rehabilitation maintain the person’s capacity to function and work, even when the illness progresses or when changes take place at work. In contrast, staying outside rehabilitation creates uncertainty to the chronically ill or disabled person on the sufficiency of their own abilities and reduces their opportunities to negotiate in the workplace.
Due to their education and social background, persons with a chronic illness or disabilities are in unequal positions with each other both in work and in social and healthcare services. A severe chronic illness or disability cannot be separated from other parts of life. Instead, agency in work and rehabilitation are built on the basis of their agency in relation to the surrounding community that these persons had before suffering from the illness or disability. People with a strong foundation for life are best able to process their own illness, being disabled or being a rehabilitee. Similarly, they have an opportunity to realise their self-determination in planning their rehabilitation and they are in an easier position to negotiate at work. The situation is weakest for persons with multiple chronic illnesses, depression and economic or emotional needs, and no support from their employer. These factors hinder implementing self-determination in planning rehabilitation and the negotiation of options at work.
Keywords: agency, chronic illness, disability, life in the workforce, rehabilitation, course of life, longitudinal study