Reconsidering patient empowerment in chronic illness: A critique of models of self-efficacy and bodily control
Introduction
In the field of health-care, empowerment has been acknowledged as an alternative to compliance in order to guide the provider-patient relationship. Whereas in the compliance-oriented approach to health-care patients are seen as the recipients of medical decisions and prescriptions, the empowerment-oriented approach views patients as being responsible for their choices and the consequences of their choices.
As a recent literature review has shown (Aujoulat, D'Hoore, & Deccache, 2007), studies that focus on patient empowerment tend to address more specifically two issues of patients' experience of illness: managing regimens and relating to health-care providers. Other aspects of the illness experience, such as coming to terms with disrupted identities, which are central in the sociological approach to chronic illness (for a review, see Bury, 1991, Conrad, 1990) tend to be overlooked, in as far as their implications to the process of patient empowerment is concerned. Indeed, the outcomes most frequently associated with the process of empowerment in the literature are self-efficacy regarding disease and treatment-related behaviours, and effective self-management of disease and treatment (e.g. Anderson et al., 2000, Keers et al., 2006, Lorig et al., 1996).
Patient empowerment is therefore most often defined as a process of behaviour change, with a focus on how to help patients become more knowledgeable and take control over their bodies, disease and treatment. In this definition, empowerment is viewed as a process of “activating” patients, who as a result of “rejecting the passivity of sick role behaviour and assuming responsibility for their care (…) are more knowledgeable about, satisfied with, and committed to their treatment regimens” (Steele, Blackwell, Gutman, & Jackson, 1987).
In accordance with Salmon and Hall, 2003, Salmon and Hall, 2004, we believe that such a definition of empowerment is a professional construction, which may not be relevant to all chronically ill people. As it is built on the assumption that patients most value being in control of medical decisions and management of treatment, it ignores some underlying factors of the decision-making capacity, which are linked to important dimensions of the patients' illness experience, such as their need for security, self-determination, and a continuous sense of self. Such a model of empowerment implicitly acknowledges the loss of bodily control and the lack of medical knowledge and skill to deal with it, as the main factor of powerlessness in patients with chronic conditions. However, in our previous work we have shown that the situations and feelings of powerlessness, from which a process of empowerment may evolve, extend well beyond strictly medical and treatment-related issues, as the participants in our study (n = 40) all expressed or demonstrated to have at some point or another experienced a distressing feeling of insecurity and a threat to their social and personal identities (Aujoulat, Luminet, & Deccache, 2007). Building on our findings regarding situations and feelings of powerlessness experienced by chronically ill patients, we argue that a “successful” process of empowerment occurs when patients come to terms with their threatened security and identity, not only with their treatment.
Only a few authors (e.g. Paterson, Thorne, Crawford, & Tarko, 1999) suggest that empowerment may be related to a process of personal transformation, thus pointing to identity issues which are currently insufficiently addressed in theories of empowerment. Yet, there is some evidence that identity issues have an impact on patients' self-care behaviours and self-management capacity. A case study by Tilden, Charman, Sharples, and Fosbury (2005) showed how a young woman with diabetes became motivated to manage her diabetes once her identity was confirmed as being separate from her diabetes. Moreover, in a study with 30 adult asthma sufferers, Adams, Pill, and Jones (1997), found that those people who had accepted asthma as part of their identity, and therefore viewed their illness as being an integral part of themselves, demonstrated a better self-management capacity.
How one's sense of self and identity may be affected by the experience of illness has been well documented, in particular from the symbolic interactionist perspective (Bury, 1982, Charmaz, 1983, Corbin and Strauss, 1987). Following the pioneering work of these authors, the need for reconstructing one's identity or redefining one's self in the process of adjusting to chronic illness has been acknowledged in relation with various chronic conditions, such as asthma (e.g. Adams et al., 1997), cancer (e.g. Heidrich and Ward, 1992, Mathieson and Stam, 1995, Shapiro et al., 1997), chronic fatigue syndrome (e.g. Clarke & James, 2003), diabetes (e.g. Paterson et al., 1999, Tilden et al., 2005), physical disability (e.g. Galvin, 2005, Morse and O'Brien, 1995, Yoshida, 1993), traumatic brain injury (e.g. Nochi, 2000), etc. In other words, it has been well acknowledged that the experience of chronic illness, by disrupting a person's life in many ways, has a general and profound impact on a person's identity, i.e. a person's sense of self-worth and continuity, in relation with previous representations of self and social roles (personal and social identities).
However, there is no clear evidence from this body of literature of how the very process of restructuring oneself in response to chronic illness occurs. This process is described in different ways, as for instance a process of differentiating self from illness (Tilden et al., 2005), a process of reintegrating the social identity of ill person with other social identities (Adams et al., 1997), a process of adjusting through the lowering of self-expectations (Heidrich & Ward, 1992), or a process of meaning-making mediated by the revision of one's self-narrative (Mathieson and Stam, 1995, Nochi, 2000, Shapiro et al., 1997). As pointed out by Paterson et al. (1999), the transformative process inherent to having to live with a chronic illness is usually described with a focus on restructuring either one's self or the illness experience.
In this paper, which seeks to clarify the meaning of empowerment in relation to the process of reconciling one's identity as an ill person with other personal and social identities, we will describe how the processes of restructuring the illness experience and restructuring the self are two inter-related processes, which can be best described as a double process of “Holding on” and “Letting go”, occurring through strategies of taking control and attitudes of relinquishing control.
Section snippets
Methods
Our intention was to allow for the emergence of the meaning of empowerment, as it may be experienced by participants with various chronic conditions. We therefore opted for an inductive qualitative approach, and conducted an exploratory study based on individual in-depth interviews. We referred to phenomenology for methods of data collection and descriptive analysis, and to Grounded Theory for methods of interpretation and theorisation, as these methods offer a flexible set of inductive
Findings
Five participants in our sample explicitly conveyed that they enjoyed a sense of a reconciled identity, which they expressed in terms of being aware that the disease was part of them, and yet distinct from their selves:
“I am not a diseased person… I am a person with a disease, and I feel that this is very different. I have my heart and I have my mind, and it does mean a lot, doesn't it?” (Marie-Catherine, 62, diagnosed with multiple sclerosis at the age of 32).
“My illness is part of our life
Discussion
In conceptualising patient empowerment as evolving from a threat to one's senses of security and identity, we found that empowerment was about integrating different and sometimes conflicting aspects of one's self in order to develop a renewed and valuable sense of self, by differentiating one's self from illness on the one hand, and by integrating illness and illness-driven boundaries as being part of a reconciled self on the other hand. Bensaïd (1978) called this a process of “Becoming a same,
Conclusion
Building on our findings, we argue that empowerment and control are not the same things. Indeed, the expression of a strong sense of mastery or feeling of control should not be mistaken with the experience of being empowered as, in some cases, it may be an indicator that the patient is avoiding awareness of the impact of illness on his/her life. An individual's expressed sense of mastery or control may therefore be considered as a valid indicator of empowerment, only if at the same time the
Limits and perspectives
Although our aim was to understand better what the process of empowerment may mean and how it evolves in the context of chronic illness, our study design did not allow us for a “follow up” of the participants over time. Therefore, we could not witness the process of empowerment (or disempowerment) as such. Our representation of the process is therefore a theoretical reconstruction, based on the articulation of different pieces of information regarding different moments of living with a chronic
Acknowledgments
We are very grateful to all the people who accepted to share their illness experience with us. Our thanks extend to all the patients and health-care professionals who have discussed with us our emerging categories while we were still in the process of analysing our material. We would more specifically like to acknowledge Julie Pélicand's, Rémi Gagnayre's and Jean-Pierre Hiernaux's involvement at different stages of our research project.
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