A Grounded Theory of Empowerment in Cancer Survivorship and Rehabilitation

Abstract

Purpose: A diagnosis of cancer can be disabling in many ways. Most notably, cancer treatments are toxic and harmful to the body and threaten a person’s ability to care for themselves. In addition, cancer and its treatments can affect many dimensions of quality of life, including peoples’ abilities to engage in meaningful occupations. However, there are many gaps in the literature surrounding rehabilitation and the ways in which the psychosocial effects of cancer may be addressed by individuals. Empowerment is a concept used to articulate processes of rehabilitation that involves addressing both functional concerns as well as quality of life issues. Yet, empowerment remains a phenomenon not well understood. It is most often defined as a process and outcome of regaining a sense of control and autonomy that is lost due to an illness, but much of the empowerment literature in the context of cancer is written from the perspective of the health care provider. This perspective fails to recognize the processes through which survivors address functional and quality of life concerns leaving a gap in theory and evidence based practice in cancer rehabilitation. The purpose of this dissertation was to develop a grounded theory of empowerment to illuminate its associated processes from the perspective of cancer survivors to answer the following questions: 1) In what ways do cancer survivors define, describe and/or experience the processes of empowerment?; 2) How do cancer survivors describe the emergence of empowerment within various contexts and relationships related to their illness; 3) What are the connections and relationships between processes of empowerment and the commonly held assumptions about this phenomenon? Methods: Data collection consisted of 22 semi-structured interviews with cancer survivors (cancer of the head or neck and/or breast). Interviews explored participants’ illness experiences and views of empowerment. I used the social constructivist grounded theory method to analyze and map the processes of empowerment. Summary of Results: Empowerment reflects multiple complex processes. Broadly, empowerment occurred in two dynamic and paradoxical ways. First, empowerment was associated with establishing control over the treatment, management and impact of the illness on participants’ daily lives as a means to circumvent a sense of self that was eroding and changing. Secondly, empowerment was described as processes associated with relinquishing control over aspects of the illness deemed irrepressible and incorporating those aspects into a new identity. Conclusion: These two processes illustrate the paradox embedded within experiences of empowerment. The first process is comparable to current evidence-based practice in cancer rehabilitation that has a dominant focus on symptom control to reduce the impact of the illness on daily life. Gaps are more significant in relation to the empowerment processes associated with relinquishing control. These processes enabled survivors to acknowledge and accept the impact of illness as another way to address functional and quality of life concerns. Thus, my findings suggest that there is a need to design a variety of interventions that help cancer survivors live with and adapt to the effects of illness into daily living.