Un modèle du processus de préparation à la perte d’un conjoint : une théorisation ancrée constructiviste auprès de conjointes de personnes vivant avec un cancer

Over the course of a disease, many changes are experienced by an ill person and their family. More specifically, between the end of curative treatments and the eventual death of a patient, relatives are confronted with the inevitable reality of the loss of their loved one. This experience prior to death consists of individual and social dimensions, such as gender and the relationship to the ill person. This study was interested in the preparation process of women whose spouses live with cancer. The purpose of this study was to propose a model of the process of preparation for the loss of a spouse living with cancer, focusing on the period between the diagnosis and death. A radical constructivism epistemology and a constructivist approach to grounded theory guided this study. In addition, a modelization process was added to the analysis steps to meet the purpose of the research. In total, 11 in-depth interviews were conducted with women who self-identified as the spouse of a patient living with cancer. These spouses were approached by the healthcare professionals from ten (10) organizations in the Montréal metropolitan area and then invited to participate in the research by the student-researcher. Intentional and theoretical sampling strategies were used to construct the research sample and to refine the student-researcher’s interpretation. In addition to the interview, a sociodemographic questionnaire and a logbook were used to collect relevant data for the creation of a detailed description of the participants, as well as of the research process. The present study was both developed and carried out taking into account several ethical considerations in order to ensure the respect of traditional ethical principles (consent and confidentiality), but also to ensure the well-being of the participants during the interview and in the next days. The proposed model represents the preparation for the loss of a spouse as a dynamic process of redefinition of the individual identity of the women in the interval between the diagnosis and the death of the partner. More specifically, the process of preparation for the loss is directed by the changes experienced and observed in the partner’s illness and end-of-life trajectory. Every change, such as increased pain or changes to the relationship with the partner, is meaningful to the spouse. Indeed, these changes represent the deterioration of the partner’s health as well as the imminence of his death, which call into question the individual identity of the spouse. This questioning engages the spouses in a process of identity redefinition including social role negotiation processes and processes of redefinition of the meaning of their identity. Social role negotiation processes led spouses to develop strategies, such as lifestyle changes, to account for changes in their caregiving and conjugal roles in the context of the deterioration of their partner’s health. The processes of redefining the meaning of their identity include the creation of mental scenarios, axiological questions, and identity reflections that together enable the spouse to make a judgment about the meaning of life, death and their own identity. The model of the process of preparation for the loss of a spouse therefore represents how, with each change in the illness and end-of-life trajectory, the spouses engage, recursively, in processes leading them to redefine their individual identity.  The model proposed as part of this doctoral research project provides a better understanding of the complex, dynamic, and situated process of preparation for the loss of a spouse that could be lived by a spouse during the period leading up to the death of a partner, by highlighting the relational and identity dimensions of this preparation. Further research will be required in order to ensure the model’s viability in other contexts as well as with different populations which were not included in this study. For example, it would be interesting to see whether the model is viable with women who care for their spouse at the same time as for their children. Nonetheless, the thesis concludes with a set of recommendations in the areas of policy, organization and management of health care and social services, clinical practice, professional training, and research, based on the results of the study as well as the recognition of the spouses’ experience.

Keyphrases: Cancer, Recherche qualitative, Modelization, Cancer, Caregiver, Caregiving, Qualitative research, Grounded theory, Radical constructivism, End of life, Palliative care