Aspects méthodologiques, mesure et facteurs associés à l’autonomie des patients utilisant les technologies de dialyse péritonéale à domicile

Peritoneal dialysis (PD) is a home-based therapy that purifies blood via a peritoneal membrane to treat patients with end-stage renal disease. It requires from the patient some aptitudes (competence and motivation) and from the caregivers a particular organization to foster patient autonomy. However, in the context of a home-based therapy, such as in peritoneal dialysis, autonomy is a poorly conceptualized entity and has not been specifically measured. The objective of this thesis was to identify the dimensions and the levels of the patient’s autonomy and the factors associated in the context of using peritoneal dialysis. On the basis of the Self-determination theory and a literature review, a conceptual framework was developed which assumed that three main factors could influence the autonomy: individual (motivation, competence), technological (user-friendliness), and organizational factors (different types of support). To test the assumptions supported by our framework, a mixed method design composed of two sequential phases was developed. A first qualitative phase - conducted through open-ended interviews with 12 patients and 11 nurses - was performed to explore and better define the dimensions of autonomy of the patients treated by peritoneal dialysis. The data obtained was used to enhance the development of a questionnaire, which was mailed during the second quantitative phase to a random sample of patients. This questionnaire was completed and returned by 98 patients from the population of Québec peritoneal dialysis users (N=700). The objective of this second phase was to assess the patients’ autonomy levels and to examine the relationship between the three factors (individual, technological and organizational) and the four dimensions of autonomy. Data were analysed using univariate statistics and multiple linear regression model. Our results show that four dimensions of autonomy are essential to achieve peritoneal dialysis at home : clinical autonomy (performing basic clinical tasks), technical (technical tasks), functional (daily freedom) and organizational autonomy (independence from the care centre). The patients gave higher rating for organizational autonomy (4,5 mean score on five-point Likert scale); 4,1 for clinical autonomy; 4,1 score for functional autonomy and 4,8 for technical autonomy. Each of these dimensions of autonomy was associated with one or more of three factors from the conceptual model : individual, technology and organizational factors. In some cases, the type of the peritoneal dialysis technology (manual or automated) contributed to some dimension of autonomy. More specifically, the motivation could facilitate functional autonomy. The technology user-friendliness might allow greater clinical autonomy, but a muscular disease could compromise it. The patient competence and the user-friendliness might contribute to the organizational autonomy. Finally, all the patients reported being highly autonomous on manipulating the technology. This result could be explained by adequate training during the predialysis period, continuous support and daily manipulation of the technology. Even though our results were obtained for the peritoneal dialysis application, we retain that when transferring the handling of a home therapy technology to treat a chronic disease, it is essential to coordinate the transfer so that the three factors, the user-friendliness, individual factors such as motivation and competence, and organizational factors (different types of support) are in place to ensure autonomy at the four levels, technical, clinical, functional and organizational.

Keyphrases: Public health, health care organization, Home health care, homecare technology, Autonomy, Patient autonomy, Peritoneal dialysis, User-friendliness, Technology, Mixed methods