Patients’ and caregivers’ conceptualisations of pressure ulcers and the process of decision-making in the context of home care

Abstract

Background: Although the addition of patients in the process of shared decision-making can improve their recovery, there is a lack of knowledge about patients’ and caregivers’ perceptions on the management of pressure ulcers at home. Objectives: To explore the conceptualisations of patients with pressure ulcers and their caregivers on the barriers and facilitators for their involvement in home care and in the process of shared decision-making regarding the care provided. Methods: A qualitative study based on grounded theory in a theoretical sample of 10 patients with pressure ulcers and 15 main caregivers from the health district of Puertollano (Spain). The data were based on semi-structured interviews, analysed using a coding process and the constant comparative method. Results: According to the participants, personal motivation and the involvement of primary care professionals facilitated their participation in the process of shared decision-making and generated feelings of positivity. In contrast, older age, having disabling pathologies, a low educational level or health paternalism were perceived as barriers for their involvement. Conclusions: A non-paternalistic care model and personal motivation facilitate the process of shared decision-making in the care of people with pressure ulcers. Further studies are required to deepen the understanding of this phenomenon and examine the barriers and facilitators for the involvement of patients and caregivers in the management of these injuries in other contexts.