Critical points in the experience of spouse caregivers of patients who have suffered a stroke. A phenomenological interpretive study

AIMS: To explore and document the experiences and values of spouse caregivers of stroke survivors. To gain more in-depth knowledge of how the act of caring and the adaption process affects caregiving spouses. MATERIALS AND METHODS: Phenomenological, qualitative study. This study included spouses of stroke survivors who also served as primary caregivers. Individual, semi-structured, in-depth interviews were conducted, transcribed, and analysed using a thematic content analysis as proposed by Giorgi. Data was analysed and managed using Atlas-ti (version 7.0). This study was approved by our institution´s Complejo Hospitalario de Caceres Ethics and Research Committee. RESULTS: Spouse caregivers of stroke survivors undergo a process of disruption in their private lives and relationships, marked by their caregiving duties. The experiences of spouses caring for stroke survivors is condensed into topics and subtopics: “Caregiving and that´s all” summarizes the sense of having no life horizons and also caregiver impossibility of moving away from caring role. Otherwise, “Breaking the couple´s life together” enlightens the further consequences of stroke in couples shared live biography, which needs to be understood and rebuilt. Finally, “Going through the (non) loss alone” alludes to how spouses reinterpret meaning of loss, which is not appreciated by others and that refers to the balance between stroke survival and any acquired global disability. CONCLUSIONS: A comprehensive approach to the couple (family), from a psycho-socio-emotional and relational perspective, is essential for ensuring adequate quality of life for people who suffered a stroke as well as their caregivers. Spouses-caregivers must be considered as individuals living a transition process due to their unexpected disrupting change, which nurses should address through a comprehensive and integrated approach focused on transition care. Care resources must be adapted to the interpretation that the spouses have of their caregiving role and their relationship with the different components of the caregiving process.