More than what the eye can see: the emotional journey and experience of powerlessness of integrated care service users and their carers

Abstract

Markella Boudioni,1 Nina Hallett,2 Cristina Lora,2 Wendy Couchman2 1Patient Experience Research Centre (PERC) and NIHR Imperial Biomedical Research Centre (BRC), Imperial College London, 2Faculty of Health and Social Care, London South Bank University, London, UK Purpose: This article presents the emotional journey and experience of powerlessness of integrated care service users and carers.  Materials and methods: The experiences of seven integrated care service users and carers affected by complex conditions in a London borough were captured as video stories. The integrated care service coordinated a system of health and social care: primary care, community matrons, social workers, and the voluntary sector. The service was designed to respond to identified cases of high-risk individuals with long-term, multiple, and age-related conditions needing preventive interventions. The video stories were analyzed by researchers in collaboration with service users using a visual thematic qualitative approach. This report is part of an independent analysis of the integrated care service evaluation that used the experience-based codesign model.  Results: The findings are presented in the respective contexts of people with complex conditions and their carers. The overwhelming feelings and emotions of both were loss of control and power throughout their emotional journey, with family carers adopting a protective attitude toward the patients. Their experience of powerlessness was variable throughout their emotional journey. They were affected more strongly when in need of extra help and support and while they were undergoing the process of receiving extra services. When they were receiving help and support outside and within hospitals, some participants were empowered, gaining skills and knowledge by being provided with the mechanisms to cope with their condition at present and in the future.  Conclusion: Feelings of powerlessness were very common among integrated care service users and their carers. Powerless/empowerment has been poorly investigated to date. Visual methods and collaborative visual analysis with service users have proved to be powerful methods too, but have been rarely reported. Keywords: visual methods, collaborative research, patients, complex conditions, UK