Experiences and impact of living with incontinence associated stigma: a protocol for a systematic review and narrative synthesis of qualitative studies

Abstract

Introduction: incontinence is global health and social issue, with urinary incontinence alone affecting over 400 million people. Incontinence can lead to physical harms such as skin damage, but it also commonly causes social and psychological harms, including those associated with stigma. For many people, treatment to cure incontinence does not work or is not suitable and they live with the long-term consequences of incontinence. At the moment, no stigma reduction interventions (increasingly used with other conditions such as mental health problems and HIV) have been developed for people living with incontinence. As a starting point for developing such an intervention, this review will address the questions 1) What are the incontinence (urinary or faecal) associated experiences of stigma of people living with incontinence? 2) What is the impact of incontinence associated stigma on their lives? 

Methods: the reviewers will search Embase, Medline, PsychINFO and the Cumulative Index to Nursing and Allied Health Literature using controlled vocabulary and relevant search terms. Articles assessed to meet inclusion criteria will be included. Once duplicates have been removed, titles and abstracts will be screened and full texts of selected research articles will be reviewed. An adapted Joanna Briggs Institute Data Extraction Form will be used to collect the data and quality will be assessed using the Joanna Briggs Institute checklist for qualitative research appraisal tool. A framework approach (using the Revised Framework for Understanding Non-communicable Disease Related Stigma) will be used to organise, integrate, interpret and summarise findings from included articles. The review will be reported in accordance with the Enhancing Transparency in reporting the synthesis of qualitative research statement. Prospero registration number CRD42021259065. 

Discussion: the systematic review described in this protocol will provide the first in-depth, comprehensive understanding of people’s experiences of the stigma associated with incontinence and the impact that it has on their lives. It will identify broader influences of contextual variables such as age, sex, cause and type of incontinence, socio-economic culture and geographical location. The review aims to provide insights to support the development of incontinence associated stigma reduction interventions.

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