Abstract
BACKGROUND: Incontinence is a complex health and social issue, which involves the involuntary loss of urine or faeces or both. Individuals with disabilities are particularly vulnerable to incontinence. The management of incontinence has largely been overlooked in low and middle-income settings (LMICs). This study aimed to explore the incontinence management strategies employed by disabled people with severe incontinence and their caregivers in Sindh Province, Pakistan. METHODS: Incontinence management was explored through in-depth interviews with people with incontinence (PWI) and their caregivers, photovoice, and a market survey and product attribute assessment. Data was analysed thematically through inductive coding and evaluated against existing disability and caregiver frameworks. RESULTS: Incontinence management affected all aspects of daily life for PWI and caregivers. Effective management of incontinence was prioritised because caregivers viewed it to be part of their familial duty and a requirement for the household to remain pure in the eyes of God. Coping strategies included strict adherence to routines, reducing food and drink intake, creative uses of locally available natural resources, and a heavy reliance on soap and water for maintaining hygiene. Products such as adult diapers were largely unavailable, costly and were not deemed suitable for regular use. There were no social or medical interventions in the region to support incontinence management. The main impacts of incontinence on the household were social isolation, stigma, role shifts within the family, the development of physical ailments among caregivers, and decreased income. CONCLUSION: The complex health, psychological, social, economic, and cultural impacts of incontinence are exacerbated in LMICs due a lack of recognition of the condition, the absence of social or medical interventions and limited access to basic WASH infrastructure, and assistive devices or products. Appropriate solutions need to be developed in partnership with PWI and caregivers and need to be contextualised, affordable and sustainable.