“I'm scared to talk about it”: exploring experiences of incontinence for people with and without disabilities in Vanuatu, using mixed methods

Abstract

Background: Incontinence is the involuntary loss of urine and/or faeces. It is stigmatised and can reduce quality of life. People with incontinence require water, sanitation, hygiene (WASH) and incontinence products. People with disabilities are at risk of experiencing incontinence and may face challenges managing, however, minimal evidence exists. Methods: This study aimed to complete a population-based study of disability in TORBA and SANMA Provinces, Vanuatu to quantify the prevalence and demographics of disability, experience of WASH access and incontinence for people with and without disabilities. We completed a survey, case-control study, in-depth interviews, structured observations and PhotoVoice. 179 people with disabilities and 148 people without disabilities completed the incontinence module in the case-control study. We applied purposeful sampling to select 27 people with and without a disability from the nested case-control, and 16 key informants for the qualitative study to further explore the impact of incontinence on people's lives. Findings: People with disabilities were three times more likely to experience incontinence than people without disabilities (Adjusted Odds Ratio 3.3, 95% confidence interval 1.8 – 5.8). Challenges facing all people with incontinence were distance to latrines and lack of incontinence products. People with disabilities were less able to wash and participate in social activities. Less than 10% had assistive technologies; caregivers had no lifting devices. People experiencing incontinence did not disclose this to others, including medical professionals, who also did not raise the issue. Interpretation: Inaccessible and inadequate WASH, lack of incontinence products and stigma increased isolation for all people with incontinence. Additionally, people with disabilities and caregivers faced discrimination and insufficient assistive technologies. This negatively affected their wellbeing and quality of life, and requires addressing. Funding: Australian Government's Water for Women Fund and public donations.