“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.

A qualitative cross-sectional study exploring the implementation of disability-inclusive WASH policy commitments in Svay Reing and Kampong Chhnang Provinces, Cambodia

“…Analyses of intra-household access to these facilities across six countries show that people with disabilities are less able to collect water and use the household toilet independently and are more likely to contact urine and feces when using the toilet than family members without disabilities (Mactaggart et al, 2018(Mactaggart et al, , 2021Banks et al, 2019). Despite limited access, people with disabilities often have additional requirements for WASH. For instance, in Vanuatu, people with disabilities are three times more likely than people without disabilities to experience urinary incontinence but less able to use the toilet or bathe as often as required (Mactaggart et al, 2021;Wilbur et al, 2021a).…”

“…Improving physical access to WASH services for people with disabilities is important, but it is only part of the solution. Ensuring the meaningful participation of people with disabilities, providing accessible information, engaging and supporting caregivers, integrating disability-related activities and indicators in WASH policies and guidance documents, and supporting professionals to implement and monitor these are equally important (Wilbur et al, 2021a). "Meaningful participation" means expressing one's views, which influence the process of decision-making and the outcome (De Albuquerque, 2014).…”

Menstrual Health Experiences of People with Intellectual Disabilities and Their Caregivers during Vanuatu’s Humanitarian Responses: A Qualitative Study

“…PhotoVoice is a visual research methodology applied in many settings to explore sensitive issues related to WASH, including menstrual health, perimenopause, and incontinence [ 7 , 32 , 33 , 34 , 35 , 36 ]. Participants own the photos and identify how and where to share their pictures.…”

Participatory Research in Disability in Low- and Middle-Income Countries: What have we Learnt and what Should we Do?

“…He said that attendees appreciated the 'rawness' of the images, which were unlike polished images usually exhibited, and felt they brought the statistics and research findings to life and wanted to hear more about the experiences of the person who presented his photos. One PhotoVoice participant with a disability, who had incontinence and has since passed away, told his family that he was proud to be able to share his experiences through PhotoVoice (Wilbur et al 2021). He hoped they would help others in a similar situation and that it would influence policy makers to improve the situation.…”