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. 2021 Aug 6:14:100237.
doi: 10.1016/j.lanwpc.2021.100237. eCollection 2021 Sep.

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

Jane Wilbur  1 , Chloe Morrison  2 , Luke Bambery  2 , Jamie Tanguay  3 , Sally Baker  4 , Philip Sheppard  1 , Jeanine Shem  2 , Judith Iakavai  5 , Relvie Poilapa  2 , Islay Mactaggart  1
Affiliations

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

Jane Wilbur et al. Lancet Reg Health West Pac. .

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.

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Conflict of interest statement

Jane Wilbur, Philip Sheppard and Islay Mactaggart reported grants from World Vision Vanuatu during the study. All other authors have nothing to declare.The authors declare no conflict of interest.

Figures

Figure 1: Fred is walking to his latrine, using a walking stick. His wife is next to him, holding his arm and guiding him up the path.
Figure 1
Assistance using the family latrine. Fred Sewen's photo caption: Accessing the toilet is impossible, unless I have someone to assist me.
Figure 2: A latrine with a raised seat and lid. The room has a concrete, even floor and is wide enough for a wheelchair user to turn freely. The walls are corregated iron.
Figure 2
Accessible family latrine. George's photo caption: I use this toilet. It supports me more than the first one. It supports me in everything
Figure 3: Two buckets, without lids placed next to Selina’s bed.
Figure 3
Bucket latrines. Selina's photo caption: Eating, bathing and toileting in the same room is unhygienic
Figure 4: Fred stands in the foreground, holding onto a wooden bar above him to balance. His wife stands behind him, and is passing him a cup of water. There is a bowl in front of him.
Figure 4
Inaccessible bathing facilities. Fred Sewen's photo caption: Having a bath is hard work
Figure 5: Selina being supported to stand by a male family member. A female caregiver is putting Selina’s shoes on.
Figure 5
Reliance on caregivers Selina's photo caption: It's challenging to enjoy nature and breathe fresh air
See this image and copyright information in PMC

References

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