Challenges associated with using continence management products: Qualitative study set in India, Papua New Guinea and Romania

Background

Effectively managing urine and faecal leakage is essential to maintain quality of life for people living with incontinence. Most people affected by long-term incontinence use continence management products (purchased or homemade). These products can have both positive and negative consequences. Globally, people living in lower and middle income settings often do not have access to products or only very limited options, but availability is increasing. Understanding the challenges of product use is important to support product decision making. The aim of this study was to identify and describe challenges associated with using continence management products for adults and young people living with incontinence in India, Papua New Guinea and Romania.

Methods

We used a qualitative exploratory design and participatory action research approach in this study. Data were collected using semi-structured interviews with 63 people (continence product user n = 42, parent/carer n = 21) who took part in a total of 54 interviews in India, Papua New Guinea and Romania. Secondary analysis of the data was undertaken using a framework approach to address the study aim.

Results

Participants used products namely, indwelling urinary catheters, disposable absorbent products and homemade products (e.g. bottles or blankets). Experiences varied widely and depended on individual characteristics and circumstances. Four themes were used to categorise the key challenges associated with continence product use (i. Physical side-effects, ii. Cost and impact on access, iii. Engagement in day-to-day activities and iv. Psychological and social effects). The large majority of participants reported one or more negative consequences of use, with skin damage, infection, embarrassment, smell, difficulties using or disposing of the products and cost dominating, varying by product type. Some challenges were relatively minor, but others (such as wounds or needing to move out of their home) were potentially life changing.

Conclusion

Most participants reported an overall benefit from using products, but many also experienced significant challenges. Some did not appear to be using an appropriate product to meet their needs or were using products incorrectly (e.g. not changing them frequently enough). Ensuring a range of products to meet individual needs will help mitigate against unintended harms. To optimise the benefits of product use, policy makers and service providers seeking to improve continence product provision should consider local and individual contexts, and ensure personnel are trained to support product selection and correct fit and usage.