School of Health Sciences, University of Southampton, Southampton, United Kingdom.
PLoS One. 2022 May 26;17(5):e0268900. doi: 10.1371/journal.pone.0268900. eCollection 2022.
Incontinence is a major problem for people with dementia (PWD) and their family/friend caregivers, often causing substantial harm, including residential care admission. The incontinence needs of PWD are complex and different from those of people without dementia. The aim of this study was to investigate carer and nurse perceptions of continence service provision and potential improvements.
A secondary analysis of qualitative data was undertaken. Semi-structured interviews (n = 45) were undertaken with PWD, family caregivers and healthcare professionals (continence or dementia nurses) in the UK. PWD and caregivers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Framework analysis was used. The COREQ Research guideline statement assists reporting.
Four themes were found. Firstly, there was a lack of awareness of the service and waiting time. Many caregivers were unaware of continence services and dementia nurses often viewed it as a pad provision service. Caregivers reported long waits not meeting their urgent needs. Secondly, product provision was often inadequate. Most caregivers self-purchased all or many products and substantial variation in product provision was found. The number of products provided was often inadequate. Thirdly, a sense that "nothing can be done" was observed by some nurses and caregivers. Caregivers believed that, if nothing else, care information should be provided. Finally, suggestions for improvements were made, including proactive service signposting, joint clinics with dementia services, improved information before crisis point, dementia training for continence nurses and improved product provision.
Continence service inadequacies for PWD and caregivers have been reported for many years. This study demonstrates service provision remains unsatisfactory in the UK. Stakeholders propose a range of service improvements. It highlights that listening to the voices of PWD, caregivers and nurses is crucial for services seeking to improve continence services for PWD living at home.
失禁是痴呆症患者（PWD）及其家庭/朋友照顾者的主要问题，经常造成重大伤害，包括入住养老院。PWD 的失禁需求复杂且与无痴呆症患者不同。本研究旨在调查照顾者和护士对失禁服务提供情况的看法以及潜在的改进措施。
对定性数据进行二次分析。在英国对 PWD、家庭照顾者和医疗保健专业人员（失禁或痴呆症护士）进行了半结构化访谈（n=45）。通过 www.joindementiaresearch.nihr.ac.uk 和痴呆症/照顾者团体招募 PWD 和照顾者，通过雇主招募护士。使用框架分析。COREQ 研究准则声明有助于报告。
发现了四个主题。首先，对服务缺乏认识和等待时间长。许多照顾者不知道失禁服务，痴呆症护士通常将其视为提供尿布的服务。照顾者报告说等待时间长，无法满足他们的紧急需求。其次，产品供应往往不足。大多数照顾者自行购买了全部或大部分产品，产品供应存在很大差异。提供的产品数量往往不足。第三，一些护士和照顾者观察到一种“无能为力”的感觉。照顾者认为，如果没有其他办法，可以提供护理信息。最后，提出了一些改进建议，包括主动服务引导、与痴呆症服务联合诊所、在危机点之前提供更好的信息、为失禁护士提供痴呆症培训以及改善产品供应。
多年来，一直有报道称 PWD 和照顾者的失禁服务不足。本研究表明，英国的服务提供仍然不尽如人意。利益相关者提出了一系列服务改进措施。这表明，倾听 PWD、照顾者和护士的意见对于寻求改善 PWD 居家失禁服务的服务至关重要。
