Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.

Burholt V; Peri K; Awatere S; Balmer D; Cheung G; Daltrey J; Fearn J; Gibson R; Kerse N; Lawrence AM; Moeke-Maxwell T; Munro E; Orton Y; Pillai A; Riki A; Williams LA

Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.

dc.citation.issue	7
dc.citation.volume	18
dc.contributor.author	Burholt V
dc.contributor.author	Peri K
dc.contributor.author	Awatere S
dc.contributor.author	Balmer D
dc.contributor.author	Cheung G
dc.contributor.author	Daltrey J
dc.contributor.author	Fearn J
dc.contributor.author	Gibson R
dc.contributor.author	Kerse N
dc.contributor.author	Lawrence AM
dc.contributor.author	Moeke-Maxwell T
dc.contributor.author	Munro E
dc.contributor.author	Orton Y
dc.contributor.author	Pillai A
dc.contributor.author	Riki A
dc.contributor.author	Williams LA
dc.contributor.editor	Harding A
dc.coverage.spatial	United States
dc.date.accessioned	2024-10-22T23:44:37Z
dc.date.available	2024-10-22T23:44:37Z
dc.date.issued	2023-07-18
dc.description.abstract	BACKGROUND: The number of people living with dementia (PLWD) in Aotearoa New Zealand (NZ) was estimated at 96,713 in 2020 and it is anticipated that this number will increase to 167,483 by 2050, including an estimated 12,039 Māori (indigenous people of NZ) with dementia. Experiencing urinary incontinence (UI) or faecal incontinence (FI) is common for PLWD, particularly at the later stages of the disease. However, there is no robust estimate for either prevalence or incidence of UI or FI for PLWD in NZ. Although caregivers rate independent toilet use as the most important activity of daily living to be preserved, continence care for PLWD in the community is currently not systematised and there is no structured care pathway. The evidence to guide continence practice is limited, and more needs to be known about caregiving and promoting continence and managing incontinence for PLWD in the community. This project will seek to understand the extent of the challenge and current practices of health professionals, PLWD, caregivers and family; identify promising strategies; co-develop culturally appropriate guidelines and support materials to improve outcomes; and identify appropriate quality indicators so that good continence care can be measured in future interventions. METHODS AND ANALYSIS: A four-phase mixed methods study will be delivered over three years: three phases will run concurrently, followed by a fourth transformative sequential phase. Phase 1 will identify the prevalence and incidence of incontinence for PLWD in the community using a cohort study from standardised home care interRAI assessments. Phase 2 will explore continence management for PLWD in the community through a review of clinical policies and guidance from publicly funded continence services, and qualitative focus group interviews with health professionals. Phase 3 will explore experiences, strategies, impact and consequences of promoting continence and managing incontinence for PLWD in the community through secondary data analysis of an existing carers' study, and collecting new cross-sectional and longitudinal qualitative data from Māori and non-Māori PLWD and their caregivers. In Phase 4, two adapted 3-stage Delphi processes will be used to co-produce clinical guidelines and a core outcome set, while a series of workshops will be used to co-produce caregiver resources.
dc.description.confidential	false
dc.format.pagination	e0288613-
dc.identifier.author-url	https://www.ncbi.nlm.nih.gov/pubmed/37463158
dc.identifier.citation	Burholt V, Peri K, Awatere S, Balmer D, Cheung G, Daltrey J, Fearn J, Gibson R, Kerse N, Lawrence AM, Moeke-Maxwell T, Munro E, Orton Y, Pillai A, Riki A, Williams LA. (2023). Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.. PLoS One. 18. 7. (pp. e0288613-).
dc.identifier.doi	10.1371/journal.pone.0288613
dc.identifier.eissn	1932-6203
dc.identifier.elements-type	journal-article
dc.identifier.issn	1932-6203
dc.identifier.number	e0288613
dc.identifier.pii	PONE-D-23-04272
dc.identifier.uri	https://mro.massey.ac.nz/handle/10179/71809
dc.language	eng
dc.publisher	Public Library of Science (PLoS)
dc.publisher.uri	https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0288613
dc.relation.isPartOf	PLoS One
dc.rights	(c) 2023 The Author/s
dc.rights	CC BY 4.0
dc.rights.uri	https://creativecommons.org/licenses/by/4.0/
dc.subject	Humans
dc.subject	Caregivers
dc.subject	Cohort Studies
dc.subject	Cross-Sectional Studies
dc.subject	Dementia
dc.subject	Home Care Services
dc.subject	New Zealand
dc.subject	Urinary Incontinence
dc.title	Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.
dc.type	Journal article
pubs.elements-id	479293
pubs.organisational-group	Other