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

Vanessa Burholt Orcid Logo, Kathryn Peri, Sharon Awatere, Deborah Balmer, Gary Cheung, Julie Daltrey, Jaime Fearn, Rosemary Gibson, Ngaire Kerse, Anna Michele Lawrence, Tess Moeke-Maxwell, Erica Munro, Yasmin Orton, Avinesh Pillai, Arapera Riki, Lisa Ann Williams

PLOS ONE, Volume: 18, Issue: 7, Start page: e0288613

Swansea University Author: Vanessa Burholt Orcid Logo

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DOI (Published version): 10.1371/journal.pone.0288613

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 inconti...

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Published in: PLOS ONE
ISSN: 1932-6203
Published: Public Library of Science (PLoS) 2023
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URI: https://cronfa.swan.ac.uk/Record/cronfa64592
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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&#x2019; study, and collecting new cross-sectional and longitudinal qualitative data from M&#x101;ori and non-M&#x101;ori PLWD and their caregivers. 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spelling 2023-12-08T14:17:14.1345881 v2 64592 2023-09-21 Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study cf7fe9863906cd54df5b0a99904d535e 0000-0002-6789-127X Vanessa Burholt Vanessa Burholt true false 2023-09-21 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. Journal Article PLOS ONE 18 7 e0288613 Public Library of Science (PLoS) 1932-6203 Dementia, PLWD, Aotearoa, New Zealand, Māori, Study protocol, Mixed methods study 18 7 2023 2023-07-18 10.1371/journal.pone.0288613 http://dx.doi.org/10.1371/journal.pone.0288613 COLLEGE NANME COLLEGE CODE Swansea University Another institution paid the OA fee This work was supported by Health Research Council of New Zealand (https://www. hrc.govt.nz/) Project Grant 21/117 to Vanessa Burholt. 2023-12-08T14:17:14.1345881 2023-09-21T22:50:33.9000403 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Vanessa Burholt 0000-0002-6789-127X 1 Kathryn Peri 2 Sharon Awatere 3 Deborah Balmer 4 Gary Cheung 5 Julie Daltrey 6 Jaime Fearn 7 Rosemary Gibson 8 Ngaire Kerse 9 Anna Michele Lawrence 10 Tess Moeke-Maxwell 11 Erica Munro 12 Yasmin Orton 13 Avinesh Pillai 14 Arapera Riki 15 Lisa Ann Williams 16 64592__28824__0d30f1e5b72445378391e155dbf9c215.pdf 64592.VOR.pdf 2023-10-18T17:14:40.7271016 Output 968342 application/pdf Version of Record true © 2023 Burholt et al. Distributed under the terms of a Creative Commons Attribution 4.0 License (CC BY 4.0). true eng https://creativecommons.org/licenses/by/4.0/
title Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study
spellingShingle Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study
Vanessa Burholt
title_short Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study
title_full Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study
title_fullStr Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study
title_full_unstemmed Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study
title_sort Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study
author_id_str_mv cf7fe9863906cd54df5b0a99904d535e
author_id_fullname_str_mv cf7fe9863906cd54df5b0a99904d535e_***_Vanessa Burholt
author Vanessa Burholt
author2 Vanessa Burholt
Kathryn Peri
Sharon Awatere
Deborah Balmer
Gary Cheung
Julie Daltrey
Jaime Fearn
Rosemary Gibson
Ngaire Kerse
Anna Michele Lawrence
Tess Moeke-Maxwell
Erica Munro
Yasmin Orton
Avinesh Pillai
Arapera Riki
Lisa Ann Williams
format Journal article
container_title PLOS ONE
container_volume 18
container_issue 7
container_start_page e0288613
publishDate 2023
institution Swansea University
issn 1932-6203
doi_str_mv 10.1371/journal.pone.0288613
publisher Public Library of Science (PLoS)
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
url http://dx.doi.org/10.1371/journal.pone.0288613
document_store_str 1
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description 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.
published_date 2023-07-18T20:25:18Z
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