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What are the information needs of people with dementia and their family caregivers when they are admitted to a mental health ward and do current ward patient information leaflets meet their needs?

Wolverson, Emma; Harrison Dening, Karen; Gower, Zoe; Brown, Pat; Cox, Julie; McGrath, Victoria; Pepper, Amy; Prichard, Jane

Authors

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Dr Emma Wolverson E.Wolverson@hull.ac.uk
Reader in Ageing and Dementia. Research Lead for Dementia UK.

Karen Harrison Dening

Zoe Gower

Pat Brown

Julie Cox

Victoria McGrath

Amy Pepper

Jane Prichard



Abstract

Introduction: An admission to a mental health ward is an uncertain and unexpected part of a person’s journey with dementia and consequently, families require information about what to expect and how to prepare. This study aimed to establish the information needs of people with dementia and their families at the point of admission to a mental health ward and to collate existing ward information leaflets to explore if they meet these information needs.

Methods: This research was in two parts, (1) a qualitative study using focus groups, one with people with dementia and family carers with lived experience of such an admission (n=6) and another with Admiral Nurses (n=6) to explore information needs at the point of admission. (2) Each NHS mental health trust (n=67) was asked to provide a copy of their ward information shared at admission. A total of 30 leaflets were received from 15 NHS trusts, after removing duplicates 22 were included. A content analysis was conducted to evaluate to what extent leaflets met the information needs identified from focus groups.

Results:
Two main categories ‘honest, accurate and up to date information’ and ‘who is the information for’ and four subcategories were derived from focus group data. Participants felt that people with dementia and families were likely to have different information needs. Material for people with dementia needed to be in an accessible format. Information should cover the aim of the admission, a timeline of what to expect and details about how families will be involved in care. Practical information about what to pack and ward facilities was valued. Participants spoke about the need to consider the tone of the information given people are likely to be distressed. The information leaflets reviewed did not meet the information needs identified by focus group participants.

Conclusions: People with dementia and family carers have different information needs at the point of admission to a mental health ward. Information provided to people with dementia needs to be in an accessible format with content relevant to these needs. Wards should aim to co-create information to ensure they meet people’s information needs

Citation

Wolverson, E., Harrison Dening, K., Gower, Z., Brown, P., Cox, J., McGrath, V., …Prichard, J. (in press). What are the information needs of people with dementia and their family caregivers when they are admitted to a mental health ward and do current ward patient information leaflets meet their needs?. Health Expectations,

Journal Article Type Article
Acceptance Date Feb 9, 2023
Online Publication Date Mar 19, 2023
Deposit Date Feb 14, 2023
Publicly Available Date Mar 29, 2024
Journal Health Expectations
Print ISSN 1369-6513
Publisher Wiley
Peer Reviewed Peer Reviewed
Keywords Admission; Dementia; Mental health; Patient information; Psychiatric care
Public URL https://hull-repository.worktribe.com/output/4200721

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Publisher Licence URL
http://creativecommons.org/licenses/by/4.0

Copyright Statement
© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.




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