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A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment

A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment
A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment
Background
most people living with dementia (PLWD) will develop incontinence problems with associated harmful consequences. Well-contained incontinence is often the main treatment goal. It would therefore be expected that poorly contained incontinence would have a negative impact.

Aim
to investigate differences in how well-contained or poorly contained incontinence impacts on the experience of living with incontinence for PLWD at home and their carers.

Design
secondary analysis of a qualitative study.

Methods
semi-structured interviews were undertaken with PLWD, carers and healthcare professionals (continence or dementia nurses). PLWD and carers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Interviews were recorded and transcribed verbatim. Framework analysis was used.

Results
forty-five people (twenty-six carers, two PLWD, nine continence nurses and eight dementia nurses) participated. Despite poorly contained incontinence, some PLWD/carer dyads appeared relatively unaffected by incontinence. Conversely, one or both members of some dyads who achieved good containment found incontinence care highly challenging. Four themes were identified, together forming a preliminary model of incontinence containment and impact, as follows:

Well-contained incontinence, lower negative impact

Well-contained incontinence, higher negative impact

Poorly contained incontinence, higher negative impact

Poorly contained incontinence, lower negative impact

Conclusion
reliable containment is an important goal for PLWD living at home and their carers, but it is not the only goal. Other factors, such as behaviours that challenge or carer coping strategies, can mean that even well-contained incontinence can have a negative impact. This paper proposes a preliminary model for evaluation.
Murphy, Catherine
b7f2dd56-3a8a-412a-9f6a-bf468ce7f749
De Laine, Christine R
ef803c2f-cd45-4541-a093-5738fd5c19bc
Macaulay, Margaret
505970d3-1e67-4c1f-8291-3a950d336c6b
Avery, Miriam
ad9dda5f-a7da-42dc-8cb7-83a8ca37e6ef
Fader, Mandy
659b0223-ebb9-4717-9d6d-9ec7b7ad2971
Murphy, Catherine
b7f2dd56-3a8a-412a-9f6a-bf468ce7f749
De Laine, Christine R
ef803c2f-cd45-4541-a093-5738fd5c19bc
Macaulay, Margaret
505970d3-1e67-4c1f-8291-3a950d336c6b
Avery, Miriam
ad9dda5f-a7da-42dc-8cb7-83a8ca37e6ef
Fader, Mandy
659b0223-ebb9-4717-9d6d-9ec7b7ad2971

Murphy, Catherine, De Laine, Christine R, Macaulay, Margaret, Avery, Miriam and Fader, Mandy (2021) A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment. International Continence Society conference, ONLINE, Melbourne, Australia. 14 - 17 Oct 2021. 9 pp .

Record type: Conference or Workshop Item (Paper)

Abstract

Background
most people living with dementia (PLWD) will develop incontinence problems with associated harmful consequences. Well-contained incontinence is often the main treatment goal. It would therefore be expected that poorly contained incontinence would have a negative impact.

Aim
to investigate differences in how well-contained or poorly contained incontinence impacts on the experience of living with incontinence for PLWD at home and their carers.

Design
secondary analysis of a qualitative study.

Methods
semi-structured interviews were undertaken with PLWD, carers and healthcare professionals (continence or dementia nurses). PLWD and carers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Interviews were recorded and transcribed verbatim. Framework analysis was used.

Results
forty-five people (twenty-six carers, two PLWD, nine continence nurses and eight dementia nurses) participated. Despite poorly contained incontinence, some PLWD/carer dyads appeared relatively unaffected by incontinence. Conversely, one or both members of some dyads who achieved good containment found incontinence care highly challenging. Four themes were identified, together forming a preliminary model of incontinence containment and impact, as follows:

Well-contained incontinence, lower negative impact

Well-contained incontinence, higher negative impact

Poorly contained incontinence, higher negative impact

Poorly contained incontinence, lower negative impact

Conclusion
reliable containment is an important goal for PLWD living at home and their carers, but it is not the only goal. Other factors, such as behaviours that challenge or carer coping strategies, can mean that even well-contained incontinence can have a negative impact. This paper proposes a preliminary model for evaluation.

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More information

Published date: 2021
Venue - Dates: International Continence Society conference, ONLINE, Melbourne, Australia, 2021-10-14 - 2021-10-17

Identifiers

Local EPrints ID: 456425
URI: http://eprints.soton.ac.uk/id/eprint/456425
PURE UUID: b534d8c7-f828-4c4b-b010-bda9143ce05a
ORCID for Catherine Murphy: ORCID iD orcid.org/0000-0003-1244-5106
ORCID for Margaret Macaulay: ORCID iD orcid.org/0000-0003-1737-4589

Catalogue record

Date deposited: 28 Apr 2022 16:42
Last modified: 29 Apr 2022 01:52

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Contributors

Author: Miriam Avery
Author: Mandy Fader

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