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Research article
Jemini Bhatt
University College London
Corresponding Author
ORCiD: https://orcid.org/0000-0002-7273-7234
License:
This work is licensed under a CC BY 4.0 License. Read Full License
Background: A diagnosis of dementia presents individuals with both social and psychological challenges but research on self-stigma in dementia has been largely confined to qualitative approaches due to a lack of robust outcome measures that assess change. The Stigma Impact Scale is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a diverse UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and psychometric properties of self-stigma measures for people with dementia for use as measures of change.
Method: A four-stage approach was used to identify, adapt and test self-stigma measures in a UK population who had received a diagnosis of dementia: 1) psychometric outcome measures were extracted based on the evidence base of an anti-stigma intervention that guided the current work, 2) identified measures were assessed for psychometric quality according to Terwee criteria, 3) modifications were made for culture (UK) and condition (dementia rather than mental health) through stakeholder consultations (researchers in fields of dementia and stigma; experts by experience in living with, or caring for persons with dementia), and 4) modified measures were pilot tested in a small sample of people living with dementia (N=40) for acceptability, and preliminary psychometric properties (internal consistency, test-retest, concurrent and convergent validity).
Results: Seven measures were identified but most were of low quality (Terwee range: 0-4). Three measures were considered and modifiable by stakeholders. Pilot testing indicated data were normally distributed. Almost all measures demonstrated acceptable internal consistency (except the Stigma Stress Scale total and internalized shame subscale), test retest reliability, concurrent validity and convergent validity, with some exceptions.
Conclusion: The Secrecy subscale, Stigma Impact Scale and Stigma Stress Scale were acceptable for use in a UK population of people living with dementia. However, further psychometric analysis is required before such measures can be implemented in psychosocial research.
Keywords
stigma, Alzheimer’s, cognition, outcomes, reliability, validity
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CURRENT STATUS: Published
View the published article at BMC Geriatrics.
No community comments so far
Submission checks complete
On 24 Dec, 2020
Editorial decision: Accept
On 21 Dec, 2020
No comments provided
Editorial decision: Minor revision
On 07 Dec, 2020
Editor assigned
On 24 Sep, 2020
Submission checks complete
On 23 Sep, 2020
Editor invited
On 23 Sep, 2020
Version 1
Posted 14 Apr, 2020
No comments provided
Editorial decision: Minor revision
On 08 Sep, 2020
Review #2 received
Received 11 May, 2020
Review #1 received
Received 11 May, 2020
Reviewer #2 agreed
On 21 Apr, 2020
Reviewers invited
Invitations sent on 20 Apr, 2020
Reviewer #1 agreed
On 20 Apr, 2020
Editor assigned
On 13 Apr, 2020
Submission checks complete
On 10 Apr, 2020
Editor invited
On 09 Apr, 2020
First submitted
On 07 Apr, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Geriatrics & Gerontology
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A new preprint design is coming!
We have improved readability, clarity, accessibility, and opportunities for engagement.
See the published version of this preprint at BMC Geriatrics.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research article
Jemini Bhatt
University College London
Corresponding Author
ORCiD: https://orcid.org/0000-0002-7273-7234
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Published
View the published article at BMC Geriatrics.
No community comments so far
Submission checks complete
On 24 Dec, 2020
Editorial decision: Accept
On 21 Dec, 2020
No comments provided
Editorial decision: Minor revision
On 07 Dec, 2020
Editor assigned
On 24 Sep, 2020
Submission checks complete
On 23 Sep, 2020
Editor invited
On 23 Sep, 2020
Version 1
Posted 14 Apr, 2020
No comments provided
Editorial decision: Minor revision
On 08 Sep, 2020
Review #2 received
Received 11 May, 2020
Review #1 received
Received 11 May, 2020
Reviewer #2 agreed
On 21 Apr, 2020
Reviewers invited
Invitations sent on 20 Apr, 2020
Reviewer #1 agreed
On 20 Apr, 2020
Editor assigned
On 13 Apr, 2020
Submission checks complete
On 10 Apr, 2020
Editor invited
On 09 Apr, 2020
First submitted
On 07 Apr, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Geriatrics & Gerontology
License:
This work is licensed under a CC BY 4.0 License. Read Full License
View the published article at BMC Geriatrics.
Background: A diagnosis of dementia presents individuals with both social and psychological challenges but research on self-stigma in dementia has been largely confined to qualitative approaches due to a lack of robust outcome measures that assess change. The Stigma Impact Scale is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a diverse UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and psychometric properties of self-stigma measures for people with dementia for use as measures of change.
Method: A four-stage approach was used to identify, adapt and test self-stigma measures in a UK population who had received a diagnosis of dementia: 1) psychometric outcome measures were extracted based on the evidence base of an anti-stigma intervention that guided the current work, 2) identified measures were assessed for psychometric quality according to Terwee criteria, 3) modifications were made for culture (UK) and condition (dementia rather than mental health) through stakeholder consultations (researchers in fields of dementia and stigma; experts by experience in living with, or caring for persons with dementia), and 4) modified measures were pilot tested in a small sample of people living with dementia (N=40) for acceptability, and preliminary psychometric properties (internal consistency, test-retest, concurrent and convergent validity).
Results: Seven measures were identified but most were of low quality (Terwee range: 0-4). Three measures were considered and modifiable by stakeholders. Pilot testing indicated data were normally distributed. Almost all measures demonstrated acceptable internal consistency (except the Stigma Stress Scale total and internalized shame subscale), test retest reliability, concurrent validity and convergent validity, with some exceptions.
Conclusion: The Secrecy subscale, Stigma Impact Scale and Stigma Stress Scale were acceptable for use in a UK population of people living with dementia. However, further psychometric analysis is required before such measures can be implemented in psychosocial research.
The full text of this article is available to read as a PDF.
This is a list of supplementary files associated with this preprint. Click to download.
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