Judgements about carer assessments for carers of people with dementia: case vignette study

Abstract

Objectives UK carer assessments, in primary and social care, intend to discover what carers need in their caring roles and more widely. Evidence points to these not being configured sufficiently around carers of people with dementia, with potentially their breadth of needs not being recognised.  We evaluated the extent of agreement, between carers of people with dementia, primary care, and social care professionals, on their recommendations from assessing carers’ needs in a range of circumstances.  It is intended for findings to be taken forward as recommendations for policy and practice. Methods Comparison of judgements, between carers, primary and social care professionals, on whether real-life circumstances in 9 anonymised case vignettes necessitated a range of 14 services to support carers appropriately.  Participants were 6 carers of people with dementia, 7 primary care staff, and 2 social care staff.  We presented participants with each vignette and asked them to make binary judgements of whether they would recommend a range of services in each case. Percentage agreement and Fleiss’ kappa coefficients measured the level of agreement amongst multiple carers, primary and social care staff and overall.  These agreements were then compared. Results Carers agreed in their judgements more than primary or social care professionals. The overall level of agreement from judgements made by all participants, however, was ‘slight’ with variability between participant groups and overall. The need for First Language Support in some cases was recognised, an improvement from previous evidence.  Conclusions Case vignettes are useful for investigating judgements concerning these carers’ needs, so raising issues for policy and practice.  It is essential for carer assessments to be more reliable in recommending services based on need to ensure less variability, depending on assessor and carers circumstances.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

Yes

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Not Applicable

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

University of Manchester Research Ethics Committee (Ref: 2022-14569-26301 14/12/2022) and, additionally, for primary care staff, the Health Research Authority (IRAS Project ID: 326181 23/HRA/1321).

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Not Applicable

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Not Applicable

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Not Applicable

Data Availability

The datasets generated and analysed in this study and the full anonymized case vignettes are publicly available via the Figshare data repository, at https://doi.org/10.48420/25483270.v1 Participants consented to make anonymized data publicly available.

https://doi.org/10.48420/25483270.v1

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