Evidence map›Paper›PMID 38087205›Full record

Trial reportBMC palliative care2023

Caring for persons with Dementia: a qualitative study of the needs of carers following care recipient discharge from hospital.

Janice Du Preez, Antonio Celenza, Christopher Etherton-Beer, Paula Moffat, Elissa Campbell, Glenn Arendts

Erratum issuedAbstract readRandomized Controlled Trial
In one paragraph

Trial report in BMC palliative care, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 3 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

6 authors.

Janice Du PreezDepartment of Emergency Medicine, Fiona Stanley Hospital, Murdoch, Western, Australia. Janice.DuPreez@uwa.edu.au.ORCID http://orcid.org/0000-0002-0541-964X
Antonio CelenzaEmergency Department, Sir Charles Gairdner Hospital, Nedlands, Western, Australia.ORCID http://orcid.org/0000-0001-9792-9526
Christopher Etherton-BeerSchool of Medicine, University of Western Australia and Department of Geriatric Medicine, Royal Perth Hospital, Perth, Western, Australia.ORCID http://orcid.org/0000-0001-5148-0188
Paula MoffatPalliative Care Unit, Bethesda Hospital, Claremont, Western, Australia.
Elissa CampbellDepartment of Geriatric Acute and Rehabilitation Medicine, Sir Charles Gairdner Hospital, Nedlands, Western, Australia.ORCID http://orcid.org/0000-0003-3600-7995
Glenn ArendtsDepartment of Emergency Medicine, Fiona Stanley Hospital, Murdoch, Western, Australia.ORCID http://orcid.org/0000-0001-7830-7756

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundA randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers' perceptions of their own and their care-recipients' needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge.

methodsThe CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient's life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer's perception of the care recipient's future needs, carer's current needs, and a proposed current and future care plan. The researcher's philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants' reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied.

resultsThirty carer participants were included. Analysis identified three major themes: Carers' perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions.

conclusionThe CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer.

trial registrationAustralian Clinical Trials Registration: (ACTRN12619001187134).

Indexed as

CaregiversDementiaAgedAustraliaHospitalsHumansPatient DischargeCarersDementiaEnd of lifeNeeds assessment

Identifiers

PMID38087205
PMCPMC10717287

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.