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BMC Health Services Research
Published in: BMC Health Services Research 1/2019

Open Access 01-12-2019 | Intellectual Disability | Research article

Validation of an instrument to assess informal caregivers’ perceptions about the delivery of patient-centred care to people with intellectual disabilities in residential settings

Authors: Jane Murray Cramm, Anna Petra Nieboer

Published in: BMC Health Services Research | Issue 1/2019

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Abstract

Background

Validated instruments are needed to assess the delivery of patient-centred care (PCC) to people with intellectual disabilities (PWIDs) needing 24-h care in residential settings. Eight dimensions of PCC have been identified: taking patients’ preferences into account; access to care; emotional support; physical comfort; information and education; involvement of family and friends; coordination of care; and continuity and secure transition. Objective of this study is to validate an instrument to assess these eight PCC dimensions among informal caregivers of PWIDs in residential settings (institutional settings as well as group homes in the community). The original 24-item instrument was developed and validated among professionals providing care to PWIDs.

Methods

This study was conducted in a disability care centre in the Netherlands. All informal caregivers of PWIDs living in institutional settings or group homes in the community in need of 24-h care were invited to participate (n = 941). The response rate was 31% (n = 289). We tested the instrument using structural equation modelling, and examined its validity and reliability.

Results

Confirmatory factor analyses revealed good indices of fit and overall internal consistency, as represented by Cronbach’s alpha values. All eight dimensions of PCC were related positively to satisfaction with care (all p ≤ 0.001). As expected, informal caregivers were less critical of PCC and its underlying dimensions, except for information and education, than were professionals working in the same disability care centre.

Conclusions

The psychometric properties of the 24-item PCC instrument for informal caregivers (PCC-IC) were satisfactory, indicating that the PCC-IC is valid and reliable for the assessment of the eight dimensions of PCC among informal caregivers of PWIDs in residential settings.
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Metadata
Title
Validation of an instrument to assess informal caregivers’ perceptions about the delivery of patient-centred care to people with intellectual disabilities in residential settings
Authors
Jane Murray Cramm
Anna Petra Nieboer
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2019
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-019-4358-9

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