Abstract
BackgroundValidated 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.MethodsThis 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.ResultsConfirmatory 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.ConclusionsThe 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.
Highlights
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
Years of research has led to the identification of eight PCC dimensions: 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 [2,3,4,5,6,7,8,9,10,11]
Construct validity All eight dimensions of PCC were related positively to satisfaction with care, indicating construct validity
Summary
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. Years of research has led to the identification of eight PCC dimensions: 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 [2,3,4,5,6,7,8,9,10,11]. When parents of PWIDs no longer co-reside with their adult child, they generally still remain very involved in their care delivery [16] and many of the parents continue to play an active role by providing assistance to meet their child’s daily care needs [17] Given these caregivers’ prominent roles in care delivery, the development and validation of measures for the assessment of PCC provided to PWIDs from their perspective is needed. Dummy variables were created for time spent caring in hours per week (less than 8 h (0) - ≥ 8 h (1)), years providing informal care (less than 10 years (0) - ≥ 10 years (1)).
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