Differences in quality of care as perceived by persons with intellectual disabilities and their relatives.

Background: Health care organizations involve their clients in policymaking to deliver lient-orientated care and to improve the quality of care. However, in the care delivered to persons with intellectual disabilities, because of problems with communication skills, proxies are often used to gain information about the perceived quality of care. Research on the similarity between self-report and proxies, reveals contra dictionary evidence. The aim of this study is to explore differences between the views of persons with intellectual disabilities and their relatives about the quality of care. Methods: Using a combination of qualitative and quantitative methods a new instrument for measuring quality of care from the perspective of persons with intellectual disabilities’ relatives was developed. Persons with intellectual disabilities were involved from the beginning. Subsequently, this instrument was sent to 5400 clients’ relatives of a large Dutch care provider (response-rate: 58.4%). A total of 87 persons with mild intellectual disabilities were interviewed using an adapted version of the instrument. The design of the study allowed comparison on 26 quality aspects. Differences between the two groups were explored using Chi-square statistics (P < 0.05). Results: In general, persons with intellectual disabilities are more critical about the quality of care compared to their relatives, in areas that relate to ‘the support in the housing situation’ and ‘the care plan’. Significant differences were found in seven aspects: (i) care givers treat the patient seriously and respectful (ii) care givers make a good estimation of the client’s need for support (iii) care givers provide leisure activities (iv) caregivers pay attention to the clients’ sexuality (v) care givers take action if the client is not satisfied with his daily activities (vi) the client has a care plan (vii) agreements in the care plan are well explained to the client. Conclusions: According to this study, the persons with intellectual disability experience the quality of care differently than their relatives. This pleads for caution in the interpretation of the perceived care by relatives as a good reflection of persons with intellectual disabilities’ view. Triangulation in evaluating quality of care is suggested. (aut.ref.)