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Differences in quality of care as perceived by persons with intellectual disabilities and their relatives.
Speet, M., Delnoij, D.M., Sixma, H.J., Groenendijk, J.J. Differences in quality of care as perceived by persons with intellectual disabilities and their relatives. European Journal of Public Health: 2005, 15(suppl. 1) 19. Abstract. 13th Annual EUPHA Meeting "Promoting the public's health: reorienting health policies, linking health promotion and health care", Graz, 10-12 November 2005.
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.)
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.)
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.)
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.)