Perceptions of staff and family of the quality of life of people with severe to profound intellectual disability

K.C.J.M. De Geus-neelen, W.M.W.J. Van Oorsouw, A.H.C. Hendriks, P.J.C.M. Embregts

Research output: Contribution to journalArticleScientificpeer-review

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Abstract

Background:
Staff and relatives often act as advocates for people with severe to profound intellectual disability (ID). Since staff and relatives make proxy judgements about quality of life for people with severe to profound ID, it is important to know how well the perceptions of the two groups correspond with each other.

Method:
Fifty-one staff-family dyads completed the QOL-PMD questionnaire. Agreement between proxies was assessed using the proportion of observer agreement (Po) and Wilcoxon signed-rank tests.

Results:
Proxies agreed relatively strongly about the applicability of questionnaire items. There was also relatively strong agreement about the client’s QOL, except for items related to internal, subjective experiences (e.g., sexual fulfillment, pain).

Conclusion:
People with severe to profound ID are not able to report their QOL well. Because the people making proxy judgements about their QOL are not in good agreement on some of the most critical subjective indicators, careful information exchange about these indicators is important for improving the QOL of people with ID.
Original languageEnglish
Pages (from-to)42-50
JournalJournal of Intellectual and Developmental Disability
Volume44
Issue number1
DOIs
Publication statusPublished - 2019

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Proxy
quality of life
disability
staff
Disabled Persons
Nonparametric Statistics
questionnaire
information exchange
know how
dyad
pain
Intellectual Disability
Quality of Life
Staff
experience
Group
Surveys and Questionnaires

Keywords

  • ADULTS
  • CARE
  • CHILDREN
  • GUIDELINES
  • OTHERS
  • PAIN
  • PARENT
  • PROXY
  • Quality of life
  • family
  • intellectual disability
  • proxy
  • staff

Cite this

@article{0579b2cf440a4b9eaf4d2f5bf2a98260,
title = "Perceptions of staff and family of the quality of life of people with severe to profound intellectual disability",
abstract = "Background: Staff and relatives often act as advocates for people with severe to profound intellectual disability (ID). Since staff and relatives make proxy judgements about quality of life for people with severe to profound ID, it is important to know how well the perceptions of the two groups correspond with each other.Method: Fifty-one staff-family dyads completed the QOL-PMD questionnaire. Agreement between proxies was assessed using the proportion of observer agreement (Po) and Wilcoxon signed-rank tests.Results: Proxies agreed relatively strongly about the applicability of questionnaire items. There was also relatively strong agreement about the client’s QOL, except for items related to internal, subjective experiences (e.g., sexual fulfillment, pain).Conclusion: People with severe to profound ID are not able to report their QOL well. Because the people making proxy judgements about their QOL are not in good agreement on some of the most critical subjective indicators, careful information exchange about these indicators is important for improving the QOL of people with ID.",
keywords = "ADULTS, CARE, CHILDREN, GUIDELINES, OTHERS, PAIN, PARENT, PROXY, Quality of life, family, intellectual disability, proxy, staff",
author = "{De Geus-neelen}, K.C.J.M. and {Van Oorsouw}, W.M.W.J. and A.H.C. Hendriks and P.J.C.M. Embregts",
year = "2019",
doi = "10.3109/13668250.2017.1310813",
language = "English",
volume = "44",
pages = "42--50",
journal = "Journal of Intellectual and Developmental Disability",
issn = "1366-8250",
publisher = "Informa Healthcare",
number = "1",

}

Perceptions of staff and family of the quality of life of people with severe to profound intellectual disability. / De Geus-neelen, K.C.J.M.; Van Oorsouw, W.M.W.J.; Hendriks, A.H.C.; Embregts, P.J.C.M.

In: Journal of Intellectual and Developmental Disability, Vol. 44, No. 1, 2019, p. 42-50.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - Perceptions of staff and family of the quality of life of people with severe to profound intellectual disability

AU - De Geus-neelen, K.C.J.M.

AU - Van Oorsouw, W.M.W.J.

AU - Hendriks, A.H.C.

AU - Embregts, P.J.C.M.

PY - 2019

Y1 - 2019

N2 - Background: Staff and relatives often act as advocates for people with severe to profound intellectual disability (ID). Since staff and relatives make proxy judgements about quality of life for people with severe to profound ID, it is important to know how well the perceptions of the two groups correspond with each other.Method: Fifty-one staff-family dyads completed the QOL-PMD questionnaire. Agreement between proxies was assessed using the proportion of observer agreement (Po) and Wilcoxon signed-rank tests.Results: Proxies agreed relatively strongly about the applicability of questionnaire items. There was also relatively strong agreement about the client’s QOL, except for items related to internal, subjective experiences (e.g., sexual fulfillment, pain).Conclusion: People with severe to profound ID are not able to report their QOL well. Because the people making proxy judgements about their QOL are not in good agreement on some of the most critical subjective indicators, careful information exchange about these indicators is important for improving the QOL of people with ID.

AB - Background: Staff and relatives often act as advocates for people with severe to profound intellectual disability (ID). Since staff and relatives make proxy judgements about quality of life for people with severe to profound ID, it is important to know how well the perceptions of the two groups correspond with each other.Method: Fifty-one staff-family dyads completed the QOL-PMD questionnaire. Agreement between proxies was assessed using the proportion of observer agreement (Po) and Wilcoxon signed-rank tests.Results: Proxies agreed relatively strongly about the applicability of questionnaire items. There was also relatively strong agreement about the client’s QOL, except for items related to internal, subjective experiences (e.g., sexual fulfillment, pain).Conclusion: People with severe to profound ID are not able to report their QOL well. Because the people making proxy judgements about their QOL are not in good agreement on some of the most critical subjective indicators, careful information exchange about these indicators is important for improving the QOL of people with ID.

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KW - family

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KW - staff

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