Quality of life in the people with disability: individual’s perception

TL;DR

This study explores how people with intellectual disability in Brazil perceive their own quality of life, revealing differences compared to caregivers' perceptions.

Contribution

The study provides insights into self-perceived quality of life among people with intellectual disability using the WHOQOL-DIS-ID questionnaire in Brazil.

Findings

Individuals with ID reported higher psychological scores but lower discrimination scores compared to caregivers.

Caregivers reported higher physical scores but lower autonomy scores compared to individuals with ID.

Significant differences were found in self-perception versus caregiver perception across most domains.

Abstract

There are few studies about how people with intellectual disability (ID) perceive their own quality of life (QoL), with research being focus, mainly, in the opinion of caregivers and/or family. Thinking about QoL, the World Health Organization developed an instrument that measures QoL, the WHOQOL. In Brazil, this instrument was adapted, validated and translated for people with ID and their caregivers.

The aim of this study was to increase knowledge and understanding of how people with ID perceive their own QoL.

This study was approved by the Ethics and Research Committee. Sample of 51 individuals aged between 19 and 54 years (G1), with medical diagnosis of ID, who did not present physical/mental disabilities and/or mental disorders and 31 caregivers (G2). G1 answered the WHOQOL-DIS-ID questionnaire and G2 answered the WHOQOL-DISID Proxy questionnaire. The results were statistically analyzed considering p-value ≤ 0.05.

The individuals with ID presented higher score on the psychological and lower score in the discrimination domain. The caregivers presented higher scores on the physical and lower scores in the autonomy domain. Regard the comparison between self-perception and the perception of caregivers, on Table 1, it was possible to observe significant differences in Psychological, Social, Environmental and all domains for the Disabilities Module.
Table 1.Correlation between Domains
Domain
Mean G1
Mean G2
SD G1
SD G2
Median G1
Median G2P valuePhysical Capacity72,368,817,119,178,571,40,32Psychological80,167,717,517,983,366,6<0,01*Social Relationships68,854,322,621,666,650<0,01*Environment73,963,314,518,47568,7<0,01*Discrimination43,155,125,416,750500,04*Autonomy65,541,931,425,266,650<0,01*Inclusion77,058,916,120,17554,1<0,01*

Correlation between Domains

It is critical that people with ID participate in the creation and/or changes of inclusion policies and actions. Since the relationship between the perception of self-reported QoL and reported by caregivers are different and converge only in the physical domain.

None Declared

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