Dispelling the so-called “Down syndrome advantage”: Assessing the presence of public stigma for mothers of children with intellectual disabilities

Mothers of children with intellectual disabilities face increased levels of negative psychological factors when compared to mothers of typically developing children due mostly to an increased child caretaking burden. A relationship in the literature has unfolded known as the “autism disadvantage” and “Down syndrome advantage,” in which mothers of children with Down syndrome are seen to suffer less negative psychological effects when compared to mothers of children with autism. While the literature has uncovered many of the predictors and potential buffering effects in the development of negative psychological well-being, little research has examined the role of affiliate stigma—the self-stigmatization that occurs in family members of children with intellectual disabilities—or public perceptions of mothers of children with intellectual disabilities. The present study seeks to frame the “autism disadvantage” and “Down syndrome advantage” relationship in the context of public stigma, as stigma directed toward mothers may indeed be internalized and predict greater depressive symptomologies and emotional distress. In a social context of a child presenting with disruptive behavior, results indicate that due to the invisible nature of autism, public stigma may be greater for mothers of children with autism when compared to mothers of children with Down syndrome, contributing to the known “autism disadvantage” discussed in the scientific community

Defining independence: A scoping review by the OMERACT patient perspective of remission in rheumatoid arthritis group

Aims The Outcome Measures in Rheumatology Trials (OMERACT) Remission in Rheumatoid Arthritis (RA) patient perspective working group has previously found that patients prioritised independence, pain, and fatigue as key domains of remission in RA. However, there is currently no clear definition of independence. Consequently, this scoping review aimed to explore how independence is represented in the RA literature. Methods A comprehensive search of the EMBASE, Medline, and PsycInfo databases was performed for publications that used independence or autonomy as a disease activity measure, description of disease in remission or treatment outcome. Papers were included if they involved adult participants and were written in English, with no restrictions on study design or publication year. Two reviewers (TK and AC, AT or BJ) independently screened the abstracts. A thematic approach was applied to derive common definitions and descriptions of independence. Results 660 articles were identified, of which 58 (25 qualitative, 28 quantitative, one mixed, and four reviews) met the inclusion criteria. 86% of total participants were female. Ten publications referenced remission. Independence took many forms; in addition to physical and functional capability, it was described in relation to work, social activities, autonomy in healthcare, and household activities. Four common themes describing independence were identified: 1. A return to a state before arthritis. 2. Being physically and functionally able. 3. A sense of freedom without needing to rely on others. 4. Having control over the organisation of one's life. Conclusion Although independence is frequently mentioned in the RA literature, it has various meanings, lacks a consistent definition, and is a concept rarely applied to remission. It is multi-factorial, exceeding functional ability alone, and contextualised within sociodemographic and disease factors. This scoping review provides common descriptions of independence to inform future qualitative work towards the development of an outcome measure of independence for the assessment of RA in remission