The psychological and social impact of self‐advocacy group membership on people with intellectual disabilities: A literature review

Abstract

Background There is no one agreed definition of self‐advocacy, but it can be taken to include actions and concepts such as standing up for one's rights and self‐determination. Method A review of studies examining the psychological and social impact of self‐advocacy group membership on people with intellectual disabilities was conducted. Systematic searches of electronic databases (PsycINFO, Scopus, Web of Science and ProQuest's Sociology Database), and manual searches of reference lists and citations, identified 12 studies. Results “Empowerment” and “increased confidence” were frequently reported outcomes. “Belonging,” increased opportunities for social connections and changed self‐identity were also key themes. Conclusions Limitations of the review included difficulty categorizing outcomes, and limitations of the evidence base included a lack of quantitative studies. Implications of the review include an observation that the role of self‐advocates in the research literature could be extended to the co‐construction of research agendas.

The impact of self‐advocacy organizations on the subjective well‐being of people with intellectual disabilities: A systematic review of the literature

“…This was a critical and innovative element of this systematic review, which the present authors included to gain the insights and perspectives of a person with experience of self‐advocacy. It corresponds with recent calls for increased co‐construction of research agendas relating to self‐advocacy (Fenn & Scior, 2019), and for transparency of the co‐authoring process (Strnadová et a., 2018).…”

“…After this first stage of analysis, the four key domains of well‐being and a broad list of emerging codes were identified by the first and second author and reviewed by the others. Any recurring themes that did not correspond with the four domains of the Dynamic Model of Wellbeing but which were relevant to our research questions were coded under “other.” In line with Fenn and Scior's review (2019), the present authors identified that some outcomes were complex to categorize, potentially falling under multiple “domains.” Examples include “learning new skills” and “acquiring knowledge.” While both of these outcomes connect to an increase in personal resources, they also relate to self‐advocates’ sense of competency (associated with good functioning and satisfaction of needs in the Dynamic Model). In such incidences, the authors discussed and agreed upon a “primary” domain, while noting where it was important to draw attention to the interconnectedness of outcomes and their relationship with different domains.…”

“…This is the first systematic review to focus explicitly on the impact of self‐advocacy on the subjective well‐being of people with intellectual disabilities. It builds upon another recently published systematic literature review that explored the psychological and social impact of self‐advocacy on its members (Fenn & Scior, 2019). While some of the outcomes reported in this study overlap with the previous review, this article further contributes to knowledge regarding the impact of self‐advocacy by identifying the ways in which it influences members’ subjective sense of well‐being, particularly in relation to outcomes concerned with good functioning, satisfaction of needs, and overall feelings of happiness (Abdallah et al., 2011).…”

The Challenges of Safety and Community Integration for Vulnerable Individuals

“…In order to maximise the voice of vulnerable individuals future research would benefit from supporting the interview process by the use of symbolic/photographic material and draw upon a "Talking Mats" approach where needed, to guide participants through the interview process at their pace and provide a supportive structure for their responding [93,94]. The provision of practical support, in terms of self-advocacy training, to help vulnerable participants articulate their views may also be beneficial [95]. Future research may also benefit from the use of a mixed methods approach that draws upon observational work of actual community activities to supplement interview and/or questionnaire data and build a more contextualized understanding of experiences of all community members [96].…”

Participation of adults with cognitive, physical, or psychiatric impairments in family of origin and intimate relationships: a grounded theory study

“…In particular, people with cognitive impairment should be given more capacity and power in defending their (sexual) rights, especially when their own parents-as our data identified-sometimes curtail sexual rights. There is evidence that membership in self-advocacy groups has positive effects and furthers participation and social inclusion of people with intellectual disability also when it comes to social connections and relationships [33,34].…”