The representational history of disabled people can largely be characterized as one of being put on display or hidden away. Self-representations have been a powerful part of the disability rights and culture movement, but recently scholars have analysed the ways in which these run the risk of creating a 'single story' that centres the experiences of white, western, physically disabled men. Here we introduce and theorize with Project Re•Vision, our arts-based research project that resists this singularity by creating and centring, without normalizing, representations that have previously been relegated to the margins. We draw from body becoming and new materialist theory to explore the dynamic ways in which positionality illuminates bodies of difference and open into a discussion about what is at stake when these stories are let loose into the world.Keywords: arts-informed methodology; representation; digital storytelling; body; story; disability and difference Points of interest• In this article we talk about a research project, Project Re•Vision, which is exploring representations and meanings of disability and difference through digital stories.• In our research project, we asked disabled people and healthcare providers to each make a digital story. We invite you to watch the digital stories as you read the article. Go to http://projectrevision.ca/videos/. Following the prompts, type in the password 'projectrevision'. • Digital stories are videos, two to three minutes long, that pair audio-recordings of personal narratives with visuals (photographs, short videos, artwork, etc.).• We end with the suggestion of being open to the possibilities -the creative, communal, and artistic possibilities -of how the digital stories made within our project disrupt problematic representations of disability.
Objective: To compare the pathways to care and duration of untreated psychosis (DUP) for people of Black-African, Black-Caribbean, or White-European origin with first-episode psychosis (FEP). Methods:We recruited a sample of 171 patients with FEP of Black-African, Black-Caribbean, and White-European origin from hospital-and community-based early intervention services (EIS) in the cities of Toronto and Hamilton. We compared the 3 groups on DUP and key indicators of the pathway to care. Results:We observed differences in pathways to care across the 3 groups. Black-Caribbean participants had an increased odds of referral from an inpatient unit to EIS (OR 3.33; 95% CI 1.46 to 7.60) and a decreased odds of general practitioner involvement on the pathway to care (OR 0.17; 95% CI 0.07 to 0.46), as well as fewer total contacts (exp[β] 0.77; 95% CI 0.60 to 0.99) when compared with White-European participants. Black-African participants had an increased odds of contact with the emergency department at first contact (OR 3.78; 95% CI 1.31 to 10.92). The differences in the DUP between groups were not statistically significant. Conclusions:Our findings suggest that there are significant differences in the pathways to EIS for psychosis for people of African and Caribbean origin in our Canadian context. It is essential to gain a comprehensive understanding of the pathways that different population groups take to mental health services, and the reasons behind observed differences, to inform the development of equitable services, targeting patients in the critical early stages of psychotic disorder.
ObjectivesThis paper reports on a qualitative exploration of the reasons for differences in pathways to care and duration of untreated psychosis (DUP) in the African, Caribbean and European (ACE) Pathways to Care study from the perspective of respondents to the study and their families.SettingOntario, Canada.ParticipantsThirty-four participants in total. Twenty-five young people who had experienced a first episode of psychosis and nine family members. Participants were part of the ACE Pathways to Care study.DesignWe implemented six focus groups. Furthermore, we implemented four in-depth interviews with two African-origin young women, one Caribbean-origin woman, and one European-origin woman with lived experience of psychosis.ResultsFactors that influenced help-seeking delays across the three groups were: personal awareness of symptoms, family members’ knowledge of psychotic symptoms and knowledge of mental health services. Youth and their family members described how stigma played a key role in pathways to care by stopping them from asking for help. The way in which stigma operated on the three groups’ members, from feeling ashamed to feeling guilty for their mental illnesses, helped to explain differences in DUP between the groups. Guilt feelings emerged as a prominent theme among members from the African and Caribbean groups and it was not discussed in the European focus group. Delay in entering into first-episode psychosis programmes was also influenced by the stigma perceived by young people in healthcare settings. This had an impact on the therapeutic relationships, disclosure of symptoms and overall trust in the healthcare system.ConclusionsThe findings of this paper suggest that stigma, especially internalised stigma, may operate in different ways in European-origin, African-origin and Caribbean-origin groups. These findings could inform the development of more equitable services for people in early stages of psychosis.
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