Navigating Risks and Professional Roles: Research with Lesbian, Gay, Bisexual, Trans, and Queer Young People with Intellectual Disabilities

Marshall, Zack

doi:10.1525/jer.2012.7.4.20

Cited by 28 publications

(51 citation statements)

References 62 publications

(92 reference statements)

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“…Five (9.8%) correspond to intellectual disability (ID) (Marshall, 2012;McCann, Lee, & Brown, 2016;McClelland et al, 2012;Tallentire et al, 2016;Thomas & DeAlwis, 1995) and five (9.8%) to autism spectrum disorders (ASD) (Bashe, 2012;El-Ghoroury, 2012;Ingudomnukul, Baron-Cohen, Wheelwright, & Knickmeyer, 2007;Newsom, Weitlauf, Taylor, & Warren, 2012;Parsi & Elster, 2012). Persons diagnosed with ID and ASD are more likely to use medical and mental health services and tend to have decreased socialization as compared to their age-matched peers (McCann et al, 2016;McClelland et al, 2012).…”

Section: Intellectual Disability/autism Spectrum Disordersmentioning

confidence: 99%

Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people

Moreno

Laoch

Zasler

2017

NRE

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Abstract. BACKGROUND:There is an increasing interest in sexual and gender diversity in neurorehabilitation. Healthcare professionals wanting to improve their practice know the importance of understanding the needs and expectations of specific communities. OBJECTIVE: To critically review the literature about neurological disorders in people who identify as lesbian, gay, bisexual, transgender, queer, intersex, asexual, and people with other sexual orientations and forms of gender expression (LGBTQIA+). METHODS: Systematic search in electronic databases (CINAHL, EMBASE, Medline, PsycINFO, Scopus, and Web of Science) and identification of relevant studies. RESULTS: Quantitative and qualitative findings are summarized and reported by neurological disorders: a) neurodisability/epilepsy (17.7%), b) intellectual disability/autism spectrum disorders (19.6%), c) dementia/HIV-related dementia (39.2%), d) spinal cord injury (7.8%), and e) traumatic brain injury/stroke (15.7%). CONCLUSIONS:LGBTQIA+ people with neurodisabilities and their partners/families of choice can conceal their sexual orientation or gender identity for fear of diminished quality of care. Their invisibility translates into health disparities, lack of policies and services that meet their unique needs. Dementia is the most common neurodisability documented in LGBTQIA+ people. We provide recommendations to increase LGBTQIA+ cultural competency for clinical practice, research, and policy to help different stakeholders to promote a positive change in the culture of neurodisability.

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Section: Intellectual Disability/autism Spectrum Disordersmentioning

confidence: 99%

Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people

Moreno

Laoch

Zasler

2017

NRE

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“…Regarding the outcomes or impact of PPI of young people with a chronic condition, we have noted a general enthusiasm about the value of working together. From the literature, we know that young people's PPI can have positive impacts on, for example, the design of projects [4,19], the people involved [4,15,19,32], and the dissemination of project results [4][5][6][7]19]. However, the evidence of this impact is of relatively low quality [2].…”

Section: Discussionmentioning

confidence: 99%

“…In part, our findings echo the results of previous studies. It is, for example, well-known that projects in which young people with a chronic condition are involved take more time than non-participatory projects [ 4 – 6 , 15 ] and previous studies have also emphasised the importance of involving them in the early phases of a project [ 5 , 29 , 30 ]. The importance of reimbursements [ 4 , 29 , 30 ] and support [ 15 , 17 , 31 , 32 ] has been reported in previous studies as well.…”

Section: Discussionmentioning

confidence: 99%

“…practice-oriented projects aimed at developing, for example, tools and interventions. This development is driven by the realisation that involving those young people as co-actors in decision-making processes contributes to the relevance of projects [ 3 – 5 ] and improves the uptake of results [ 4 , 6 , 7 ]. According to the United Nations Convention on the Rights of the Child, it is a fundamental right of young people to have a say in matters that affect them, without discrimination and irrespective of disabilities [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

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Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

et al. 2020

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Plain English summary Background Young people with a chronic condition are increasingly involved in doing research and developing tools and interventions that concern them. Working together with patients is called Patient and Public Involvement (PPI). We know from the literature that PPI with young people with a chronic condition can be challenging. Therefore, it is important that everyone shares their lessons learned from doing PPI. Aim We want to share our lessons learned from a large program, called Care and Future Prospects. This program helps young people with a chronic condition to, for example, go to school or to find a job. It funded numerous projects that could contribute to this. In all projects, project teams collaborated with young people with a chronic condition. What did we do We asked young people with a chronic condition and project teams about their experiences with PPI. Project teams wrote reports, were interviewed, and filled out a tool called the Involvement Matrix. Young people filled out a questionnaire. Findings In the article, we present our lessons learned. Examples are: it is important to involve young people with a chronic condition from the start of a project and everyone involved in a project should continuously discuss their responsibilities. We provide practical tips on how young people with a chronic condition and project teams can do this. A tip for young people is, for example: ‘discuss with the project team what you can and want to do and what you need’. An example of a tip for project teams is: ‘Take time to listen attentively to the ideas of young people’. Abstract Background The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice. Methods We share our lessons learned from a large participatory program, called Care and Future Prospects. This program aims to improve the social position of young people aged 0–25 with a physical or mental chronic condition by funding participatory projects. We have drawn our lessons from 33 of these projects, using four data sources. One data source provided information from the perspective of young people with a chronic condition, i.e. questionnaires. Three data sources contained information from the perspectives of project teams, i.e. project reports, case studies of projects and Involvement Matrices. For most of the projects, we have information from multiple data sources. Results We have combined the findings derived from all four data sources. This resulted in multiple lessons learned about PPI with young people with a chronic condition. Those lessons are divided into six themes, including practicalities to take into account at the start, involvement from the start, roles and responsibilities, support, flexibility and an open mind, and evaluation of process and outcomes. Conclusions The lessons learned have taught us that meaningful PPI requires effort, time and resources from both young people and project teams, from the beginning to the end. It is important to continuously discuss roles and responsibilities, and whether these still meet everyone’s needs and wishes. Our study adds to previous research by providing practical examples of encountered challenges and how to deal with them. Moreover, the practical tips can be a valuable aid by showing young people and project teams what concrete actions can support a successful PPI process.

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“…Yet, these community-based approaches can also create blind spots. For instance studies based in LGBT communities have addressed health and wellness issues (Clements-Nolle & Bachrach, 2008;Marshall, 2012;Northridge, McGrath, & Krueger, 2007;Reece & Dodge 2004;Reed, Miller, Knawulezi, & Valenti, 2012;Rhodes, Hergenrather, & Duncan, 2007), largely to the exclusion of other issues that queer people and communities face. is literature does not consider those instances when the researchers are also members of the community partner, or vice versa, both of which are the case with this project.…”

Section: Scholarly and Researchmentioning

confidence: 99%

Engaged Queer Scholarship: Probing a New Paradigm of Knowledge Creation

Mulé

Lowik²,

Teixeira³

et al. 2014

SRC

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This article features a reflexive iteration of engaged scholarship regarding the Queer Liberation Theory Project, a community-based research study with the social justice group Queer Ontario, which involves academics, activists, and artists, a number of whom are cross affiliated. We explore the tensions and challenges involved in developing and creating knowledge via an engaged scholarship process that must respect the historical philosophical perspectives of a social movement as well as today’s academic theories. This article addresses the challenges of developing new knowledge (a theory) that counters a powerful, neoliberal, mainstream segment of today’s lesbian, gay, bisexual, and transgender (LGBT) movements, with implications for society at large. The layered issues associated with engaged scholarship are disentangled, including vulnerability to neoliberalism, navigating competing perspectives, and how academics/activists/artists both understand and engage in knowledge creation.

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Navigating Risks and Professional Roles: Research with Lesbian, Gay, Bisexual, Trans, and Queer Young People with Intellectual Disabilities

Cited by 28 publications

References 62 publications

Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people

Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people

Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

Engaged Queer Scholarship: Probing a New Paradigm of Knowledge Creation

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