“…their opinions mean something”: Care staff's attitudes to health research involving people with intellectual disabilities

Hall, Natalie; Durand, Marie-Anne; Mengoni, Silvana

doi:10.1111/bld.12195

Cited by 5 publications

(17 citation statements)

References 24 publications

(41 reference statements)

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“…Ensuring reciprocity, by providing feedback from researchers to participants, is important (Lewis and Porter, 2004;Phillipson et al, 2012). Hall et al (2017) found supportive managers to be the key to successful recruitment, reporting on the difficulty for staff to engage with research when unsupported by senior management. They found that senior managers' perception on the importance of research greatly determined how much time and resource were allocated, subsequently affecting whether or not staff would be able to participate at all in research.…”

Section: Discussionmentioning

confidence: 99%

Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey

Lam

Bernal

Finlayson

et al. 2020

J Intellect Disabil

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Aim: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers. Method: The authors describe and reflect on a three-phased strategy in recruiting front-line staff ( n = 690) working for intellectual disability service providers ( n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement. Results: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability. Conclusions: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

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Section: Discussionmentioning

confidence: 99%

Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey

Lam

Bernal

Finlayson

et al. 2020

J Intellect Disabil

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“…This is a complex situation, however, and research has recently emerged (McDonald et al, 2017) that suggests that people with intellectual disabilities and other stakeholders agree that 'someone else' making the research participation decision, hindering research access, is harmful. Hall et al (2017) recommend contacting gatekeepers well in advance to explain the study and answer questions, making clear to them that the process and interview guide can be adapted as needed.…”

Section: Accessmentioning

confidence: 99%

Key considerations when interviewing individuals with expressive language difficulties

Verseghy

Atack²,

Maher

2020

Qualitative Research

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Qualitative research comes with its fair share of challenges; however, those challenges are often amplified when interviewing individuals with intellectual and developmental disabilities. A research project, Friendly Housemates, was conducted where people with intellectual and developmental disabilities were matched with post-secondary students to live together as housemates. Drawing on experience gleaned from interviews conducted for the study and earlier research, recommendations are made for collecting, analyzing, and reporting data from participants who are quiet or have expressive language difficulties. These practices will help to ensure that the voices that are so often relegated to the fringes are brought to the disability research discourse.

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“…This encouraged a more engaging conversation than a structured interview which allowed the YADD to be fully comfortable in jumping in and out of questions by providing his in-depth perspective/ thoughts on matters. (Field log notes P68) As the paragraph above shows, our team implemented some suggestions also recommended by other researchers, to better adapt the interview to individuals with DDs including asking questions in an informal manner, rephrasing them, and having short sessions (Hall et al, 2017).…”

Section: Strategies To Accommodate Yaddmentioning

confidence: 99%

“…Although people with disabilities experiences socioeconomic and health inequities, they are underrepresented in research that aims at proposing policy recommendations and practices to promote equal opportunities and inclusion (Hall, Durand, & Mengoni, 2017). Buettgen et al (2012) state that “there is a link between the way that research in the developmental area has been conducted and the disenfranchisement of developmentally disabled people” (p. 604).…”

Section: Dds: Interlocking Exclusionsmentioning

confidence: 99%

Strategies to Promote the Inclusion of Young Adults With Developmental Disabilities in Community-Based Health Studies

et al. 2018

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We discuss strategies to promote the inclusion of people with developmental disabilities (DDs) in qualitative community-based research studies. Strategies were applied in three projects conducted between 2012 and 2017 that addressed issues of socioeconomic challenges, discrimination, and exclusion of children and young adults with developmental disabilities (YADD). Strategies included partnership with community organizations; inclusion of YADD, family caregivers (FCs), and service providers in advisory committees (ACs); and strategies to accommodate YADD. As part of our contribution, we discuss issues of invisibility and exclusion of individuals with DDs who have "low" functioning capacities. There is a need to review studies sampling inclusion criteria as they may constitute a barrier for participation. Preference for sampling "high" functioning individuals may reinforce exclusion in research, and replicate broader patterns of socioeconomic exclusion of individuals with disabilities. Our discussion of inclusive research is informed by critical disability studies and the underlying principle "nothing about us without us.

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“…their opinions mean something”: Care staff's attitudes to health research involving people with intellectual disabilities

Cited by 5 publications

References 24 publications

Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey

Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey

Key considerations when interviewing individuals with expressive language difficulties

Strategies to Promote the Inclusion of Young Adults With Developmental Disabilities in Community-Based Health Studies

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