Adults with Intellectual Disabilities and their Carers as Researchers and Participants in a RCT

Turk, Vicky; Leer, Geoffrey; Burchell, Sarah; Khattram, Sukhjinder; Corney, Roslyn; Rowlands, Gill

doi:10.1111/j.1468-3148.2011.00643.x

Cited by 15 publications

(32 citation statements)

References 22 publications

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“…This finding supports previous work which highlighted 236 the difficulties faced by healthcare professionals when caring for patients with an ID, and the reliance 237 of these professionals on ID carers for information and support (Murphy, 2006;Turk et al, 2012a). 238…”

Section: Care Perceptions 216supporting

confidence: 77%

Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses

Flynn

Hulbert-Williams

Bramwell

et al. 2015

European Journal of Oncology Nursing

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Purpose: Caring for people with cancer or an intellectual disability (ID) is stressful: little is known about the combined impact of caring for cancer patients with an ID, though this is expected to be especially challenging. Method: Eighty-three nurses, working in oncology or a related field (i.e. palliative care) were recruited. Perceptions of caring for patients with and without an ID were measured, alongside potentially confounding information about participant demographic characteristics and perceived stress. Results: Participants felt less comfortable communicating with patients with an ID about their illness (F(1,82) = 59.52, p < 0.001), more reliant on a caregiver for communication (F(1,82) = 26.29, p < 0.001), and less confident that the patient's needs would be identified (F(1,82) = 42.03, p < 0.001) and met (F(1,81) = 62.90, p < 0.001). Participants also believed that caring for this patient group would induce more stress, compared with patients without an ID (F(1,81) = 31.592, p < 0.001). Previous experience working with ID patient groups appears to mitigate some perceptions about providing care to this population. Conclusions: Caring for cancer patients with an ID may intensify this, already difficult, role. Through training and knowledge exchange, oncology nurse's confidence in communication, providing appropriate care, and positivity towards this patient group may be improved

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Section: Care Perceptions 216supporting

confidence: 77%

Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses

Flynn

Hulbert-Williams

Bramwell

et al. 2015

European Journal of Oncology Nursing

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“…Turk et al . ). Even so, our preference would be to move towards funding bids that allowed for co‐researchers to be recompensed for their time and expertise.…”

Section: Discussionmentioning

confidence: 97%

“…; Turk et al . ). Inclusive research is a growing discipline with people with intellectual disabilities undertaking various roles, such as being members of advisory groups (Walmsley & Johnson ), advising on and piloting the content of interview questions (Emerson et al .…”

Section: Introductionmentioning

confidence: 97%

“…Several accounts exist of the contributions that people have made as paid research assistants (Bigby & Frawley ; Turk et al . ). However, relatively little documentation exists on the specifics of more experienced researchers working in partnership with people with intellectual disabilities to maximize their participation throughout the whole research process from setting the research questions through to the dissemination of the findings.…”

Section: Introductionmentioning

confidence: 97%

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Co‐researching with People who Have Intellectual Disabilities: Insights From a National Survey

O’Brien

McConkey

Iriarte³

2013

Research Intellect Disabil

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The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. This paper tells you about how people with intellectual disabilities worked with a group of university researchers. Both groups were called co-researchers and together they ran 23 focus groups across Ireland. People with intellectual disabilities talked about their lives and what could make them better. They said they needed to have a good place to live; a job; enough money; relationships; and acceptance as respected citizens. The university co-researchers wrote about what it was like doing research together and how people with intellectual disabilities joined the advisory group; decided on the questions; ran focus groups; and presented findings. Together they grew into a community of researchers where the university co-researchers shared their research skills and people with intellectual disabilities shared what it was like living with a disability. They both saw great value in working together and plan to work more to make this type of research happen.

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“…Turk et al . () for example, reported on the participation of adults with intellectual disability in a large quantitative study that involved a randomized control trial.…”

Section: Introductionmentioning

confidence: 99%

Conceptualizing Inclusive Research with People with Intellectual Disability

Bigby

Frawley

Ramcharan

2013

Research Intellect Disabil

233

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Adults with Intellectual Disabilities and their Carers as Researchers and Participants in a RCT

Abstract: The inclusion of people with ID both as researchers and as participants was achieved through an appropriate design, strong research partnerships, adequate and flexible resources, promotion of teamwork and a strong task focus.

Cited by 15 publications

References 22 publications

Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses

Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses

Co‐researching with People who Have Intellectual Disabilities: Insights From a National Survey

Conceptualizing Inclusive Research with People with Intellectual Disability

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