Behavioural phenotypes: working towards translational research through research partnerships

Adams, Dawn; Heussler, Honey; Gray, Katherine

doi:10.1111/jir.12513

Cited by 4 publications

(5 citation statements)

References 5 publications

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“…Following this, three members of the myVoice team collaborated with a group of academics, as full and equal partners, during all stages (design, implementation, analysis, interpretation and dissemination) of the research process to address their research question. Crucially, gaining their insight from initial conception of the study ensured that the research was relevant and useful outside of academia (Adams et al, 2018 ), and would have the largest impact on the lives of those who need it most (Pellicano et al, 2014 ).…”

Section: Participatory Research In the Context Of Consultationmentioning

confidence: 99%

Participatory Autism Research: How Consultation Benefits Everyone

Keating

2021

Front. Psychol.

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Section: Participatory Research In the Context Of Consultationmentioning

confidence: 99%

Participatory Autism Research: How Consultation Benefits Everyone

Keating

2021

Front. Psychol.

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“…In recent years, there have been increasing calls for research topics and priorities to be driven not by researchers but by the people who are ‘experts by experience’, individuals with intellectual disability (ID), and in the case of the current project, those who live with, or support, individuals with ID with or without autism (Pellicano et al, 2014; Pratt, 2019). Such priority‐setting processes are viewed as ethically respecting the voice of the person with a disability and their support community (Pratt, 2019) and can result in research that is relevant and useful outside of academia (Adams et al, 2018).…”

Section: Introductionmentioning

confidence: 99%

Research and training priorities of staff supporting individuals with intellectual disabilities with or without autism

Simpson

Adams

Manokara³

et al. 2022

Policy Practice Intel Disabi

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Research and training priority setting can help to direct limited resources to areas, which will have maximum benefit in improving the skills and knowledge of support workers to better meet the needs of their clients. Staff from a multi‐site organisation in Singapore that supports individuals with intellectual disability and/or autism completed a questionnaire identifying their research and training practices and priorities. Staff were asked to identify their access to training and research, and what they viewed as priorities in these areas. They also completed a Likert scale questionnaire on training and research priorities identified from previous research. Response rate was 27.8% (n = 82). Analyses found that staff were more likely to rely on training than research to inform their knowledge, with training in understanding and managing behaviours identified as a priority across the organisation. Staff identified interventions and supports for caregivers as a research priority. The consensus with previous research would suggest that there are training needs and research areas, which may inform global priorities for this population.

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“…It is useful in identifying the range of needs within a target population, so that research can be directed towards those areas where it is most needed to maximize the impact. Although such frameworks are becoming increasingly integral to research funders, they should be seen not simply as a funding body requirement, but rather as a meaningful and beneficial process of ensuring that research is both relevant and useful outside of academia [ 9 ]. Research priorities of the autism community can be established using a number of methods including an online questionnaire, interviews, and focus groups, with online questionnaires one of the most common methods used.…”

Section: Introductionmentioning

confidence: 99%

Listening to parents to understand their priorities for autism research

Clark

Adams

2020

PLoS ONE

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Involving the autism community in research increases the real-world translation and impact of findings. The current study explored the research priorities of parents of school-aged children on the autism spectrum across the home, school, and community settings. A combination of content analysis of an online questionnaire (n = 134) and Q-sort methodology (n = 9) was used. The most commonly identified research priorities in the online questionnaire were child health and well-being (home setting), socialisation and social support (school), and community awareness and understanding of autism (community). The Q-sort method highlighted different top priorities, with understanding the parent, sibling, child and family impact and stress the highest ranked priority for home, teacher/staff education and support for the school, and recognizing and supporting anxiety for the community. The implications of the findings are discussed in relation to shifting the framework of autism research to align research agendas with parental priorities.

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Behavioural phenotypes: working towards translational research through research partnerships

Cited by 4 publications

References 5 publications

Participatory Autism Research: How Consultation Benefits Everyone

Participatory Autism Research: How Consultation Benefits Everyone

Research and training priorities of staff supporting individuals with intellectual disabilities with or without autism

Listening to parents to understand their priorities for autism research

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