'I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study

C Beighton, C Victor, IM Carey… - Journal of …, 2019 - journals.sagepub.com
Patient and public involvement is considered integral to health research in the United
Kingdom; however, studies documenting the involvement of adults with intellectual …

The inclusion of adults with intellectual disabilities in health research–challenges, barriers and opportunities: a mixed‐method study among stakeholders in England

R Bishop, R Laugharne, N Shaw… - Journal of …, 2024 - Wiley Online Library
Background The study aims to understand system barriers to research participation for
people with intellectual disabilities. Methods A mixed‐methods approach examined the …

Methodological issues in inclusive intellectual disability research: A health promotion needs assessment of people attending Irish disability services

M Boland, L Daly, A Staines - Journal of Applied Research in …, 2008 - Wiley Online Library
Background This paper describes a novel combination of inclusive methods to evaluate
health and health promotion needs of service users (clients) with intellectual disability. Sixty …

“That felt like real engagement”: Fostering and maintaining inclusive research collaborations with individuals with intellectual disability

AE Schwartz, JM Kramer, ES Cohn… - Qualitative health …, 2020 - journals.sagepub.com
People with intellectual disability (ID) are increasingly involved in stakeholder-engaged
research, such as “inclusive research”(IR). To understand the processes that foster and …

Active involvement of people with intellectual disabilities in health research–A structured literature review

TK Frankena, J Naaldenberg, M Cardol… - Research in …, 2015 - Elsevier
Actively involving people with intellectual disabilities (ID) in health research, also known as
inclusive health research, is increasingly popular. Currently, insight into experiences of this …

Adults with intellectual disabilities and their carers as researchers and participants in a RCT

V Turk, G Leer, S Burchell, S Khattram… - Journal of Applied …, 2012 - Wiley Online Library
Background This article describes the process of including people with intellectual
disabilities (ID) and carers of people with ID as researchers and participants in randomised …

[HTML][HTML] Carer-led health interventions to monitor, promote and improve the health of adults with intellectual disabilities in the community: a systematic review

R Hithersay, A Strydom, G Moulster… - Research in …, 2014 - Elsevier
Using carers to help assess, monitor, or promote health in people with intellectual
disabilities (ID) may be one way of improving health outcomes in a population that …

Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement

KE McDonald, C Gibbons, N Conroy… - Journal of Applied …, 2022 - Wiley Online Library
Background Adults with intellectual disability experience disparities in social determinants of
health and health outcomes. While new knowledge can advance health equity, adults with …

Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial

N Lennox, R Ware, S Carrington, M O'Callaghan… - BMC Public Health, 2012 - Springer
Background Adolescents with intellectual disability often have poor health and healthcare.
This is partly as a consequence of poor communication and recall difficulties, and the …

Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research

K Brooker, K van Dooren, CH Tseng… - … in public health, 2015 - journals.sagepub.com
Aims: Adults with intellectual disability experience substantial health inequities. Public
health research aiming to improve the lives of this population group is needed. We sought to …