Contributing to Inclusive Research Policy and Practice: A Synthesis of Four Inclusive (Health) Research Projects

Abstract

The active involvement of people with intellectual disabilities (ID) in research is expected to lead to relevant research outcomes, increased quality of life, improved healthcare, reduction of health inequities, and empowerment of people with ID. Despite the developments in inclusive health research, a lack of transparency remains with regard to how the partnership between researchers with and without ID is shaped and structural study of inclusive health research is needed. This study aims to gain insight into the experiences of inclusive research teams in practice regarding (1) reasons, (2) attributes, and (3) outcomes of inclusive health research. A structural study of four inclusive research teams was conducted in Ireland, Northern Ireland, and the Netherlands using case study methodology. Data were triangulated through documents and individual and group interviews. Data were analyzed and synthesized using domain and taxonomic analysis. Reasons for conducting inclusive research ranged from personal to practical. Having an inclusive ethos was found to be crucial in conducting inclusive research meaningfully in practice. Based on data analysis, attributes of inclusive research consist of three interrelated themes, one focusing on methodological aspects and two focusing on active involvement and partnerships. Outcomes of inclusive research across cases were found within three categories relating to research practice, inclusion itself, and interpersonal outcomes. Empowerment was found to be important. Although empowerment is not new to inclusive research, its positive effect on research quality appears to be new and needs further research. This study's results and the literature indicate that developing inclusive research policy and practice requires a realistic perspective, with a balance between maximum collaboration and using researchers' strengths. The results of this study are transferrable to inclusive research using similar methods with other groups. When the aim is to share learning in groups, a shared language is needed.

A consensus statement on how to conduct inclusive health research

“…As stated in the introduction, this consensus statement specifically addresses four topics of inclusive health research based on scientific knowledge and expert experience. Previous to this consensus statement, a structured literature review (Frankena et al, ), a Delphi study (Frankena et al, ) and an international multiple case study (Frankena et al, submitted) on inclusive health research were conducted. Outcomes from these studies and the knowledge of experts were combined in this consensus statement, leading to the topics: (1) attributes; (2) potential outcomes; (3) reporting and publishing; and (4) future research directions.…”

Inclusive Research: Doing Participatory and Emancipatory Research with People with Intellectual Disabilities

“…There are also other projectsincluding some referred to above as well as others such as the one reported on by Mooney, Rafique and Tilly (2019)in which the persons with intellectual disability involved were both coresearchers and the research participants themselves. In other projects, the research participants were not the researchers with intellectual disability and they were involved in different waysfor example, meetings with self-advocacy groups (Williams, 1999), interviews (Frankena et al 2019), and focus groups (Callus et al, 2019). The input of persons with intellectual disability and other researchers in these studies varies.…”

“…Taylor et al (2007) present the results of research carried out with service-users with intellectual disability in the UK. Frankena et al (2019) synthesize the results of inclusive health research projects carried out in Ireland, Northern Ireland, and The Netherlands. Vega-Córdova et al (2020) report on an inclusive research project on "the cognitive accessibility of public spaces and services in a Chilean city" (p. 318).…”

A membership categorization analysis of roles, activities and relationships in inclusive research conducted by co‐researchers with intellectual disabilities

“…The long‐term inclusive partnership took place between April 2014 and April 2018. During this collaboration, we worked on a structured interview survey (Frankena, Naaldenberg, Bekkema et al, ), a Delphi study (Frankena et al, ), a case study (Frankena, Naaldenberg, Cardol, vanderCruijsen et al, revisions submitted), a consensus statement (Frankena, Naaldenberg, Cardol, Garcia‐Iriarte et al, ) and the study described in this paper. Tessa, Henk and Anneke worked together every Wednesday between 10.00 and 14.00 hr.…”