A consensus statement on how to conduct inclusive health research

Frankena, Tessa K.; Naaldenberg, Jenneken; Cardol, M.; Iriarte, Edurne García; Buchner, Tobias; Brooker, Katie; Embregts, P.J.C.M.; Joosa, E.; Crowther, Frank; Schormans, Ann Fudge; Schippers, A.; Walmsley, Jan; O’Brien, Patricia; Linehan, Christine; Northway, Ruth; Valk, H. van Schrojenstein Landman de; Leusink, Geraline L

doi:10.1111/jir.12486

Cited by 73 publications

(69 citation statements)

References 18 publications

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“…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.…”

Section: Methodsmentioning

confidence: 99%

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

Frankena

Naaldenberg

Tobi

et al. 2019

Research Intellect Disabil

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Background Inclusive research is studied mainly in short‐term collaborations between researchers with and without intellectual disabilities focusing on practicalities. Structural study of long‐term collaborations can provide insight into different roles of inclusive researchers, thereby contributing to a collective approach. Method Interviews with inclusive research team members (n = 3), colleagues (n = 8), and managers (n = 2) and three group discussions within the inclusive research team were held. Data were analysed following membership categorization analysis (MCA) adapted to the needs of the inclusive research team. Results This MCA provides insight into the complexity of inclusive research, reflected in the multitude of identified roles and activities. Analysis indicates that researchers with and without intellectual disabilities complement each other. Conclusions The activities identified in this study provide valuable information for discussing roles and responsibilities from the outset, so that dialogue starts at the core of inclusive research: the process between researchers with and without intellectual disabilities.

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Section: Methodsmentioning

confidence: 99%

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

Frankena

Naaldenberg

Tobi

et al. 2019

Research Intellect Disabil

Self Cite

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“…She felt it was important to identify if the responsibility would take place at the university or at the co‐researcher's house, as transportation is an important consideration for co‐researchers with disabilities (Nicolaidis et al, ; Northway et al, ). Importantly, the research position came with a competitive wage and reimbursement for transportation, two “benefits” acknowledged as critical to supporting researchers with disabilities (Frankena et al, ; Nicolaidis et al, ; Northway et al, ). Two of the five co‐researchers on the team were interested; both completed job interviews.…”

Section: How We Worked Togethermentioning

confidence: 99%

“Team is everything”: Reflections on trust, logistics and methodological choices in collaborative interviewing

Schwartz

Durkin

2020

Brit J Learn Disabil

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Accessible Summary• People with disabilities often do research. Sometimes, they work together with people with academic training. Sometimes, working together can be challenging.• A researcher with academic training and a co-researcher with a disability worked together to do interviews.• This paper is about how we worked together. We talk about how the co-researcher with a disability got hired, did ethics training and dealt with transportation and his schedule. We also talk about how we worked together to make sure it was easy for him to do the interviews.• This paper might help other research teams figure out how to do interviews together. AbstractBackground: People with disabilities are increasingly involved in research. Our understanding of how to support co-researchers with disabilities has grown since the 1990s. However, research teams have reported challenges in ensuring authentic collaboration. We report on the collaboration between an academic researcher and a co-researcher with a disability to conduct interviews with other co-researchers about their experiences in inclusive research. Methods:The academic researcher took fieldnotes throughout the research. Together, she and the co-researcher audio-recorded "debriefs" after each interview. The academic researcher reviewed all fieldnotes and transcribed "debriefs." Together, the academic researcher and co-researcher listened to and reflected on the audio-recorded debriefs. Results:In this reflective manuscript, we discuss the hiring process, ethics training, logistical challenges and tools we developed to support the co-researcher in his role.We also discuss challenges, including the academic researcher's difficulty eliciting critical feedback from the co-researcher. This manuscript includes both the voice of the academic researcher and the co-researcher. Conclusion:Our research process was supported by our prior relationship, accessible processes, and time for training and reflective practice. We call attention to the importance of establishing trust and methods to elicit critical feedback from co-researchers. We also discuss logistical challenges and the impact of methodological choices on research collaborations. K E Y W O R D S collaborative practice, empowerment issues, intellectual disability, learning (intellectual disabilities), research 116 |

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“…This study actively involved people with ID as co-researchers to deploy experiential and scientific knowledge and contribute to appropriate data collection, data quality, and relevant outcomes [45,46]. The inclusive research team consisted of researchers with ID (co-researchers) and without ID, all employed by the university, and followed Frankena's [46] guidelines in the consensus statement for inclusive health research. K.V.v.A., A.v.d.C., and H.J.…”

Section: Inclusive Approachmentioning

confidence: 99%

Improving Environmental Capacities for Health Promotion in Support Settings for People with Intellectual Disabilities: Inclusive Design of the DIHASID Tool

Anrooij

Hilgenkamp

Leusink

et al. 2020

IJERPH

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People with intellectual disabilities (ID) have unhealthier lifestyles than the general population. To sustainably improve their lifestyle and health status, a whole-system approach to creating healthy environments is crucial. To gain insight into how support for physical activity and healthy nutrition can be embedded in a setting, asset mapping can be helpful. Asset mapping involves creating a bottom–up overview of promoting and protective factors for health. However, there is no asset mapping tool available for ID support settings. This study aims to develop an asset mapping tool in collaboration with people with ID to gain insight into assets for healthy nutrition and physical activity in such settings. The tool is based on previous research and development continued in an iterative and inclusive process in order to create a clear, comprehensive, and usable tool. Expert interviews (n = 7), interviews with end-users (n = 7), and pilot testing (n = 16) were conducted to refine the tool. Pilot participants perceived the tool as helpful in pinpointing perceived assets and in prompting ideas on how to create inclusive environments with support for physical activity and healthy nutrition. This overview of assets can be helpful for mobilizing assets and building the health-promoting capacities of ID support settings.

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A consensus statement on how to conduct inclusive health research

Cited by 73 publications

References 18 publications

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

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

“Team is everything”: Reflections on trust, logistics and methodological choices in collaborative interviewing

Improving Environmental Capacities for Health Promotion in Support Settings for People with Intellectual Disabilities: Inclusive Design of the DIHASID Tool

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