Setting up participatory research: a discussion of the initial stages

Abstract

Summary Participatory research is becoming a very popular way of helping to empower people with learning disabilities. All stages of this kind of research are conducted in partnership with non‐disabled researchers. Furthermore, the research agenda in learning disability is moving towards increasing participation in all forms of research. As a group undertaking participatory research, the present authors wish to share their experience of setting up a project over a period of 9 months to examine ‘keeping fit’. The authors include adults with learning disabilities, clinicians and a researcher from a primary care NHS trust, and support workers who work directly with the adults with learning disabilities in various community settings. An understanding of what is involved in participatory research is important as a first stage, and so the present authors invited speakers undertaking a similar project investigating direct payments to a one‐day conference that was set up locally. At the end of the conference, the present authors requested volunteers for the local project to investigate health. This approach enabled well‐informed agreement to participate. The present paper discusses the initial 9 months of the project, including a description of the volunteers and the major issues which all the participants learned during these early stages.

Exploring the value of service user involvement in data analysis: ‘Our interpretation is about what lies below the surface’

“…The decision to work with a small group of service users rather than to work collaboratively with all research participants was a methodological one. Such a methodological approach has been utilised in a variety of health and social care settings and to differing degrees over the last few years (Gray et al 2000;Burke et al 2003;Croft, Beresford, and Adshead 2005;Ross et al 2005;Rowe 2006;Wright et al 2006). …”

Involving Service Users with Intellectual Disability in Research: Experiences from the STOP Diabetes Study

“…Such groups allow adults with intellectual disability to take control of issues affecting their lives and are a useful resource for engaging service users in research (Rodgers, ). The benefits of groups in developing participation in intellectual disability research have been highlighted in a number of studies (Burke et al, ; Gilbert, ; Palmer & Paterson, ; Rodgers, ). For this study, the established group dynamic was valuable as service users were not intimidated to voice their own opinions and could refer to the group facilitator for help to express their views when needed.…”

Apoyando la participación real de las personas con discapacidad intelectual: una experiencia de investigación inclusiva sobre vida independiente

“…Para contribuir a la construcción del equipo de investigación, planificar y desarrollar acciones de formación sobre investigación dirigidas a los investigadores con discapacidad puede constituir una estrategia potente. La necesidad de formación en investigación es un tema reconocido tanto por investigadores sin discapacidad (Bigby y Frawley, 2010;Johnson, 2009;Pallisera y Puyalto, 2014;Puyalto et al, 2016;Strnadová et al, 2014;Walmsley, 2004;Walmsley y Johnson, 2003;Ward y Simons, 1998) como por las propias personas con discapacidad que han participado en investigaciones llevadas a cabo de forma inclusiva (Abell et al, 2007;Burke et al, 2003;Butler et al 2012;Flood et al, 2012;White y Morgan, 2012). Como plantean Nind et al (2015) la cuestión de la formación no es neutra, puesto que implica plantear cual es el objetivo de la formación: ¿se trata de facilitar el aprendizaje de competencias relacionadas con la investigación para que los investigadores con discapacidad puedan abordar tareas más complejas a lo largo del proceso?, ¿o bien contribuir a proporcionar a las personas con discapacidad un rol y un estatus socialmente valorado como colaboradores en procesos rigurosos de contribución a la creación de conocimiento?…”

“…Se sugiere también plantear suficientes actividades prácticas para aplicar los conocimientos (Abell et al, 2007;Flood et al, 2012) y utilizar materiales accesibles para los participantes (Flood et al, 2012;Burke et al, 2003;Salmon et al, 2014;Carey et al, 2014). Además, se recomienda incluir en la formación cuestiones éticas relacionadas con la investigación (Abell et al, 2007;Burke et al, 2003) y que los participantes puedan interactuar con grupos de personas con discapacidad que realizan investigaciones colaborativas para compartir experiencias (Flood et al, 2012). Johnson (2009), en el proyecto "No longer researching about us without us", insiste en las posibilidades del role playing y las prácticas de observación.…”