Sharing the focus: engaging with support workers to include people with communication needs in research

Abstract

Accessible summary• This article is about university researchers and support workers working together when people with disabilities need support with communication to take part in research. This is one way to help people with disabilities to do this.• We talk about a project we did to help explain six different ways of working together to help people with disabilities have more of a say in research.• We found that if the person has a trusting relationship with the worker, the worker can help them understand the research, help them to tell the researcher what they think about the research and remind them about what they know is important to them.• Sometimes problems can happen and people do not get good support from their workers. It is the job of the researchers to make sure that people with disabilities still have a say in the research.

Impact of organisational practices on the relationships between young people with disabilities and paid social support workers

“…Previous research shows that when support relationships are grounded in reciprocity and mutual care and respect, they can be transformative for positive personal identity and social connectedness of people receiving support; and can promote job satisfaction and fulfilment for support workers (Lutz, Fisher & Robinson, 2015). As disability policies shift, the capacity for young people with disabilities and support workers to develop mutually positive relationships is increasingly important to ensure young people maximise opportunities that may arise with increased funding, flexibility and choice.…”

Strategies to Promote the Inclusion of Young Adults With Developmental Disabilities in Community-Based Health Studies

“…Efforts to employ inclusive research include critical perspectives that challenge “traditional notions of normative participation” (Ashby, 2011, p. 1), and accessible research design (Morrisey, 2012; Rios, Magasi, Novak, & Harniss, 2016) and strategies to promote the participation of persons with disabilities in project design, planning, and data collection (Buettgen et al, 2012; Duckett & Fryer, 1998). Such efforts are seen in the following research initiatives related to persons with disabilities’ experiences of research inclusion (Bigby, Frawley, & Ramcharan, 2014b; Kitchin, 2000): power relations in designing and conducting research (Fitzgerald, Jobling, & Kirk, 2003; Gustafson & Brunger, 2014); social exclusion (Hill, Davis, Prout, & Tisdall, 2004; Morris, 2001); methodological considerations (Atkinson, 2004; Smith-Chandler & Swart, 2014); ethical considerations (Cameron & Murphy, 2007; Morrisey, 2012); analysis of the relevance of partnerships with the disability community (Mulcahy, 2012), and on the broad issue of participation vis-à-vis collaboration in contexts of policy, practice, and research (Hall et al, 2017; Hill et al, 2004; Lutz, Fisher, & Robinson, 2016); and specific toolkits to better accommodate persons with disabilities in research have been proposed (Kidney & McDonald, 2014; Teachman & Gibson, 2013). Although it is beyond the aim of this article to discuss the contributions of these studies, it is important to recognize their efforts, and to learn from their challenges and failures, so we can move forward in our common goal to achieve inclusion of the persons with disabilities into the planning, design, implementation, and knowledge translation of research.…”

“…In the case mentioned above, the role of the SP was very important in establishing a positive interaction between the interviewer and the YADD (Hall et al, 2017). Research shows that strong trusting relationships with SPs have been beneficial in helping individuals with disabilities to participate and “have more of a say in research” (Lutz et al, 2016). As this field note explains, YADD chose to do the interview in the location where she felt more comfortable, along with people she trusted.…”

Safety and harm in school: promoting the perspectives of students with intellectual disability

“…In addition, the research team took great care to ensure that we minimised the chances of causing distress to children and young people and their families in discussing such a sensitive topic. Adapted information and consent materials were used with young people to maximise their capacity to consent, and ensure those who needed scaffolded consent by parents assented to participation (Lutz, Fisher, and Robinson, ; Sloper and Beresford, ). Taking a focus on safety rather than abuse supported most students and family members to talk about harm only to a degree they were comfortable with.…”