Demystifying Research and Evidence-Based Practice for Consumers and Carers: Development and Evaluation of an Educational Package

Abstract

Increasingly, consumers and carers are involving themselves in many aspects and levels of mental health services. However, one area in which active involvement has been less prominent is research. This paper describes an educational initiative that sought to increase consumers' and carers' understanding of the way research is conducted and its role in evidence-based practice. Information regarding participants' attitudes towards research, knowledge about research practice and participation was also examined. The findings provide evidence that workshop attendance increases knowledge and encourages participation in future research projects, particularly when participants have confidence in the researcher.

Spreading the word: disseminating research results to patients and carers

“…Creatively engaging patients with mental illness, such as through information workshops (25), and seeking their input about priority research areas, can result in more positive and effective outcomes for all concerned. Through patient networks, information can be readily disseminated (20).…”

The challenge of optimising research participation: paying participants in mental health settings

“…Another option is to increase the value society places on participation, not in a monetary sense, but by seeing research participation as a community good or an altruistic act (1). Already, society expects people to assume some risk for the benefit of others (11) and the potential to help others can be an important motivator to encourage participation (29). In many countries, volunteering is valued, but research participation may not normally be understood in this way.…”

Qualitative Research: The Optimal Scholarly Means of Understanding the Patient Experience

“…As such, clear communication of all facets of the research process are essential at the outset of, and during the entire course of any research project, extending to dissemination (Cleary et al, 2008). With sufficient motivation and commitment, active consumer involvement research can have a range of benefits for everyone involved, and can potentially broaden perspectives at every stage of the research, to ensure important consumerfocused data is collected.…”

“…Involving consumers in the development and planning phases of research will help to ensure that the research itself is meaningful and relevant to contemporary concerns. Topics identified by consumers for further mental health research, several of which may not have been immediately apparent to non-consumers, were found in one study to include: illness prevention, treatment interventions and outcomes, relapse and recovery, stigma, the importance of hope, maintaining health and well-being, medication and side effects, support networks, consumer led support initiatives, and, everyday needs (e.g., accommodations, financial) (Cleary, Matheson, Walter, Malins, & Hunt, 2008).…”

“…Similarly, factors identified by consumers that influence their participation in research include: perceived benefits of the research; the research aim and method; time constraints; potential risks; confidentiality; their ability to respond to questions; and the characteristics of the researcher (Cleary et al, 2008). As such, clear communication of all facets of the research process are essential at the outset of, and during the entire course of any research project, extending to dissemination (Cleary et al, 2008).…”