Two Methods for Engaging with the Community in Setting Priorities for Child Health Research: Who Engages?

<div><p>Objective</p><p>The aims of this study were to assess participatory methods for obtaining community views on child health research.</p><p>Background</p><p>Community participation in research is recognised as an important part of the research process; however, there has been inconsistency in its implementation and application in Australia. The Western Australian Telethon Kids Institute Participation Program employs a range of methods for fostering active involvement of community members in its research. These include public discussion forums, called Community Conversations. While participation levels are good, the attendees represent only a sub-section of the Western Australian population. Therefore, we conducted a telephone survey of randomly selected households to evaluate its effectiveness in eliciting views from a broader cross-section of the community about our research agenda and community participation in research, and whether the participants would be representative of the general population. We also conducted two Conversations, comparing the survey as a recruitment tool and normal methods using the Participation Program.</p><p>Results</p><p>While the telephone survey was a good method for eliciting community views about research, there were marked differences in the profile of study participants compared to the general population (e.g. 78% vs 50% females). With a 26% response rate, the telephone survey was also more expensive than a Community Conversation. The cold calling approach proved an unsuccessful recruitment method, with only two out of a possible 816 telephone respondents attending a Conversation.</p><p>Conclusion</p><p>While the results showed that both of the methods produced useful input for our research program, we could not conclude that either method gained input that was representative of the entire community. The Conversations were relatively low-cost and provided more in-depth information about one subject, whereas the telephone survey provided information across a greater range of subjects, and allowed more quantitative analysis.</p></div

Who should have most say in determining research priorities, by whether respondent has experience of a serious health problem.

<p>Who should have most say in determining research priorities, by whether respondent has experience of a serious health problem.</p

Demographic characteristics of Community Conversation attendees, compared with WA Population.

<p>Demographic characteristics of Community Conversation attendees, compared with WA Population.</p

Most important research area.

<p>Respondents were asked to rate the importance of the <i>human capability expansion</i> research areas—early childhood education, language development, childhood obesity, children’s nutrition, and children’s mental health.</p

Involvement in community activities.

<p>Involvement in community activities.</p

Additional file 1: Appendix 1. of Imagery rescripting and eye movement desensitisation and reprocessing for treatment of adults with childhood trauma-related post-traumatic stress disorder: IREM study design

Mutual Agreement IREM Study. The mutual agreement endorsed by each of the participating sites outlining the roles and responsibilities of each university representative and site coordinator. The mutual agreement also includes the study timeline and planned publications. Appendix 2. World Health Organization Trial Registration Data Set. WHO Trial Registration Data Set completed to support SPIRIT Guidelines Checklist. Appendix 3. Consent form example. An example of the consent form that will be given to participants to read and sign to ensure informed consent. Appendix 4. Additional items added to the Impact of Events Scale Revised (IES-R). Four items that were added to the IES-R to assess trauma-related guilt, anger, disgust, and shame. Appendix 5. Additional items added to the Life Events Checklist (LEC-5). Additional items have been added to the LEC-5 to assess emotional abuse/neglect and physical neglect. (DOCX 136 kb