[Research Matters Downloads Torrent
Addison Mauldin
CEC-DR has launched an initiative to collect stories about how research in special education and related fields is making a difference for exceptional children, people with disabilities, and their families. We are calling this initiative "Research Matters" and envision a series of one or two page stories designed to be used in an array of advocacy efforts, particularly in communicating with policymakers and other stakeholders about the problems that special education researchers are addressing, especially research that is funded with federal dollars.
We encourage DR members to submit their own research 'stories' so that DR can share them with members and with stakeholders who want to know how research in special education matters and why federal funding for research is vital. Read below to learn how to submit your own research stories.
We invite you to submit a story about your own work. Here's a template you can use. For dissemination purposes, we may make slight modifications in your submission. The idea is to provide a brief, clear statement of the problem at hand and how it is being addressed through research, and include a bit of the human side of your work (e.g., testimonials from the people the work is intended to benefit). We plan to use these one- to two-page stories in our advocacy efforts (e.g., when visiting Capitol Hill as part of the Legislative Summit in July), on CEC and DR's websites, and other dissemination means.
Victoria J. VanUitert, University of Virginia
Michael K. Kennedy, University of Virginia
Katherine N. Peeples, Illinois State University
John Elwood Romig, University of Texas at Arlington
The research priorities differ substantially by diabetes type and for family members. These findings should inform funding bodies and researchers, to align future research and its communication with community needs.
In a rigorous consultation process, Australians with diabetes or family members raised and prioritised research topics they considered important for a better life with diabetes. The priorities covered a broad range of topics and differed according to the type of diabetes or for families.
People with diabetes and family members or carers can make a significant contribution to identify and prioritise relevant research topics, as well as how the research is conducted [17, 18]. Their involvement may lead to a more appropriate allocation of limited research funding, enhanced research engagement and participant retention, as well as the development, implementation and uptake of more relevant, effective and acceptable interventions. A review exploring the benefits of CCI in diabetes research found that the lived experiences of people with diabetes were instrumental in developing and conducting relevant and accessible interventions for diabetes self-management [17]. Shared ownership (i.e. reciprocal relationships between researchers, people with diabetes and the wider community) was associated with high retention and stakeholder engagement.
While several diabetes research priority-setting activities have been undertaken to date, and outcomes published, the level of CCI is variable [19,20,21,22,23,24,25]. In the UK, the James Lind Alliance (JLA) has established the research priorities of people with T1D [20], T2D [23] and women experiencing diabetes (T1D, T2D or GDM) during pregnancy [19]. These studies have drawn on large samples of the community with lived experience as well as carers to inform and prioritise research questions, in addition to inviting clinician input and agreement, and the validation of priorities against the existing literature. Identified priorities (across cohorts) relate to the prevention and successful management of diabetes (including treatments and technologies), prevention of complications and the role of emotional well-being. These stakeholder initiatives have informed the Diabetes UK research strategy, including dedicated research funding calls [26]. However, findings from consultations in the UK cannot be assumed to be relevant to the Australian (nor other international) contexts owing, for example, to differences in the healthcare systems, access to and subsidies for treatments, diversity in population ethnicities and underserved groups. In Australia, limited prioritisation of diabetes research questions has been conducted. For example, one study established a list of the top ten research questions to improve diabetes-related foot health utilising a Delphi method inviting both community and clinician perspectives [25]. Thus, there remains a need for a comprehensive view of community perspectives on diabetes research priorities. Further, it is likely that priority research questions differ between clinicians and those with lived experience [24], and a greater focus on CCI in the elicitation of research priorities, without required agreement with clinicians or other stakeholders, is warranted.
Thus, to shape the Australian diabetes research agenda for the next decade, it is crucial to engage people living with diabetes and their family members to identify salient and applied research questions. Understanding what matters to Australians with diabetes has the potential to influence recommendations for future impactful research to address unmet needs. Through stakeholder consultations with adults with diabetes and family members, we aimed to identify research priorities they consider important for improving the health and quality of life of Australians with diabetes.
We used an iterative three-step survey process to: (1) qualitatively generate research topics (long list); (2) determine important research questions (short list); and (3) rank research questions in order of importance (priorities). Surveys took place between November 2021 and July 2022 (Fig. 1). The study design was informed by a review of existing diabetes research priority-setting publications [19,20,21,22,23,24,25], and methods to achieve to a priority-setting consensus [27]. Consistent with the JLA method [28], the current study involved establishing a steering group, generating a long list of research questions, summarisation of questions into a short list and the identification of priority questions for publication. However, the study-specific approach employed, which responds to the aims of the study and project resourcing, differs from JLA in several notable ways: (1) participants are limited to those with lived experience of diabetes or family members. Unlike the JLA approach, we did not aim to achieve agreement in priorities between the community and health professionals or any other stakeholders; (2) community priorities were not informed by, nor validated against, gaps in the existing literature; and (3) the generation and prioritisation of research questions was conducted entirely via an online survey, without further workshops or discussion with participants. The research received ethics approval from the Deakin University Human Research Ethics Committee (2021-268).
Analysis: An inductive analysis was undertaken in QSR NVivo 12 employing a thematic template approach [30]. Based on the first 100 responses, SRG developed the initial coding framework and reviewed and refined it together with CH and EHT (all with expertise in qualitative analysis). Through a consensus, the framework was finalised and applied independently to all responses by SRG, and double coded by CH or EHT. Identified topics were the basis to formulate research topics/questions, with direct quotes used where possible. Content and phrasing were reviewed and agreed by the steering group and researchers.
Participants providing an e-mail address in Survey 1 were invited to complete Survey 2, in which the long list of identified research questions was presented. They were asked to select up to ten questions most important to them. Respondents could add additional questions in an open-text field. Participants were provided the opportunity to view their short-listed questions prior to submission and were prompted to consider refining should they have selected more than ten questions. However, survey logic did not allow for forced selection of ten questions and participants who selected (or qualitatively reported) fewer or greater than ten questions were maintained.
Analysis: Descriptive statistics were calculated for the whole group and by cohort (i.e. T1D, T2D, GDM, less common diabetes types, FM). The ten questions (or more in the case of equal percentages) with the highest proportion of participants indicating these questions as important were included in the short list presented in Survey 3. Free-text responses were considered against existing research questions to identify where they overlap or present unique suggestions. Where overlapping, the Survey 1-generated research question was selected for that participant (if not already done, and regardless of the number of original selected items). Unique questions were added to the long list of questions generated but not taken forward in Survey 3.
Participants were invited to rank the short list of approximately ten research questions in descending order of importance to them. Prior to Survey 3, minor textual refinements were made to some questions presented to improve readability (see Table 3 and the ESM) and consideration was given to the merging of research questions where repetition occurred within the top approximately ten lists (i.e. multiple highly endorsed items within a single research topic on conceptually related questions).
Through a rigorous and iterative research design, involving guidance from a community steering group, this study identified the research priorities of adults living with (all types of) diabetes and their FM in Australia. This study generated 127 unique research questions (125 from Survey 1, plus two further identified in Survey 2), covering 25 broad research topic areas, considered important by the community for a better life with diabetes. The volume of research questions and topics identified (all prioritised by at least one participant in Survey 2), as well as the relatively small observed differences in rankings (weighted scores in Survey 3) suggest diverse research interests and unmet needs. Taken together, these findings indicate that people living with or affected by diabetes in Australia believe that better health and quality of life could be achieved through research designed to reduce the everyday burden of living with diabetes. Substantial divergence in the prioritised research questions of adults with T1D, T2D and GDM, and their FM, supports the need for cohort-specific research agendas (with exceptions discussed below).
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