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      Children With Medical Complexity in the Canadian Maritimes: Protocol for a Mixed Methods Study

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          Abstract

          Background

          Ongoing developments in the medical field have improved survival rates and long-term management of children with complex chronic health conditions. While the number of children with medical complexity is small, they use a significant amount of health resources across various health settings and sectors. Research to date exploring this pediatric population has relied primarily on quantitative or qualitative data alone, leaving significant gaps in our understanding of this population.

          Objective

          The objective of this research is to use health administrative and family-reported data to gain an in-depth understanding of patterns of health resource use and health care needs of children with medical complexity and their families in the Canadian Maritimes.

          Methods

          An explanatory sequential mixed methods design will be used to achieve our research objective. Phase 1 of this research will leverage the use of health administrative data to examine the prevalence and health service use of children with medical complexity. Phase 2 will use case study methods to collect multiple sources of family-reported data to generate a greater understanding of their experiences, health resource use, and health care needs. Two cases will be developed in each of the 3 provinces. Cases will be developed through semistructured interviews with families and their health care providers and health resource journaling. Findings will be triangulated from phase 1 and 2 using a joint display table to visually depict the convergence and divergence between the quantitative and qualitative findings. This triangulation will result in a comprehensive and in-depth understanding into the population of children with medical complexity.

          Results

          This study will be completed in May 2022. Findings from each phase of the research and integration of the two will be reported in full in 2022.

          Conclusions

          There is a current disconnect between the Canadian health care system and the needs of children with medical complexity and their families. By combining health administrative and family-reported data, this study will unveil critical information about children with medical complexity and their families to more efficiently and effectively meet their health care needs. Results from this research will be the first step in designing patient-oriented health policies and programs to improve the health care experiences, health system use, and health outcomes of children with medical complexity and their families.

          International Registered Report Identifier (IRRID)

          DERR1-10.2196/33426

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          Most cited references30

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          The behaviour change wheel: A new method for characterising and designing behaviour change interventions

          Background Improving the design and implementation of evidence-based practice depends on successful behaviour change interventions. This requires an appropriate method for characterising interventions and linking them to an analysis of the targeted behaviour. There exists a plethora of frameworks of behaviour change interventions, but it is not clear how well they serve this purpose. This paper evaluates these frameworks, and develops and evaluates a new framework aimed at overcoming their limitations. Methods A systematic search of electronic databases and consultation with behaviour change experts were used to identify frameworks of behaviour change interventions. These were evaluated according to three criteria: comprehensiveness, coherence, and a clear link to an overarching model of behaviour. A new framework was developed to meet these criteria. The reliability with which it could be applied was examined in two domains of behaviour change: tobacco control and obesity. Results Nineteen frameworks were identified covering nine intervention functions and seven policy categories that could enable those interventions. None of the frameworks reviewed covered the full range of intervention functions or policies, and only a minority met the criteria of coherence or linkage to a model of behaviour. At the centre of a proposed new framework is a 'behaviour system' involving three essential conditions: capability, opportunity, and motivation (what we term the 'COM-B system'). This forms the hub of a 'behaviour change wheel' (BCW) around which are positioned the nine intervention functions aimed at addressing deficits in one or more of these conditions; around this are placed seven categories of policy that could enable those interventions to occur. The BCW was used reliably to characterise interventions within the English Department of Health's 2010 tobacco control strategy and the National Institute of Health and Clinical Excellence's guidance on reducing obesity. Conclusions Interventions and policies to change behaviour can be usefully characterised by means of a BCW comprising: a 'behaviour system' at the hub, encircled by intervention functions and then by policy categories. Research is needed to establish how far the BCW can lead to more efficient design of effective interventions.
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            Designing and conducting mixed methods research

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              The case study approach

              The case study approach allows in-depth, multi-faceted explorations of complex issues in their real-life settings. The value of the case study approach is well recognised in the fields of business, law and policy, but somewhat less so in health services research. Based on our experiences of conducting several health-related case studies, we reflect on the different types of case study design, the specific research questions this approach can help answer, the data sources that tend to be used, and the particular advantages and disadvantages of employing this methodological approach. The paper concludes with key pointers to aid those designing and appraising proposals for conducting case study research, and a checklist to help readers assess the quality of case study reports.
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                Author and article information

                Contributors
                Journal
                JMIR Res Protoc
                JMIR Res Protoc
                ResProt
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                1929-0748
                April 2022
                6 April 2022
                : 11
                : 4
                : e33426
                Affiliations
                [1 ] School of Nursing Faculty of Health Dalhousie University Halifax, NS Canada
                [2 ] Strengthening Transitions in Care Izaac Walton Killam Health Centre Halifax, NS Canada
                [3 ] Department of Applied Human Sciences University of Prince Edward Island Charlottetown, PE Canada
                [4 ] Department of Community Health and Epidemiology Dalhousie University Halifax, NS Canada
                Author notes
                Corresponding Author: Sydney Breneol s.breneol@ 123456dal.ca
                Author information
                https://orcid.org/0000-0001-6709-2577
                https://orcid.org/0000-0001-9977-0467
                https://orcid.org/0000-0002-0204-6278
                https://orcid.org/0000-0002-4167-4613
                https://orcid.org/0000-0001-6299-7967
                https://orcid.org/0000-0003-4554-7635
                https://orcid.org/0000-0003-4736-949X
                Article
                v11i4e33426
                10.2196/33426
                9021950
                35383571
                c1230718-1f9b-45ae-8a97-7d09a5d41da6
                ©Sydney Breneol, Janet A Curran, Marilyn Macdonald, William Montelpare, Samuel A Stewart, Ruth Martin-Misener, Jocelyn Vine. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 06.04.2022.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on https://www.researchprotocols.org, as well as this copyright and license information must be included.

                History
                : 7 September 2021
                : 20 January 2022
                : 22 February 2022
                : 25 February 2022
                Categories
                Protocol
                Protocol

                pediatrics,complex care,health data,mixed methods,children,qualitative,health administration,health care resources,health resources

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