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      Towards a universal model of family centered care: a scoping review

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          Abstract

          Background

          Families play an important role meeting the care needs of individuals who require assistance due to illness and/or disability. Yet, without adequate support their own health and wellbeing can be compromised. The literature highlights the need for a move to family-centered care to improve the well-being of those with illness and/or disability and their family caregivers. The objective of this paper was to explore existing models of family-centered care to determine the key components of existing models and to identify gaps in the literature.

          Methods

          A scoping review guided by Arksey & O’Malley (2005) examined family-centered care models for diverse illness and age populations. We searched MEDLINE, PsycINFO, CINAHL and EMBASE for research published between 1990 to August 1, 2018. Articles describing the development of a family-centered model in any patient population and/or healthcare field or on the development and evaluation of a family-centered service delivery intervention were included.

          Results

          The search identified 14,393 papers of which 55 met our criteria and were included. Family-centered care models are most commonly available for pediatric patient populations ( n = 40). Across all family-centered care models, the consistent goal is to develop and implement patient care plans within the context of families. Key components to facilitate family-centered care include: 1) collaboration between family members and health care providers, 2) consideration of family contexts, 3) policies and procedures, and 4) patient, family, and health care professional education. Some of these aspects are universal and some of these are illness specific.

          Conclusions

          The review identified core aspects of family-centred care models (e.g., development of a care plan in the context of families) that can be applied to all populations and care contexts and some aspects that are illness specific (e.g., illness-specific education). This review identified areas in need of further research specifically related to the relationship between care plan decision making and privacy over medical records within models of family centred care. Few studies have evaluated the impact of the various models on patient, family, or health system outcomes. Findings can inform movement towards a universal model of family-centered care for all populations and care contexts.

          Electronic supplementary material

          The online version of this article (10.1186/s12913-019-4394-5) contains supplementary material, which is available to authorized users.

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          Most cited references72

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          Scoping studies: towards a methodological framework

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            Scoping studies: advancing the methodology

            Background Scoping studies are an increasingly popular approach to reviewing health research evidence. In 2005, Arksey and O'Malley published the first methodological framework for conducting scoping studies. While this framework provides an excellent foundation for scoping study methodology, further clarifying and enhancing this framework will help support the consistency with which authors undertake and report scoping studies and may encourage researchers and clinicians to engage in this process. Discussion We build upon our experiences conducting three scoping studies using the Arksey and O'Malley methodology to propose recommendations that clarify and enhance each stage of the framework. Recommendations include: clarifying and linking the purpose and research question (stage one); balancing feasibility with breadth and comprehensiveness of the scoping process (stage two); using an iterative team approach to selecting studies (stage three) and extracting data (stage four); incorporating a numerical summary and qualitative thematic analysis, reporting results, and considering the implications of study findings to policy, practice, or research (stage five); and incorporating consultation with stakeholders as a required knowledge translation component of scoping study methodology (stage six). Lastly, we propose additional considerations for scoping study methodology in order to support the advancement, application and relevance of scoping studies in health research. Summary Specific recommendations to clarify and enhance this methodology are outlined for each stage of the Arksey and O'Malley framework. Continued debate and development about scoping study methodology will help to maximize the usefulness and rigor of scoping study findings within healthcare research and practice.
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              Relatives of the Impaired Elderly: Correlates of Feelings of Burden

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                Author and article information

                Contributors
                k.kokorelias@mail.utoronto.ca
                mgignac@iwh.on.ca
                gnaglie@baycrest.org
                416-978-2041 , Jill.cameron@utoronto.ca
                Journal
                BMC Health Serv Res
                BMC Health Serv Res
                BMC Health Services Research
                BioMed Central (London )
                1472-6963
                13 August 2019
                13 August 2019
                2019
                : 19
                : 564
                Affiliations
                [1 ]ISNI 0000 0001 2157 2938, GRID grid.17063.33, Rehabilitation Sciences Institute, Faculty of Medicine, , University of Toronto, ; 500 University Avenue, Suite 160, Toronto, ON Canada
                [2 ]ISNI 0000 0001 2157 2938, GRID grid.17063.33, Dalla Lana School of Public Health, Institute for Work and Health, , University of Toronto, ; 481 University Avenue, Suite 800, Toronto, ON Canada
                [3 ]ISNI 0000 0001 2157 2938, GRID grid.17063.33, Department of Medicine and Institute of Health Policy, Management and Evaluation, , University of Toronto, ; 3560 Bathurst Street, Room 278, Kimel Family Building, Toronto, ON Canada
                [4 ]Department of Medicine, and Affiliated Scientist, Rotman Research Institute, Baycrest Health Sciences, 3560 Bathurst Street, Room 278, Kimel Family Building, Toronto, ON Canada
                [5 ]ISNI 0000 0001 2157 2938, GRID grid.17063.33, Department of Occupational Science and Occupational Therapy, Rehabilitation Sciences Institute, Faculty of Medicine, , University of Toronto, ; 500 University Avenue, Suite 160, Toronto, ON Canada
                Author information
                http://orcid.org/0000-0003-4161-1572
                Article
                4394
                10.1186/s12913-019-4394-5
                6693264
                31409347
                85aa5939-5eef-4166-8ca5-ae2356b68d96
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 14 February 2019
                : 1 August 2019
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2019

                Health & Social care
                caregivers,family centered care,family caregiving,patient-care,patient education,scoping review

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