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      Designing eHealth interventions for children with complex care needs requires continuous stakeholder collaboration and co-creation

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          Abstract

          Objective

          Hospital-to-home (H2H) transitions challenge families of children with medical complexity (CMC) and healthcare professionals (HCP). This study aimed to gain deeper insights into the H2H transition process and to work towards eHealth interventions for its improvement, by applying an iterative methodology involving both CMC families and HCP as end-users.

          Methods

          For 20-weeks, the Dutch Transitional Care Unit consortium collaborated with the Amsterdam University of Applied Sciences, HCP, and CMC families. The agile SCREAM approach was used, merging Design Thinking methods into five iterative sprints to stimulate creativity, ideation, and design. Continuous communication allowed rapid adaptation to new information and the refinement of solutions for subsequent sprints.

          Results

          This iterative process revealed three domains of care – care coordination, social wellbeing, and emotional support – that were important to all stakeholders. These domains informed the development of our final prototype, ‘Our Care Team’, an application tailored to meet the H2H transition needs for CMC families and HCP.

          Conclusion

          Complex processes like the H2H transition for CMC families require adaptive interventions that empower all stakeholders in their respective roles, to promote transitional care that is anticipatory, rather than reactive.

          Innovation

          A collaborative methodology is needed, that optimizes existing resources and knowledge, fosters innovation through collaboration while using creative digital design principles. This way, we might be able to design eHealth solutions with end-users, not just for them.

          Highlights

          • Transitions are continuous processes that require adaptation and collaboration.

          • The needs and skills of families of medically complex children continuously evolve.

          • These needs center on care coordination, social wellbeing, and emotional support.

          • An eHealth intervention could incorporate these domains to provide tailored support.

          • eHealth application development benefits from collaborative co-creative processes.

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          Most cited references40

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          Snowball Sampling: A Purposeful Method of Sampling in Qualitative Research

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            Children with medical complexity: an emerging population for clinical and research initiatives.

            Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.
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              Towards a universal model of family centered care: a scoping review

              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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                Author and article information

                Contributors
                Journal
                PEC Innov
                PEC Innov
                PEC Innovation
                Elsevier
                2772-6282
                01 April 2024
                December 2024
                01 April 2024
                : 4
                : 100280
                Affiliations
                [a ]Amsterdam UMC, University of Amsterdam, Department of Pediatric Intensive Care, Meibergdreef 9, 1105 AZ Amsterdam, the Netherlands
                [b ]Amsterdam Reproduction & Development Research Institute, Amsterdam, the Netherlands
                [c ]On behalf of the Transitional Care Unit Consortium, the Netherlands
                [d ]University of Applied Sciences, Digital Society School, Theo Thijssen Huis, Wibautstraat 2, 1091 GM Amsterdam, the Netherlands
                [e ]Athena Institute, Vrije Universiteit Amsterdam, De Boelelaan 1085, 1081 HV Amsterdam, the Netherlands
                [f ]Department of Computer Science, University of British Columbia, BC Children's Hospital Research Institute, Vancouver, BC V5Z 4H4, Canada
                [g ]Amsterdam UMC, University of Amsterdam, Emma Center for Personalized Medicine, Departments of Pediatrics and Human Genetics, Amsterdam Gastro-Enterology Endocrinology and Metabolism, Meibergdreef 9, 1105 AZ Amsterdam, the Netherlands
                [h ]Amsterdam UMC, University of Amsterdam, Department of Rehabilitation, Amsterdam Movement Sciences, Meibergdreef 9, 1105 AZ Amsterdam, the Netherlands
                Author notes
                [* ]Corresponding author at: Department of Pediatric Intensive Care, Emma Children's Hospital, Amsterdam University Medical Centers, Meibergdreef 9, 1105 AZ Amsterdam, the Netherlands. l.vanderiet@ 123456amsterdamumc.nl
                [1]

                Dr. Mattijs W. Alsem has moved since the work described in this article was executed. His current affiliation address is: Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX Utrecht.

                Article
                S2772-6282(24)00028-1 100280
                10.1016/j.pecinn.2024.100280
                11002852
                38596601
                1a018280-635c-4ce2-9eba-91f3e38a595c
                © 2024 The Authors

                This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

                History
                : 20 November 2023
                : 25 March 2024
                : 27 March 2024
                Categories
                Articles from Special issue on Family Integrated Neonatal Care: Innovative developments in health promotion, education, and communication; Edited by Nanon H.M. Labrie, Nicole R. van Veenendaal and Anne A.M.W. van Kempen

                children with medical complexity,hospital-to-home transition,scream methodology,ehealth,digital health,design thinking,model development

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