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      “This can certainly work…”: stakeholder perspectives of the feasibility of a caregiver-led training program for caregivers of children with cerebral palsy in a rural setting in Malawi

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          Abstract

          Introduction

          Caregiver training is a key component of rehabilitation for children with complex lifelong disabilities such as cerebral palsy. However critical shortages of therapists in low- and middle-income countries like Malawi, reduce access to therapy. Introducing expert caregivers to assist with the provision of basic training on the condition for fellow caregivers offers a potential solution. However, there is a paucity of evidence regarding the implementation of such strategies in low-resource settings. The aim of this study was to explore perspectives of stakeholders regarding the feasibility of implementing a caregiver-led and delivered training program for caregivers of children with cerebral palsy in Malawi.

          Methods

          Over 5 days in January 2023, a caregiver-led training program, the “Malamulele Onward Carer-to-Carer Training Program,” was conducted in Blantyre, Malawi. A South African master trainer traveled to Malawi and delivered the program to potential stakeholders including caregivers of children with cerebral palsy; physiotherapists; and community-based organization representatives. Stakeholder perspectives regarding the acceptability, demand, practicality and adaptation of the program were obtained through a combination of focus group discussions, in-depth interviews, and daily field notes. Data from the focus group discussions and in-depth interviews were analyzed using thematic analysis.

          Results

          The caregiver-led training program was deemed acceptable despite two areas identified as potential areas of concern; that the expert caregivers may cross practice boundaries and that their fellow caregivers may look down upon them. A demand for this program was expressed because of perceived relative advantages and relevance to caregiver needs. Participants indicated that the intervention could be easily delivered using local materials, absorbed and supported by existing community structures.

          Conclusion

          A caregiver-led training program offers an innovative way of supporting caregivers of children with complex disabilities such as cerebral palsy in low-resource settings. The stakeholder engagement demonstrated the positive perspectives of all stakeholders. The areas for modification and adaptation highlighted by the stakeholders will be useful in strengthening the implementation of the program in Malawi.

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          Most cited references44

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          Demonstrating Rigor Using Thematic Analysis: A Hybrid Approach of Inductive and Deductive Coding and Theme Development

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            How we design feasibility studies.

            Public health is moving toward the goal of implementing evidence-based interventions. To accomplish this, there is a need to select, adapt, and evaluate intervention studies. Such selection relies, in part, on making judgments about the feasibility of possible interventions and determining whether comprehensive and multilevel evaluations are justified. There exist few published standards and guides to aid these judgments. This article describes the diverse types of feasibility studies conducted in the field of cancer prevention, using a group of recently funded grants from the National Cancer Institute. The grants were submitted in response to a request for applications proposing research to identify feasible interventions for increasing the utilization of the Cancer Information Service among underserved populations.
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              The updated Consolidated Framework for Implementation Research based on user feedback

              Background Many implementation efforts fail, even with highly developed plans for execution, because contextual factors can be powerful forces working against implementation in the real world. The Consolidated Framework for Implementation Research (CFIR) is one of the most commonly used determinant frameworks to assess these contextual factors; however, it has been over 10 years since publication and there is a need for updates. The purpose of this project was to elicit feedback from experienced CFIR users to inform updates to the framework. Methods User feedback was obtained from two sources: (1) a literature review with a systematic search; and (2) a survey of authors who used the CFIR in a published study. Data were combined across both sources and reviewed to identify themes; a consensus approach was used to finalize all CFIR updates. The VA Ann Arbor Healthcare System IRB declared this study exempt from the requirements of 38 CFR 16 based on category 2. Results The systematic search yielded 376 articles that contained the CFIR in the title and/or abstract and 334 unique authors with contact information; 59 articles included feedback on the CFIR. Forty percent (n = 134/334) of authors completed the survey. The CFIR received positive ratings on most framework sensibility items (e.g., applicability, usability), but respondents also provided recommendations for changes. Overall, updates to the CFIR include revisions to existing domains and constructs as well as the addition, removal, or relocation of constructs. These changes address important critiques of the CFIR, including better centering innovation recipients and adding determinants to equity in implementation. Conclusion The updates in the CFIR reflect feedback from a growing community of CFIR users. Although there are many updates, constructs can be mapped back to the original CFIR to ensure longitudinal consistency. We encourage users to continue critiquing the CFIR, facilitating the evolution of the framework as implementation science advances. Supplementary Information The online version contains supplementary material available at 10.1186/s13012-022-01245-0.
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                Author and article information

                Contributors
                URI : https://loop.frontiersin.org/people/2318288/overviewRole: Role: Role: Role: Role: Role: Role: Role:
                URI : https://loop.frontiersin.org/people/2723973/overviewRole: Role: Role: Role: Role: Role:
                Role: Role: Role: Role: Role: Role:
                Journal
                Front Public Health
                Front Public Health
                Front. Public Health
                Frontiers in Public Health
                Frontiers Media S.A.
                2296-2565
                03 July 2024
                2024
                : 12
                : 1390645
                Affiliations
                [1] 1Department of Rehabilitation Sciences, Kamuzu University of Health Sciences , Blantyre, Malawi
                [2] 2Division of Community Pediatrics, Department of Pediatrics and Child Health, Faculty of Health Sciences, University of Witwatersrand , Johannesburg, South Africa
                [3] 3Department of Physiotherapy, Faculty of Health Sciences, University of Witwatersrand , Johannesburg, South Africa
                [4] 4Children’s Institute, Department of Pediatrics and Child Health, Faculty of Health Sciences, University of Cape Town , Johannesburg, South Africa
                Author notes

                Edited by: Eric J. Moody, University of Wyoming, United States

                Reviewed by: Anna Purna Basu, Newcastle University, United Kingdom

                Cecilia Montiel Nava, The University of Texas Rio Grande Valley, United States

                *Correspondence: Takondwa Connis Bakuwa, tbakuwa@ 123456kuhes.ac.mw
                Article
                10.3389/fpubh.2024.1390645
                11256784
                39026596
                471cc16c-0f86-4ff9-8c1a-7af3255c5951
                Copyright © 2024 Bakuwa, Saloojee and Slemming.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 26 February 2024
                : 12 June 2024
                Page count
                Figures: 0, Tables: 4, Equations: 0, References: 47, Pages: 14, Words: 12047
                Funding
                The author(s) declare that financial support was received for the research, authorship, and/or publication of this article. TB is a fellow of the Consortium for Advanced Research Training in Africa (CARTA), which supported this research. CARTA is jointly led by the African Population and Health Research Center and the University of the Witwatersrand and funded by the Carnegie Corporation of New York (Grant No—G-19-57145), Sida (Grant No: 54100113), Uppsala Monitoring Centre and the DELTAS Africa Initiative (Grant No: 107768/Z/15/Z). The DELTAS Africa Initiative is an independent funding scheme of the African Academy of Sciences (AAS)’s Alliance for Accelerating Excellence in Science in Africa (AESA) and supported by the New Partnership for Africa’s Development Planning and Coordinating Agency (NEPAD Agency) with funding from the Wellcome Trust (UK) and the UK government. The statements made and views expressed are solely the responsibility of the Fellow.
                Categories
                Public Health
                Original Research
                Custom metadata
                Children and Health

                implementation,caregiver-led,training,program,cerebral palsy,feasibility,malawi

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