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      Improving nutritional status of children with Cerebral palsy: a qualitative study of caregiver experiences and community‐based training in Ghana

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          Abstract

          Background

          Cerebral palsy (CP) is the most common childhood disability worldwide, and evidence shows that children with CP are at an increased risk of malnutrition due to feeding difficulties. This qualitative study explores caregiver experiences of feeding before and after a community‐based training program in Ghana.

          Methods

          Thirteen caregivers of children with CP, who were severely undernourished, were interviewed at the start of the training program. Eleven of these were interviewed again after a year of monthly group trainings and home visits, which included guidance on feeding. Four additional caregivers were interviewed at end line. Interviews explored caregivers’ mealtime experiences, as well as a 24‐hr dietary recall and a structured feeding observation checklist. Children's nutritional status was assessed by anthropometry.

          Results

          Caregivers found mealtimes stressful due to time demands, messiness, and the pressure of providing enough quality food. They felt that the training program had helped reduced this stress and dietary recall data suggested some improved dietary quality. However, there was neither improvement nor deterioration in anthropometric status of the children.

          Conclusion

          Group trainings were welcomed by caregivers and notably reduced stress around feeding times. However, future work is needed in order to improve anthropometric outcomes, including, but not limited to, greater focus on nutritional requirements during caregiver training interventions. Therapeutic feeding programs must also be better utilized and need to be better equipped to care for this group of children, including deviating from standard admission and treatment protocols.

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          Most cited references16

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          Management of severe acute malnutrition in children.

          Severe acute malnutrition (SAM) is defined as a weight-for-height measurement of 70% or less below the median, or three SD or more below the mean National Centre for Health Statistics reference values, the presence of bilateral pitting oedema of nutritional origin, or a mid-upper-arm circumference of less than 110 mm in children age 1-5 years. 13 million children under age 5 years have SAM, and the disorder is associated with 1 million to 2 million preventable child deaths each year. Despite this global importance, child-survival programmes have ignored SAM, and WHO does not recognise the term "acute malnutrition". Inpatient treatment is resource intensive and requires many skilled and motivated staff. Where SAM is common, the number of cases exceeds available inpatient capacity, which limits the effect of treatment; case-fatality rates are 20-30% and coverage is commonly under 10%. Programmes of community-based therapeutic care substantially reduce case-fatality rates and increase coverage rates. These programmes use new, ready-to-use, therapeutic foods and are designed to increase access to services, reduce opportunity costs, encourage early presentation and compliance, and thereby increase coverage and recovery rates. In community-based therapeutic care, all patients with SAM without complications are treated as outpatients. This approach promises to be a successful and cost-effective treatment strategy.
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            Development of the Gross Motor Function Classification System for cerebral palsy.

            The Gross Motor Function Classification System (GMFCS) for cerebral palsy has been widely used internationally for clinical, research, and administrative purposes. This paper recounts the ideas and work behind the creation of the GMFCS, reports on the lessons learned, and identifies some philosophical challenges inherent in trying to develop an ordered, valid, and consistent system to describe function in children and adolescents with developmental differences. It is hoped that these ideas will be useful to others who choose to expand the field with additional systems in other areas of childhood neurodisability.
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              The 'F-words' in childhood disability: I swear this is how we should think!

              The 21st century is witnessing a sea change in our thinking about 'disability'. Nowhere are these developments more apparent than in the field of childhood disability, where traditional biomedical concepts are being incorporated into--but expanded considerably by--new ways of formulating ideas about children, child development, social-ecological forces in the lives of children with chronic conditions and their families, and 'points of entry' for professionals to be helpful. In this paper, we have tried to package a set of ideas, grounded in the World Health Organization's International Classification of Functioning, Disability and Health (the ICF), into a series of what we have called 'F-words' in child neurodisability--function, family, fitness, fun, friends and future. We hope this will be an appealing way for people to incorporate these concepts into every aspect of clinical service, research and advocacy regarding disabled children and their families.
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                Author and article information

                Contributors
                natasha.lelijveld.11@ucl.ac.uk
                Journal
                Food Sci Nutr
                Food Sci Nutr
                10.1002/(ISSN)2048-7177
                FSN3
                Food Science & Nutrition
                John Wiley and Sons Inc. (Hoboken )
                2048-7177
                15 November 2018
                January 2019
                : 7
                : 1 ( doiID: 10.1002/fsn3.2019.7.issue-1 )
                : 35-43
                Affiliations
                [ 1 ] International Centre for Evidence in Disability London School of Hygiene and Tropical Medicine London UK
                [ 2 ] Rabito Health Services Tema Ghana
                [ 3 ] Department of Population Health London School of Hygiene and Tropical Medicine London UK
                [ 4 ] No Wasted Lives Action Against Hunger UK
                [ 5 ] Independent Consultant in Disability and International Development
                [ 6 ] CBM International Bensheim Germany
                [ 7 ] School of Biomedical and Allied Health Sciences College of Health Sciences University of Ghana Accra Ghana
                [ 8 ] MARCH Centre Faculty EPH London School of Hygiene and Tropical Medicine London UK
                Author notes
                [*] [* ] Correspondence

                Natasha Lelijveld, Department of Population Health, London School of Hygiene and Tropical Medicine, London, UK.

                Email: natasha.lelijveld.11@ 123456ucl.ac.uk

                Author information
                http://orcid.org/0000-0002-8452-0198
                Article
                FSN3788
                10.1002/fsn3.788
                6341142
                30680157
                2a7a2942-e1c8-4f1d-b915-605903d2d578
                © 2018 The Authors. Food Science & Nutrition published by Wiley Periodicals, Inc.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 02 March 2018
                : 24 July 2018
                : 26 July 2018
                Page count
                Figures: 0, Tables: 3, Pages: 9, Words: 7044
                Funding
                Funded by: CBM
                Categories
                Original Research
                Original Research
                Custom metadata
                2.0
                fsn3788
                January 2019
                Converter:WILEY_ML3GV2_TO_NLMPMC version:5.5.6 mode:remove_FC converted:22.01.2019

                cerebral palsy,disability,feeding,ghana,malnutrition
                cerebral palsy, disability, feeding, ghana, malnutrition

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