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      A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers

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          Abstract

          Background

          Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing.

          Methods

          A qualitative longitudinal study was conducted to investigate the impact of a training programme, “getting to know cerebral palsy,” with caregivers on their wellbeing. Eighteen caregivers, from four districts, were interviewed up to three times over 14 months, to assess impact and the reasons for any changes.

          Results

          Low levels of knowledge, high levels of stigma, physical and emotional exhaustion, and often difficult family relationships with social exclusion of the child and caregiver were common themes at the outset. Caregivers struggled to combine their caring and economic activities. This was exacerbated by the common absence of the father. Two months after completion of the training, their reported wellbeing had improved. The reasons for this were an improved understanding about their child's condition, positive attitudinal change towards their child, feelings of hope, and through the group support, a profound realisation that they are “not on their own.” While relationships within the family remained complex in many cases, the support group offered an important and alternative social support network.

          Conclusions

          This study illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy. Any future programme needs to also address more structural issues, including stigma and discrimination, and strengthen approaches to family engagement.

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          Most cited references41

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          Measuring health-related stigma--a literature review.

          Stigma related to chronic health conditions such as HIV/AIDS, leprosy, tuberculosis, mental illness and epilepsy is a global phenomenon with a severe impact on individuals and their families, and on the effectiveness of public health programmes. To compare stigma measurement in different disciplines, a literature review was conducted. References were obtained through a search of literature databases and through examining relevant bibliographies. Sixty-three papers were selected that addressed the issue of measurement of stigma or related constructs and that contained a sample of the instrument or items used. Five unpublished studies were also included in the review. The aspects of health-related stigma used for assessment can be grouped in five categories. First, the experience of actual discrimination and/or participation restrictions on the part of the person affected; second, attitudes towards the people affected; third, perceived or felt stigma; fourth, self or internalized stigma; and fifth, discriminatory and stigmatizing practices in (health) services, legislation, media and educational materials. Within each of these areas, different research methods have been used, including questionnaires, qualitative methods, indicators and scales. The characteristics of the instruments considered most promising are described and compared. The purpose of stigma assessment is to increase our understanding of stigma and its determinants and dynamics, to determine its extent or severity in a given setting or target group and to monitor changes in stigma over time. The conclusions from this review are that (a) the consequences of stigma are remarkably similar in different health conditions, cultures and public health programmes; (b) many instruments have been developed to assess the intensity and qualities of stigma, but often these have been condition-specific; and (c) development of generic instruments to assess health-related stigma may be possible. To achieve this aim, existing instruments should be further validated, developed or adapted for generic use, where possible.
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            On subjective well-being and quality of life.

            We integrate the multi-disciplinary fields of quality of life (QoL) and well-being (WB) and appraise the impacts of health factors. Theoretical and methodological limitations are discussed and new conceptual and technical advances identified, These are informed by cross-cultural and community perspectives. Following a definitional review, social inequalities, and links with happiness are examined. Demographic, experiential and personal factors are outlined. Implications for poverty research are addressed. As the concept of SWB recently converged with the longstanding international QoL definition (WHOQOL Group, 1995), we discuss the separate need for SWB. Future collaborative conceptual and pragmatic research is recommended.
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              Using qualitative methods to elicit young people's perspectives on their environments: some ideas for community health initiatives.

              N Morrow (2001)
              This paper describes qualitative methods used in a research project for the former Health Education Authority, exploring Putnam's concept of 'social capital' in relation to children and young people's well-being and health. Putnam's conceptualization of social capital consists of the following features: trust, reciprocal support, civic engagement, community identity and social networks, and the premise is that levels of social capital in a community have an important effect on people's well-being. Research was carried out with 102 children aged between 12 and 15 in two relatively deprived parts of a town in southeast England. The paper describes the research setting, methods, consent process and ethical issues that arose. It explores how the methods generated different forms of interconnected data, giving rise to a number of health/well-being-related themes. The paper concludes that using a range of methods, including visual methods, has helped to explore quality of life issues for children that are usually neglected in studies of young people's health-related behaviours.
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                Author and article information

                Contributors
                maria.zuurmond@lshtm.ac.uk
                Journal
                Child Care Health Dev
                Child Care Health Dev
                10.1111/(ISSN)1365-2214
                CCH
                Child
                John Wiley and Sons Inc. (Hoboken )
                0305-1862
                1365-2214
                27 September 2018
                January 2019
                : 45
                : 1 ( doiID: 10.1111/cch.v45.1 )
                : 45-53
                Affiliations
                [ 1 ] International Centre for Evidence in Disability London School of Hygiene and Tropical Medicine London UK
                [ 2 ] University of Ghana Accra Ghana
                [ 3 ] CBM East Africa Advisor Community Based Inclusive Development Kigali Rwanda
                [ 4 ] London School of Hygiene and Tropical Medicine London UK
                [ 5 ] PCG‐Health Coordination Office Accra Ghana
                [ 6 ] Norwich Medical School University of East Anglia Norwich UK
                [ 7 ] Faculty of Public Health and Policy London School of Hygiene & Tropical Medicine London UK
                [ 8 ] Sydney School of Public Health, Sydney Medical School London School of Hygiene and Tropical Medicine London UK
                Author notes
                [*] [* ] Correspondence

                Maria Zuurmond, Research Fellow, International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, London, UK.

                Email: maria.zuurmond@ 123456lshtm.ac.uk

                Author information
                http://orcid.org/0000-0002-0347-0126
                Article
                CCH12618 CCH-2018-0130.R1
                10.1111/cch.12618
                7379711
                30259548
                aadac536-1b70-4a46-b5e0-54acb96be927
                © 2018 The Authors. Child: Care, Health and Development Published by John Wiley & Sons Ltd

                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
                : 28 March 2018
                : 09 July 2018
                : 12 August 2018
                Page count
                Figures: 2, Tables: 1, Pages: 9, Words: 5584
                Categories
                Research Article
                Research Articles
                Custom metadata
                2.0
                January 2019
                Converter:WILEY_ML3GV2_TO_JATSPMC version:5.8.5 mode:remove_FC converted:24.07.2020

                Pediatrics
                caregiver,cerebral palsy,child disability,evaluation,ghana,wellbeing
                Pediatrics
                caregiver, cerebral palsy, child disability, evaluation, ghana, wellbeing

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