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A qualitative study: Barriers and support for participation for children with disabilities

MARIE, Anne
HANSEN, Witchger
SIAME, Musonde
VAN DER VEEN, Judith
2014

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Background: This qualitative–exploratory study examined the barriers to participation amongst children with disabilities in Lusaka, Zambia, from the mothers’ perspective.

 

Objectives: The objectives of this study were to understand how mothers of children with physical and cognitive disabilities who engaged their children in community-based rehabilitation (CBR) services in Lusaka, Zambia, perceived and described (1) the level of support they received and the barriers they encountered in terms of their child’s meaningful social participation; (2) the use and awareness of these barriers to identify and pursue advocacy strategies; and (3) hopes for their child’s future.

 

Methods: Data were collected through semi-structured interviews with each mother in her home.Results: Findings revealed both support and barriers to the child’s social participation in relationship to their family, friends and community. Support also came from the CBR programme and mothers’ personal resourcefulness. Mothers identified their child’s school,their immediate environment and financial burdens as barriers to participation as well as their own personal insecurities and fears. Strategies to overcome barriers included internal and external actions. The mothers involved in the study hope their child’s abilities will improve with continued CBR services. Some mothers described a bleak future for their child due to alack of acceptance and access to education.

 

Conclusion: The findings of this study suggest the significant role the mother of a child with a disability plays in her child’s social participation. Recommendations include enhancing CBR programming for families, especially for mothers, and advocating on behalf of children with disabilities and their families to attract the attention of policy makers.

Caring for people with intellectual disabilities in poor rural communities in Cambodia : experience from ADD International

CORDIER, Sylvie
October 2014

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This article explores the impact of ADD International’s project in Cambodia, which aimed to support communities to learn more about persons with intellectual disabilities and support them in their daily life. The article has a particular focus on how this work affected carers, the majority of whom are women

Gender & Development, 22:3

The Malawi key informant child disability project

TATARYN, Myroslava
et al
August 2014

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“The aim of this study was to use the KIM to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. The Key Informant Method (KIM) is a novel method for generating these data. KIM focuses on training community volunteers to identify local children who may have disabilities, who are then screened by medical professionals and referred on for appropriate health and rehabilitation interventions. Consequently, the method offers an alternative to population-based surveys of disability in children, which can be costly and time consuming”

The Malawi key informant child disability project : summary report

TATARYN, Myroslava
et al
August 2014

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This report provides a summary of research project conducted by the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine and the University of Malawi. The study used the Key Informant Method (KIM) to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. This report presents summary of the study’s background information, aims and objectives, key findings, conclusions and recommendations

Independent but not alone : global report on the right to decide

INCLUSION INTERNATIONAL
June 2014

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This report presents the perspective of people with intellectual disabilities and their families on the right to decide, in line with Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD). Over the past two years, over 600 self-advocates, family members, disability advocates, and professionals participated in discussions motivated by Inclusion International’s Global Campaign on the Right to Decide. Additionally, Inclusion International heard from over 80 organisations from more than 40 countries. The report presents a series of recommendations and conclusions in order to advance the right to decide

Independent by not alone. Global report on the right to decide

LAURIN-BOWIE, Connie
Ed
June 2014

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Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) reflects a fundamental shift in thinking: it asserts that with support all people with intellectual disabilities are able to make decisions and have control in their lives. This Global Report presents the perspective of people with intellectual disabilities and our families on the right to decide. Over two years, over 600 self-advocates, family members, disability advocates, and professionals participated in discussions motivated by Inclusion International's Global Campaign on the Right to Decide. Additionally, more than 80 organizations from more than 40 countries worldwide contributed.

Recognising the agency of people with dementia

BOYLE, Geraldine
May 2014

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People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to iden- tify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.

Torture in healthcare settings : reflections on the Special Rapporteur on torture's 2013 thematic report

ANTI-TORTURE INITIAITIVE
February 2014

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This resource is a collection of articles focused upon the treatment of people with psycho-social disabilities in health-care settings, particularly with regard to torture, abuse and ill-treatment, and reflecting on the Special Rapporteur on Torture’s 2013 thematic report.

It brings together contributions by more than thirty international experts in response to the United Nations Special Rapporteur on Torture Juan E. Méndez’s thematic report, providing insights into essential topics and highlighting issues at the forefront of the intersecting medical, legal, and policy fields. It supports a commitment to tackling the challenges that continue to arise in promoting and protecting the human rights of persons in diverse healthcare settings globally

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