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Caregiver’s Involvement in Early Intervention for Children with Communication Disorders

MALAR, G
SREEDEVI, N
SURESH, C
2014

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Purpose: Since very young people benefit from early identification of communication disorders, the primary caregivers (generally the parents) become the fulcrum of the intervention services provided. This article deals with the measures taken to empower caregivers, as part of the early intervention services offered at the All India Institute of Speech & Hearing (AIISH) in Mysore city in India, and the impact this has had on their wards’ progress.

 

Method: A survey was conducted among the caregivers of 205 clients who availed of early intervention services. Five-pronged data were collected, pertaining to family demographic details, early intervention measures for their children with communication disorders, type and intensity of caregiver empowerment measures provided along with early intervention services, resultant caregiver participation in the education and training of their wards, and the consequent development in children with communication disorders. The mutual influences among these factors were analysed using simple correlation measures.

 

Results: The findings revealed that informal, but continuous and consistent efforts to empower parents, such as counselling and guidance, had a better impact. Empowered caregivers in turn contributed towards the education and training of their children with communication disorders, resulting in improved development of their wards’ communication skills and academic achievements.

 

Conclusion: The evidence adds strength to recommendations that caregiver empowerment and participation need to become integral components of early intervention services for young children with special needs.

The Relationship Between Gross Motor Function and Quality of Life Among Children with Cerebral Palsy

PUSPITASARI, M
RUSMIL, K
GURNIDA, D
2014

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Purpose: The aim of this study was to determine the relationship between gross motor function and quality of life among children with Cerebral Palsy (CP).

 

Method: This observational analytical study with cross-sectional design, was conducted at Yayasan Pembinaan Anak Cacat (YPAC) Bandung, Sekolah Luar Biasa (SLB) Cileunyi, and Paediatric Neurology Clinic of Dr. Hasan Sadikin Hospital Bandung, Indonesia, from March 2011 to September 2012. Gross motor function was assessed using Gross Motor Function Scale (GMFCS). Cerebral Palsy-Quality of Life (CP-QOL) questionnaire for parent-proxy version was used to assess quality of life of children with CP. Statistical analysis was done using Spearman rank test to determine the relationship between variables.

 

Results: Participants were 31 children with CP, between 4 -12 years of age. The most common type of CP was spastic quadriplegia (17 of the 31 children). Around 17 children had mild disability (GMFCS level I and II), 3 children had moderate disability (GMFCS level III), and 16 children had severe disability (GMFCS level IV and V). Majority of the parents had senior high school level education. Most of the fathers were self-employed while most of the mothers were housewives. Gross motor function was not significantly correlated to quality of life in general in children with CP (rs=-0.153, p=0.205). Although gross motor function was significantly correlated to pain and the impact of disability (rs=-0.313, p=0.043), other aspects of quality of life (social well-being and acceptance, feeling about functioning, participation and physical health, emotional well-being and self-confidence, access to services, and family health) were not significantly correlated (p>0,05) to it.

 

Conclusions: Gross motor function in children with CP was correlated to pain and the impact of disability domain of quality of life.

Send all my friends to school : a global campaign for education UK evaluation of UK’s aid to education for children with disabilities

NOCK, Stephen
DAVIS, Warren
Eds
2014

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This report reveals a major gap between DFID’s inclusive education policy and practice, with weak implementation, as a result of a lack of resources and capacity. GCE UK’s report highlights that there is an urgent need for a significant increase in policy attention and resources to address the major structural and social barriers that children with disabilities currently face in accessing education. It concludes by making key recommendations.  It finds that the issue needs much greater prioritisation within DFID, and that there is an urgent need for DFID to develop a systematic approach towards the issue, both directly within its education portfolio, and by mainstreaming the issue across other areas of DFID operations. It recommends that it is critical that DFID works to embed disability throughout its development programmes to achieve long-term change, even as governments change and key individuals move on

Disability : making CLTS fully inclusive

WILBUR, Jane
JONES, Hazel
2014

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This issue of Frontiers of CTLS (Community led total sanitation) focuses on “people with disabilities and particular needs for access to sanitation. There are many forms of disability, including mobility impairments, sensory impairments (affecting sight or hearing), chronic illness, impairments caused by older age or mental health issues.  People affected tend not to be present at triggering, to lack voice in the community, to have their needs overlooked, and may even be hidden by their families. This issue outlines the reality of the experiences of disabled people, the varied nature of their needs and how they can be met. It includes practical recommendations for people engaged in CLTS to make the different phases and processes of CLTS more inclusive”

Frontiers of CLTS : innovations and insights, Issue 03

A video and presentation is also available

Compendium of accessible WASH technologies

JONES, Hazel
WILBUR, Jane
2014

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This compendium of accessible WASH technologies is designed for use by staff, such as health workers and community volunteers, working directly with communities in rural areas of sub-Saharan Africa. A few examples of technologies are presented that families can adapt to suit their needs and budgets with many more options possible. Most of the ideas are geared towards disabled and older people, but are suitable for anyone who may have difficulty using standard facilities, such as pregnant women, children and people who are ill. The main focus is on household facilities, although some ideas might be useful for institutional facilities as well

A guide for community health workers supporting children with disabilities

ADAMS, Mel
et al
2014

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"This resource is to be used as a guide for Community Health Workers (CHWs) to support parents in promoting the development and independence of their child with neurodevelopmental disabilities...In line with current thinking, this resource places the emphasis on promoting activity and participation in a child’s daily life activities rather than therapies that try to fix ‘the problem’ (Skelton and Rosenbaum, 2010). As such, this manual provides ideas on how to support the child during activities of daily living – taking particular account of their physical and communication abilities and needs – and does not include hands-on rehabilitation techniques that focus on specific impairments. It does however provide guidance on overall management and prevention of further disability. The materials in this manual can be used as the basis for a programme of intervention that progresses through two stages"

Note: As indicated when clicking on the resource link below, the manual is available once contact details are entered or alternatively user can contact mel@maits.org.uk to receive a free pdf copy of this resource

The future is inclusive. How to make international development disability-inclusive

KEOGH, Mary
January 2014

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This first publication in our series on disability inclusive development covers key facts and figures on the situation of women, men, girls and boys with disabilities living in lowincome countries and presents the reasons why development and humanitarian actions must be disability-inclusive. •

Chapter 1 introduces the key concepts in disability-inclusive development and reflects also on CBM’s own journey towards disability-inclusive development.

Chapter 2 highlights why the inclusion of women, men, girls and boys with disabilities is important for effective development and humanitarian outcomes.  

Chapter 3 sets out why the human rights of women, men, girls and boys with disabilities are closely associated with development both at home and in international cooperation.

Chapter 4 highlights the key issues which cause barriers to disability-inclusive development, and provides a set of principles, case studies and good practice examples of how it can be achieved.  

Chapter 5 concludes with some key messages and introduces the topics that we will address in future publications in this series.

Checklist for integrating people with disabilities and others with access and functional needs into emergency preparedness, planning, response & recovery

KAILES, June Isaacson
2014

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When it comes to including people with disabilities and others with access and functional needs in emergency plans, strategic plans are rarely enough. Non-specific language and broad planning steps carries a substantial risk of discriminatory response and failure. It is the detail, the who, what, where, when, why, and how embedded in the tactical plans that make the difference. These details should also be incorporated into that standard operating procedures of departments and agencies, job aids, checklists, field operation guides, and training.


This checklist is for emergency planners, managers, responders, and public information officers (PIOs) who have responsibility for developing, maintaining, testing, delivering and revising emergency plans and services. Use it to help:

Evaluate current capacity of critical elements that integrate people with disabilities and others with access and functional needs into emergency planning, response, and recovery.
Develop inclusive emergency plans, policies, processes, protocols, training, job aids/checklists, standard operating procedures and exercise programs.
Periodically evaluate progress and identify elements that have been implemented, and areas that continue to need attention.

Effect of an Experiential Dysphagia Workshop on Caregivers’ Knowledge, Confidence, Anxiety and Behaviour During Mealtimes

HETTIARACHCHI, S
KITNASAMY, G
2013

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Purpose: Children with cerebral palsy who have associated feeding difficulties are at risk of aspiration and poor nutrition. This study aimed to measure the changes in knowledge, confidence, anxiety and behaviour among 25 Sri Lankan mothers with responsibility for feeding children diagnosed with cerebral palsy, after they attended an experiential workshop.

 

Method: Data collection was done through pre- and post-workshop questionnaires, observations and semi-structured interviews.

 

Results: There was a significant improvement in reported levels of knowledge and confidence and a decrease in the caregivers’ level of anxiety during mealtimes. The qualitative data analysis indicated changes in participant knowledge, particularly about the signs of aspiration and positioning during mealtimes. Observations showed better adherence to recommendations on communication, bolus size and utensils.

 

Conclusion: The findings support the utility of experiential training for caregivers, to ensure that children with cerebral palsy are fed safely.

Parent peer advocacy, information and refusing disability discourses

BELL, M
FITZGERALD, R
LEGGE, M
2013

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Parent peer advocacy is a distinct type of empowering relationship practised in Parent to Parent New Zealand that shares experiential knowledge gained from raising a child with disability, chronic illness or special needs and draws on both partnership and participation ideals of support. This support organisation matches families with impairment, illness and genetic difference in light of issues they encounter as families with disability. In this paper we discuss disabling historical contexts countered by the provision of information as advocacy, ambivalence towards difference in the organisation, and the rise in prospective parents seeking parent peer support. These thematic areas allow us to create an analytical framework to be used in the next phase of an empirical study with Parent to Parent New Zealand.

Exploring Knowledge and Attitudes towards HIV/AIDS among Deaf People in Ghana

MPRAH, W K
2013

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Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.

 

Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.

 

Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.

 

Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.

The Application of ICF-based Functioning Data on Home Environment Adaptation for Persons with Disabilities

TONGSIRI, S
HAWSUTISIMA, K
2013

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Purpose: This study illustrates how the International Classification of Functioning, Disability and Health (ICF) domains and qualifiers could be used to create functioning profiles of persons with disabilities in order to plan environmental changes. The outcome of the interventions can be measured by before-and-after comparisons of these profiles.

 

Method: 33 persons with disabilities (11 each from three provinces), with an average age of 43 years, were interviewed between November 2011 and May 2012. 67% of them were male. The functioning profiles of all the subjects were used as guidelines for home environment adaptations.

 

Results: The data helped to understand the limitations of persons with disabilities and identified the areas that needed enhancement to improve their functioning. Modification lay-outs were provided for all 33 persons with disabilities.

 

Conclusion and Implications: It was demonstrated that the ICF framework could help create functioning profiles to guide modifications in the home environment. Future studies should examine whether ICF can measure actual changes that occur after the modifications.

What are the impacts of approaches to increase the accessibility to education for people with a disability across developed and developing countries and what is known about the cost-effectiveness of different approaches?

BAKHSHI, Parul
KETT, Maria
OLIVER, Kathryn
June 2013

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This study presents a mapping of existing evidence that provides information about the impact of initiatives that provide education for children with disabilities, and also identifies any studies that provide an analysis about the cost-effectiveness of existing initiatives. It is useful for policymakers, researchers, practitioners, parents of children with disabilities and the children themselves

Who’s on my side?

ALLIANCE FOR INCLUSIVE EDUCATION UK
Parents For Inclusion UK
March 2013

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“"This film features disabled children and young people, their siblings and family members talking about why allies are important. They also talk about the support they get, the support they want and what changes need to be made in education, health and social care services so that they can have real choice and control. It is useful for anyone interested in inclusive education"

Violence and abuse towards persons with disabilities : international workshop report

DEEPAK, Sunil
et al
2013

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This second part of a community-based rehabilitation workshop report focuses on issues of violence, abuse and sexual abuse towards persons with disabilities. This report presents the information exchanged through formal presentations, personal testimonies, film clips, sharing of experiences and discussions around the workshop theme. The report highlights the main findings and presents five key recommendations
"Going beyond the taboo areas in CBR" workshop, part 2
Agra, India
30 November 2012

Getting to know cerebral palsy|Working with parent groups : a training resource for facilitators, parents, caregivers, and persons with cerebral palsy

INTERNATIONAL CENTRE FOR EVIDENCE IN DISABILITY (ICED)
et al
2013

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This manual aims to increase knowledge and skills in caring for a child with cerebral palsy. Research highlighted the significant needs of the caregivers, and how they can gain a huge amount of support from meeting with each other in an understanding environment. The manual is divided into 11 modules and promotes a participatory learning approach with an emphasis on the empowerment of parents and caregivers. It provides an opportunity for parents to organise themselves and to consider strategies at the community level to address some of the issues which affect them and their child
Note: An online community that aims to support practitioners share their learning and experiences around the parent training manual is available from the weblink. Members can share questions and perspectives, news items and resources with eachother via email or through a community website

Perceptions of caring for children with disabilities: Experiences from Moshi, Tanzania

MCNALLY, Anna
MANNAN, Hasheem
2013

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Background: Although there exist laws, policies and standards in Tanzania that serve to protect and improve the lives of children with disabilities, the individual human experiences and feelings of the carers and parents still remain the realities of caring for children with disabilities. There is a lack of qualitative studies examining experiences in a developing context. This research aimed to fill that gap.

 

Objectives: The objective of this research was to gain an insight into how having a child with a disability impacts upon participants lives and to examine both negative and positive experiences of care through the use of qualitative methods.

 

Method: This was a qualitative, exploratory study and followed a phenomenological method. Purposive convenience sampling methods were used to recruit 14 carers in Moshi, Tanzania. Qualitative, semi-structured interviews were undertaken with all 14 participants.

 

Results: Five main themes emerged from the data which shed light on the carers experiences, namely, objective challenges in terms of financial challenges, employment issues and demands of care; subjective challenges in the form of stigma, isolation and pity; positive experiences such as the child’s progress, respect and happiness; material and financial needs; and coping mechanisms which included beliefs, support and attitudes.

 

Conclusion: The findings of this research were that objective challenges are common and more significant than subjective challenges. Positive experiences were not as easily identified by the participants as the challenges faced. However, having analysed the data, carers do not experience their roles as entirely negative. They simply need the resources to deal with objective challenges which in a developing context are not easily attainable.

Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

ALDERSEY, Heather M
2012

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When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

Inclusive education

CORPS, Hannah
September 2012

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This policy brief provides an overview of Handicap International’s 2012 policy paper on inclusive education which explains Handicap International’s current work on inclusive education and offers perspectives for the period 2011-2015
PP Brief No 8

Parental Stress in Raising a Child with Disabilities in India

GUPTA, V B
MEHROTRA, P
MEHROTRA, N
2012

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Purpose: To determine parenting stress and its determinants among parents of children with disabling conditions in India.

 

Methods: The Parenting Stress Index – short form and a few open ended questions were administered to a convenience sample of sixty-six patient families in July, 2009 in the cities of New Delhi and Faridabad regions of Northern India through six non- governmental organizations (NGOs) that serve children with disabling conditions.

 

Results: Female sex of the child was associated with higher stress related to failure of the child to meet parent’s expectations and to satisfy the parents in their parenting role. Parents engaged in more lucrative and prestigious occupations had more stress than parents engaged in less prestigious and lucrative occupations irrespective of their income. Many parents reported receiving little support from their extended families in taking care of their child. Religion was found to be a common coping resource used by the parents.

 

Conclusion and Implications: Higher parenting stress in parents of girls raises the possibility of abuse and neglect. Little support from informal family resources underscores the need for developing formal resources for supporting the parents. The specific resources of parenting stress among parents of different socioeconomic status should be explored in future studies so that appropriate interventions can be planned.

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