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Parent Empowerment in Early Intervention Programmes of Children with Hearing Loss in Mumbai, India

KULKARNI, Kasturi Arun
GATHOO, Varsha Shrikant
2017

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Purpose: Since families are perceived to be active agents in the early intervention programmes of young children with disabilities, professionals ought to treat parents as equal partners and keep them informed and involved in various aspects of the intervention.  This study aimed to explore the areas in which parent empowerment is currently being facilitated in the early intervention centres for children with hearing loss.

 

Method: A qualitative research with conversational analysis was the approach used. Focus group discussions with the two primary stakeholders, namely parents and special educators, were held separately at five sites in Mumbai, to gather their views on the existing areas of empowerment. It was also decided to explore the felt needs of parents in this regard. Person triangulation was used to ascertain the credibility of the data.

 

Results: Conversational analysis yielded 4 themes with respect to parents: Parental knowledge, involvement, support and needs. 

 

Conclusion and Implications: The study highlighted the gaps in parent empowerment in the programmes undertaken by early intervention centres.  A recommendation is made to develop a common framework for empowering parents. It is envisaged that such a framework will bridge the gap between what currently exists for parents, their felt needs, and current global practices.  This framework could also assist in measuring family empowerment outcomes.

Effect of Multidisciplinary Intervention on Clinical Outcomes of Children with Autism Spectrum Disorder in Mumbai, India

DALWAI, S H
MODAK, D K
BONDRE, A P
ANSARI, S
SIDDIQUI, D
GAJRIA, D
2017

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Purpose: To analyse clinical outcomes in terms of functional changes in children with Autism Spectrum Disorder (ASD), before and after receiving a multidisciplinary developmental intervention programme.

 

Methods: Structured goal-oriented multidisciplinary intervention, individualised to each child, was implemented through 5 child development centres in Mumbai, India, in 2014-2015. Secondary data analysis of 38 children diagnosed with ASD, in the age group of 2.1 - 6.1 years, was conducted. All children received occupational therapy and speech therapy, and parental counselling was also done. The average number of intervention sessions were 48-72 for occupational therapy (twice or thrice a week), 24-48 for speech therapy (once or twice a week) and 5-6 for parental counselling (once a month). Childhood Autism Rating Scale (CARS) and Vineland Social Maturity Scale (VSMS) were used for assessment, before and after intervention.

 

Results: Mean positive difference in CARS total scores through paired t-test was 4.18 (p < 0.0001). Significant positive changes in functional ability were observed in most of the sub-scales (relating to people; object use; visual response; verbal and non-verbal communication; taste, smell and touch response and use; level and consistency of intellectual response and general impression). Paired t-test also showed significant positive changes on all VSMS sub-scales, exceptSocialisation.

 

Conclusions: The model used in this multidisciplinary intervention, and adherence to its protocols, has the potential to improve functional ability (or the child’s adaptation to his/her condition) in children with ASD, in a region with limited awareness of developmental disabilities.

 

Limitations: Separate effects of factors outside the intervention could not be tested due to inadequate sample sizes for sub-analyses. Results also need to be validated by tests that do not depend on parental reporting (e.g., CARS and VSMS) but assess the performance of the child instead.

Entering the SDG era: What do Fijians prioritise as indicators of disability-inclusive education?

SPRUNT, Beth
DEPPELER, Joanne
RAVULO, Kitione
TINAIVUNIVALU, Savaira
SHARMA, Umesh
2017

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Sustainable Development Goal (SDG) 4 is to ‘Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all’ and the targets and indicators for SDG 4 emphasise the importance of measuring outcomes for children with disabilities (United Nations, 2015b). This paper reports on findings from qualitative research investigating Fijian stakeholders’ priorities for measuring success of efforts within a contextually and culturally meaningful process of disabilityinclusive education; that is, achievement of SDG 4 for children with disabilities. The priorities are presented in light of the specific challenges in Fiji to fulfilling this goal. The research presented in this paper is one part of a much larger mixed method study funded by the Australian aid program that aimed to develop and test indicators for the education of children with disabilities in the Pacific (Sharma et al., 2016). Fijian researchers with lived experience of disability undertook key informant interviews and focus group discussions with 28 participants. The findings include the need for or role of: an implementation plan and resourcing to ensure the national inclusive education policy is activated; improved awareness and attitudes; competent, confident and compassionate teachers; disability-specific services and assistive technology; accessible buildings and transport; and the important role of special schools. Inclusive education reform requires that Fiji incorporates and builds on existing strengths in special and inclusive education to ensure that systems and people are prepared and resourced for inclusion. The paper concludes that targets within SDG 4 are compatible with priorities within Fiji, however additional indicators are required to measure locally-prioritized changes related to barriers which need to be addressed if Fiji is to make progress towards the higher-order targets of SDG 4.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

Childhood disability population-based surveillance: Assessment of the Ages and Stages Questionnaire Third Edition and Washington Group on Disability Statistics/UNICEF module on child functioning in a rural setting in South Africa

VISSER, Marieta
NEL, Mariette
BRONKHORST, Caretha
BROWN, Lara
EZENDAM, Zaskia
MACKENZIE, Kira
VAN DER MERWE, Deidré
VENTER, Marné
2016

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Background: Epidemiological information on childhood disability provides the basis for a country to plan, implement and manage the provision of health, educational and social services for these vulnerable children. There is, however, currently no population-based surveillance instrument that is compatible with the International Classification of Functioning, Disability and Health (ICF), internationally comparable, methodologically sound and comprehensively researched, to identify children under 5 years of age who are living with disability in South Africa and internationally. We conducted a descriptive pilot study to investigate the sensitivity and specificity of translated versions of the Ages and Stages Questionnaire Third Edition (ASQ-III) and the Washington Group on Disability Statistics/UNICEF module on child functioning (WG/UNICEF module) as parent-reported measures. The aim of our study was to identify early childhood disabilities in children aged 24–48 months in a rural area of South Africa, to determine the appropriateness of these instruments for population-based surveillance in similar contexts internationally.

 

Methods: This study was conducted in the Xhariep District of the Free State Province in central South Africa, with 50 carers whose children were registered on the South African Social Security Agency (SASSA) database as recipients of a grant for one of the following: Care Dependency, Child Support or Foster Care. The researchers, assisted by community healthcare workers and SASSA staff members, conducted structured interviews using forward–backward translated versions of the ASQ-III and the WG/UNICEF module.


Results: Both measurement instruments had a clinically meaningful sensitivity of 60.0%, high specificity of 95.6% for the ASQ-III and 84.4% for the WG/UNICEF module, and the two instruments agreed moderately (Kappa = 0.6).

 

Conclusion: Since the WG/UNICEF module is quicker to administer, easier to understand and based on the ICF, it can be considered as an appropriate parent-reported measure for large-scale, population-based as well as smaller, community-specific contexts. It is, however, recommended that future research and development continues with the WG/UNICEF module to enhance its conceptual equivalence for larger-scale, population-based studies in South Africa and internationally.

Slipping and holding minds: A psychosocial analysis of maternal subjectivity in relation to childhood disability

Young, Lisa Saville
BERRY, Jessie
2016

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Background: This paper elucidates a methodological approach to interview text that tries to acknowledge the psychosocial nature of disability and thereby ensuring that empirical work in disability studies complements theoretical arguments already developed.

 

Objectives: The aim of this study is to outline a psychosocial conceptualisation of maternal subjectivity in relation to childhood disability and to apply this conceptualisation as an analytic tool to segments of an interview with a mother of a child with physical and developmental disabilities.

 

Method: Drawing on psychoanalysis and attachment literature alongside critical social psychology we take readers through the analysis of an interview extract with a particular mother. Through a fine grained analysis, we demonstrate the value of attending to the affective processes in and around the text rooted in the particular intersubjective exchange (‘here and how’) of the interview and the particular socio-historical context (‘there and then’) in which the mother, child and researcher are located.

 

Findings: The reading draws attention to discourses that position this particular mother and her children in particular ways while also pointing to investments in these discourses such that these discourses are not purely social but play affective functions.

 

Conclusion: This paper demonstrates the value of using multiple lenses to read the text, seeking to understand what is going on from within each lens (discursive/social, interpersonal, intrapsychic), while also seeking to disrupt this understanding as we take up the position of a different lens. This approach enables us to hold onto the complexity and locatedness of maternal subjectivity for mothers of children with disabilities.

Early detection of communication delays with the PEDS tools in at-risk South African infants

LINDE, Jeannie van der
SWANEPOEL, De Wet
HANEKOM, Linique
LEMMER, Tasha
SCHOEMAN, Karla
GLASCOE, Frances P
VINCK Bart
2016

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Background: Prevalence of communication delays or disorders is increasing, possibly because of various environmental risk factors. Selection and implementation of effective screening tools are important to detect at-risk infants as early as possible. This study aimed to evaluate the accuracy of the Parents’ Evaluation of Developmental Status (PEDS), PEDS-Developmental Milestones and PEDS tools to detect communication delays in infants (6–12 months) in a South African primary healthcare context.

 

Method: A comparative study design evaluated the accuracy of the PEDS tools to detect communication delays, using an internationally accepted diagnostic assessment tool, the Rossetti Infant-Toddler Language Scale (RITLS). A convenience sample of 201 infants was selected at primary healthcare clinics.

 

Results: Expressive and receptive language sensitivity scores were low across all three screens(ranging between 14% and 44%). The PEDS tools had high sensitivity (71%) and specificity (73%) ratings for the receptive and expressive language and socio-emotional domain in combination.

 

Conclusion: In the sample population, the PEDS tools did not accurately detect receptive and expressive language delays; however, communication delays in general were identified. Future research determining accuracy of the PEDS, PEDS-Developmental Milestones and PEDS tools for children aged 2–5 years in detecting communication delays should be prioritised.

Barriers to Early Diagnosis, Intervention and Social Integration of Children with Developmental Disabilities: A Qualitative Study from Rural Villages and a Poor Urban Settlement of Bangalore, South India

GEORGE, C E
NORMAN, G
BENJAMIN, T E
MUKHERJEE, D
2014

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Purpose: Children with developmental disabilities, if given skilled early intervention, have the potential to lead productive lives and can contribute to the social and economic development of their communities. This study explores the barriers to early diagnosis and intervention for children with developmental disabilities who live in rural and urban areas of Bangalore city, India.

 

Methods: The study was conducted in selected villages of Devanahalli Taluk in Bangalore Rural District, and in Devara Jeevanahalli (DJ Halli), a shanty town in Bangalore city. The qualitative study design consisted of in-depth interviews and focus group discussions (FGDs).Parents of children with developmental disabilities, doctors practising in the area and school teachers were interviewed using a purposive sampling framework. An inductive, data-driven thematic analysis was carried out.

 

Results: The physician-related barriers were identified as lack of skills and understanding of children with developmental disabilities, lack of knowledge and resources, lack of specialist back-up services, and communication difficulties with regard to conveying bad news to clients. Parent-related barriers were financial constraints, delay in accepting the diagnosis, and prevalent myths, beliefs and stigma pertaining to disability. The teachers viewed children with special needs as an additional responsibility, and were also apprehensive about the attitudes and interaction of other children at school with children with disabilities.

Assessing Parental Role as Resource Persons in Achieving Goals of Early Detection and Intervention for Children with Hearing Impairment

ANSARI, M S
2014

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Early detection and intervention for any degree of hearing loss is critical to the linguistic, social and educational development of children with auditory deficit. Since parents and family members are in a position to identify hearing loss at an early stage, they can play a vital role in achieving the goals of early identification and intervention for their children.

 

Purpose: This study was conducted to determine the age at which parents and significant others begin to suspect hearing impairmentin their children, and to advocate for using them as resource persons in the early detection of hearing loss.

 

Method: Parents of children with hearing impairment were retrospectively surveyed and interviewed to determine the age at which suspicion, diagnosis, fitting of amplification and initiation of interventions occurred.

 

Results: Interviews revealed the average age to be 16.5, 24.3, 31.7 and 33.4 months, for suspicion, diagnosis, fitting of amplification and initiation of early intervention for hearing loss respectively. The obtained age of suspicion is lower than the age of identification of hearing loss reported in Indian literature. The current study found delays in diagnosis and fitting of amplification, both of which are essential to initiate early remedial programmes which facilitate development of speech and language skills in children with hearing impairment. Surprisingly, it was found that these delays were caused by professional failures.

 

Conclusion: It is emphasised that parents are in the best position to detect hearing problems in their children, and can be effectively utilised as manpower/ equal partners in achieving the goal of early identification of hearing loss. The study outlines appropriate ways and means to facilitate early identification and provide effective intervention for children with hearing impairment.

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.

Lady Health Workers (LHWs) as Flag Bearers for Children with Disabilities in Pakistan

LASI, S Z
QAYYUM, A
RAFIQUE, G
2012

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Purpose: This study explores the perceptions, knowledge and attitudes of LHWs towards children with disabilities in Pakistan. It considers the feasibility of utilising the LHWs for prevention, early identification and management of disabilities for these children in the community.

 

Methods: Two Focus Group Discussions (FGDs) were conducted with 15 Lady Health Workers (LHWs), and two In Depth Interviews (IDIs) with LHWs of both a semi-urban and a rural community of Pakistan.

 

Results: LHWs were found to have major concerns and strong emotions regarding children with disabilities. They also revealed the insensitive attitude of community members towards these children. While they understood the major types and magnitude of disabilities better than lay persons, they lacked the knowledge to manage these disabilities. Consanguineous marriages were identified as the main cause of disabilities. LHWs reported that education and health facilities were lacking in semi-urban and rural areas, and demanded that the government provide these facilities for the children. They also expressed their willingness to work for these children, provided they had the approval of higher authorities and were given proper training.

 

Conclusions: This qualitative exploratory study recommends that the existing primary health system be reviewed, and the possibility of introducing community based rehabilitation services, utilising LHWs’ services for children with disabilities, be examined. In this regard, it is imperative to assess the existing training modules of LHWs and to introduce modules on prevention, early identification, and management of children with disabilities. It is also necessary to employ mass media to spread awareness about persons with disabilities.

A Low-intensity Approach for Early Intervention and Detection of Childhood Disability in Central Java: Long-term Findings and Implications for “Inclusive Development”

KUIPERS, P
MARATMO, J
2012

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Purpose: This paper describes a qualitative follow-up study, conducted eight years after completion of a low-intensity early intervention and detection of childhood disability project in Central Java, Indonesia. The original project sought to increase the level of skills and engagement of existing community health volunteers, for the support of children with disabilities. This follow- up study explored long-term outcomes and implications for the inclusive development approach.

 

Method: Semi-structured interviews were conducted with 18 of the original volunteers. Interview notes were translated and thematically categorised.

 

Results: While the study was qualitative and descriptive, results indicate that despite the low intensity of the project, some early detection and prevention activities were still going on eight years later.

 

Conclusions: The study suggests that a low-intensity initiative such as this, which is closely aligned with the goals of a government department, may indeed achieve some ongoing change by extending the focus of the department towardsdisability-related concerns.

 

Implications: Implications are drawn for the emerging area of “inclusive development”, which similarly seeks to promote change in mainstream services for the benefit of people with disabilities.

The Communication Deall Developmental Checklist - Inter Rater Reliability

SAXENA-CHANDHOK, T
RAM-KIRAN, P
LAWRANCE, L
KARANTH, P
2011

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A checklist is ideal when assessing young children who are ‘difficult to test’. The Communication DEALL Developmental Checklist (CDDC) was developed by Karanth (1), to assess developmental skills of children up to the age of 6 years, along eight developmental domains, with norms based on an Indian population. Since all checklists depend on rater reliability, the aim of the current study was to establish inter rater reliability of the CDDC. Two senior Speech Language Pathologists used a 4-point rating scale, to assess 40 children with developmental disabilities (across the ages of 0-6 years) on the CDDC checklist. Each rater independently made two ratings during the assessment; the first as reported by the parent (PR1 and PR2), and the second based on the clinician’s own observation (CR1 and CR2). The correlation between CR1 and CR2, as well as PR1 and PR2 for each rater separately, was found to be high, suggesting that the CDDC provides a reliable baseline for the developmental skills of children up to 6 years.

Coronavirus (COVID-19)

INTER-AGENCY NETWORK FOR EDUCATION IN EMERGENCIES (INEE)

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These resources have been collected to support the provision of education in places affected by COVID-19.

 

Collections provided are: key educational resources; advocacy; child friendly resources; child protection; coordination; country response plans; distance learning; early childhood education; gender; guidance for schools; guidance for teachers; guidance for parents and caregivers; health nutrition and WASH; inclusion; mental health and psychosocial support; recovery.

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