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Documentation of everyday life and health care following gastrostomy tube placement in children: a content analysis of medical records

BACKMAN, Ellen
GRANLUND, Mats
KARLSSON, Ann-Kristin
February 2019

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Background: Everyday routines play a vital role in child functioning and development. This study explored health professionals’ documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals.

 

Methods: The medical records of 39 children (median age 38 months, min–max: 15–192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY.

 

Results: One overall theme, “Seeking a balance”, captured the view of life with a gastrostomy and the health care provided. Two categories, “Striving for physical health” and “Depicting everyday life” with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component “Body functions”.

 

Conclusions: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy.

A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness

PHOENIX, Michelle
JACK, Susan M
ROSENBAUM, Peter L
MISSIUNA, Cheryl
January 2019

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Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation services.

 

Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail.

 

Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent’s feelings, skills, knowledge, logistics, values and beliefs and parent’s relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children’s developmental rehabilitation services.

Investigating barriers teachers face in the implementation of inclusive education in high schools in Gege branch, Swaziland

ZWANE, Sifiso L.
MALALE, Matome M.
2018

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Background: The kingdom of Swaziland is a signatory to policies on universal education that ensure high quality basic education for all. Education for All is a commitment to provide equal opportunities for all children and the youth as provided for in the country’s constitution of 2005. The tone for the introduction of inclusive education in Swaziland was inevitably set by the new constitution of 2005. Since then several policies have been produced by the government, all aimed at providing equal education opportunities to all children in the country. These policies include the Swaziland National Children’s Policy (2009), Poverty Reduction Strategy and Action Plan (2006) and Draft Inclusive Education Policy (2008). The Education for All Policy (2010) is the policy that upon implementation became a stimulus for the introduction of inclusive education into mainstream schools; as a result, all teachers in the country’s schools were expected to be competent enough to teach learners with a wide range of educational needs. However, in-service teachers received inadequate staff development and training ahead of the implementation of inclusive education and a majority of teachers were not professionally developed for inclusive education, as pre-service students at tertiary training level.

 

Objectives: This study investigated barriers in the implementation of inclusive education at high schools in the Gege branch, Swaziland, with a view to finding lasting solutions to inform research and government policy.

 

Method: This research is a qualitative interpretive case study based on selected schools in the Gege branch of schools. Data was obtained through semi-structured research interviews and document analysis. It was processed and analysed through data coding, unitising, categorising and emergence of themes, which became the findings of the study.

 

Results: Lack of facilities in the governments’ schools and teachers’ incompetence in identifying learners facing learning challenges in their classrooms are some barriers to inclusivity.

 

Conclusion: The study concludes that there is a need for the Ministry of Education and Training to craft an inclusive curriculum in line with the inclusive policy in order to cater for the diverse educational needs of all learners in mainstream schools. It is thought that instituting a vibrant in-service and pre-service teacher training programme by the Ministry of Education and Training will increase teachers’ capacity to a level where teaching in inclusive classrooms does not negatively affect their competence.

Inclusive Classroom Profile (ICP): a cultural validation and investigation of its perceived usefulness in the context of the Swedish preschool

LUNDQVIST, Johanna
LARSDOTTER BODIN, Ulrika
2018

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The Inclusive Classroom Profile (ICP) is a structured observation instrument. It has been developed to support high-quality early childhood inclusion of children with special educational needs and disabilities. The aim of this study is to examine the cultural validity of the instrument in Swedish preschools and to investigate its perceived usefulness in a Swedish preschool context. Ten special educators, who conducted professional dialogues with preschool teachers and other preschool staff members in a Swedish municipality, were enrolled. The instrument was compared with the Swedish national curriculum for the preschool, and the perceptions of special educators were collected by way of dialogue seminar method. Thematic analyses were conducted. The results of the study show that the instrument, with few exceptions, is valid in Sweden, and that the instrument can be useful for special educators conducting professional dialogues about early childhood inclusion with preschool teachers and other preschool staff members. The study has relevance for those who work with early childhood inclusion in Sweden as well as elsewhere, and for those who plan to validate the instrument and investigate its perceived usefulness in a context pertinent to them. High-quality inclusion is on the agenda in many nations, and a Sustainable Development Goal.

‘We create our own small world’: daily realities of mothers of disabled children in a South African urban settlement

VAN DER MARK, Elise J
CONRADIE, Ina
DEDDING, Christine W M
BROERSE, Jacqueline E W
2018

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Parents of disabled children face many challenges. Understanding their experiences and acknowledging contextual influences is vital in developing intervention strategies that fit their daily realities. However, studies of parents from a resource-poor context are particularly scarce. This ethnographic study with 30 mothers from a South African township (15 semi-structured interviews and 24 participatory group sessions) unearths how mothers care on their own, in an isolated manner. The complexity of low living standards, being poorly supported by care structures and networks, believing in being the best carer, distrusting others due to a violent context, and resigning towards life shape and are shaped by this solitary care responsibility. For disability inclusive development to be successful, programmes should support mothers by sharing the care responsibility taking into account the isolated nature of mothers’ lives and the impact of poverty. This can provide room for these mothers to increase the well-being of themselves and their children.

A Cross-sectional Survey of Rehabilitation Service Provision for Children with Brain Injury in Selangor, Malaysia

TAY, Ee Lin
WONG, Chee Piau
2018

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Purpose: Rehabilitation services in Malaysia are provided by both governmental and non-governmental agencies but there are challenges, such as the lack of integration between agencies, and accessibility barriers to services especially for the population of urban poor and people in the rural areas. With the help of a survey, this project aimed to gain a better understanding of rehabilitation services provided for children with brain injury within the state of Selangor and Federal Territories of Kuala Lumpur and Putrajaya.

 

Method: A list of 205 organisations that provide rehabilitation services for children with neurological injuries was compiled. The researchers attempted to verify the services by visiting the facilities or via telephone or email communication if visits were not possible.

 

Results: The researchers were able to verify 83% of the organisations identified. There are 40 hospitals and 17 service providers for acute and / or chronic physical rehabilitation services for persons with disabilities of all ages, including children.

 

Conclusion: Findings showed the unequal distribution of rehabilitation service provision by districts. Service providers were concentrated in the urban areas. Setting up new healthcare facilities is one of the solutions but the costs for development, construction, and manpower could be high. An alternative solution is proposed, namely, the use of a home-based virtual rehabilitation programme.

What do Dutch general education teachers do to facilitate the social participation of students with SEBD?

DE LEEUW, Renske Ria
DE BOER, Anke
MINNAERT, Alexander
2018

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Few studies have addressed the daily practice of applied teacher strategies aimed at facilitating the social participation of students with social-emotional problems or behavioural difficulties (SEBD). In this paper, we present two interlinked studies that address this topic. The main study reports on the development of the Teacher Strategy Questionnaire on Social Participation in the Classroom (TSQ-SPC). We tested the questionnaire’s construct validity by performing a second-order confirmatory factor analysis. The follow-up study presents the results of a survey of 163 Dutch general primary education teachers of inclusive classes using a modified version of the TSQ-SPC. It provides insights on the strategies that teachers apply in their daily practice to facilitate positive social participation of students with SEBD. The findings of both studies suggest that general primary education teachers apply a limited repertoire of strategies. Accordingly, there is an urgent need for further research focusing on the development of interventions and revisions of the pre- and in-service teacher development curricula aimed at adequately supporting and preparing general education teachers.

Parental Perceptions, Attitudes and Involvement in Interventions for Autism Spectrum Disorders in Sarawak, Malaysia

TEO, Jing Xin
LAU, Bee Theng
2018

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Purpose: This study explores and compares perspectives of educators and parents regarding interventions used in managing Autism Spectrum Disorder (ASD) in Sarawak, Malaysia. Information on parental desires and limitations when selecting and maintaining management will aid in the development of strategies for ASD educators to work effectively with parents and caregivers, and vice versa.

 

Method: This qualitative research employed traditional question and answer interviews with 7 ASD educators and 30 parents. Interviews were semi-structured and questions were open-ended to allow for additional details to be relayed within the scope of the subject matter. Thematic analysis revealed overarching perceptions concerning parental attitudes towards involvement in their children’s interventions, and implications of cultural context.

 

Results: Perspectives were similar regarding the importance of confidentiality from educators and cultural factors playing a major role in content of intervention chosen by parents. Perspectives differed across four themes. Of significance was the way in which both samples viewed parental self-reliance in supplementing interventions and parental attitudes in effort and perseverance. 

 

Conclusion: Parental resources and culture influence ability and attitudes towards involvement. While educators may not agree on certain aspects, mutual appreciation of differing perspectives would benefit the children.

Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance

HULTMAN, Lill
FORINDER, Ulla
FUGL-MEYER, Kerstin
PERGERT, Pernilla
2018

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This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.

‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism

CLASQUIN-JOHNSON, Mary G.
CLASQUIN-JOHNSON, Michel
2018

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Background: In this article, we reflected on our experience of the cost of parenting a child with autism, including our ongoing search for educational and therapeutic intervention.


Objectives: We aimed to give an academic insight into the state of autism education and care in South Africa as seen by us, with special attention to its cost and sustainability.


Methods: Using evocative autoethnography as storied scholarship together with critical autism studies, we reflected on stories of the past 5 years since our son’s diagnosis.


Results: Our experiences agree with international studies that establish autism as the most expensive disability. In addition to the high costs of diagnosis, existing intervention and support approaches are unaffordable for the majority of South Africans. We recommend that teachers should be trained to participate in early screening and diagnosis, as well as co-therapists, to strengthen the implementation of inclusive education.


Conclusion: The kind of autism intervention currently offered in South Africa is financially and socially unsustainable. Instead of positioning autism as an individual or family dilemma, it should be addressed as an educational and societal issue. Future research should explore cost-effective options for a developing country context, while promoting best practice within inclusive settings.

Cognitive Constraints on the Simple View of Reading: A Longitudinal Study in Children With Intellectual Disabilities

VAN WINGERDEN, Evelien
SEGERS, Eliane
VAN BALKOM, Hans
VERHOEVEN, Ludo
2018

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The present article aimed to explore how the development of reading comprehension is affected when its cognitive basis is compromised. The simple view of reading was adopted as the theoretical framework. The study followed 76 children with mild intellectual disabilities (average IQ = 60.38, age 121 months) across a period of 3 years. The children were assessed for level of reading comprehension (outcome variable) and its precursors decoding and listening comprehension, in addition to linguistic skills (foundational literacy skills, rapid naming, phonological short-term memory, verbal working memory, vocabulary, and grammar) and non- linguistic skills (nonverbal reasoning and temporal processing). Reading comprehension was predicted by decoding and listening comprehension but also by foundational literacy skills and nonverbal reasoning. It is con- cluded that intellectual disabilities can affect the development of reading comprehension indirectly via linguistic skills but also directly via nonlinguis- tic nonverbal reasoning ability.

Feeling disability: theories of affect and critical disability studies

GOODLEY, Dan
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2017

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This paper explores connections between affect studies and critical disability studies. Our interest in affect is sparked by the beginnings of a new research project that seeks to illuminate the lives, hopes and desires of young people with ‘life-limiting’ or ‘life-threatening’ impairments. Cultural responses to these young people are shaped by dominant discourses associated with lives lived well and long. Before commencing our empirical work with young people we use this paper to think through how we might conceptualise affect and disability. We present three themes; ontological invalidation in neoliberal-able times; affect aliens and crip killjoys; disability and resistant assemblages.

Teachers’ Perceptions of Disabilities on the Island of Roatán, Honduras

SCHNEIDER, Cornelia
2017

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Purpose: Roatán, a small island in Honduras, is home to six ethnic groups. Due to financial constraints, many children have limited access to schooling. This article is a study on teachers’ perceptions of disabilities and students with disabilities and inclusive education on the island.

 

Method: Twenty seven teachers working in public and private schools, and schools funded by the World Bank, were interviewed in March-April of 2014 in order to explore cultural and social representations of disabilities on the island.

 

Results: The findings show that many of the teachers’ representations can be analysed under the lens of different models of disability - the medical model, the social model, and a religious-moral model. Inclusive education is perceived less as a means of including children with disabilities in the regular classroom, and more as a method of creating institutions to take care of their needs.

 

Conclusion: There is a strong intersection of poverty, post-colonialism and disability which makes working under an inclusive lens very difficult for teachers. The cultural norms influence ideas of normalcy and disabilities, and the blame is on parents for having children with disabilities.

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.

Enhancing reading abilities of learners with intellectual impairments through computer technology

MOSITO, Cina P.
WARNICK, Albert M.
ESAMBE, Emmanuel E.
2017

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Background: Developments in the teaching of children with disabilities support pedagogy that emphasises learners’ strengths as opposed to their assumed deficiencies. Educators and mediators who advocate this view continually strive for tools and methodologies that enhance learner participation in academic environments. Computer technology is one of the tools recognised for its potential to enrich learning experiences of learners with an intellectual impairment.


Objectives: We sought to assess the influence of text-to-speech stories on the reading ability of intellectually challenged learners.

 

Method: A qualitative action research study that involves learners at a special school in Cape Town, South Africa. Pre- and post-test data of the reading performance of learners are analysed with a focus on how they demonstrate change.

 

Results: Although no claims can be made about the explicit influence on reading performance, computer-assisted learning has the potential in isolating reading processes that classroom-based interventions can address. In addition, computers enhance motivation and enthusiasm to learn.

 

Conclusion: A need for education based on inclusion and positive differentiation remains the key driver in any educational interventions.

The development and evaluation of content validity of the Zambia Spina Bifida Functional Measure: Preliminary studies

MWESHI, Margaret M.
AMOSUN, Seyi L.
SHILALUKEY-NGOMA, Mary P.
MUNALULA-NKANDU, Esther
KAFAAR, Zuhayr
2017

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Background: Very little is known on outcome measures for children with spina bifida (SB) in Zambia. If rehabilitation professionals managing children with SB in Zambia and other parts of sub-Saharan Africa are to instigate measuring outcomes routinely, a tool has to be made available. The main objective of this study was to develop an appropriate and culturally sensitive instrument for evaluating the impact of the interventions on children with SB in Zambia.


Methods: A mixed design method was used for the study. Domains were identified retrospectively and confirmation was done through a systematic review study. Items were generated through semi-structured interviews and focus group discussions. Qualitative data were downloaded, translated into English, transcribed verbatim and presented. These were then placed into categories of the main domains of care deductively through the process of manifest content analysis. Descriptive statistics, alpha coefficient and index of content validity were calculated using SPSS.


Results: Self-care, mobility and social function were identified as main domains, while participation and communication were sub-domains. A total of 100 statements were generated and 78 items were selected deductively. An alpha coefficient of 0.98 was computed and experts judged the items.


Conclusions: The new functional measure with an acceptable level of content validity titled Zambia Spina Bifida Functional Measure (ZSBFM) was developed. It was designed to evaluate effectiveness of interventions given to children with SB from the age of 6 months to 5 years. Psychometric properties of reliability and construct validity were tested and are reported in another study.

‘When he’s up there he’s just happy and content’: Parents’ perceptions of therapeutic horseback riding

Boyd, Lauren
le ROUX, Marieanna
2017

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Background: There is limited global and South African research on parents’ perceptions of therapeutic horseback riding (THR), as well as their perceptions of the effect of the activity on their children with disabilities.


Objective: To explore and describe parents’ perceptions and experiences of THR as an activity for their children with disabilities.


Method: Twelve parents whose children attend THR lessons at the South African Riding for the Disabled Association in Cape Town were asked to participate in a semi-structured interview. The qualitative data obtained from the interviews were first transcribed and then analysed using thematic analysis to establish parents’ perceptions of the THR activity.


Results: The main themes that emerged included parental perceived effects of THR on children, parents’ personal experiences of the services, and parents’ perceived reasons for improvements in the children. The participating parents indicated that THR had had a positive psychological, social and physical effect both on the children participating in the riding, as well as on the parents themselves.


Conclusion: According to parents, THR plays an important role in the lives of children with various disabilities and in the lives of their parents. The results of the study address the gap in the literature regarding parents’ perceptions of THR.

What do I think about inclusive education? It depends on who is asking. Experimental evidence for a social desirability bias in attitudes towards inclusion

LÜKE, Timo
GROSCHE, Michael
2017

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Recently, research has focused on attitudes towards inclusive education, and the majority of studies use questionnaires to measure this vital variable. In two consecutive experiments, we showed that attitudes towards inclusive education are not stable but instead are significantly influenced by social context. We manipulated information on the organisation conducting a survey regarding attitudes of participants towards inclusive education. The results show that the attitude of the organisation conducting the survey – as perceived by the participant – outperforms well- documented variables (e.g. sex, age, and contact to a person with disability) in predicting the attitudes of the participant towards inclusion. This one variable explains as much variance as all other predictors combined. We argue that social desirability is a neglected issue in research on attitudes towards inclusive education. Our findings challenge the validity of numerous studies on this topic because they show a positive bias in the attitudes of participants when they were surveyed by a university. Thus, we outline the first steps to reduce social desirability-induced validity problems in research on attitudes towards inclusion.

Effect of Music Intervention on the Behaviour Disorders of Children with Intellectual Disability using Strategies from Applied Behaviour Analysis

KALGOTRA, Ritu
WARWAl, Jaspal Singh
2017

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Purpose: The effect of music intervention on mild and moderate Intellectually disabled children was studied in non-randomized pre-test post-test control group design at an Indian state (Jammu) J&K.

 

Method: The mild and moderate intellectual disabled children fulfilling inclusive and exclusive criteria were placed into control and experimental group. BASIC-MR part-B (pre-test) was administered on both the groups. Intervention in music activities using strategies from Applied Behaviour Analysis was introduced sequentially to the experimental group. Children in the control group were not involved in any additional activity. Both the groups were assessed after 6 months (post-test) to find out the effect of intervention.

 

Results: The mean difference between both the groups of mild and moderate intellectually disabled children was significant. In both mildly disabled children, F (1, 2) = 36.937, p = .026 and moderately disabled children F (1, 13) =71.686, p = .000, the effect of the music intervention was highly significant.

 

Conclusion: Music intervention program produced significant changes in the domains of violent and destructive behaviour and misbehaviours with others domains of children with mild intellectual disability. In children with moderate disability, music intervention produced significant changes in the domains of violent and destructive behaviour, misbehaviours with others, self-injurious behaviours, repetitive behaviours, hyperactivity, rebellious behaviours, and anti-social behaviours. Both mild and moderate intellectually disabled children didn’t show any significant change in temper tantrums, odd behaviours and fears domains of behaviour disorders.

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