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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.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Gendered experiences of physical restraint on locked wards for women

FISH, Rebecca
HATTON, Chris
2017

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Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.

How nursing home residents with dementia respond to the interactive art installation ‘VENSTER’: a pilot study

LUYTEN, Tom
BRAUN, Susy
JAMIN, Gaston
VAN HOOREN, Susan
DE WITTE, Luc
2017

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The goal of this study was (1) to determine whether and how nursing home residents with dementia respond to the interactive art installation in general and (2) to identify whether responses change when the content type and, therefore, the nature of the interaction with the artwork changes. The interactive art installation ‘VENSTER’ evokes responses in nursing home residents with dementia, illustrating the potential of interactive artworks in the nursing home environment. Frequently observed responses were naming, recognizing or asking questions about depicted content and how the installation worked, physically gesturing towards or tapping on the screen and tapping or singing along to the music. It seemed content matters a lot. When VENSTER is to be used in routine care, the choice of a type of content is critical to the intended experience/usage in practice. In this study, recognition seemed to trigger memory and (in most cases) a verbal reaction, while indistinctness led to asking for more information. When (initially) coached by a care provider, residents actively engaged physically with the screen. Responses differed between content types, which makes it important to further explore different types of content and content as an interface to provide meaningful experiences for nursing home residents.

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

Confessions of an inadequate researcher: space and supervision in research with learning disabled children

BENZON, Nadia von
2016

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Location is often at the fore of decision-making regarding fieldwork and choice of methods. However, little research has directly discussed the importance of the choice of site in the production of research data, particularly concerning the way that different relationships will manifest between researcher and participant in different spaces. Site may be particularly important in research with (learning disabled) children, as research location is intertwined with the level of caregiving required from the researcher, and the sorts of surveillance the research engagement may be subject to. This paper draws on research with learning disabled 6–16-year olds that took place in homes, schools and the outdoors, in a variety of microgeographical locations from bedrooms to nature reserves. This paper reflects on the challenges, including the very ‘worst’ research moments, occurring in the different research environments. Whilst the research was carried out with learning disabled children and young people, the discussion has implications for research with non-disabled children and ‘vulnerable’ participants more broadly.

The validation of an educational database for children with profound intellectual disabilities

SPANGENBERG, Karlien
CORTEN, Lieselotte
VAN RENSBURG, Winnie
KILIAN, Elizma
MCKENZIE, Judith
VORSTER, Hein
JELSMA, Jennifer
2016

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Background: The Western Cape Forum for Intellectual Disability took the South African Government to court in 2010 on its failure to implement the right to education for Children with Severe and Profound Intellectual Disability. Subsequently, multidisciplinary teams were appointed by the Western Cape Education Department to deliver services to the Special Care Centres (SCCs). Initially, minimal information was available on this population.


Objectives: The purpose is to document the process of developing and validating a database for the collection of routine data.


Method: A descriptive analytical study design was used. A sample of convenience was drawn from individuals under the age of 18 years, enrolled in SCCs in the Western Cape. The team who entered and analysed the data reached consensus regarding the utility and feasibility of each item.


Results: Data were collected on 134 children. The omission of certain items from the database was identified. Some information was not reliable or readily available. Of the instruments identified to assess function, the classification systems were found to be reliable and useful, as were the performance scales. The WeeFIM, on the other hand, was lengthy and expensive, and was therefore discarded.
Discussion and conclusions: A list of items to be included was identified. Apart from an individual profile, it can be useful for service planning and monitoring, if incorporated into the central information system used to monitor the performance of all children. Without such inclusion, this most vulnerable population, despite court ruling, will not have their right to education adequately addressed.

Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

ZUURMOND, Maria
NYAPERA, Velma
MWENDA, Victoria
KISIA, James
RONO, Hilary
PALMER, Jennifer
2016

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Background: Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention.


Methods: Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation.


Results: The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families.


Conclusion: The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.

An Opportunity for Charity? A Catholic Tradition in Understanding Disability and Its Impact on Ministry

MASTERS, Anne
2016

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David Perry, the father of a boy with Down Syndrome, wrote an angry reaction to Pope Francis’ references to individuals and families living with disabilities in Amoris Laetitia. Perry is con- cerned about the limited perspective of persons with disabilities that is portrayed in the texts, which show families commended for their love and tolerance, with a lack of appreciation for the person with a disability as a person of interest, rather than an object of pity. He offers further reflections of caution and hope in response to words and actions of Pope Francis during a Mass celebrating disability awareness. Perry’s comments provide the starting point for reflecting on the image of persons with disabilities presented in Amoris Laetitia and a discussion of possibilities for charity to serve as a corrective for this and pastoral practice.

‘Everyone needs love’ – an interview study about perceptions of love in people with intellectual disability (ID)

MATTILA, Jenni
MÄÄTTÄ, Kaarina
UUSIAUTTI, Satu
2016

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How do people with intellectual disability (ID) perceive love and its role in their lives? The purpose of this study was to give voice to people with ID themselves and provide information about their needs for love. The study analysed how seven Finnish young adults with mild ID (5 women and 2 men) aged between 18 and 31 years described love and the meaning of love in their lives in semi-structured, qualitative theme interviews. The analysis was theory-led content analysis. The findings showed that the young adults with ID could describe love primarily as emotions and concrete acts, but perceived love as knowledge and skills more difficult to describe. However, the meaning of love was considered crucial and important for everyone’s well-being. The study suggests that the views and opinions of people with ID should be given more attention so that the support and guidance they are given would better need their needs. In addition, the study highlights everyone’s right to love? As per the style. Please suggest.

Virtual Reality Games as an Intervention for Children: A Pilot Study

Muneer, Reema
Saxena, Tanushree
Karanth, Prathibha
2015

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Purpose: This pilot study explored the use of virtual reality-based games as an enjoyable yet effective intervention to improve skills in children with developmental disabilities. Although the intervention was primarily targeted at the enhancement of motor skills, the children’s communication, cognitive and social/emotional skills were also monitored and changes, if any, were tracked during this period.

 

Methods: Therapists guided 5 children (4 boys with Autism Spectrum Disorder and 1 girl with Learning Disability) while they played carefully chosen games on the Xbox-Kinect, in individual sessions. Each child attended between 4 and 6 sessions over a span of one month. Therapists used a 4-point rating scale to evaluate specific skills in each of the four domains (motor, communication, cognitive and social/emotional) at the beginning of the intervention, and again at the end.

 

Results: Pre-and post-intervention scores revealed that the children made significant progress, not only in certain motor skills but also in skills from the cognitive and social/emotional domains. None of the children regressed in any of the skills monitored from the different domains.

 

Conclusions: Initial findings indicate that virtual reality games provide a useful platform for building interventions for children with developmental disabilities. There is much scope for future research in this area. The results of the study provide insights into the skills which might require prolonged, consistent inputs during the intervention, and the ones which might be acquired quickly through leaps in learning. The different ways in which children with varied developmental profiles might benefit from virtual reality-based interventions were also highlighted.

Cognitive rehabilitation groups: A thematic analysis of feasibility and perceived benefits for clients with moderate to severe traumatic brain injury living in the Western Cape

WILSON, Abigail
WILLS, Peta
PRETORIUS, Chrisma
SWARTZ, Leslie
2015

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Background: Traumatic brain injury (TBI) has a significant impact on the burden of care within the South African setting, impacting on the individual, the family, and the community as a whole. Often the consequences of TBI are permanent, resulting in numerous financial and emotional stressors.

 

Objective: This research focusses on the experience of outpatient cognitive rehabilitation groups for individuals who have suffered moderate to severe brain injuries within the South African setting.

 

Method: Participants with moderate to severe brain injury were required to attend five cognitive rehabilitation groups and engage in a semistructured interview. Qualitative data were examined via thematic analysis, to determine participants’ subjective experiences of group participation.

 

Results: There is a need within the South African setting for cognitive rehabilitation and support groups for individuals who have experienced a TBI. The benefits were notable for both the individuals attending and their support systems. In spite of the benefits there were notable limitations to attendance, including financial restrictions and transport limitations.

 

Conclusion: According to participants and their families, there is a scarcity of resources within the Western Cape for clients who have sustained a TBI. Despite limitations in capacity to attend there appears to be a need for structured outpatient cognitive rehabilitation programmes integrating the complex cognitive and emotional challenges faced by individuals with TBI and their families.

Twenty-five years of Community Living: Changes in Support Staff Perceptions

Wark, Stuart
Bleechmore, Kathleen
2015

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Purpose: The attitudes of support staff towards people with intellectual disability can greatly impact upon an individual’s quality of life and level of social inclusion. However, there are few studies that examine how perceptions and beliefs have changed within one organisation over the past few decades; a period during which there have been major social and government policy changes including deinstitutionalisation, inclusive education and the introduction of the United Nations Convention on the Rights of Persons with Disabilities. In conjunction with a 25th anniversary review of a community-living project in rural Australia, the current research replicated a study from 1987 that examined attitudes of staff with respect to people with intellectual disability, and thematically compared the findings of the two questionnaires.

 

Method: In 1987, a purpose-designed questionnaire was developed and completed by 15 direct care staff. This 10-item tool asked for basic demographic information and for the participants’ perceptions of people with intellectual disability and their own work roles in the disability sector. This tool was replicated in 2013 and was again completed by 15 direct care staff from the same organisation.

 

Results: The thematic analysis indicated a number of differences between the 1987 and 2013 cohorts in regard to their attitudes. The wide acceptance of the rights of people with intellectual disability was one key change. There was an age separation found within the 2013 cohort, with older participants (> 50 years of age) more likely to display similar attitudes to the 1987 group than the younger participants (<30 years old). Dealing with the problem of ageing-related issues, something that was not obvious 25 years ago, was now considered of major importance. There was evidence that disability support was increasingly recognised as a valid career choice, with a substantial difference in motivation found between the two age groups. Across both cohorts, direct exposure to the realities of the job was seen to be the best training for new employees.

 

Conclusions: The past 25 years have seen positive developments in both social acceptance and expectations for people with disabilities. Individuals are now viewed in a realistic but more positive light. As an exemplar of this change, concerns about individuals entering a consenting sexual relationship have changed dramatically, and what was once an issue of major concern is now no longer raised. While the training provided to staff has changed significantly over the past 25 years, on-the-job exposure to people with intellectual disability, combined with support from peers, is still perceived as vital for developing a quality support network.

Young people with intellectual disability—The role of self-advocacy in a transformed Swedish welfare system

TIDEMAN, Magnus
SVENSSON, Ove
2015

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A growing number of young people in Sweden with intellectual disability have organized themselves during the last 15 years in self-advocacy groups for socializing, empowerment, and expressing opposition to the norms and attitudes in a society that labels them as disabled. At the same time, the Swedish welfare system has transformed dramatically with processes of far-reaching individualization, closure of the major institutions, decentralization of responsibility from the state to local governments, and an emerging welfare market where service users are turned into customers. The aim of this article is to analyse and discuss the significance of self-advocacy in the new welfare context. Data were collected over a period of more than 10 years using repeated interviews with members of two self-advocacy groups and participation observations. Findings suggest that participation in self-advocacy groups opens up members for increasing health and well-being through new roles and identities, and it strengthens their control over everyday life. Support is still needed, however, but in new ways; otherwise, the restrictions of the institutions will simply be reconstructed in the new welfare system.

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.

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.

How musical engagement promotes well-being in education contexts: The case of a young man with profound and multiple disabilities

MCFERRAN, Katrina S
SHOEMARK, Helen
2013

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Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenome- nological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors’ construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts.

Problem Behaviour and Academic Grade Level Performance of Adjudicated Children with Juvenile Delinquency

VENKATESAN, S
SWARNALATHA, G
2013

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Purpose: This paper attempted to profile the contemporary grade level academic performance as well as the frequency, spread and intensity of problem behaviour in relation to a few associated variables, of children adjudged as juvenile delinquents in India.

 

Method: A cross-sectional exploratory survey design was employed, with randomised convenience sampling of 66 inmates, between 9 and 18 years of age, from two representative Observation Homes. To ascertain their current grade levels, a criterion referenced ‘Grade Level Assessment Protocol’ was prepared exclusively for this study. Another standardised ‘Behaviour Assessment Scale for Indian Children with Mental Retardation, Part B’ was used to profile their problem behaviour.

 

Results: The contemporary academic performance results satisfy the conventional two-grade discrepancy criteria, usually postulated for identifying children with learning disabilities. Among the associated variables examined in this study, inmates who were booked under sections of the Indian Penal Code showed significantly greater academic grade discrepancy compared to the other children. Similarly, poorer academic performance, greater grade discrepancy, as well as higher frequency, spread and intensity of reported problem behaviour were found among children from intact family backgrounds, where parents were illiterates or educated below primary school level, and more among boys than girls, and among those in the 10-12 year age group.

 

Conclusions: While these are tentative findings, they call attention to the need for extensive research on the possible links between academic performance, under achievement and learning disabilities, and juvenile delinquency in this country.

Music as the Means to Stimulate Novelty and Challenge Seeking in Persons with Intellectual Disability

SOLTANI, A
ROSLAN, S
ABDULLAH, M C
JAN, C C
2013

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Purpose: The main aim of the study was to determine whether challenge seeking behaviour could be increased by stimulating persons with intellectual disability with music. The intention was also to evaluate whether the participants would attempt to seek challenges when they felt bored with a music experience.

 

Method: Thirty adolescents and young adults with mild to moderate intellectual disability were randomly selected to take part in a repeated-measure experimental design, under three different conditions. In the first condition, the participants were provided adequate challenges through teaching fundamental musical skills. In the second condition, no optimal challenge was provided, and in the third condition, using special strategies, the participants were stimulated to look for novelty and challenge through involvement in creative musical tasks. Level of innovation, as an index of challenge seeking, was measured during the 8 minutes of free choice interval at the end of each condition.

 

Results: Using Friedman’s ANOVA and Wilcoxon signed-rank test, the findings showed that the low and statistically similar levels of challenge seeking behaviour in conditions 1 and 2 significantly increased to a high level in condition 3. It confirmed that participants with intellectual disability are capable of demonstrating challenge seeking behaviour if they are stimulated to do so. The results also confirmed that the tendency to demonstrate challenge seeking behaviour during a boring musical situation was low.

A Framework for Healthcare Provision to Children with Intellectual Disability

NUJUM, Z T
ANILKUMAR, T
VIJAYAKUMAR, K
ANISH, T
MOOSAN, H
2013

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Purpose: The Kudumbashree mission, an initiative of the Government of Kerala state in India, has collaborated with Local Self Governments to set up ‘Buds’, a special school system for individuals with intellectual disability. The objectives of this study were to evaluate the structure and functioning of ‘Buds’ schools, to identify the healthcare needs of the students, and to conceptualise a framework for healthcare provision.

 

Method: A cross-sectional survey was conducted among 202 children at 11 registered ‘Buds’ schools in Kerala. A multidisciplinary team consisting of a psychiatrist, public health personnel and a social worker from the Medical Colleges of Kerala, visited the institutions. Data collection consisted of abstraction from medical records, interviews with parents, and clinical assessment and prescription of intervention by the specialists concerned. A pre-tested semi- structured questionnaire was used for every child. Using both quantitative and qualitative techniques, the public health personnel in the team evaluated the structure and functioning of the schools.

 

Results: The most commonly associated condition was epilepsy, seen in 11.9% of the children, while 28.2% had behavioural problems. The medicines needed were mainly anti-epileptics and drugs for behavioural problems. Interventions for self help and social skill training were also among the important requirements. The infrastructure and other facilities were poor in many schools, with the average student to teacher ratio at 14:1. While these institutions were well utilised, functioning was good only in 27.2% of the schools. Healthcare services and visits by healthcare personnel were far from adequate. This study proposes a framework in which the Medical Colleges and Health Services can function together to deliver healthcare services to children at these schools, with linkages from the District Mental Health Programme (DMHP).

 

Conclusion and Recommendation: Evidence that these schools are well utilised indicates a need to propagate this initiative in other areas of the state, country and other countries. However, improvements in infrastructure, human resources and other logistics are required. Besides, the healthcare needs of these children have to be addressed. A comprehensive healthcare programme through the existing system, using a multidisciplinary approach, needs to be developed.

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