Resources search

Prevalence, identification, and interference of pain in young children with cerebral palsy: a population-based study

TEDROFF, Kristina
GYLLENSVARD, Mirja
LOWING, Kristina
September 2019

Expand view

Objective: To explore the presence of pain, how pain was addressed by physicians and parents, and how pain affected everyday life in young children with cerebral palsy (CP).

 

Methods: Children with CP, aged 5–10 years, participated in this cross-sectional study. Data were collected from medical records spanning a period of two years and by a standardized parental interview that included six structured questions and the Pain Interference Index.

 

Results: A total of 118 children, with a mean age of 7.4 years (SD 1.5), participated in the study. The parents of 81% of these children were interviewed. Pain was reported in 52% of the children, and pain was present at all severity levels. The prescription of analgesics was documented in 25% of these children’s medical records. Fifty-nine percent of the children with pain received analgesics from their parents. Pain restricted the children’s everyday lives particularly concerning sleep, school work and being with friends.

 

Conclusions: Half of this group of young children with CP were reported to have pain. Pain restricted the children's everyday lives and seemed to be under-treated. If pain can be addressed early, the children's everyday lives are likely to be improved.

How do we ensure that children with disabilities are not bullied in school?

HUNT, Xanthe
August 2019

Expand view

Question & problem

Students with disabilities are bullied more often than their typically developing peers. Students in schools for children with disabilities may be victimized more often than students with disabilities in inclusive settings. Being bullied, which can take forms which are physical, verbal, indirect (relational, emotional, or social), and/or sexual, is associated with negative academic, social, and psychological outcomes for the victim. This evidence brief summarises what we know about how to prevent bullying of children with disabilities.

What works to improve educational outcomes of children with disabilities in school?

HUNT, Xanthe
August 2019

Expand view

Question & problem

For people with disabilities, a major determinant of social and economic outcomes in adulthood, is access to, and the adequacy of, education in childhood and adolescence. Yet, children with disabilities are less likely to be enrolled in, or complete, school. Further, there are substantial gaps in the evidence regarding what works to improve educational outcomes of children with disabilities in school. Educational outcomes, here include academic achievement, pass rates, and grade completion. Many studies measure child behaviour and proxy or distal outcomes in response to various interventions, but not actually how children with disabilities do in these domains. This is particularly the case in LMIC, where there is a dearth data about the effects of educational policies and practices on child educational outcomes.

How do we provide mental health support to children with psychosocial disabilities in school?

QURESH, Onaiza
August 2019

Expand view

Question & problem

It is estimated that approximately 10-20% of children, adolescents and young people (under the age of 18) worldwide have a disabling mental health condition. Approximately two-thirds of the global youth population goes to school for a significant proportion of the day. The idea of delivering mental health support in the setting has gained prominence as a way to increase the coverage and accessibility of mental health support for children. While there is a wealth of evidence around school mental health approaches in HIC, there is limited information with regards to their impact in low- and middle-income settings. This evidence brief explores what has worked for the delivery of school mental health initiatives in diverse settings, as well as evidence-based recommendations to strengthen them.

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

BECKERS, Laura W M E
SMEETS, Rob J E M
VAN DER BURG, Jan J W
August 2019

Expand view

Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

 

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

 

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

 

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

The experiences of children with intellectual and developmental disabilities in inclusive schools in Accra, Ghana

OKYERE, Christiana
ALDERSEY, Heather M.
LYSAGT, Rosemary
2019

Expand view

Background: Inclusive education is internationally recognised as the best strategy for providing equitable quality education to all children. However, because of the unique challenges they often present, children with intellectual and developmental disabilities (IDDs) are often excluded from inclusive schools. To date, limited research on inclusion has been conducted involving children with IDD as active participants.

 

Objectives: The study sought to understand the experiences of children with IDDs in learning in inclusive schools in Accra, Ghana.

 

Method: A qualitative descriptive design was utilised with 16 children with IDDs enrolled in inclusive schools in Accra, Ghana. Participants were recruited through purposive sampling and data were collected using classroom observations, the draw-and-write technique and semi-structured interviews. The data were analysed to identify themes as they emerged.

 

Results: Children’s experiences in inclusive schools were identified along three major themes: (1) individual characteristics, (2) immediate environments and (3) interactional patterns. Insights from children’s experiences reveal that they faced challenges including corporal punishment for slow performance, victimisation and low family support relating to their learning.

 

Conclusion: Although children with IDDs receive peer support in inclusion, they experience diverse challenges including peer victimisation, corporal punishment and low family and teacher support in their learning. Improvement in inclusive best practices for children with IDD requires systematic efforts by diverse stakeholders to address identified challenges.

 

 

African Journal of Disability, Vol 8, 2019

Between duty and right: disabled schoolchildren and teachers’ ableist manifestations in Sweden

GILLBERG, Claudia
PETTERSSON, Andreas
2019

Expand view

In this article we discuss ableist manifestations about chronically ill and disabled schoolchildren in Sweden. On claiming their right to schooling, these children risk being excluded due to not conforming with norms while being refused alternative formats that would enable participation. They are then accused of not attending school and construed as problematic. Parents are derided as mollycoddling perpetrators by teachers who perceive themselves as superior knowers of disability and illness, polarising an already infected school debate. Alternative formats for participation are derided, claiming that certain disabilities do not exist or that parents exaggerate their children’s symptoms. We concede that teachers’ poor work environments due to underfunding and unreasonable workloads are problematic, but we are adamant that unfavourable work conditions must not entail unethical professional conduct. We hope this article will contribute to putting the situation of chronically ill and disabled schoolchildren in Sweden on the radar of Critical Disability Studies as well as in relevant fields of practice and that it might stimulate a change in public debate.

An amalgam of ideals – images of inclusion in the Salamanca Statement

MAGNÚSSON, Gunnlaugur
2019

Expand view

The Salamanca Statement is a primary point of departure in research and policy on inclusive education. However, several problems have surfaced in the 25 years since its publication. In particular, several different interpretations of the concept of inclusive education and its enactment in practice have arisen. For instance, the definition of the pupil groups in focus varies greatly. There are also varying definitions of the importance of pupil-placement, when it comes to organisation of inclusive education. Using a theoretical framework combining Bacchi’s [1999. Women, Policy and Politics. The Construction of Policy Problems. London: Sage Publications] poststructural policy-analysis and concepts from Popkewitz [2009. “Curriculum Study, Curriculum History, and Curriculum Theory: The Reason of Reason.” Journal of Curriculum Studies 41 (3): 301–319. doi:10.1080/00220270902777021], this article illustrates that The Salamanca Statement allows for a variety of interpretations of inclusion. As a policy-concept, inclusion encompasses an amalgam of political ideals, including welfare-state ideals where education is viewed as a public-good, as well as market-ideals of education as a private-good. Policies of inclusion also define the desired citizen, through categories of disadvantaged children, the ones excluded but to be included for their own good as well as for the good of the future society. The conclusions are that researchers and policy-makers should elucidate what they mean by inclusion with for instance moral- and practical arguments rather than vague references to The Salamanca Statement.

Supporting the enactment of inclusive pedagogy in a primary school

BRENNAN, Aoife
KING, Fiona
TRAVERS, Joe
2019

Expand view

While inclusion has generally been accepted as orthodoxy, a knowledge – practice gap remains which indicates a need to focus on inclusive pedagogy. This paper explores how teachers in the Republic of Ireland primary school were supported to develop inclusive pedagogy to meet the needs of learners with special educational needs (SEN). It is underpinned by a conceptual framework which combines an inclusive pedagogical approach and key principles of effective professional development (PD) arising from the literature, which informed the development of a professional learning community (PLC) for inclusive practice in a primary school. The impact of the PD on teachers’ professional practice was explored using an evidence-based evaluation framework. Analysis of interview and observation data evidenced that engagement with inclusive pedagogy in a PLC, underpinned by critical dialogue and public sharing of work, positively impacted teacher attitudes, beliefs, efficacy and inclusive practice. This research offers a model of support for enacting inclusive pedagogy.

Children with Cerebral Palsy in Bangladesh: Their Contribution to the Development of a Rehabilitation Training Programme

ZUURMOND, Maria
MAHMUD, Ilias
HARTLEY, Sally
2019

Expand view

Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.

 

Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information.

 

Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course.

 

Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and could be useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development.

Barriers in Dental Care Delivery for Children with Special Needs in Chennai, India: A Mixed Method Research

KRISHNAN, Lakshmi
IYER, Kiran
KUMAR, Parangimalai Diwakar Madan Madan
2019

Expand view

Purpose: The study aimed to assess the barriers faced by children with disability, both qualitatively and quantitatively, from the perspectives of caregivers and dental practitioners.

 

Methods: A concurrent mixed method design was used. A sample of 195 dentists and 100 caregivers was selected through convenience sampling. A prevalidated questionnaire was used to assess the barriers faced by the children with disability in their care. Focus group discussions and in-depth interviews were conducted with caregivers. Descriptive statistics were computed using SPSS version 20 and thematic analysis of qualitative data was done using NVivo software.

 

Results: 195 dentists and 100 caregivers responded to the survey. Majority of practising dentists (83.7%) reported inadequate training in handling children with special needs, while caregivers (38%) reported fear of dentist among the children as major barriers experienced in utilising dental services.

 

Conclusion and Implications: This study helps to identify the barriers faced by children with special healthcare needs. The findings highlight the need for hands-on training to be incorporated into the dental curriculum. It also suggests that improvements be made in dental clinics to accommodate these children in comfort. Due to limitations of the study, it is suggested that there is a need for further longitudinal studies that involve other family members of children with disability.

Childhood factors predict participation of young adults with cerebral palsy in domestic life and interpersonal relationships: a prospective cohort study

VAN GORP, Marloes
ROEBROECK, Marij E
VAN ECK, Mirjam
VOORMAN, Jeanine M
TWISK, Jos W R
Dallmeijer, Annet J
Van Wely, Leontien
May 2019

Expand view

Purpose: To determine childhood predictors of participation in domestic life and interpersonal relationships of young adults with cerebral palsy (CP).

 

Materials and methods: This 13-year follow-up of an existing cohort (baseline age 9–13 years) included 67 young adults with CP (age 21–27 years). The Vineland adaptive behavior scales (VABS) and Life Habits questionnaire were used to assess attendance and difficulty in participation in domestic life and interpersonal relationships. Baseline factors were categorised according to the international classification of functioning, disability, and health. Stepwise multiple linear regression analyses determined significant predictors (p < 0.05).

 

Results: Lower manual ability, intellectual disability (ID), epilepsy and lower motor capacity predicted decreased future participation in domestic life, and/or interpersonal relationships (explained variance R2 = 67–87%), whereas no association was found with environmental and personal factors. Extending models with baseline fine motor skills, communication, and interpersonal relationships increased R2 to 79–90%.

 

Conclusions: Childhood factors account for 79–90% of the variation in young adult participation in domestic life and interpersonal relationships of individuals with CP. Children with limited motor capacity, low manual ability, ID, or epilepsy are at risk for restrictions in participation in young adulthood. Addressing fine motor, communication, and social skills in paediatric rehabilitation might promote young adult participation.

Family-based activity settings of children in a low-income African context

BALTON, Sadna
UYS, Kitty
ALANT, Erna
2019

Expand view

Background: There has been an overwhelming call to improve the understanding of how children develop within an African context as Euro-American definitions of competence have been uncritically adopted as the norm for children in Africa. The activities that children engage in within the family setting are seen as important to understand how children develop within context. The use of activity settings is closely aligned with a strengths-based perspective of family-centred practice and contributes to improved sustainability of intervention.

 

Objectives: This study that was conducted in Soweto, South Africa, aims to describe activity settings that typically developing young children in low-income African contexts participate in.

 

Method: A descriptive design using structured interviews was utilised to obtain information about activity settings that children aged 3–5 years and 11 months engaged in. Structured interviews with 90 caregivers were conducted.

 

Results: Findings show that children participate in a variety of activities with varied participation levels. The types of activities are dependent on the context and perceptions of caregivers.

 

Conclusion: These findings draw attention to understanding activities that children engage in within the family context.

 

African Journal of Disability, Vol 8, 2019

Lived experiences of caregivers of children with autism spectrum disorder in Kenya

CLOETE, Lizahn G
OBAIGWA, Evans O.
2019

Expand view

Background: Autism spectrum disorder (ASD) is a global public health concern. In African countries such as Kenya, there is a greater need for establishing support services for developmental disorders such as ASD. The emotional, social and economic burden of ASD on caregivers is unknown because of a number of challenges. Citizens of Kenya have a unique view of disability and inclusion.

 

Objectives: To explore the perspectives of caregivers who are responsible for caring for both family and children living with ASD and to highlight the needs of children with ASD as well as the needs of their caregivers.

 

Method: A qualitative, descriptive phenomenological study utilising focus group discussions (FGDs) was conducted. Verbatim transcription was used. QSR N ’Vivo 10 was used to organise and analyse the data. Content analysis was used to identify important ideas and concepts.

 

Results: One theme, namely ‘the burden of caring for children with ASD’, was identified. Children with ASD and their caregivers experience isolation and stigmatisation.

 

Conclusion: Occupational therapists in Kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with ASD and their families. Responsive and context-appropriate occupational therapy interventions may begin to address service barriers.

 

 

African Journal of Disability, Vol 8, 2019

South Korean elementary school teachers’ experiences of inclusive education concerning students with a multicultural background

KIM, Soo-Kyung
RUNDGREN, Shu-Nu Chang
2019

Expand view

Due to the increase of economic immigration over the last few decades, South Korea has rapidly become a multi-ethnic society. The number of students with a multicultural background (SMBs) has increased more than tenfold in the past ten years. Research has revealed that despite physical inclusion of SMBs in general classrooms, SMBs tend to struggle at school as a result of language difficulties, academic underachievement, and social isolation. Shedding light on the Salamanca thinking, this study aims to investigate how teachers’ experiences of SMBs vary according to school cultures. Thirteen teachers from three schools (with different school cultures) were invited to participate in qualitative semi-structured interviews. It was revealed that the teachers, who worked in the different school cultures, expressed differently with regard to (1) teachers’ reasoning about SMBs’ struggles, (2) teachers’ professional knowledge and strategic practices, (3) collaboration with a multicultural education supervising teacher (MEST), and (4) dependency upon external support. The school judged to be contributing to ‘true’ inclusion was characterised by ample support from a MEST and the creation of an inclusive learning environment for SMBs as a whole-school approach. What can further ‘true’ inclusion of SMBs in elementary schools and the implications thereof are discussed.

Managing oneself or managing together? Parents’ perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

WONG CHONG, Ruud
WILLEMEN, Agnes M
VOORMAN, Jeanine
KETELAAR. Marjolijn
BECHER, Jules
VERHEIJDEN, Johannes
SCHUENGEL, Carlo
April 2019

Expand view

Purpose: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions.

 

Materials and methods: Using a mixed-methods strategy, first variations in self-management behaviors, motivation and perceived autonomy support were assessed with a cross-sectional survey among parents of children with chronic conditions (N = 239). Statistical analysis involved descriptive statistics and univariate analysis of variance. The survey was followed by 18 in-depth interviews with parents. Thematic analysis was used to recognize relevant topics in the qualitative data.

 

Results: In the survey most parents reported being active self-managers. Nevertheless, only one third persisted in self-management when under stress. Autonomous motivation was strongly associated with parental self-management. In the interviews, parents mentioned attuning with professionals and finding balance as important aspects of self-management. To facilitate self-management, professionals were expected to have expert knowledge, be engaged and empathic.

 

Conclusion: From the perspective of parents, self-management should be viewed as a collaborative effort in which they are supported by professionals, rather than having to manage it “by themselves”.

Parental satisfaction with inclusion in physical education

WILHELMSEN, Terese
SØRENSEN, M. S
SEIPPEL, Ø
BLOCK, M. E
2019

Expand view

Knowledge is scarce on parental satisfaction with the inclusion of children with disabilities in physical education (PE). This study explored how parents’ satisfaction with inclusion in PE was associated with parental and child interpersonal and intrapersonal characteristics. Seventy-two parents of children with disabilities participated in the survey-based study. The results of the ordinary least square regression (OLS) and quantile regression (QR) indicated that the parents’ satisfaction with social inclusion in PE was associated with their attitudes towards inclusion in PE, perceived PE-related information sharing, and the type of disability and degree of physical inclusion. Parents’ satisfaction with pedagogical inclusion of children in PE was associated with their attitudes towards inclusion in PE, PE-related information sharing, and the children’s degrees of disability and physical inclusion. Furthermore, the QR estimates indicated that the explanatory strength of parental attitudes towards inclusion in PE varied with the degree of parental satisfaction with social and pedagogical inclusion of their children in PE. Practical and methodological implications of the findings are discussed.

Views of children with cerebral palsy and their parents on the effectiveness and acceptability of intensive speech therapy

PENNINGTON, Lindsay
RAUCH, Rosie
SMITH, Johanna
BRITTAIN, Katie
March 2019

Expand view

Purpose: To understand children and parents’ views of the effectiveness and acceptability of intensive dysarthria therapy.

 

Materials and Methods: Twenty-two children with cerebral palsy and dysarthria joined a pilot RCT comparing intensive therapy and usual care. Children (n = 11) allocated to dysarthria therapy comprising three 40-minute sessions per week for six weeks and their parents (n = 11) were interviewed two weeks before and six weeks after therapy. Interviews were transcribed verbatim and analysed thematically.

 

Results: Analysis revealed five themes: Motivations, My new voice; The new me; I can do more; Success rooted in therapy design. Children had received little therapy for speech and were keen to improve intelligibility. Overall, therapy was viewed as effective. Participants described changes in children’s speech production, which they associated with increased speech intelligibility. Children were described as more confident following the therapy, to have more successful conversations, with a wider range of partners in more environments, thereby increasing their social participation. The programme was viewed as acceptable, despite its intensity, due to the short term commitment and wider benefits for the child. Parents valued the organised structure and individualisation of the programme and inclusion in the therapy process.

 

Conclusion: Families found the intervention acceptable and effective. A definitive trial of its clinical effectiveness is warranted.

A Document Review of Exclusionary Practices in the Context of Australian School Education Policy

IACONO,Teresa
KEEFFE, Mary
KENNY, Amanda
MCKINSTRY, Carol
2019

Expand view

Internationally, there is a commitment to inclusive education for students with disability. In Australia, equality of access to mainstream schools is a key policy feature, with educational exclusion of children with disability being unlawful. In this review, the aim was to identify and analyze contemporary documents that point to failures in inclusive policy and legislation in Australia and the state of Victoria by demonstrating educational exclusion of school students with disability. A search of the gray literature was conducted to identify relevant documents from 2010 to 2017. Reference lists of retrieved documents were also searched for other sources. The review included 23 documents and findings demonstrated that the needs of children and families are often not met, with a disconnection evident between inclusive educational policy, legislation, and practices that exclude children with disability from mainstream education. Restrictive practices and gatekeeping act to dissuade families from enrolling children in mainstream education, with many seeking enrolment in special schools. However, concerns with special school practices, such as the use of restrictive interventions have been documented. Parents have resorted to homeschooling, with associated emotional and economic consequences. Tensions between schools and parents were evident, with parents not always having the opportunity to be fully involved in decision-making processes and planning. The key finding of this review was a clear gap between policy and legislative intentions and practices in schools. Lack of clarity on reasonable adjustments and an underpinning research evidence base to policy results in schools being left to develop their own practices. Strong leadership is needed from principals, and a whole of school commitment, to traverse policy practice gaps that continue to impact on the ability of children with disability to be well-supported in accessing mainstream schools.

Inclusion and standards achievement: the presence of pupils identified as having special needs as a moderating effect on the national mathematics standards achievements of their classmates

KRAMMER, Mathias
GASTEIGER-KLICPERA, Barbara
HOLZINGER, Andrea
WOHLHART, David
2019

Expand view

This article investigates the relationship between the achievement level of students in classes and the presence of students identified as having special needs in inclusive settings. In particular, it examines whether the presence of students with special educational needs in inclusive classrooms has an effect on the national mathematics standards achievement of their fellow students. In order to do so, the national standard scores of approximately 75,000 fourth graders in mathematics were used as dependent variable in multi-level regression modelling. As independent variables at class level the number of students with special needs and at the individual level socio-economic, cultural and ethnic background variables were used together with gender and age. Results show only a very small effect of the presence of students with special needs on the national mathematics standard scores of their classmates. The effect can be either positive or negative depending on further class conditions.

Pages

E-bulletin