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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

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”.

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.

This document provides a rapid review of the evidence on approaches to ensuring people with disabilities are reached through nutrition programming, focusing on children, adolescents, and women of reproductive age in low and middle-income countries (LMICs). The purpose of this review is to support DFID advisers and partners designing and implementing programmes with nutrition components to ensure they are more inclusive of people with disabilities. After outlining the methodology in Section 2, Section 3 includes an overview of available evidence on what works to ensure nutrition programming reaches people with disabilities, as well as an assessment of the strength of the evidence, and highlighting key research gaps. Section 4 provides a summary on factors affecting access for people with disabilities, and Section 5 concludes by drawing a series of considerations for policy and programming to ensure that people with disabilities are not left behind when it comes to government-led and development partner-led programmes to tackle malnutrition. Case studies of approaches are included in annex 1 to give further insights on promising practices and key learnings

Purpose: Over the past decade there has been a growing focus on offering appropriate training to healthcare professionals and caregivers to support safe feeding practices for children with cerebral palsy. Early and consistent multidisciplinary intervention is required to minimise the risks of aspiration pneumonia. The high incidence of complications from aspiration pneumonia among children with cerebral palsy in Sri Lanka has made it necessary to conduct low-cost multidisciplinary team-led dysphagia awareness workshops for healthcare professionals and caregivers.

Method: A group of 38 Public Health Midwives (PHMs) was offered an experiential workshop by a small multidisciplinary team (MDT). To determine changes in knowledge, a self-administered questionnaire that included a video-based client scenario was administered pre- and post-workshop. The data were analysed statistically using non-parametric within-participant t-tests.

Results: The post-workshop responses to the questionnaire indicated a significant increase in the level of knowledge. This included positive changes in the understanding and knowledge of cerebral palsy (t (37) =-7.44, p=.000), effects of cerebral palsy on eating and drinking skills (t (37) =-3.91, p=.000), positioning (t (37) = -9.85, p=.000), aspiration (t (37) =-3.46, p=.001), food categorisation (t (37), -3.85, p=.000) and client video observation (t (37)-3.91, p=.000) at a p=.05 level of significance. While there was also an increase in the knowledge on general guidelines during mealtimes, this did not reach statistical significance.

Conclusion: The low-cost MDT-led experiential workshop was effective in increasing knowledge of feeding and dysphagia-related issues in cerebral palsy among a group of PHMs. This workshop could serve as a model for training PHMs and Community-Health Workers across the country in order to reach the Sustainable Development Goal of ‘good health and well-being’ for children with cerebral palsy and all children experiencing feeding difficulties. Follow-up workshops and continued professional development courses for midwives on dysphagia care are strongly recommended, in addition to collaborative clinical practice.

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.

This publication draws together research and learning from around the world, in papers which highlight the need for inclusive education and some of the steps being taken to implement it. 

The settings brought to life here reveal the work of teachers, leaders and policy makers in geographically and culturally diverse situations. In each of the chapters we see the challenges they face and the significant efforts they make to ensure access to, and engagement with, a quality education for all children. The collection includes 15 case studies:

Special educational needs and disability section:

• Teaching for All: mainstreaming inclusive education in South Africa
• Successful inclusive education starts with teachers: what have we learned? A multi-country case study
• Teaching English as a second language to the visually impaired in disadvantaged contexts: a case study from Chiapas, Mexico
• The Theatre of the Classroom

Displaced populations section

• Teaching on the run: safe learning spaces for internally displaced persons
• Developing resilience through English language teaching in youth centres across Iraq
• Capacity building for inclusive classrooms: the Living Together training
• Integrating Syrian refugee children and their parents into Lebanese early education systems

Gender and inclusion in the classroom section

• A gender equality and social inclusion approach to teaching and learning: lessons from the Girls’ Education Challenge
• Teacher development and gender equality in five Nigerian states
• Creating gender-inclusive schools in Turkey: the ETCEP project in action
• Education, English language, and girls’ development: exploring gender-responsive policies and practices in Nepal

Minority ethnic groups in the classroom

• Social inclusion and the role of English language education: making a transition from school to higher education in India
• Storytelling for diverse voices
• Inclusive education in marginalised contexts: the San and Ovahimba learners in Namibia

The Field Manual has been created to provide technical guidance for those with medical training.  It enables the user to adapt their knowledge to the treatment of severely injured children.  It has paediatric-specific sections on:

• Pre-hospital care and transport
• Damage control resuscitation, surgery and intensive care
• Surgery (thoraco-abdominal, limb, burns)
• Neurological injury
• Ward care
• Rehabilitation
• Psychosocial support
• Ethics and safeguarding

The Manual is also intended for use by anyone who is required to plan for the treatment of severely injured children, so they can see the resources, training and equipment that is required in a medical facility likely to receive blast injured children.

Purpose: Cerebral palsy (CP) is the most common chronic childhood disability, but in most cases the primary causes are largely unknown. The study sought to determine the perceptions about the causes and risk factors of CP among primary caregivers of children with CP in the Ashanti region of Ghana.

Method: A descriptive study design with a quantitative approach was used. A simple random sampling technique was adopted to select 100 participants from among the primary caregivers whose children with CP were attending the physiotherapy unit of the Komfo Anokye Teaching Hospital in Ashanti region.  A structured questionnaire was administered to the respondents and data were analysed using SPSS version 21.0.

Results: CP was perceived as a disease caused by witchcraft (40%), punishment from God or Gods (12%), or by being cursed (10%). More than half (54%) of the respondents did not know of any risk factor for CP.

Conclusion and Implications: The perceived negative causes, as well as ignorance about the risk factors for CP, could result in primary caregivers stopping their children with CP from availing of the physiotherapy services. Public education and campaigns should focus on the causes and risk factors for CP, in order to change negative perceptions and improve awareness among the general public.