'Mingling together': promoting the social inclusion of disabled children and young people during the school holidays

The promotion of social inclusion of disabled children and their families is currently high on the UK political agenda. Research shows that disabled children and their families are highly disadvantaged, both economically and socially. This paper reports some of the findings of a qualitative study, entitled On Holiday!, which involved analysing the views of 297 people across six local authority research sites in England including 86 disabled children and young people. The study showed that many disabled children and their families experienced high levels of social isolation and exclusion during out-of-school periods and during the school holidays in particular. The paper recounts some of the experiences of disabled young people and their families and ways in which local authorities can promote their social inclusion. We argue that disabled young people and their families can only be truly socially included and empowered when all levels of the local authority (managers, officers and elected members) recognize the rights and entitlements of disabled children and have the political will and commitment to implement them. © 2009 Blackwell Publishing Ltd

The school lives of children and young people with a spinal cord injury

This research study was carried out by the Thomas Coram Research Unit, Institute of Education, University of London, between January and July 2008.The study was funded by The Back-Up Trust, an organisation working with spinally injured adults and children, as part of their Schools Project. The main purpose of the study was to explore the experiences of children and young people with a SCI in mainstream school. This was to inform The Back-Up Trust’s Schools Project, which has the aim of improving the quality of school provision for children with a spinal cord injury. The study asked young people, parents and carers about their positive and negative experiences. It also aimed to investigate schools’ experiences of working with young people with a SCI and the challenges and factors that help them work effectively with children with a SCI

Children with cerebral palsy in bangladesh:Their contribution to the development of a rehabilitation training programme

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/caregiver 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 to inform the training programme. Methods: Qualitative data was collected from 12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the 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 is 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

The effectiveness of youth centers in increasing use of sexual and reproductive health services: a systematic review.

This study presents findings from a systematic review of the evidence regarding the effectiveness of youth centers in increasing use of sexual and reproductive health (SRH) services in lower- and middle-income countries. Evidence from peer-reviewed and gray literature between 1990 and 2010 was reviewed. After the screening of 3,769 citations, 21 studies reporting on 17 youth center programs were included, and were ranked by strength of evidence. Considerable consistency in findings across studies was observed. Youth centers generally served a relatively small proportion of young people living nearby. The main users were young men attending school or college, with a significant proportion older than the target age. Users of the on-site SRH services were predominantly young women, with a significant proportion older than the target age group. Uptake of services was generally low. Despite widespread emphasis on youth centers as a strategy for encouraging young people to access SRH services, results from these studies have not been encouraging, and cost-effectiveness for these purposes is likely to be low

Reasons for low uptake of referrals to ear and hearing services for children in Malawi.

BACKGROUND: Early detection and appropriate intervention for children with hearing impairment is important for maximizing functioning and quality of life. The lack of ear and hearing services in low income countries is a significant challenge, however, evidence suggests that even where such services are available, and children are referred to them, uptake is low. The aim of this study was to assess uptake of and barriers to referrals to ear and hearing services for children in Thyolo District, Malawi. METHODS: This was a mixed methods study. A survey was conducted with 170 caregivers of children who were referred for ear and hearing services during community-based screening camps to assess whether they had attended their referral and reasons for non-attendance. Semi-structured interviews were conducted with 23 caregivers of children who did not take up their referral to explore in-depth the reasons for non-uptake. In addition, 15 stakeholders were interviewed. Thematic analysis of the interview data was conducted and emerging trends were analysed. RESULTS: Referral uptake was very low with only 5 out of 150 (3%) children attending. Seven main interacting themes for non-uptake of referral were identified in the semi-structured interviews: location of the hospital, lack of transport, other indirect costs of seeking care, fear and uncertainty about the referral hospital, procedural problems within the camps, awareness and understanding of hearing loss, and lack of visibility and availability of services. CONCLUSION: This study has highlighted a range of interacting challenges faced by families in accessing ear and hearing services in this setting. Understanding these context specific barriers to non-uptake of ear and hearing services is important for designing appropriate interventions to increase uptake

The impact of disability on the lives of children; cross-sectional data including 8,900 children with disabilities and 898,834 children without disabilities across 30 countries.

BACKGROUND: Children with disabilities are widely believed to be less likely to attend school or access health care, and more vulnerable to poverty. There is currently little large-scale or internationally comparable evidence to support these claims. The aim of this study was to investigate the impact of disability on the lives of children sponsored by Plan International across 30 countries. METHODS AND FINDINGS: We conducted a cross-sectional survey including 907,734 children aged 0-17 participating in the Plan International Sponsorship Programme across 30 countries in 2012. Parents/guardians were interviewed using standardised questionnaires including information on: age, sex, health, education, poverty, and water and sanitation facilities. Disability was assessed through a single question and information was collected on type of impairment. The dataset included 8,900 children with reported disabilities across 30 countries. The prevalence of disability ranged from 0.4%-3.0% and was higher in boys than girls in 22 of the 30 countries assessed - generally in the range of 1.3-1.4 fold higher. Children with disabilities were much less likely to attend formal education in comparison to children without disabilities in each of the 30 countries, with age-sex adjusted odds ratios exceeding 10 for nearly half of the countries. This relationship varied by impairment type. Among those attending school, children with disabilities were at a lower level of schooling for their age compared to children without disabilities. Children with disabilities were more likely to report experiencing a serious illness in the last 12 months, except in Niger. There was no clear relationship between disability and poverty. CONCLUSIONS: Children with disabilities are at risk of not fulfilling their educational potential and are more vulnerable to serious illness. This exclusion is likely to have a long-term deleterious impact on their lives unless services are adapted to promote their inclusion

Congenital Zika Syndrome-Assessing the Need for a Family Support Programme in Brazil.

The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response

Malnutrition and Childhood Disability in Turkana, Kenya: Results from a Case-Control Study.

BACKGROUND: Children with disabilities may be particularly vulnerable to malnutrition, as a result of exclusions and feeding difficulties. However, there is limited evidence currently available on this subject. METHODS: A population-based case-control study was conducted in Turkana County, Kenya, between July and August 2013. Key informants in the community identified children aged 6 months to 10 years who they believed may have a disability. These children were screened by a questionnaire (UNICEF-Washington Group) and assessed by a paediatrician to confirm whether they had a disability and the type. Two controls without disabilities were selected per case: A sibling control (sibling nearest in age) and a neighbourhood control (nearest neighbour within one year of age). The caregiver completed a questionnaire on behalf of the child (e.g. information on feeding, poverty, illness, education), and anthropometric measures were taken. We undertook multivariable logistic and linear regression analyses to estimate the relationship between disability and malnutrition. RESULTS: The study included 311 cases with disabilities, 196 sibling controls and 300 neighbour controls. Children with disabilities were more likely to report a range of feeding difficulties. They were 1.6-2.9 times more likely to have malnutrition in comparison to neighbour controls or family controls, including general malnutrition (low weight for age), stunting (low height for age), low body mass index (BMI) or low mid upper arm circumference (MUAC) for age. Children with disabilities were almost twice as likely to have wasting (low weight for height) in comparison to neighbour controls (OR = 1.9, 95% CI 1.1-3.2), but this difference was not apparent compared with siblings (OR = 1.5, 95% CI 0.8-2.7). Children with disabilities also faced other exclusions. For instance those aged 5+ were much more likely not to attend school than neighbour controls (OR = 8.5, 95% CI 4.3-16.9). CONCLUSIONS: Children with disabilities were particularly vulnerable to malnutrition, even within this area of food insecurity and widespread malnutrition. Efforts need to be made to include children with disabilities within food supplementation programmes, and school based programmes alone may be inadequate to meet this need. Exclusion of children with disabilities from education is also a priority area to be addressed