Maria Zuurmond

The relationship between HIV and prevalence of disabilities in sub‐Saharan Africa: systematic review (FA)

To systematically review evidence on the prevalence and risk of disabilities among children and adults living with HIV in sub‐Saharan Africa.

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.

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.

Violence against primary school children with disabilities in Uganda: a cross-sectional study

Background150 million children live with disabilities globally, and a recent systematic review found 3 to 4 times the levels of violence versus non-disabled children in high income countries. However, almost nothing is known about violence against disabled children in lower income countries. We aim to explore the prevalence, patterns and risk factors for physical, sexual and emotional violence among disabled children attending primary school in Luwero District, Uganda.MethodsWe performed a secondary analysis of data from the baseline survey of the Good Schools Study. 3706 children and young adolescents aged 11-14 were randomly sampled from 42 primary schools. Descriptive statistics were computed and logistic regression models fitted.Results8.8% of boys and 7.6% of girls reported a disability. Levels of violence against both disabled and non-disabled children were extremely high. Disabled girls report slightly more physical (99.1% vs 94.6%, p = 0.010) and considerably more sexual violence (23.6% vs 12.3%, p = 0.002) than non-disabled girls; for disabled and non-disabled boys, levels are not statistically different. The school environment is one of the main venues at which violence is occurring, but patterns differ by sex. Risk factors for violence are similar between disabled and non-disabled students.ConclusionsIn Uganda, disabled girls are at particular risk of violence, notably sexual violence. Schools may be a promising venue for intervention delivery. Further research on the epidemiology and prevention of violence against disabled and non-disabled children in low income countries is urgently needed.

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.

Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana

Background In low and middle-income settings, where access to support and rehabilitation services for children with disabilities are often lacking, the evidence base for community initiatives is limited. This study aimed to explore the impact of a community-based training programme for caregivers of children with cerebral palsy in Ghana. Methods A pre and post evaluation of an 11-month participatory training programme (“Getting to Know Cerebral Palsy”) offered through a parent group model, was conducted. Eight community groups, consisting of a total of 75 caregivers and their children with cerebral palsy (aged 18 months-12 years), were enrolled from 8 districts across Ghana. Caregivers were interviewed at baseline, and again at 2 months after the completion of the programme, to assess: quality of life (PedsQL™ Family Impact Module); knowledge about their child’s condition; child health indicators; feeding practices. Severity of cerebral palsy, reported illness, and anthropometric measurements were also assessed. Results Of the child-caregiver pairs, 64 (84%) were included in final analysis. There were significant improvements in caregiver quality of life score (QoL) (median total QoL 12.5 at baseline to 51.4 at endline, P<0.001). Caregivers reported significant improvements in knowledge and confidence in caring for their child (p<0.001), in some aspects of child feeding practices (p<0.001) and in their child’s physical and emotional heath (p< 0.001). Actual frequency of reported serious illness over 12-months remained high (67%) among children, however, a small reduction in recent illness episodes (past 2 weeks) was seen (64% to 50% p < 0.05). Malnutrition was common at both time points; 63% and 65% of children were classified as underweight at baseline and endline respectively (p = 0.5). Conclusion Children with cerebral palsy have complex care and support needs which in low and middle-income settings need to be met by their family. This study demonstrates that a participatory training, delivered through the establishment of a local support group, with an emphasis on caregiver empowerment, resulted in improved caregiver QoL. Despite less effect on effect on child health and no clear effect on nutritional status, this alone is an important outcome. Whilst further development of these programmes would be helpful, and is underway, there is clear need for wider scale-up of an intervention which provides support to families.

Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life

To assess feeding difficulties and nutritional status among children with cerebral palsy (CP) in Ghana, and whether severity of feeding difficulties and malnutrition are independently associated with caregiver quality of life (QoL).

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.

Understanding how carers cope in a complex childhood disability in Turkana, Kenya :humanitarian setting : original research

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.

Blinding Retinopathy of Prematurity in Western India: Characteristics of Children, Reasons for Late Presentation and Impact on Families

ObjectiveTo ascertain why children with end-stage retinopathy of prematurity (ROP) become blind, and to explore the impact of blindness on families.DesignMixed quantitative and qualitative methods.SettingTertiary-care eye hospital in India.ParticipantsChildren with end-stage ROP and their carers.InterventionCases presenting between June 2009 and July 2016 were identified from medical records and data extracted. Carers were contacted for missing information, if required. Data were analyzed to explore where failure had occurred in the process of screening and treatment. A subset of carers were selected for in-depth interviews to explore the impact of having a blind child. Interviews were recorded, transcribed and analyzed using a thematic framework.Main outcome measuresParental perceptions.Results66 children were included: median age 4.3 y (range 3 mo–6 y), 58% boys. 74% were blind due to ‘screening failure’, which was associated with lower maternal education (P=0.03). Of the 17 case of treatment failure (24.6%), majority (12, 70%) had aggressive posterior ROP. A subset of carers of 18 children (50% boys) were interviewed, mostly mothers. Most reported impoverishment as a result of having a blind child, and many reported lack of access to special education, negative attitudes of others and concerns about the future.ConclusionsScreening for retinopathy of prematurity needs to be expanded and counselling improved. Access to special education and rehabilitation need to be improved.