'Flower of the body': menstrual experiences and needs of young adolescent women with cerebral palsy in Bangladesh, and their mothers providing menstrual support.

BACKGROUND: This study offers voice to young adolescent women with cerebral palsy (CP) in Bangladesh as they describe their menstrual experiences and needs, and their mothers providing menstrual support. METHOD: Semi-structured focus groups with adolescents with CP, and separately their mother. Data was analysed using a material discursive framework and drawing on feminist disability theory. Participants were recruited from the Bangladesh CP Register (BCPR); a population-based surveillance of children and adolescents with CP in rural Bangladesh. RESULTS: Participants were 45 women including 12 female adolescents with CP and 33 female caregivers. Participants reported a wide range of experiences and needs; menarche acted as a gateway to menstrual information although for some a discourse of silence prevailed due to exclusion from peer and familial networks. Menstruation was discursively constructed as a sign of 'female maturation' marked by an expectation of 'independence', required for acceptance into socially valued adult roles, and was positioned alongside increased vulnerability to sexual abuse. Young adolescent women with CP were expected to 'quietly endure' the material aspects of menstruation although unmanaged pain and distress were described. Mothers reported an imperative for meeting their adolescent's menstrual needs however this role was discursively positioned as 'painful', 'irritating' and 'shameful', in part due to an absence of affordable, functional menstrual resources. CONCLUSION: The findings of the present study provide motivation for disability services in Bangladesh to account for the menstrual needs of young adolescent women with CP within service delivery through strategies such as providing menstrual education and by embedding value in constructs such as 'interdependence'. Moreover, interventions focused on alleviating menstrual pain among young adolescent women with CP as well as those targeted to alleviate distress among mothers providing menstrual care are required. Finally, policy responses are required to ensure that 'inclusive development' considers the needs of menstruating women with disability.

Immunisation Status of Children with Cerebral Palsy in Rural Bangladesh: Results from the Bangladesh Cerebral Palsy Register (BCPR).

BACKGROUND: Cerebral palsy (CP) is the most common cause of physical disability in childhood, with an estimated 17 million cases worldwide. There is limited data concerning the general health of this population and the immunisation status of children with CP is largely unknown. OBJECTIVE: We aimed to assess the immunisation status of children with CP in rural Bangladesh and determine the predictors of non-immunisation. METHODS: This study is part of the Bangladesh CP Register (BCPR) study; a population based CP register commenced in January 2015 in the Shahjadpur sub-district of Bangladesh. As part of BCPR registration, all children with CP in the catchment area were assessed by a paediatrician and their clinical and immunisation history were collected. RESULTS: Between January and December 2015, 615 children with CP were registered on the BCPR. The median age of the children was 7.5 years, and 38.5% were female. 91.7% of those children had a BCG vaccine scar (as an objective marker for immunisation at birth). However, only 43.2% reported to have received the rubella vaccine during the 2014 national rubella immunisation campaign. Timing of CP diagnosis was found to be an independent predictor for immunisation uptake; those diagnosed before the age of 3 were more likely to have received the rubella vaccine (95% confidence interval [CI] 1.6 - 4.3, odds ratio [OR] 2.6, p <0.0001). CONCLUSIONS: To the best of our knowledge, this is the first paper to use a formal CP register to examine the relationship between CP and immunisation status in a low or middle income country like Bangladesh. Our data suggest that more than half of children with CP in rural Bangladesh did not receive immunisation during a recent national campaign.

Perceptual visual dysfunction, physical impairment and quality of life in Bangladeshi children with cerebral palsy.

BACKGROUND: Cerebral palsy (CP) is the most common cause of motor disability in children and is often accompanied by sensory and/or cognitive impairment. The aim of this study was to characterise visual acuity impairment, perceptual visual dysfunction (PVD) and physical disability in a community-based sample of Bangladeshi children with CP and to assess the impact of these factors on the quality of life of the children. METHODS: A key informant study was used to recruit children with CP from Sirajganj district. Gross Motor Function Classification System (GMFCS) levels and visual impairment were assessed by a physiotherapist and an optometrist, respectively. Assessments of visual perception were performed and standardised questionnaires were administered to each child's main carer to elicit indicators of PVD and parent-reported health-related quality of life. A generalised linear regression analysis was conducted to assess the determinants of the quality of life scores. RESULTS: 180 children were recruited. The median age was 8 years (IQR: 6-11 years); 112 (62%) were male; 57 (32%) had visual acuity impairment and 95 (53%) had some parent-reported PVD. In analyses adjusted for age, sex, GMFCS and acuity impairment, visual attention (p<0.001) and recognition/navigation (p<0.001) were associated with total health-related quality of life, and there were similar trends for total PVD score (p=0.006) and visual search (p=0.020). CONCLUSIONS: PVD is an important contributor in reducing quality of life in children with CP, independent of motor disability and acuity impairment. Better characterisation of PVD is important to help design interventions for affected children, which may improve their quality of life.

Predictors of referral uptake in children with disabilities in Bangladesh--exploring barriers as a first step to improving referral provision.

PURPOSE: Making services available to children with disabilities in low- and middle-income countries does not guarantee their use. This study aims to identify factors associated with the uptake of referrals in order to investigate barriers to service use. METHODS: Children with impairments identified in two districts of Bangladesh were invited to attend screening camps where their condition was confirmed; they were provided with referrals for rehabilitation and treatment services. Predictors of referral uptake were identified using logistic regression. RESULTS: Overall referral uptake was 47%, 32% in Sirajganj and 61% in Natore. There was no association between age or gender and referral uptake. Factors predictive of referral uptake were higher income in Sirajganj (OR=2.6 95%CI 1.4-5.0), and the districts combined (OR=1.6 95%CI 1.1-2.1); maternal literacy in Natore (OR=1.6 95%CI 1.0-2.5); and epilepsy in all three models (Sirajganj: OR=2.6 95%CI 1.7-4.0; Natore: OR=13.5 95%CI 6.5-28.3; Combined: OR=4.6 95%CI 3.3-6.5). Physical impairment was associated with increased odds of uptake in Sirajganj and in the combined model (OR=2.7 95%CI 1.8-4.1; OR=3.34 95%CI 2.2-5.2). CONCLUSIONS: Even when some logistical and financial assistance is available, children with impairment from low-income families may require additional support to take up referrals. There may be greater willingness to accept treatment that is locally provided, such as medication for epilepsy or therapy at village level.

Parental knowledge, attitude and practice related to blindness of children in some selected Upazilla of Bangladesh.

Early detection of blind children at the household and community level is critical in reducing the global burden of visual impairment and childhood blindness. The aim of the study is to identify a range of potential issues relating to parental awareness and perceptions of common eye diseases affecting children. It was a descriptive and cross sectional study. Parents were recruited from four selected Upazillas ('pouroshoba' - 25% and rural - 75%) in the Naogaon district of Bangladesh. The method used in this study to assess parental knowledge and belief was by means of a questionnaire. The selected subjects were interviewed in detail using a structured questionnaire. It is mentionable that among common eye disease, about three-fourth of the parents informed that vitamin-A deficiency was the leading cause of blindness and more than one quarter believed that eye infection was the important cause of childhood blindness. Very few reported that injury in eye was the cause of childhood blindness. Analysis of respondents of this study revealed that half of the parents believed that childhood cataract is untreatable. Approximately 90% those surveyed were unaware of schooling systems for blind children and only 5% sought treatment from an ophthalmologist. This study also demonstrates that the health seeking behavior of parents and their extended families is poor. The mean age of the parents was 32.5±9.3 years, about 75% of parents had education up to primary level, and only 3.7% of them had graduation degree and above. The findings reinforce the necessity of parental awareness of common eye diseases in children and the importance of seeking timely advice including treatment based on informed decisions.

Productivity of key informants for identifying blind children: evidence from a pilot study in Malawi.

OBJECTIVES: To determine the productivity of village-based 'key informants' (KIs) in identifying blind children. MATERIALS AND METHODS: Ngabu subdistrict (population 101,000) of Chikwawa district was divided into KI catchment areas. KIs, selected by local village leaders, were trained to register children reported to be blind or with severe visual impairment. These children were clinically assessed at designated centres. RESULTS: In total, 44 KIs were selected and trained to cover 196 villages in Ngabu. They identified and referred 151 children, 37 of whom were blind (presenting vision <3/60 best eye). Overall, village leaders tended to choose female KIs (80%) compared to male KIs (20%); however, male KIs tended to be more productive, identifying 4.22 children each (compared to 3.23 for female KIs). Male KIs were 2.7 times more likely to identify blind children compared to female KIs. Only 25% of all identified blind children of school going age were in school. CONCLUSIONS: KIs may be effective in identifying blind children in the community; however, additional work is needed to determine who will be the most effective KI in a community and whether gender roles will limit interpretation of findings from KIs activities.

Prevalence and causes of childhood blindness in camps for displaced persons in Khartoum: results of a household survey.

The prevalence and causes of visual impairment and blindness were determined in 29 048 children < 16 years in all households of 5 camps for internally displaced people in Khartoum State, Sudan. After house-to-house visits by trained health care workers, 916 children received further assessment, 2.7% of whom were found to be blind, 1.6% to be severely visually impaired and 5.5% to be visually impaired, according to World Health Organization criteria. The prevalence of blindness in children in the camps was estimated as 1.4 per 1000 children. The leading causes of blindness were found to be corneal opacities (40.0%), mainly due to vitamin A deficiency, followed by amblyopia (32.5%).

Causes of severe visual impairment and blindness in Bangladesh: a study of 1935 children.

OBJECTIVE: To identify the anatomical site and underlying aetiology of severe visual impairment and blindness (SVI/BL) in children in Bangladesh. DESIGN: A national case series. METHODS: Children were recruited from all 64 districts in Bangladesh through multiple sources. Causes were determined and categorised using standard World Health Organization methods. RESULTS: 1935 SVI/BL children were recruited. The median age was 132 months, and boys accounted for 63.1% of the sample. The main site of abnormality was lens (32.5%), mainly unoperated cataract, followed by corneal pathology (26.6%) and disorders of the whole eye (13.1%). Lens-related blindness was the leading cause in boys (37.0%) compared with corneal blindness in girls (29.8%). In 593 children, visual loss was due to childhood factors, over 75% being attributed to vitamin A deficiency. Overall 1338 children (69.2%) had avoidable causes. Only 2% of the country's estimated SVI/BL children have access to education and rehabilitation services. CONCLUSIONS: This is the first large-scale study of SVI/BL children in Bangladesh over two-thirds of whom had avoidable causes. Strategies for control are discussed.

Prevalence and causes of childhood blindness in camps for displaced persons in Khartoum: results of a household survey

The prevalence and causes of visual impairment and blindness were determined in 29 048 children < 16 years in all households of 5 camps for internally displaced people in Khartoum State, Sudan. After house-to-house visits by trained health care workers, 916 children received further assessment, 2.7% of whom were found to be blind, 1.6% to be severely visually impaired and 5.5% to be visually impaired, according to World Health Organization criteria. The prevalence of blindness in children in the camps was estimated as 1.4 per 1000 children. The leading causes of blindness were found to be corneal opacities [40.0%], mainly due to vitamin A deficiency, followed by amblyopia [32.5%]