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Community-Based Screening and Early Intervention for Birth Defects and Developmental Disabilities: Lessons from the RBSK Programme in India

KAR, Anita
RADHAKRISHNAN, Bhagyashree
GIRASE, Trushna
UJAGARE, Dhammasagar
PATIL, Archana
2020

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Purpose:  The Rashtriya Bal Swasthya Karyakram (RBSK) is an ongoing screening and early intervention programme for children in India. Children with birth defects and developmental disabilities from rural and urban communities are referred for treatment and therapies to early intervention centres located in urban areas. This study primarily aimed at determining caregiver uptake and compliance to referral advice of the RBSK, with the larger goal of determining the utility of the community-based screening and district-based intervention service model for caregivers of children with disabilities.

 

Method: Three administrative blocks and one municipal corporation area of Pune district, in Maharashtra, were randomly selected. The sample consisted of 115 caregivers of children with disabilities. They were interviewed using a semi-structured questionnaire that investigated uptake of referral advice, treatment outcome, current health status of the child and reasons for noncompliance, three to nine months after the first referral by the RBSK team. 

 

Results: Sixty-four caregivers were aware of their child’s disability, but most children remained untreated. After screening and referral by the RBSK team, compliance was high for treatable conditions like congenital heart defects. Treatment was discontinued for 83% (24 out of 29) of children with developmental disabilities. Reasons for discontinuation included lengthy waiting time, distance to facility, difficulty in transporting the child, loss of wages, and denial of the child’s disability.

 

Conclusion and Implications: The results indicated that the RBSK programme provides treatment opportunities for children who are left undiagnosed and untreated in the community. Providing rehabilitation services at district centres is a barrier for service uptake. Alternative models such as early childhood development screening and integrating rehabilitation services at the primary healthcare level may be more feasible to provide services for children with disabilities in India.

Societal attitude and behaviours towards women with disabilities in rural Nepal: pregnancy, childbirth and motherhood

DEVKOTA, Hridaya R.
KETT, Maria
GROCE, Nora
January 2019

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This study reviews the attitudes and behaviours in rural Nepalese society towards women with disabilities, their pregnancy, childbirth and motherhood. Society often perceives people with disabilities as different from the norm, and women with disabilities are frequently considered to be doubly discriminated against. Studies show that negative perceptions held in many societies undervalue women with disabilities and that there is discomfort with questions of their control over pregnancy, childbirth and motherhood, thus limiting their sexual and reproductive rights. Public attitudes towards women with disabilities have a significant impact on their life experiences, opportunities and help-seeking behaviours. Numerous studies in the global literature concentrate on attitudes towards persons with disabilities, however there have been few studies in Nepal and fewer still specifically on women.

A qualitative approach, with six focus group discussions among Dalit and non-Dalit women without disabilities and female community health volunteers on their views and understandings about sexual and reproductive health among women with disabilities, and 17 face-to-face semi-structured interviews with women with physical and sensory disabilities who have had the experience of pregnancy and childbirth was conducted in Rupandehi district in 2015. Interviews were audio-recorded, transcribed, and translated into English before being analysed thematically.

 

BMC Pregnancy Childbirth 19, 20 (2019)

https://doi.org/10.1186/s12884-019-2171-4

Do experiences and perceptions about quality of care differ among social groups in Nepal? A study of maternal healthcare experiences of women with and without disabilities, and Dalit and non-Dalit women

DEVKOTA, Hridaya Raj
MURRAY, Emily
CLARKE, Andrew
GROCE, Nora
December 2017

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Background
Suboptimal quality of care and disparities in services by healthcare providers are often reported in Nepal. Experience and perceptions about quality of care may differ according to women’s socio-cultural background, individual characteristics, their exposure and expectations. This study aimed to compare perceptions of the quality of maternal healthcare services between two groups that are consistently considered vulnerable, women with disabilities from both the non-Dalit population and Dalit population and their peers without disabilities from both non-Dalit and Dalit communities.

Methods
A cross-sectional survey was conducted among 343 total women that included women with disabilities, Dalits and non-Dalits. Women were recruited for interview, who were aged 15–49 years, had been pregnant within the last five years and who had used maternal care services in one of the public health facilities of Rupandehi district. A 20-item, Likert-type scale with four sub-scales or dimensions: ‘Health Facility’, ‘Healthcare Delivery’, ‘Inter-personal’ and ‘Access to Care’ was used to measure women’s perceptions of quality of care. Chi-square test and t test were used to compare groups and to assess differences in perceptions; and linear regression was applied to assess confounding effects of socio-demographic factors. The mean score was compared for each item and separately for each dimension.

PLoS ONE 12(12): e0188554
https://doi.org/10.1371/journal.pone.0188554

Healthcare provider's attitude towards disability and experience of women with disabilities in the use of maternal healthcare service in rural Nepal

DEVKOTA, Hridaya Raj
KETT, Maria
GROCE, Nora
MURRAY, Emily
June 2017

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BACKGROUND:
Women with disabilities are less likely to receive maternal healthcare services compared to women without disabilities. While few studies have reviewed healthcare experience of women with disabilities, no studies have been conducted to understand provider's attitude towards disability in Nepal, yet the attitude and behaviour of healthcare providers may have a significant influence on aspects of care and the use of service by women with disabilities. This study examines healthcare provider's attitudes towards disability and explores the experience of women with disabilities in maternal healthcare service utilization during pregnancy and childbirth.

METHOD:
The study used mixed method approach. An attitude survey was conducted among 396 healthcare providers currently working in public health facilities in Rupandehi district of Nepal. For additional insight, eighteen in-depth interviews with women with disabilities who used maternal healthcare services in a healthcare facility within the study district in their last pregnancy were undertaken. The Attitude Towards Disabled Persons (ATDP) scale score was used to measure the attitudes of healthcare providers. For quantitative data, univariate and multivariate analysis using ANOVA was used to understand the association between outcome and independent variables and qualitative analysis generated and described themes.

Reproductive Health, 2017

Maternal and new-born care practices among disabled women, and their attendance in community groups in rural Makwanpur, Nepal

LEONARD CHESHIRE DISABILITY AND INCLUSIVE DEVELOPMENT CENTRE
2013

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This paper presents qualitative and quantitative research that describes the type and severity of disability of married women in the study area, describes their participation in community groups and analyses associations between maternal and new-born care behaviours and disability. Health workers and field researchers were also interviewed about their experience with disabled women in rural Makwanpur
Cross-cutting Disability Research Programme, Background Paper: 01

The state of the world's children 2009

UNITED NATIONS CHILDREN'S FUND (UNICEF)
December 2008

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The 2009 report ..."examines critical issues in maternal and newborn health, underscoring the need to establish a comprehensive continuum of care for mothers, newborns and children. "The report outlines the latest paradigms in health programming and policies for mothers and newborns, and explores policies, programmes and partnerships aimed at improving maternal and neonatal health. Africa and Asia are a key focus for this report, which complements the previous year's issue on child survival." The report can be downloaded as a PDF or a multi-media version is also available in four languages

ICDS and nutrition in the eleventh five year plan (2007-2012)

MINISTRY OF WOMEN AND CHILD DEVELOPMENT, GOVERNMENT OF INDIA
2007

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This report gives the background to the Integrated child development services (ICDS) initiative, which takes a holistic approach to child nutrition, health and development and sees the first three years of life as crucial, before going on to explain the expansion in this 11th five-year plan in order to accelerate implementation for achieving the core objectives of the programme, especially to reduce the child malnutrition and help reduction in mortality rates. The plan seeks to address the challenges of issues such as the prevention and management of malnutrition, poor maternal and adolescent nutrition, gender discrimination, lack of nutrition and health education, and inadequate community participation in the programme

Obstetric care in poor settings

MILLS, Samuel
et al
2007

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This report explores why maternal mortality continues to be so high in developing countries, and why emergency obstetric services are little utilized, through research carried out in poor areas in Ghana (Kassena-Nankana district), India (Uttar Pradesh state), and Kenya (Nairobi slums)

Programming experiences in early childhood development

UNITED NATIONS CHILDREN'S FUND (UNICEF)
November 2006

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This document presents examples and case studies from 21 countries. They demonstrate the benefit of cross-sectoral programming to support early childhood development, some building on early child care or education programme

Danger signs of neonatal illnesses : perceptions of caregivers and health workers in northern India

AWASTHI, Shally
VERMA, Tuhina
AGARWAL, Monica
October 2006

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This article explores the "household practices that can affect neonatal health, from the perspective of caregivers and health workers; to identify signs in neonates leading either to recognition of illness or health-care seeking; and to ascertain the proportion of caregivers who recognize the individual items of the integrated management of neonatal and childhood illnesses (IMNCI) programme"
Bulletin of the World Health Organization, 84(10)

Management of birth asphyxia in home deliveries in rural Gadchiroli : the effect of two types of birth attendants and of resuscitating with mouth-to-mouth, tube-mask or bag-mask

BANG, Abhay T
et al
2005

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This article reports the results of a study to evaluate the effect of home-based neonatal care on birth asphyxia and to compare the effectiveness of trained traditional birth attendants and village health workers in using mouth-to-mouth resuscitation, tube-mask or bag-mask interventions

Early childhood care and education in south east Asia : working for access, quality and inclusion in Thailand, the Philippines and Viet Nam

DE LOS ANGELES-BANTISTA, Feny
2004

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This study was commissioned to examine current early childhood care and education programmes and policies in three countries in the Asia Pacific region: Thailand, the Philippines and Vietnam. Specifically the study attempts to achieve two objectives: firstly, to give an account of the extent to which a holistic view of child development has been translated into learner-centred curricula that includes health and nutritional needs of young children, and secondly, to address gender issues and the inclusion of children at risk of experiencing marginalisation or exclusion. This study is aimed at practitioners and policy makers to help work directly with young children who are at risk or are made vulnerable by difficult life conditions brought about by social, economic, political and cultural factors. It is the author's opinion that social and cultural diversity, gender sensitivity and equality and a committment to inclusion based on respect for and acceptance of human diversity can be addressed meaningfully through early childhood development programmes.

Involving men in maternity care in India

VARKEY, Leila Caleb
FRONTIERS IN REPRODUCTIVE HEALTH PROGRAM
et al
2004

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"The Men in Maternity (MiM) study investigated the feasibility, acceptability and cost of a new, more comprehensive, model of maternity care that encouraged husbands' participation in their wives' antenatal and postpartum care. The study specifically assessed the impact of the intervention on family planning in the postpartum period and STI preventitive practices among men and women. The study was conducted in collaboration with the Employees' State Insurance Corporation (ESIC), Delhi Directorate at their primary health facilities called dispensaries"

Community-based strategies for breastfeeding promotion and support in developing countries

WORLD HEALTH ORGANIZATION (WHO)
2003

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This review examines the role of communities and community-based resource persons in providing support for appropriate feeding practices and access to skilled support when mothers need it. This document is based on a literature review and an analysis of three projects in Madagascar, Honduras and India. It assesses the impact of interventions, the mechanisms through which behaviours can be changed, and the factors that are necessary to maximise and sustain the benefits of interventions

Monitoring the status of health equity in Bangladesh : the BHEW survey 2002

AHMED, Masud Syed
et al
2003

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BHEW (Bangladesh Health Equity Watch) is a Bangaldeshi initiative established to determine whether the health situation in the country is improving and if those improvements are equitable. This report produced by BRAC gives an account of its current findings. Equity in health is defined as 'the absence of systematic and potentially redemiable differences in one or more aspects of health across populations or population subgroups defined socially, economically, demographically or geographically'. For example, while child mortality in Bangladesh has decreased, it is not known whether the decline has been equal for all groups within the population, such as the difficult areas to reach usually inhabited by ethnic minorities. In addition to child mortality, the report also focuses on nutritional status of the population including young children, and utilisation and accessiblity of the health care services. The report finds that the health of the disadvantaged groups has not much improved since independence. The information given is targeted at policy makers and programme implementers

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