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Reclaiming SRHR of women and girls with disabilities

DAS, Shreshtha
August 2021

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The manual Reclaiming SRHR of Women and Girls with Disabilities was developed as part of ARROW’s initiative, ‘Defending SRHR of Women and Girls with Disabilities’ with inputs and insights incorporated from regional experts from multiple disciplines whose contributions enriched the content of the manual. The manual aims to equip women and girls with disabilities with necessary SRHR information and knowledge to make informed choices free from coercion, violence, discrimination, and abuse. The Manual, therefore, contains detailed Modules on gender, sexuality, disability, rights, and their interlinkages in the context of addressing sexual and gender-based violence against women and girls with disabilities. Through this, it seeks to provide accessible information and knowledge on SRHR to women and girls with disabilities in various contexts, including in the face of the ongoing Covid-19 pandemic.

 

A Training of Trainers (ToT) manual on disability rights, gender and SRHR.
 

From words to actions: systematic review of interventions to promote sexual and reproductive health of persons with disabilities in low- and middle-income countries

HAMEED, Shaffa
MADDAMS, Alexander
LOWE, Hattie
DAVIES, Lowri
KHOSLA, Rajat
SHAKESPEARE, Tom
2020

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Persons with disabilities have the same sexual and reproductive health and rights (SRHR) as non-disabled persons. Yet they face numerous barriers in their access to sexual and reproductive health services and their rights are often not met. Evidence on SRHR for persons with disabilities is sparse, particularly evaluations of interventions demonstrating ‘what works.’ This systematic review assessed interventions to promote SRHR for persons with disabilities in low- and middle-income countries.

The method involved searching for qualitative, quantitative or mixed method observational studies representing primary research, published between 2010 and 2019, using MEDLINE, Embase, PubMed, Global Health and CINAHL Plus

 

BMJ Global Health 2020;5:e002903.

http://dx.doi.org/10.1136/bmjgh-2020-002903

Inequalities in utilization of essential antenatal services for women with disabilities: An analysis of the 2017-18 Pakistan Demographic and Health Survey. DHS working paper. No.166

HAMEED, Waqas
ASIM, Muhammad
July 2020

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Although the number of disabled women entering motherhood is growing, there is little quantitative evidence about the utilization of essential antenatal care services by women with disabilities. The aim of this study is to examine inequalities in the use of essential antenatal services between women with and without disabilities.

This study analyzed data from the Pakistan Demographic and Health Survey 2017-18 on 6,791 women (age 15-49) who had a live birth in the 5 years before the survey. Multiple logistic regression was used to test the study hypothesis. 

Research questions addressed were:

1. What are the levels of inequalities in the use of essential ANC services between women with and without disabilities, and by the type of disability?

2. How is the relationship between women’s disability and the utilization of essential ANC antenatal moderated by women’s wealth status and urban versus rural residence? 

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.

Abortion and disability: Towards an intersectional human rights-based approach

WOMEN ENABLED INTERNATIONAL
January 2020

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Ongoing debates around fetal impairment as a legal basis for abortion act as a wedge issue between the disability rights and reproductive rights movements. Disability rights advocates are concerned that laws that expressly permit abortion on grounds of fetal impairment codify the notion that disabled lives are worth less than non-disabled lives. Reproductive rights advocates are concerned that reforming abortion laws to remove fetal impairment grounds—or to expressly ban abortion in the case of a fetal impairment diagnosis—will result in less access to safe abortion and exacerbate the attendant human rights consequences. These tensions are fueled both by advocacy strategies to advance abortion rights that can reinforce harmful disability-related stereotypes and by opponents of abortion rights co-opting disability rights language to impose greater restrictions on abortion access.

Women with disabilities, who live at the intersection of these two movements, care deeply about both protecting reproductive autonomy, including the right to access safe abortion, and dismantling harmful disability-related stigma. Too often, however, their voices are left out of the debate. To remedy this lack of voice and representation in these ongoing debates, Women Enabled International (WEI) conducted a series of consultations with 40 persons with diverse disabilities, who have the biological capacity to become pregnant, and who advocate at the intersection of gender and disability. These consultations provided a safe space in which these advocates from around the globe could discuss specific concerns around this historic tension.

In this framing document, WEI identifies the primary concerns of the women with disabilities who participated in these consultations—as well as the primary concerns of the disability rights and the reproductive rights movements, analyzes the human rights standards that underpin this debate, and applies an intersectional human rights-based approach to posit a way forward.

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

KYEREMATENG, Joana D.A
EDUSEI, Anthony
DOGBE, Joslin A.
OPUKU, Maxwell P.
NKETSIA, William
HAMMOND, Chrales
AFRIYIE, Sally A.
September 2019

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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

 

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

 

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

 

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

 

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

 

 

African Journal of Disability, Vol 8, 2019

Implications of not addressing mental health and psychosocial support (MHPSS) needs in conflict situations. K4D Helpdesk Report 582

OMERT, Anna
April 2019

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This review examines the potential implications of not addressing mental health and psychosocial support (MHPSS) needs resulting from conflict throughout the life course, including on longer term mental and physical health, communities and families (including intergenerational effects), and overall human development (including education and participation in the workforce). 

Global survey of inclusive early childhood development and early childhood intervention programs

VARGAS-BARON, Emily
et al
March 2019

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To learn more about the current status of IECD (inclusive early childhood development) and ECI (early childhood intervention) programs, three international organizations collaborated to conduct a global survey: RISE Institute; UNICEF; and the Early Childhood Development Task Force (ECDtf), which is within the Global Partnership on Children with Disabilities (GPcwd). This large survey was designed in 2016, was conducted in 2017, and the report was prepared in 2018.

 

The main objectives of the survey were to:

  • Map current implementation of IECD and ECI programs and related activities;
  • Describe key IECD and ECI program features;
  • Identify gaps and challenges in providing accessible IECD and ECI services;
  • Document factors associated with successful implementation and scale-up;
  • Generate recommendations to inform future policy and program development and national planning and implementation efforts.

 

The online survey targeted a range of programs, and activities including IECD and ECI services; rehabilitation and habilitation services; humanitarian, emergency, and child Global Survey of Inclusive ECD and ECI Programs 8 protection services; advocacy campaigns; and research and evaluation projects. 

 

Program respondents provided information on 426 programs that were implemented in 121 countries. 

Rating early child development outcome measurement tools for routine health programme use

BOGGS, Dorothy
et al
January 2019

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Background identification of children at risk of developmental delay and/or impairment requires valid measurement of early child development (ECD). ECD measurement tools were systematically assessed for accuracy and feasibility for use in routine services in low income and middle-income countries (LMIC).

Building on World Bank and peer-reviewed literature reviews, available ECD measurement tools for children aged 0–3 years used in ≥1 LMIC were identified and matrixed according to when (child age) and what (ECD domains) they measure at population or individual level. Tools measuring <2 years and covering ≥3 developmental domains, including cognition, were rated for accuracy and feasibility criteria using a rating approach derived from Grading of Recommendations, Assessment, Development and Evaluations

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

Including children with disabilities in preschool education. Experiences of Plan International Mozambique

PLAN INTERNATIONAL
August 2018

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Between 2015 and 2017, Plan International Mozambique worked together with communities supporting 106 preschools in rural Mozambique. In late 2016, an approach was piloted in 18 community-based preschools to support them to be disability-inclusive. The overall goal was to increase the number of children with disabilities enrolled in Early Childhood Care and Education (ECCE) centres delivering quality early learning opportunities. The pilot took place over a 12 month period. Summarised findings about the current status of inclusion in preschool programmes run by Plan International Mozambique, case studies and lessons learned about the inclusion of children with disabilities in these programmes are provided.  

 

They describe five aspects that need to be considered to remove barriers and ensure that children with disabilities can access and benefit from early childhood education:

1. Work directly with the parents of children with disabilities

2. Address individual physical and medical needs of children with disabilities

3. Build the skills and confidence of caretakers

4. Equip and build a strong implementing team

5. Build evidence on what is happening and what (doesn’t) work

Women with disabilities, HIV and sexual violence: Data tell us they are still left behind

HUMANITY & INCLUSION (HI)
July 2018

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This leaflet intends to underline the existence of intersectional factors of vulnerability amongst Women with Disabilities with respect to HIV/AIDS and sexual violence in Burkina Faso and Guinea Bissau. The figures presented here are taken from two studies carried out in Burkina Faso and Guinea Bissau in 2017. In Burkina Faso, 28,667 people were interviewed in total, among whom 978 identified themselves as persons with disabilities (using the Washington Group Short Set of Questions). For the biobehavioral study in Guinea Bissau, 17,110 people were interviewed in total, among whom 1,147 identified themselves as persons with disabilities

Let me decide and thrive - Global discrimination and exclusion of girls and young women with disabilities

PLAN INTERNATIONAL
December 2017

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Girls and young women with disabilities have the right to make decisions over their own bodies and live free from violence and fear. Yet, on a global level, they are the people least likely to enjoy their sexual and reproductive health and rights (SRHR). Compelled by this reality, Plan International and the Office of the UN Special Rapporteur on the Rights of Persons with Disabilities have joined forces to ensure young women and girls with disabilities can exercise choice and have control over their bodies. The Let Me Decide and Thrive initiative is supported by in-depth, critical field and desk research and aims to empower girls and young women with disabilities, raise awareness of their plight among stakeholders, and work to secure their sexual and reproductive health and rights.

This research found that the barriers to SRHR confronted by girls and young women with disabilities are overwhelming: infantilisation and disempowerment; forced sterilisation, abortion, and contraception; disproportionate suffering from all forms of violence; substantial barriers in accessing justice; discriminatory attitudes, norms, and behaviours rendering them invisible; and a lack of accessible and appropriate SRHR information and services.

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

Inclusive and integrated mother, newborn and child health programming: Beyond mortality

OLCHINI, Davide
November 2017

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This policy paper describes the operational terms of Handicap International’s mandate and values as applied to Mother, Neonatal and Child Health (MNCH). Presenting the approaches and references underpinning Handicap International’s actions, choices and commitments, its purpose is to ensure consistency across its practices while taking account of different contexts. Intended as a document to guide programme staff, the paper defines the topic, describes the target populations and sets out the methods of intervention (activities and expected results) and the indicators used to monitor and evaluate. It also aims to ensure that Handicap International programmes implement all projects in accordance with the presented methods of intervention

 

The SDGs focus on a broader scope of activities and are thus slowly but surely shifting from mortality to address in a more comprehensive manner the well-being and achievement of maximum potential for children and adolescents. With a robust component in sexual and reproductive health, this represents a significant frame of reference for Handicap International’s work in MNCH as it has paved the way for integrating MNCH-related impairments into existing health services. The framework of the SDGs provides a clear vision of the importance of multi-sectorial interventions, which encompass the limit of vertically-organised health systems centred on curative aspects, to offer a more integrated and preventive package of interventions that include chronic conditions, impairments and health for all. After many years of implementing MNCH projects, Handicap International is well-positioned and firmly established as a major player in this process.

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Balaynesh
et al
September 2017

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Ethiopian disabled women’s experiences of intimacy, pregnancy and motherhood are reported. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants. Interview data revealed that mothers experienced significant challenges with regard to accessibility of health centers, physician’s lack of knowledge about and problematic attitudes toward them and more general societal prejudices towards individuals with disability. The 13 participants were employed women with physical or visual disabilities, and the interviewees were from the Addis Ababa metropolitan area, Ethiopia.

 

Disability & Society, 32:10, 1510-1533

DOI: 10.1080/09687599.2017.1361385

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Belaynesh
VAN ENGEN, Marloes
VAN DER KLINK, Jac
SCHIPPERS, Alice
2017

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This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

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

Factsheet. Maternal health and rehabilitation

HANDICAP INTERNATIONAL;
March 2017

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Maternal health concerns the health and wellbeing of mothers from before pregnancy (pre-conception), during pregnancy (ante-natal), during and after childbirth (peri- and post-natal). Common impairments and activity limitations from obstetric fistulae, pelvic floor dysfunction, maternal depression and musculoskeletal disorders are outlined and examples of rehabilitation strategies are given. A case study of fistula in Burundi is reported.

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