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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

Seeing the invisible: Sexuality-related knowledge, attitudes and behavior of children and youth with disabilities in China

SHANGHAI INSITITUTE OF PLANNED PARENTHOOD RESEARCH (SIPPR)
UNESCO
HUMANITY & INCLUSION (HI)
2019

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Young people with disabilities have the same right to Sexual and Reproductive Health (SRH) as their peers without disabilities, but their needs and rights are often overlooked. This study examines the SRH status of young people with disabilities in China. In particular, the study explored the sexuality-related knowledge, attitudes and behaviour of young people with disabilities as well as their access to sexuality-related information, education and services. The findings of the study are intended to provide evidence to support decision-making by government agencies, educators, development workers and other relevant stakeholders regarding developing and implementing disability-inclusive SRH and sexuality education policies and programmes for young people in China.

The study, using quantitative and qualitative methods, was conducted in 2015 among unmarried young persons aged 12 to 24 living with visual, hearing, physical and intellectual disabilities, in both urban and rural areas. The analysis was based on data collected through 707 completed valid questionnaires, 20 group interviews and 35 individual interviews with young people with disabilities, and individual interviews with 60 parents and teachers, along with one case study.

HIV & disability in West Africa: A combined analysis of 4 studies conducted in Burkina Faso, Niger, Guinea Bissau and Cape Verde (2019) - VIH & Handicap en Afrique de l’Ouest : Une analyse combinée de 4 études conduites au Burkina Faso, Niger, Guinée Bis

DE BEAUDRAP, Pierre
2019

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This paper includes four studies which seek to better understand the situation by HIV-related situation of disabled men and women living in West Africa. 
Using epidemiological investigation, qualitative interviews and collections of testimonies, these studies offer insight into the vulnerability of people with disabilities in the area of ​​sexual health
 

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

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.

Advancing the access of deafblind women and girls to sexual and reproductive health

VISUAL HEARING IMPAIRMENT MEMBERSHIP ASSOCIATION (VIHEMA)
2017

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Activities to promote the access of deafblind women and girls to sexual and reproductive health are reported via brief descriptions of what happened, what changed and what worked. Activites included: training the deafblind women in their rights;training relatives of deafblind women, giving advice on general care, as well as highlighting the importance of supporting their sexual and reproductive health choices and promoting family planning; tackling the issue of the forced sterilization; awareness raising via newspapers and radio and improving livelihoods.

 

 

Sexual Abuse of Persons with Disabilities - Research

Rob Aley
et al
November 2016

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The aim of the research was to investigate the social, cultural and institutional factors which contribute to the high incidence of sexual abuse of persons with disabilities in East Africa and to identify interventions which could change detrimental attitudes, beliefs and practices which perpetuate this high incidence. The research is framed within the United Nations Convention on the Rights of Persons with Disability (UNCRPD), particularly articles 12, 13 and 16.

The study used a qualitative participatory action research approach and worked with local partner organisations and Ugandan and Kenyan field level researchers to collect data. Survivors of sexual abuse were not interviewed but instead the research investigated the understandings, beliefs and practices of a range of service providers and key responders who are involved in the prevention of and response to sexual abuse against persons with disabilities in their communities. Groups consulted included police, teachers, health-care workers, government administrators, faith and community organisations and traditional leaders, as well as persons with disabilities and their parents. Participatory workshops were run with a reference group of people with disabilities (with a range of impairments and experiences) and relevant specialists at the initial stage and during the participatory analysis process. After initial orientation and training the field researchers undertook a total of 52 individual interviews and 9 focus group discussions with a range of stakeholders.

The overall findings show that social attitudes and understanding of disability and sexuality in general are strong influencing factors on the risks that persons with disability face in relation to sexual abuse. Participants reported a range of harmful attitudes and beliefs about disability and about the needs and rights of persons with disabilities. It is very common for cases of abuse to go unreported and to be dealt with at the family or community level, rather than being viewed as a serious criminal matter which should be taken to the formal authorities. Many barriers exist, especially at community level which mean abuse does not get reported. Lack of awareness and knowledge, stigma and exclusion and poverty were key drivers of continuing abuse and survivors of abuse seldom get proper support. Guidelines, training and clear procedures for good practice in the various professions were generally weak or absent. Key recommendations were generated for both community level interventions and in relation to policy and training at regional and national levels. The practical implementation of some recommendations was undertaken.

Sexual Abuse of Persons with Disabilities - Research

ALEY, Rob
et al
November 2016

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Abstract
The aim of the research was to investigate the social, cultural and institutional factors which contribute to the high incidence of sexual abuse of persons with disabilities in East Africa and to identify interventions which could change detrimental attitudes, beliefs and practices which perpetuate this high incidence. The research is framed within the United Nations Convention on the Rights of Persons with Disability (UNCRPD), particularly articles 12, 13 and 16.

The study used a qualitative participatory action research approach and worked with local partner organisations and Ugandan and Kenyan field level researchers to collect data. Survivors of sexual abuse were not interviewed but instead the research investigated the understandings, beliefs and practices of a range of service providers and key responders who are involved in the prevention of and response to sexual abuse against persons with disabilities in their communities. Groups consulted included police, teachers, health-care workers, government administrators, faith and community organisations and traditional leaders, as well as persons with disabilities and their parents. Participatory workshops were run with a reference group of people with disabilities (with a range of impairments and experiences) and relevant specialists at the initial stage and during the participatory analysis process. After initial orientation and training the field researchers undertook a total of 52 individual interviews and 9 focus group discussions with a range of stakeholders.

The overall findings show that social attitudes and understanding of disability and sexuality in general are strong influencing factors on the risks that persons with disability face in relation to sexual abuse. Participants reported a range of harmful attitudes and beliefs about disability and about the needs and rights of persons with disabilities. It is very common for cases of abuse to go unreported and to be dealt with at the family or community level, rather than being viewed as a serious criminal matter which should be taken to the formal authorities. Many barriers exist, especially at community level which mean abuse does not get reported. Lack of awareness and knowledge, stigma and exclusion and poverty were key drivers of continuing abuse and survivors of abuse seldom get proper support. Guidelines, training and clear procedures for good practice in the various professions were generally weak or absent. Key recommendations were generated for both community level interventions and in relation to policy and training at regional and national levels. The practical implementation of some recommendations was undertaken.

Abuse and denial of sexual and reproductive rights of women with psychosocial disabilities in Mexico

RODRIGUEZ, Priscila
et al
February 2015

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This report presents the situation faced by women with psycho-social conditions in Mexico based on the results of a year-long study. This research included the application of a questionnaire to fifty-one women with psychosocial disabilities who were either members of the Colectivo Chuhcan or received outpatient services at four different health clinics and psychiatric institutions in Mexico City. The main finding of this report is that the Mexican government has failed to implement policies that ensure that women with psychosocial disabilities have safe access to sexual and reproductive health services, on an equal basis with others. It is recommended this research be extended to the rest of the country to gain a clearer picture on the situation of the sexual and reproductive rights of women with disabilities at a national level

Human Rights

www.macao-tz.org
December 2014

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Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Moving forward and gaining ground: the sterilisation of women and girls with disabilities in Australia

FROHMADER, Carolyn
June 2012

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This paper addresses the issue of forced sterilisation and reproductive right of women and girls with disability in Australia. "It discusses some of the critical issues in the consideration of forced sterilisation as a human rights issue, and looks at some of the key strategies WWDA has employed to advance our efforts to promote the sexual and reproductive rights of disabled women and girls, on an equal basis with other women and girls"
Available in pdf, word, large print text only and powerpoint presentation formats

Access to health care, reproductive health and disability: A large scale survey in Sierra Leone

GROCE, Nora
TRANI, Jean-Francois
BROWN, Joyce Brown
KETT, Maria
BAH, Osman
MORLAI, Teddy
BAILEY, Nicki
2011

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This is the first study to compare health status and access to health care services between disabled and non-disabled men and women in urban and peri-urban areas of Sierra Leone. It pays particular attention to access to reproductive health care services and maternal health care for disabled women. A cross-sectional study was conducted in 2009 in 5 districts of Sierra Leone, randomly selecting 17 clusters for a total sample of 425 households. All adults who were identified as being disabled, as well as a control group of randomly selected non-disabled adults, were interviewed about health and reproductive health. As expected, we showed that people with severe disabilities had less access to public health care services than non-disabled people after adjustment for other socioeconomic characteristics (bivariate modelling). However, there were no significant differences in reporting use of contraception between disabled and non-disabled people; contrary to expectations, women with disabilities were as likely to report access to maternal health care services as did non-disabled women. Rather than disability, it is socioeconomic inequality that governs access to such services. We also found that disabled women were as likely as non-disabled women to report having children and to desiring another child: they are not only sexually active, but also need access to reproductive health services.

The balanced counseling strategy plus : a toolkit for family planning service providers working in high HIV/STI prevalence settings

POPULATION COUNCIL
2011

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"This "is an interactive, client-friendly approach for improving counseling on family planning and prevention, detection, and treatment of sexually transmitted infections (STIs) including HIV. The BCS+ was adapted from the Balanced Counseling Strategy, an evidence-based and well-researched tool for improving counseling on contraceptive methods. The BCS+ toolkit, developed and tested in Kenya and South Africa, provides the information and materials needed for health care facility providers to provide complete and high-quality family planning counseling to clients who live in areas with high rates of HIV and STIs.The BCS+ tools are generic and can be revised according to national and/or regional guidelines and different contexts
This second edition toolkit includes the following: * BCS+ Trainer’s Guide: Supervisors and others can use this to train health care facility directors and service providers on how to use the BCS+ for counseling family planning clients. * BCS+ User’s Guide: This guide focuses on how to implement the Balanced Counseling Strategy Plus. It can be distributed during training or used on its own with the BCS+ job aids. * BCS+ job aids comprising: - BCS+ algorithm that summarizes the 19 steps needed to implement the BCS+ during a family planning counseling session. These steps are organized into four stages: pre-choice, method choice, post-choice, and STI/HIV counseling. - BCS+ counseling cards that the provider uses during a counseling session. There are 26 counseling cards, the first of which contains six questions that the service provider asks to rule out the possibility a client is pregnant. Each of the next 16 cards contains information about a different family planning method. The next 3 cards provide advice on pregnancy and the postpartum period. The last 6 cards provide essential information for counseling on preventing, detecting, and treating STIs and HIV. - BCS+ method brochures on each of the 16 methods represented by the counseling cards. The brochures provide counseling to clients on the method they have chosen and then are given to clients for later reference. This means clients do not have to rely on their recollection of what was discussed with the provider. - WHO Medical Eligibility Criteria Wheel (offsite link) guides providers through medical conditions and medications that may be contraindications to use of particular contraceptive methods. The BCS+ tools are generic and can be revised according to national and/or regional guidelines and different contexts"
A video describing use of the BCS+ toolkit in South Africa also is available. To obtain Microsoft Word versions of BCS+ files to modify or revise according to your local setting, please contact the publisher

A handbook for network support agents and other community workers supporting HIV prevention, care, support and treatment

March 2009

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This manual is intended to help network support agents and other community workers be more effective in disseminating standardised information about HIV and AIDS. It "...emphasises the importance of the acquisition of knowledge, skills and the right attitude needed to identify the psychosocial needs of people of people infected and affected by HIV/AIDS and address these needs by giving information, counselling and appropriate referrals. Knowledge of counselling and psychosocial care, is combined as much as possible with prevention activities such as adopting HIV basic care positive prevention and adherence to treatment"

Preventing HIV/AIDS among persons with disabilities : a handbook for policy makers, healthcare providers and care givers of people with disabilities

IVOM, Damian O
2009

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This handbook highlights the factors responsible for the spread of HIV, methods of preventing it within persons with disabilities and how they can be reached and integrated into HIV and AIDS programmes and activities, so as to cause a reduction within its communities and in the general population. It is premised on the fact that many programmes and activities on HIV and AIDS in developing countries especially Sub-Saharan Africa have not realised the need to include persons with disabilities

PleasureABLE : sexual device manual for persons with disabilities

NAPHTALI, Kate
MACHATTIE, Edith
2009

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"This manual was created as a practical resource for persons with disabilities and health care clinicians who work with these clients. It includes research, clinical expertise, and product information to aid with dialogue surrounding sexual and reproductive issues and disabilities. The information presented here is not prescriptive, and the specific products not recommended per se, but are meant to provide examples and illustrations of some of the potential options that can be introduced into the sexual practices of the individual or be used as an adjunct in the discussions of sexuality and disability by the health care clinician. The devices included are a sampling of what is available (in Canada) in 2009"

The active community engagement continuum

RUSSELL, Nancy
et al
July 2008

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The active community engagement continuum (ACE) provides a framework for analysing community engagement in reproductive health and family planning and the role the community plays in institutionalising lasting behaviour and social change. It involves a process that includes the sharing of information with stakeholders and the local community

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