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Disability Inclusion Helpdesk Report No: 38 : Disability and Child Marriage

MEANEY-DAVIS, Jessie
LEE, Harri
ANDRAE, Karen
May 2020

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Summaries on the findings from the following queries:

Is there evidence that suggests children with disabilities are more/less vulnerable to child marriage than children without disabilities? If yes, what are the driving factors for this?

What are some of the evidence-based interventions we could think about to ensure that children with disabilities affected by child marriage are not left behind? How can we better mainstream disability inclusion in the programme? 

Children with hearing impairment in Malawi, a cohort study

MULWAFU, Wakisa
et al
October 2019

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The aim of this research was to assess the outcome of children with ear and hearing disorders 3 years after initial diagnosis, in terms of referral uptake, treatment received and satisfaction with this treatment. It also aimed to assess the social participation of the affected children, specifically, their ability to make friends and communicate needs, and their enrolment at school

752 children had been diagnosed in 2013 as having a hearing impairment and 307 (40.8%) children were traced for follow-up in 2016. 

 

Bulletin of the World Health Organization, Volume 97, Number 10, October 2019, 645-728

http://dx.doi.org/10.2471/BLT.18.226241

Associations between health behaviour, secondary health conditions and quality of life in people with spinal cord injury

MASHOLA, Mokgadi K.
MOTHABENG, Diphale J.
2019

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Background: The development of secondary health conditions (SHCs) after spinal cord injury (SCI) is common and can affect an individual’s emotional well-being, and his or her health-related quality of life (QOL). Little is known about relationships between performing health-benefiting behaviours and the presence (or absence) of SHCs and QOL, particularly in South Africa.

 

Objectives: This research study was conducted in order to determine the associations between health behaviour, SHCs and QOL in people with SCI (PWSCI).

 

Method: This cross-sectional study included 36 PWSCI discharged from a private rehabilitation facility in Pretoria, South Africa. The PWSCI completed questionnaires pertaining to lifestyle, independence, presence of SHCs, social support and QOL. Data were analysed using descriptive and inferential statistics such as correlation tests and chi-square test of independence (x2) using the SPSS v25. Moderate, moderately high and high correlations are reported (Pearson r ≥ 0.4). Results were significant if p < 0.05.

 

Results: Participation in health-benefiting behaviour was associated with increased QOL (r = 0.457, p < 0.01) and increased social support from family and friends (r = 0.425, p < 0.01), which was associated with increased QOL (r = 0.671, p < 0.001). Not participating in specific neuromusculoskeletal health behaviours was found to be associated with the overall presence of SHCs (r = -0.426, p < 0.01).

 

Conclusions: Participating in health-benefiting behaviour can reduce the development of SHCs and subsequently increase QOL in PWSCI. Health professionals must focus on minimising the development of SHCs by providing specific education on good health-benefiting behaviour.

 

African Journal of Disability, Vol 8, 2019

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

Mobile technology and inclusion of persons with disabilities

THOMPSON, Stephen
May 2018

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This K4D Emerging Issues report highlights research and emerging evidence that show how mobile-enabled services can help increase inclusion of persons with disabilities. The aim is to provide UK Government’s Department for International Development (DFID) policy-makers with the information required to inform policies that are more resilient to the future. This report provides a synthesis of the current evidence on how mobile technology and mobile-enabled services can help increase inclusion of persons with disabilities. It was originally planned that this report would also explore how mobile enabled technology might exacerbate existing inequalities. Some evidence was found to focus on the barriers to ICT that marginalised groups encounter, however, no evidence was found to focus on how mobile technology might exacerbate inequalities. As such, the report focuses on the positive impact that mobile technology has been shown to have in increasing the inclusion of persons with disabilities. 

This report focuses specifically on evidence produced by academic research from low and middle income countries

Disability inclusion in child protection and gender based violence programmes. Outreach, safe identification and referral of women, children, and youth with disabilities

WOMENS REFUGEE COUNCIL
UNICEF Lebanon
February 2018

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A needs assessment conducted in 2017 confirmed that women, children and youth with disabilities in Lebanon and their caregivers are facing a range of gender based violence (GBV) -related risks including: child marriage among girls with disabilities; exploitation of women and adolescent girls with disabilities and female caregivers; intimate partner violence (IPV) against women with disabilities; sexual harassment by male community members

This guidance is designed to support frontline workers, community volunteers and mobilizers who are working in GBV prevention and response, and their supervisors, to foster inclusion of persons with disabilities in their community activities. It includes guidance, key actions and tools to improve accessibility of existing community processes and activities relating to GBV. 

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

Social relationships, mental health and wellbeing in physical disability: a systematic review

TOUGH, Hannah
SIEGRIST, Johannes
FEKETE, Christine
May 2017

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The aim of this study is to systematically review quantitative studies exploring associations of social relationships with mental health and wellbeing in persons with physical disabilities. The objective is to summarise a complex and heterogeneous body of empirical research on the association of different social relationship constructs with mental health and wellbeing in physical disability and to highlight conceptual and methodological deficiencies in the field of research. The literature search included original articles published in English between January 1, 1995 and May 31, 2016. Data was extracted on study and participants’ characteristics, independent and dependent variables, used measures and effects sizes of associations between social relationships and mental health or wellbeing. A narrative review was performed to synthesise findings along the constructs social support, social networks, negative social interactions, family functioning and relationship quality.  Of the 63 included studies, 47 were cross-sectional and 16 longitudinal.

BMC Public Health (2017) 17:414 

DOI 10.1186/s12889-017-4308-6

Linking rehabilitation and social work using the personalised social support process: Steps to establish a social work unit and future directions for social work in Cambodian PRCs using the model developed at Kampong Cham

PEARSON, Anita
SONG, Sit
2017

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This publication intends to draw lessons learned from the set-up of a Social Work (SW) unit in the PRC in Kampong Cham province of Cambodia using the Personalized Social Support (PSS) process and provide an example of person-centered approach in rehabilitation service delivery, to be considered by PWDF and other rehabilitation I/NGOs and promoted within other PRCs in Cambodia. The specific objectives of this publication are: 

  • To identify recruitment strategies and clinical activities conducted by the SW unit 
  • To consider the capacity development of SW staff along the development of a SW unit
  • To outline how SW and PSS are linked to the Cambodian Ministry of Social Affairs Veterans and Youth Rehabilitation Guidelines on Physical Rehabilitation in Cambodia4 (also known as the Standard Working Procedures -SWP) with reference to its application.
  • To consider how SW interventions and PSS contributes to service users’ social participation and rights.

Capturing best practices through a ‘’lessons learnt’’ process can be utilized to advocate for the adoption and replication of such a model within wider rehabilitation services in Cambodia.

This publication was developed by a mixed methods approach on the basis of various sources and tools, including:

  • Desk review including collection of documents and tools used by the SW unit, and field visit reports
  • Workshops/meetings with the PRC Manager, PRC Unit heads and Focal Clients (FC) to gain reflections on the process and map a reverse pathway of change
  • Key Informant interviews: Interviews with members of the project team and local authorities.
  • Case study frames were designed and used as well as some questions from SCOPEO5 Quality of life linked to social and personal relationships during the interview. 
  • Interviews with 15 beneficiaries (SW Clients at the PRC) to assess the impact of SW input over a 13 month period from June 2015 to July 2016

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.

Disability, family and identity

SCHNEIDER, Cort
October 2016

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Many people with disabilities struggle with issues that relate to identity development.  Many people with disabilities find it difficult to develop a positive sense of self. There is also no question that familial relationships play a significant part in the process of identity construction for people with disabilities. Thus, it is important to examine how family relationships influence the process of identitydevelopment for people with disabilities. Conversely, it relevant to explore how a person’s identity development can impact his or her relationship with family members. This article employs an autoethnographic approach to research in order to examine issues that relate to disability, identity and family. It elucidates the complex nature of family scripts and identity. In addition this paper contends that the process that an individual goes through in order to “come to terms” with a disabled identity, can transform the relationships that an individual has with various family members.

 

Considering Disability, Vol.1, Issue 3&4

DOI: 10.17774/CDJ1.32016.2.20575874

Hear my voice: old age and disability are not a curse. A community-based participatory study gathering the lived experiences of persons with disabilities and older people in Tanzania

MRISHO, Mwifadhi
FAKIH, Bakar
GREENWOOD, Margo
STEFF, Marion
2016

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Community based participatory research (CBPR) was used to provide evidence on the specific nature and experiences of persons with disabilities and older people from their own perspectives in Tanzania, through the lens of social, political, economic and cultural inclusion. The aim was to strengthen efforts to provide services for and improve the lives of people living in the rural and urban settings of Nachingwea and Kibaha Urban Municipal Council. Twenty-nine peer researchers (nine persons with disabilities, 10 older people and 10 Tanzanian Non-Governmental Organisation (NGO) members working in these communities) were involved in the study. A total of 106 stories were collected. Eight priority areas emerged and were chosen by peer researchers for further discussion in groups: access to education and quality learning; access to health services; issues fed back from NGOs; poverty relating to income and dependence; attitudes towards witchcraft and albinism; relationship difficulties and marriage breakdowns; sexual violence and gender issues; poor treatment from family
 

For Michael Charlie: Including girls and boys with disabilities in the global South/North

STIENSTRA, Deborah
2015

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Recognizing that there are pockets of the global South in the global North, I illustrate in this paper how Indigenous and northern children with disabilities and their relationships with their care providers have been rendered invisible and excluded by jurisdictional disputes between levels of government, an ongoing drive to institutionalize children with disabilities and longstanding colonial and capitalist values and systems. The paper highlights how Jordan’s Principle, an Indigenous childfirst response offers a small first step in ensuring children with disabilities in Indigenous and northern communities in Canada, access to necessary services in their communities.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 2

“We can also change” Piloting participatory research with persons with disabilities and older people in Bangladesh

BURNS, Danny
OSWALD, Katy
November 2014

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Sightsavers, HelpAge International, ADD International and Alzheimer’s Disease International worked together with the Institute of Development Studies (IDS) to bring the perspectives of those who live in poverty or who are highly marginalised into post-2015 policy making. The aim of the research was to understand better the experiences of social, political and economic exclusion of persons with disabilities and older people in Bangladesh from their own perspectives. Two groups (community and NGO) of peer researchers collected 70 stories from poor and/or excluded persons with disabilities and older people from each of the two sites: Bhashantek, an urban slum in Dhaka; and Cox’s Bazar, a rural area in southeast Bangladesh. From the stories collected and analysed in workshops, the peer researchers identified 13 priority areas that affect persons with disabilities and older people: accidents and disasters; livelihoods; access to education; medical treatment; family support; exclusion and mistreatment; superstition; access to services; mobility; marriage; land; rape and sexual abuse; the role of grassroots community-based organisations. Recommendations from the researchers are made in each area. The peer research programme was evaluated and guidelines for its use are provided.

Youth with disabilities: Working Paper 23

GROCE, Nora
KETT, Maria
April 2014

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Of all groups of youth, the group about which we know the least are youth with disabilities. In transition between childhood and adulthood, these are the years when all young people go through physical and psychological maturation, are expected to complete their education, acquire skills and assume a social identity that will enable them to fully participate in their communities and societies. This working paper discusses the issues faced by young people with disabilities and what is known and not known about this distinct age group

Working Paper 23

 

Social relationships, sexuality and reproductive rights & persons with disabilities : international workshop report

DEEPAK, Sunil
et al
March 2013

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"This report presents an analysis and an overview of main issues in relation to social relationships, sexuality and reproductive rights that emerged from the different presentations and discussions during the workshop. Most of the discussions and presentations focused on difficulties, barriers and challenges. There were a few positive examples of activities that answer those challenges and overcome those barriers. There were also some ideas of what can be or should be done in this area" “"Going beyond the taboo areas in CBR" workshop, part 1
Agra, India
29 November 2012

Violence and abuse towards persons with disabilities : international workshop report

DEEPAK, Sunil
et al
2013

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This second part of a community-based rehabilitation workshop report focuses on issues of violence, abuse and sexual abuse towards persons with disabilities. This report presents the information exchanged through formal presentations, personal testimonies, film clips, sharing of experiences and discussions around the workshop theme. The report highlights the main findings and presents five key recommendations
"Going beyond the taboo areas in CBR" workshop, part 2
Agra, India
30 November 2012

Zimbabwe sexual and reproductive health sign language dictionary

THE HIV AND AIDS MANAGEMENT AND SUPPORT ORGANIZATION (THAMASO-ZIMBABWE)
DISABILITY AND HIV AND AIDS TRUST(DHAT)
2012

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"The Dictionary includes an illustrated guide to signing and signing for individual letters, along with illustrations and descriptions for common words and for those new HIV/SRHR signs that have been developed, making it an invaluable reference for both those with hearing impairments and those without hearing challenges. The dictionary is suitable for use in educational institutions (schools, colleges and universities) as well as in health institutions such as hospitals, clinics and VCT centres. Counsellors and all staff working directly and indirectly in the HIV and SRHR sectors will find the dictionary most useful"

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