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Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
English
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Loneliness in life stories by people with disabilities

TARVAINEN, Merja
English
2020

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This study investigates loneliness in life stories by people with disabilities. By approaching loneliness from a relational perspective, this study attempts to illustrate how loneliness and disability are intertwined in the life course. The research question was as follows: How do people with disabilities understand loneliness in their life stories? Life story data ‘Life of Disabled Persons in Finland 2013–2014’ was analysed with a narrative life course approach. Loneliness was narrated in accordance with normative life course expectations. People with disabilities narrated loneliness as unbelonging in childhood, disjointed youth and disaffiliation to normative institutions in adulthood. This study suggests that relation between loneliness and disability concern the conditions of inclusion that is the conditions of living and telling.

  • Loneliness involves both unwanted emotions and social isolation. 
  • In many societies, both loneliness and disability bear a stigma. This so-called double stigma affects the lives of people with disabilities.
  • This study explores loneliness and disability in life stories by people with disabilities in Finland from a life course perspective. Although scholars have widely studied loneliness in Finland, they have not studied loneliness in people with disabilities in any great depth.
  • Loneliness in life stories by people with disabilities was narrated in relation to a sense of bodily difference and occurred as a disconnection from a socially ‘standard’ life course. Loneliness was located within three main phases: childhood, youth and adulthood. Negative attitudes towards disability feed social isolation and emotional loneliness.
  • Further research on disability and loneliness throughout the life course as well as more discussion about the conditions of inclusion and the emotional patterns of social relations are needed.

Introduction: disability, partnership, and family across time and space

VIKSTRÖM, Lotta
SHAH, Sonali
JANSSENS, Angélique
English
2020

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Notions of family life and romantic partnership, like notions of disability, have been culturally constructed and socially produced over historical time, and our understandings of these notions are being continually challenged and re-negotiated across time and space. Policies, institutions, and cultural practices across the globe have brought about changes to the construction of the family and to the rights and inclusion of disabled people in private and public life. This special issue brings together a collection of studies from different countries and time periods to explore the interplay between disability, romantic partnerships, and family life across the individual lifetime and between generations. With this interdisciplinary collection, we seek to merge disability research and research on family and partnerships through a life course lens. This offers unique insights and opportunities to interconnect his- torical and cultural location and changing social institutions with individual and family experiences. This introduction presents the eight studies in the collection and discusses them within a life course frame that views disabled people’s roles as partners, spouses, and members of a family. In so doing, it engages in an analysis of (dis)similarities concerning how family dynamics, romantic relationships, and disability have developed over time and in different spaces.

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

MEANEY-DAVIS, Jessie
LEE, Harri
ANDRAE, Karen
English
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? 

Marriages among people with disabilities in 19th-century Sweden: marital age and spouse’s characteristics

VIKSTRÖM, Lotta
HAAGE, Helena
HÄGGSTRÖM LUNDEVALLER, Erling
English
2020

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While marrying was an expected event in 19th-century Western society and has been subject to much historical research, there are few studies on how disabilities influenced people’s marriage patterns and spouse selection. The aim of this analysis is to contribute clarification on this issue by examining with whom disabled men and women married and the marital age and socio-demographic characteristics of them and their spouses. In total, 188 disabled individuals born in the first half of the 19th century and who married in the Sundsvall region, Sweden, are studied. The results reveal that disabled men and women did not marry each other, and they entered into marriage at a slightly higher age than the average, although there was usually no marked age gap between them and their spouse. Endogamous patterns were primarily found regarding the socio-spatial background of the two spouses. This analysis is one of the few studies identifying the mar- riages among a comparatively large number of disabled people using demographic data. Their participation in the partner pool highlight their agency historically and emphasize that disability did not lead to distance from social life in past society.

 

 

The impact of disability on partnership formation in Sweden during 1990-2009

NAMATOVU, Fredinah
HÄGGSTRÖM LUNDEVALLER, Erling
VIKSTRÖM, Lotta
English
2019

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Evidence suggests that disability negatively affects people’s propen- sity to find a partner. Persons with disabilities that eventually find a partner do so later in life compared to the average population. There is a lack of studies on the differences in partnership opportu- nities for persons with disabilities compared to those without dis- abilities in Sweden. The aim of this study is to assess the impact of disability on partnership formation and to assess whether partner- ship formation varies as a function of individual demographic and socio-economic factors. We use nationwide data available in the Swedish Initiative for Research on Microdata in Social and Medical Sciences (Umeå SIMSAM Lab). We follow persons born from 1973 to 1977 when they were from 16 to 37 years of age and analyze their data using logistic regression. Our findings indicate that regardless of whether a person started to receive a disability pension at an early age or later, it was associated with lower odds for partnership forma- tion. For persons who started receiving disability pension from 16 to 20 years of age, chances for partnership formation reduced with increase in age of partnership. Individuals that started to receive disability pension later were more likely to form partnership prior to receiving disability pension. Partnership formation was less likely among persons born outside Sweden, in persons with mothers born outside Sweden, in individuals born by unmarried mothers and in persons, whose mothers had a high level of education. Partnership was high among women and among persons who had many mater- nal siblings. In conclusion, receiving disability pension was associated with reduced chances for partnership formation. Receiving disability pension might imply financial constraints that negatively influence partnership formation supporting Oppenheimer’s theory on the eco- nomic cost of marriage and the uncertainty hypothesis.

Children with hearing impairment in Malawi, a cohort study

MULWAFU, Wakisa
English
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

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
English
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
English
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

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

MASHOLA, Mokgadi K.
MOTHABENG, Diphale J.
English
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

Sexual exploitation and abuse and sexual harassment (SEAH) of people with disabilities: prevalence, incidence and severity, Disability Inclusion Helpdesk Research Report No. 4

FRASER, Erika
LEE, Harri
WAPLING, Lorraine
English
February 2019

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This rapid review addresses the queries:

  • What is known about the prevalence, incidence and severity of the sexual exploitation and abuse and sexual harassment of people with disabilities. This should take into account age and gender where possible, and humanitarian and conflict contexts. It would be good to know: - Globally and in specific regions, what evidence exists about the extent of sexual exploitation, abuse and harassment of people with disabilities (disaggregated by age and gender)?
  • What evidence exists about the extent of sexual exploitation, abuse and harassment of people with disabilities in the aid sector, including both recipients of aid and working in the aid sector (disaggregated by age and gender)?
  • What are the barriers to reporting for people with disabilities?
  • What is your assessment of the quality of the evidence? Where are the gaps?

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

DEVKOTA, Hridaya R.
KETT, Maria
GROCE, Nora
English
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
English
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
English
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
English
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
English
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.

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

TOUGH, Hannah
SIEGRIST, Johannes
FEKETE, Christine
English
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
English
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
English
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
English
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.

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