Resources search

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

Expand view

Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

Design journey of an affordable manual standing wheelchair

SHAIKH-MOHAMMED, Javeed
DASH, Swostik Sourav
SARDA, Vivek
SUJATHA, S
2021

Expand view

Purpose: Only 1 in 10 people with disabilities can access assistive devices, underlining the critical need for low-cost assistive products. This paper describes the design evolution of a manual user-operated standing wheelchair (SWC), translating from prototype to product.


Methods: The SWC design has been refined over 5 years through multiple iterations based on comments from user trials. The SWC product, Arise, provides standing functionality, facile outdoor mobility, afford- ability, customisability, and is aesthetically pleasing. A one-time fitting and training ensure optimal effort for operation, correct posture, and comfortable user experience. The SWC accommodates users of differ- ent sizes and body weights (up to 110kg) and minimises user effort with the use of a gas spring. Incorporating discrete adjustments enables customisation while retaining the advantages of mass manu- facturing, which is necessary for ensuring affordability.

 

Results: The SWC has been field-tested and well received by over 100 wheelchair users, and Arise was launched recently by the industry partner.


Conclusions: It should be noted that RESNA cautions on the use of any standing device without medical consultation. Nevertheless, with appropriate dissemination and awareness, it is anticipated that the afford- able SWC product, Arise, will immensely benefit the eligible users and make a difference in their quality of life.

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

Expand view

Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

Expand view

Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Mixed-Methods Programme Evaluation of Disability Equality Training (DET) in Mongolia

Higashida, Masateru
Gereltuya, Ganbayar
Altanzul, Gantaikhuu
2020

Expand view

Purpose: An evaluation of a disability equality training (DET) programme, based on the social model of disability, was conducted to explore the changes in the participants’ attitudes and behaviours in Ulaanbaatar, Mongolia.

 

Methods: This study is composed of two parts. First, the participants’ attitude changes during DET sessions were examined through a descriptive quantitative and qualitative analysis of questionnaires and related documents. Second, thebehavioural changes at the organisational and individual levels, the impact on society, and related factors were explored by quantitative and qualitative analysis of good practice cases: 39 participants were selected through purposive sampling and semi-structured interviews were conducted.

 

Results: It was found that most participants adopted the social model perspective within these sessions. A qualitative content analysis of the good practice cases also found that the majority of participants attempted to change their social environments after the sessions. Thematic analysis identified promotional factors, such as within-organisation dynamics and compatibility and barriers at the individual and organisational levels, which were associated with participants’ behaviours after DET sessions.

 

Conclusion: The implications of these findings are discussed in connection with the strategic implementation of DET to promote disability-inclusive development. Future studies should examine the effectiveness of a strategy by considering the factors identified in this study and by using a reliable sample in various settings where DET sessions are conducted.

The social and human rights models of disability: towards a complementarity thesis

LAWSON, Anna
BECKETT, Angharad E
2020

Expand view

This article aims to reorient thinking about the relationship between the long-standing social model of disability and the rapidly emerging human rights model. In particular, it contests the influential view that the latter develops and improves upon the former (the improvement thesis) and argues instead that the two models are complementary (the complementarity thesis). The article begins with a discursive analysis of relevant documents to investigate how each of the two models has been used in the crafting and monitoring of the UN Convention on the Rights of Persons with Disabilities. This highlights the increasing importance of the human rights model in this policy context. It also provides examples of the operation of the two models which inform the remainder of the discussion. We then critique the comparisons between the models which underpin the improvement thesis; and, drawing on Foucault’s technologies of power and Beckett and Campbell’s ‘oppositional device’ methodology, deepen and develop this comparative analysis. The result, we argue, is that the two models have different subjects and different functions. In the human rights context, their roles are complementary and supportive.

Aid Connect Inclusion Works (NIGERIA) Qualitative Formative Research

BBC Media Action
April 2020

Expand view

BBC Media Action is implementing a Department for International Development (DfID) funded project aimed at increasing action and investment from private, public and civil society actors to enable economic inclusion for women and men with disabilities through employment, with focus on FCT, Lagos and Kano states. The formative research provides insights to help (re)shape the design and implementation of media capacity strengthening activities on the project.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Experiences of teaching sexual and reproductive health to students with intellectual disabilities

NELSON, Becky
PETTERSSON, Karen Odberg
EMMELIN, Maria
2020

Expand view

There is growing awareness and international commitment to improving sexual and reproductive health for persons with intellectual disabilities. Despite this, people with intellectual disabilities continue to face stigma and have limited access to sexual health education and information. This qualitative phenomenological study uses data from 10 interviews to describe what it means to teach sexual and reproductive health and rights to students with intellectual disabilities at special-needs schools in southern Sweden. The meaning of teachers’ experience is described through their efforts to ‘accept the challenge to coach special-needs students into adulthood’. Findings show that sexual and reproductive health in special-needs schools covers a broad range of topics and that the teacher must adapt to students’ shifting needs. They also reveal that teachers are motivated and have access to the necessary resources to teach sexual and reproductive health but feel they lack the skills to address students’ particular sexual health issues, including questions of culture and religion. Schools are the main source of sexual health information in Sweden and therefore play a crucial role in providing equal education and promoting public health.

Coordination between health and rehabilitation services in Bangladesh: Findings from 3 related studies

PRYOR, Wesley
MARELLA, Manjula
NGUYEN, Liem
SMITH, Fleur
JALAL, Faruk Ahmed
CHAKRABORTY, Ripon
HAQUE, Mazedul
MOSTOFA, Golam
HASAN, Rajib
April 2019

Expand view

The unmet need for rehabilitation is profound and is likely to worsen as population health shifts towards longer lives lived with more ill-health and disability. The WHO Global Action Plan on Disability and the Rehabilitation 2030 framework [1] call for quality evidence to inform targeted responses.
The intent of this work is to examine six IDSCs (Integrated Disability Service Centres) in detail but to use the results to inform new activities through the network of more than 100 Integrated Disability Service Centres, with potential to influence practice in other services. As such, results of this work have the potential to directly inform policy decisions concerning future investments in rehabilitation services in Bangladesh and bring awareness to key stakeholders on current challenges and potential solutions.

Research was conducted during March-October 2018 in Kurigram, Tangail, Manikgonj, Dhaka and Narsingdi districts of Bangladesh to map out the current trends and determinants of good coordination
between health and rehabilitation, emphasising quantitative measures of: timeliness, continuity, acceptability, availability and integration

Utilisation and Satisfaction with Health Services among Persons with Disabilities in Accra, Ghana

ABRAHAM, Annang Yemoson
AGYEI-BAFFOUR, Peter
YARFI, Cosmos
2018

Expand view

Purpose: Healthcare, one of mankind’s basic needs, is generally accessible to persons without disability, but people with disabilities are marginalized and stigmatized in developing countries and as such are unable to utilise the health services they require.  The health-related Sustainable Development Goals (SDGs) talk about good health and well-being, and about reducing inequality in societies. In South Africa and Ghana, constitutional provisions and policies have been made for inclusion and for reducing inequality among persons with disabilities, but implementation is still in its infancy. The aim of this study is to determine the level of utilisation and satisfaction with health services among persons with disabilities, and to recommend strategies to improve the current situation in the country.

 

Method: A non-interventional, descriptive cross-sectional study was employed, with a quantitative data collection method. A structured questionnaire comprising of both open- and closed-ended questions was used for the data collection. A total of 363 respondents were involved in the study – 360 were persons with disabilities, and 3 were key informants.

 

Results: While A total of 66.9% of persons with disabilities reported being warmly received by health professionals, 23.1% reported encountering a cold attitude, and 5.6% reported being scorned at health facilities. Only 20.5% of persons with disabilities reported frequent visits to health facilities, 42.8% did not visit health facilities frequently, and 36.4% rarely visited a health facility. Moreover 76.4% reported that they made hospital visits for all their ailments.

 

Conclusion: Although health facilities were utilised by few persons with disabilities, the majority of respondents reported that they were well-received there and as such would visit health facilities for all their medical needs.

 

Implications: Persons with disabilities should be included in all areas of society by spreading awareness about their abilities. Partnerships between persons with disabilities and the government and other non-governmental  organization’s should be established, to mainstream health services to meet their general and specific needs. It is increasingly important that persons with disabilities play an active role in managing their healthcare needs.

Barriers to Healthcare Services for People with Disabilities in Developing Countries: A Literature Review

BAART, Judith
TAAKA, Florence
2018

Expand view

Purpose: This literature review aimed to identify the main barriers in access to mainstream healthcare services for people with disabilities.

 

Method: Online databases were searched for relevant articles published after 2006.  Preference was given to articles pertaining to developing countries. On the basis of pre-determined inclusion and exclusion criteria, 16 articles were selected for the review. Barriers noted in the articles were grouped thematically.

 

Results: There appeared to be 7 main barriers - 4 related to the demand side i.e., pertaining to the individual seeking healthcare services, and 3 barriers on the supply side i.e., pertaining to healthcare provision. These are: 1) Lack of information; 2) Additional costs of healthcare; 3) Limited mobility; and, on the demand side, 4) Stigmatisation; while on the supply side, 5) Staff attitude; 6) Communication barriers; and, 7) Inaccessible facilities.

 

Conclusion: To ensure that people with disabilities can successfully access the necessary health services, the barriers on the demand side (the individuals requiring healthcare) as well as the barriers that are part of the healthcare system, should be attended to.

Access to Services and Barriers faced by People with Disabilities: A Quantitative Survey

GRILLS, Nathan
SINGH, Lawrence
PANT, Hira
VARGHESE, Jubin
MURTHY, GVS
HOQ, Monsurul
MARELLA, Manjula
2017

Expand view

Purpose: In low- and middle-income countries, reliable and disaggregated disability data on prevalence, participation and barriers is often not available. This study aimed to estimate disability prevalence, determine associated socio-demographic factors and compare access in the community between people with and without disability in Dehradun district of Uttarakhand, India, using the Rapid Assessment of Disability Survey.

 

Methods: A cross-sectional population-based survey was conducted on a sample of 2431 adults, selected using a two-stage cluster randomised sampling technique. The survey comprised an interviewer-administered household survey and an individual survey measuring disability, wellbeing and participation.  For each person with disability, an age and sex-matched control (without disability) was selected. In addition to prevalence, the difference in participation and barriers faced by people with and without disability were analysed.

 

Results and Conclusions: The prevalence of disability was 6.8% (95% CI 5.8-7.8) with significant associations with age, sex, economic status, education and employment. Psychosocial distress (4.8%) and mobility impairment (2.7%) were the most common disabilities identified. The study showed that people with disabilities had significantly less access to services than those without disability, and the barriers reported most often were lack of information, transport and physical inaccessibility.

Human rights and disability: A manual for national human rights institutions

CROWTHER, Neil
QUINN, Gerard
REKAS, Abigail
March 2017

Expand view

(Updated Dec 2018)

This Manual is designed to provide practical guidance for national human rights institutions (NHRIs) that are actively working to advance the human rights of persons with disabilities, as well as those NHRIs that are seeking to strengthen their efforts in this area. This Manual provides practical guidance and recommendations about how the role and functions of NHRIs can be directed to provide better protection for persons with disabilities, to promote greater awareness and respect for their rights, and to monitor the progress made and obstacles encountered in advancing their rights.

There are three parts to the manual.

  • Part I: The concepts - the human rights framing of disability
  • Part II: The law - international human rights law and disability (CRPD and others)
  • Part III: The practice - what NHRIs can do to contribute to the process of change

 

 

Community-Based Rehabilitation Services in Low and Middle-Income Countries in the Asia-Pacific Region: Successes and Challenges in the Implementation of the CBR Matrix

Cayetano, Roi Dennis Adela
Elkins, Jeananne
2016

Expand view

Purpose: This literature review aims to explore the importance of physical therapy services and the increasing awareness of CBR, specifically related to challenges in its implementation in low and middle-income countries in the Asia-Pacific region.

 

Method: A literature review of multiple databases was conducted to locate relevant articles written within the past five years. The databases used for the search were Google Scholar, Cochrane Library, CINAHL, and PubMed.

 

Results: Thirteen articles about CBR were included in the literature review. These consist of studies on the quality of life, access to healthcare services, and barriers to CBR, as well as about the impact of CBR to LMICs and stakeholders. The articles demonstrate the vast potential of CBR, especially in LMICs in the Asia-Pacific region, with a significant positive impact on the lives of people with disabilities.

 

Conclusion: CBR has improved the quality of life, access to medical services, functional independence, autonomy, community inclusion, and empowerment of people with disabilities in LMICs in the Asia-Pacific region. However, challenges in the implementation of CBR remain. These include lack of awareness and understanding of CBR, and physical, environmental, socio-economical and personal barriers.

An Opportunity for Charity? A Catholic Tradition in Understanding Disability and Its Impact on Ministry

MASTERS, Anne
2016

Expand view

David Perry, the father of a boy with Down Syndrome, wrote an angry reaction to Pope Francis’ references to individuals and families living with disabilities in Amoris Laetitia. Perry is con- cerned about the limited perspective of persons with disabilities that is portrayed in the texts, which show families commended for their love and tolerance, with a lack of appreciation for the person with a disability as a person of interest, rather than an object of pity. He offers further reflections of caution and hope in response to words and actions of Pope Francis during a Mass celebrating disability awareness. Perry’s comments provide the starting point for reflecting on the image of persons with disabilities presented in Amoris Laetitia and a discussion of possibilities for charity to serve as a corrective for this and pastoral practice.

‘Everyone needs love’ – an interview study about perceptions of love in people with intellectual disability (ID)

MATTILA, Jenni
MÄÄTTÄ, Kaarina
UUSIAUTTI, Satu
2016

Expand view

How do people with intellectual disability (ID) perceive love and its role in their lives? The purpose of this study was to give voice to people with ID themselves and provide information about their needs for love. The study analysed how seven Finnish young adults with mild ID (5 women and 2 men) aged between 18 and 31 years described love and the meaning of love in their lives in semi-structured, qualitative theme interviews. The analysis was theory-led content analysis. The findings showed that the young adults with ID could describe love primarily as emotions and concrete acts, but perceived love as knowledge and skills more difficult to describe. However, the meaning of love was considered crucial and important for everyone’s well-being. The study suggests that the views and opinions of people with ID should be given more attention so that the support and guidance they are given would better need their needs. In addition, the study highlights everyone’s right to love? As per the style. Please suggest.

Interventions to improve the labour market situation of adults with physical and/or sensory disabilities in low and middle-income countries : a systematic review

TIPNEY, Janice
et al
November 2015

Expand view

This systematic review analyses the methodology, collection, and results of fourteen individual studies that examined the effectiveness of fifteen different intervention methods to assist students with disabilities in low and middle income countries to improve the labour market situation

Campbell Systematic Reviews 2015:20

 

Knowledge of Primary School Teachers in Identifying Children with Learning Disabilities

Shari, M
Vranda, Mysore Narasimha
2015

Expand view

Purpose: This study explores the knowledge of primary school teachers inidentifying children with learning disabilities.

 

Method: The study sample consisted of 200 primary school teachers from 16 schools in Bangalore, India. The teachers’ knowledge about learning disabilities was assessed using Knowledge Questionnaire on Learning Disabilities.

 

Results: The results revealed statistically significant differences in overall knowledge and various domains across gender, type of school, education, class being taught and years of experience.

 

Conclusion: The need to improve the knowledge of primary school teachers for the identification of children with learning disabilities was highlighted. Based on the findings of the study, the “Manual for Primary School Teachers on Learning Disabilities” was developed.

Developing human rights based indicators to support country monitoring of rehabilitation services and programmes for people with disabilities : a study protocol

SKEMPES, Dimitrios
BICKENBACH, Jerome
September 2015

Expand view

This paper seeks to develop a study protocol that can assess and improve the provision of rehabilitation services for people with disabilities across the world. The research targets a knowledge gap that exists whereby there are no indicators to reliable identify the performance of rehabilitation systems and monitoring technologies. The paper provides a detailed analysis of the issue before outlining and justifying a choice of methods for data collection and analysis, and the likely impact and use of the study results

BMC International Health and Human Rights, 15:25

Pages

E-bulletin