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Disability, Sociodemographics, and Discrimination: A Descriptive Analysis of Household Survey Data from Bangladesh

Ekman, Björn
Borg, Johan
Khan, AHM Noman
Bari, Nazmul
Tanbir, Moin
Emmelin, Maria
2020

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Purpose: Disability affects upwards of one billion people worldwide, the majority of whom live in low- and middle-income countries. Based on survey data from Bangladesh, the aim of the study is to contribute to an improved understanding of the experiences of people with disabilities in terms of discrimination, health, and sociodemographic indicators.

 

Method: A descriptive analysis of data is presented, from a survey implemented in 2016 on a sample of adult persons with disabilities from 18 districts in Bangladesh (n=1,900). The summary statistics of main indicators and correlation analysis of key variables are given.

 

Results: Women comprised around 40% of the sample. The mean age was 36 years (minimum 18 years and maximum 55 years). Women had lower socioeconomic status than men (p<0, 01), were less likely to be well-educated or employed, had worse self-assessed health (p<0, 05), and were less likely to be able to read and write. Men were more likely to have a physical disability than women (p<0, 01). Both women and men reported unmet needs in terms of access to assistive products and not receiving a benefit. Around 40 % of the sample reported having experienced discrimination, with no significant differences between women and men.

 

Conclusion and Implications: Many women and men with disability experience some forms of discrimination, including in matters pertaining to healthcare, education, and employment. Such experiences may have a negative impact on their life chances. However, women and men with a disability differ in several important respects, both in terms of socioeconomic status and types of disability. Such differences need to be considered for effective and equitable policy development.

Activity Limitation of People Affected by Leprosy in an Endemic District in West Bengal, India

Govindharaj, Pitchaimani
Srinivasan, Sampathkumar
Darlong, Joydeepa
2020

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Purpose: This study aimed to assess the level of activity limitation, and the factors associated with it, among people affected by leprosy who were reporting at a leprosy referral centre of Purulia, in West Bengal state, India.

 

Method: A cross-sectional study was conducted among 358 individuals affected by leprosy. Persons recruited for this study were above 18 years of age, married, and had been diagnosed with leprosy for at least 1 year at the time of the interview. A semi-structured questionnaire was used to gather information about the respondents’ socio-economic and disease status. The Screening of Activity Limitation and Safety Awareness (SALSA) Scale was used to measure activity limitation.

 

Results: Of the 358 respondents, 59% were male, 60% were between 18 and 45 years of age, and 42% were illiterate. About 144 or 40% of the respondents had Grade 2 disability and 60% had disease duration of more than 3 years. There were 229 individuals (64%) who had no limitation in activities, 103 (29%) had mild limitation and 26 (7%) had moderate to severe limitation in activities. There is a significant association between gender, age, occupation, physical disability and disease duration with activity limitation.

 

Conclusion: It appears that limitations in activities among persons affected by leprosy are associated with being a woman, ahousewife, an aged person, and with longer disease duration. The physical disability was intrinsically associated with limitation in activities.

Disclosure of Disease among Women affected by Leprosy: A Qualitative Study

Ramasamy, Senthilkumar
Govindharaj, Pitchaimani
Kumar, Archana
Panneerselvam, Suganya
2020

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Purpose: Although leprosy is completely curable with multidrug therapy, it is unfortunate that the stigma attached to leprosy persists even today. Fear of social exclusion prevents disclosure of the disease to the family and community. This study aimed to evaluate the extent of disclosure of disease among women affected by leprosy in a tertiary referral hospital in Chhattisgarh State, India.

 

Method: A qualitative study was conducted with 57 women affected by leprosy who reported at a tertiary referral hospital in Champa, Chhattisgarh State. The respondents were 18 years of age or older, and had completed multidrug therapy for leprosy. They were asked whether the disclosure of disease had affected their interactions with family, neighbours and community members.

 

Results: Of the 57 women, 48 (84%) had disclosed their disease to their family, 17 (30%) to their neighbours and 13 (23%) to the community members. Thirty women (53%) reported that they experienced problems after revealing the ailment to their family, friends and neighbours. The qualitative analysis found that negative behaviour towards people affected by leprosy still persists in the community. Consequently, women affected by leprosy try to hide their disease due to fear of negative community reactions.

 

Conclusion: This study emphasises the need to spread awareness about the disease and its transmission, by educating the people affected by leprosy, their families and the community. This should be a continuous process in order to reduce or remove the stigma and discrimination against women affected by leprosy, in particular.

User Satisfaction with Conventional Lower-Limb Orthotic Devices: a Cross-Sectional Survey in Pakistan

Aftab, Zohaib
Zaidi, Zohaib Ahmed
Shafi, Faraz
2020

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Purpose: Persons with disabilities affecting lower-limb function use ankle- foot-orthoses (AFO) and knee-ankle-foot-orthoses (KAFO) on a regular basis. However, the effectiveness of these devices in daily use is seldom evaluated, especially in the developing world. This study aimed to evaluate user satisfaction with lower-limb orthotic devices while performing a broad spectrum of daily life activities in Pakistan, and to document the desired outcomes.

 

Method: A survey was conducted among orthotic device users in the out-patient departments of three hospitals in Lahore, Pakistan. The survey questionnaire was devised by adapting the Prosthetic Evaluation Questionnaire to suit orthotics evaluation. Fifty-four AFO and KAFO users participated in the study.

 

Results: Most users felt comfortable while walking on even surfaces with their orthoses. However, donning/doffing these, climbing stairs and performing certain routine activities were considered problematic for most people. Energy conservation was the most desired AFO feature, while the KAFO users wanted automatic knee-joint function.

 

Conclusion and Implications: Overall satisfaction with the existing lower- limb orthoses is adequate. Yet, significant improvements are needed in terms of energy efficiency and comfort while walking on different terrains. Further research is required in order to improve the functioning of the existing orthotic devices.

Characteristics of Outpatients receiving Physical Therapy Services at a Provincial Hospital in Papua New Guinea: A Descriptive Case Study

Saito, Takashi
Bai, Angelberth
Matsui, Nobuko
Izawa, Kazuhiro P
Shuichiro Watanabe
Alfred Malagisa
2020

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Purpose: Development of Physical Therapy (PT) services for people with disability is one of the urgent challenges in the health sector in Papua New Guinea (PNG). However, information on the current status of PT services in PNG is scarce, as also is the case for the hospital-based outpatient PT services. This study aimed to describe the characteristics of outpatients receiving PT services in a provincial hospital in West New Britain (WNB) Province, PNG and to compare them with the characteristics of inpatients.

 

Method: This was a retrospective case study using outpatient and inpatient records. The records of clients receiving PT services as either outpatients (413 records, outpatient group) or inpatients (350 records, inpatient group) were reviewed in relation to sex, age and diagnosis. Comparisons were made between the two groups on basis of quantitative data of the two patient groups .

 

Results: The final analysis comprised 404 records in the outpatient group and 344 records in the inpatient group. In the outpatient group, injury and musculoskeletal disease were forming the most dominant diagnosis groups with 52.5% and 22.0%, respectively. Injury was most common in the age group 20 to 39 years and musculoskeletal diseases was most common in the age group 40 to 59 years. These two diagnosis groups and congenital malformations were significantly more represented among outpatients than among inpatients.

 

Conclusions: Young to middle-aged clients with injury or musculoskeletal disease were predominant among outpatient PT services as compared to inpatient services. The study findings serve to provide information on the current situation and potential needs of hospital-based outpatient PT services in one provincial hospital of PNG. These findings could be the base for planning outpatient PT service in WNB Province and PNG.

Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

HUANG, Mei-Zen
CHEN, Li-Li
HUNG, Shu-Ling
PUTHUSSERY, Shuby
2020

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People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.

Reach the furthest behind first: Persons with disabilities must be prioritized in accessing COVID-19 vaccinations

INTERNATIONAL DISABILITY ALLIANCE (IDA)
December 2020

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International Disability Alliance call on all policy-makers and health-care planners in every region and in every country to include persons with disabilities and support networks of their choice in priority groups to receive vaccinations, and to make sure that all persons with disabilities can access vaccinations on the basis of accessible and understandable information, through informed consent

Physical Activity of the Community- Dwelling Elderly Population in Gujarat, India: A Cross-Sectional Study

Patel, Samira Sirajulhak
Gupta, Nalina
Parmar, Lata
2020

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Purpose: While ageing is an inevitable phenomenon of life, physical activity is important for healthy ageing. Compared to the other age groups, older adults throughout the world have the lowest rate of participation in recommended levels of physical activity. This study aimed to investigate the physical activity status of the community-dwelling elderly population in Gujarat, India.

 

Method: This was a cross-sectional study. A door-to-door survey was conducted among selected communities near Vadodara in Gujarat. Based on the inclusion criteria (age≥60years, MMSE-≥24), 347 elderly persons were included in the study. Data was collected using the Global Physical Activity Questionnaire (GPAQ), and analysed using descriptive statistics.

 

Results: Among the 347 older adults (mean age 67.43±7.46 years) who participated in the study, 159 were male and 188 were female. While 125 participants (36%) were physically active at levels recommended by the World Health Organisation, 222(64%) were physically inactive.

 

Conclusion: Only 36% of the participants were physically active as per WHO recommendations. The men were more physically active than the women in the study sample. This study implies that there is a need to create an awareness regarding the importance of physical activity for healthy aging.

Preliminary Findings From a Nationwide, Multicenter Mental Health Service for Adults and Older Adolescents With Autism Spectrum Disorder and ID

HELVERSCHOU, Sissel Berge
BAKKEN, Trine Lise
BERGE, Heidi
BJØRGEN, Tale Gjertine
BOTHEIM, Henrik
HELLERUD, Jane Askeland
HELSET, Ingunn
ODDBJØRN, Hove
JOHANSEN, Per Anders
KILDAHL, Arvid Nikolai
LUDVIGSEN, Linn Beate
NYGAARD, Sissel
RYSSTAD, Anne
WIGAARD, Elisabeth
HOWLIN, Patricia
2020

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Background: The identification and treatment of psychiatric disorders in individuals with autism spectrum disorders (ASD) and ID presents many challenges. We describe the development of a professional network, together with a standardized protocol for clinical assessment, designed to promote clinical competence and professional development in eight clinical centers responsible for providing mental health services to autistic individuals with ID across all four health regions of Norway. Specic aims to describe: (1) patterns of psychiatric and behavior problems in patients treated by the network, (2) patterns of change over time, and (3) the relationship between psychiatric disorders and behavior problems.


Method: A standardized protocol was used to assess individual progress in 132 patients (inpatients and outpatients) with autism and ID over 2 years (at referral (T1), after 1 year (T2), and after 2 years (T3)). Changes in psychiatric symptoms and behavior problems were assessed with the Psychopathology in Autism Checklist (PAC) and Aberrant Behavior Checklist (ABC).


Results: Patients showed signicant (p < .001) improvements from T1 to T2 on the psychosis, depression and anxiety subscales of the PAC, but no signicant improvement on the obsessive compulsive disorder (OCD) subscale. Improvements were maintained from T2 to T3. Patients showed signicant (p < .01) improvements on the ABC total score and on all ABC subscales except inappropriate speech from T1 to T2; these improvements were maintained from T2 to T3.


Discussion: The combination of a professional network and a standardized protocol for clinical assessment has promise as a strategy for improving professional competence and facilitating specialized mental health services for autistic individuals with ID and psychiatric disorders across an extensive geographical area.

Effects of Biofeedback and Task-Oriented Intervention on Balance Confidence and its Relationship with Social Participation among Stroke Survivors

Pachiappan, Elumalai
2020

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Purpose: The study aimed to compare the effects of balance training on balance confidence and its relationship with social participation among clients with stroke.

 

Method: A pre- and post- experimental group design was used. Stroke survivors who met the inclusion criteria were consecutively assigned to two groups (task- oriented and biofeedback). Participants in the task-oriented group received task- oriented activities for 20 minutes and the biofeedback group received intervention in correckta (equipment used for balance training) for 20 minutes, along with conventional occupational therapy - 5 sessions per week, for 12 weeks. Balance Confidence Scale was used for measuring balance confidence, and Frenchay Activities Index (FAI) was used to measure social participation. Statistical calculations were performed with SPSS version 16.0 package. Statistical tests were carried out with the level of significance set at p≤ 0.05.

 

Results: The findings suggest that both the biofeedback and task-oriented groups showed significant improvement in balance confidence and there was no statistically significant difference between the groups. There was a moderate to good relationship between balance confidence and social participation.

 

Conclusions and Implications: There is evidence that many stroke survivors have low balance confidence. Therapists should assess the balance confidence of their clients and encourage them to participate in these beneficial interventions.

Disability rights during the pandemic. A global report on findings of the COVID-19 Disability Rights Monitor

BRENNAN, Ciara Siobhan
October 2020

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This report presents the findings from a rapid global survey of persons with disabilities and other stakeholders which took place between April and August 2020. The organisations behind the study seek to “catalyse urgent action in the weeks and months to come,” as transmission rates of COVID-19 continue to rise in many countries and persons with disabilities are again subjected to restrictions which have already had severe consequences.

The report analyses over 2,100 responses to the survey from 134 countries around the world. The vast majority of responses were from individuals with disabilities and their family members. Within the questionnaire responses respondents provided more than 3,000 written testimonies documenting the experiences of persons with disabilities and their family members during the pandemic. The qualitative and quantitative data provide in-depth, comprehensive insights into the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities.

The report is organised around four themes which emerged during the process of analysing responses received to the survey. These themes are:

1. Inadequate measures to protect persons with disabilities in institutions

2. Significant and fatal breakdown of community supports

3. Disproportionate impact on underrepresented groups of persons with disabilities

4. Denial of access to healthcare

 

A webinar was held to mark the launch of the report

Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
October 2020

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In order to show the scale and scope of shackling of people with real or perceived psychosocial disabilities worldwide, Human Rights Watch conducted a study of mental health legislation, relevant policies, and practices across 60 countries around the world.

This report includes research and testimonies collected by 16 Human Rights Watch researchers in their own countries. We worked closely with partner organizations to visit private homes and institutions in Afghanistan, Burkina Faso, Cambodia, Ghana, Indonesia, Kenya, Liberia, Mexico, Mozambique, Nigeria, Sierra Leone, Palestine, Russia, the selfdeclared independent state of Somaliland, South Sudan, and Yemen. Human Rights Watch researchers interviewed more than 350 people with psychosocial disabilities, including those who were shackled at the time of research or had been shackled at least once in their lives, and more than 430 family members, caregivers or staff working in institutions, psychiatrists, psychologists, nurses and other mental health professionals, faith healers, lawyers, government officials, representatives of local nongovernmental organizations (NGOs), including organizations of persons with disabilities, and disability rights advocates. The testimonies were collected between August 2018 and September 2020 through in-person and phone interviews.

Desk research and consultation with international disability experts was also undertaken

Disability inclusive health, WASH and livelihoods in the COVID-19 response - Thematic guidance notes

AUSTRALIAN HUMANITARIAN PARTNERSHIP (AHP)
September 2020

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Practical guidance has been developed for disability inclusion within the priority sectors of Health, WASH, and Livelihoods and Food Security. This guidance has been developed to inform the AHP Disaster READY program and COVID-19 humanitarian response efforts, and contribute to sectoral understanding of inclusive humanitarian response and disaster preparedness.

A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic

LEE, Seungbok
KIM, Jongbae
2020

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The South Korean media boasts of its leading success–during the escalation of the coronavirus outbreak–in flattening of the curve thereby mitigating the grave outcomes of the public health crisis. Much of the success is reportedly attributed to the rapid and advanced development of test kits, essential equipment and implementation of protocols in precautionary measures. However, it has been an arduous task to stay afloat for one particular vulnerable community. The disabled citizens of Korea were confronted by the realities of health inequity during this disastrous period. Pre-existing the pandemic onset, the disabled community have faced stigmatization and under many circumstances de-prioritization by their own society. Through the lense of a visiting physician, my hope is to poignantly and respectfully share personal experiences and thoughts on these realties impacted by the COVID-19 pandemic in South Korea.

Employment of young people with mental health conditions: making it work

SUBRAMANIAM, Mythily
ZHANG, Yunjue
SHAHWAN, Shazana
VAINGANKAR, Janhavi Aijt
SATGHARE, Patrika
LIN TEH, Wen
ROYSTONN, Kumarasan
MING JANRIUS GOH, Chong
MANIAM, Yogeswary
LIANG TAN, Zhuan
TAY, Benjamin
VERMA, Swapna
ANN CHONG, Siow
2020

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Purpose: The current study was undertaken to understand and describe the meaning of work as well as the barriers and facilitators perceived by young people with mental health conditions for gaining and maintaining employment.


Materials and Methods: Employing a purposive and maximum variation sampling, 30 young people were recruited and interviewed. The respondents were Singapore residents with a mean age of 26.8 years (SD 1⁄4 4.5, range 20–34years); the majority were males (56.7%), of Chinese ethnicity (63.3%), and employed (73.3%), at the time of the interview. Verbatim transcripts were analysed using inductive the- matic analysis.

 

Results: Three global themes emerged from the analyses of the narratives, which included (i) the mean- ing of employment, (ii) barriers to employment comprising individual, interpersonal and systemic difficul- ties and challenges participants faced while seeking and sustaining employment and (iii) facilitators of employment that consisted of individual and interpersonal factors that had helped the young persons to gain and maintain employment.

 

Conclusions: Stigma and discrimination emerged as one of the most frequently mentioned employment barriers. These barriers are not insurmountable and can be overcome both through legislation as well as through the training and support of young people with mental health conditions.

Barriers to accessing primary healthcare services for people with disabilities in low and middle-income countries, a Meta-synthesis of qualitative studies

HASHEMI, Goli
WICKENDEN, Mary
BRIGHT, Tess
KUPER, Hannah
2020

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Background: Access to healthcare contributes to the attainment of health and is a fundamental human right. People with disabilities are believed to experience widespread poor access to healthcare services, due to inaccessible environments and discriminatory belief systems and attitudes. Qualitative data on these bar- riers has not previously been systematically reviewed. A meta-synthesis was undertaken of qualitative studies exploring the barriers to primary healthcare services experienced by people with disabilities in low- and mid- dle-income countries.

 

Methods: Six electronic databases were searched for relevant studies from 2000 to 2019. Forty-one eli- gible studies were identified.

 

Results: Findings suggest that the people with disabilities’ choice to seek healthcare services or not, as well as the quality of intervention provided by primary healthcare providers, are influenced by three types of barriers: cultural beliefs or attitudinal barriers, informational barriers, and practical or logis- tical barriers.

 

Conclusion: In order to achieve full health coverage at acceptable quality for people with disabilities, it is necessary not only to consider the different barriers, but also their combined effect on people with dis- abilities and their households. It is only then that more nuanced and effective interventions to improve access to primary healthcare, systematically addressing barriers, can be designed and implemented.

How can we measure disability in research related to the COVID-19 response?

MACTAGGART, Islay
KUPER, Hannah
August 2020

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There is growing evidence that COVID-19 is disproportionally impacting the lives of people with disabilities. This includes evidence of the increased risk of severe outcomes of contracting COVID-19 amongst people with existing health conditions, including many people with disabilities. It also includes a wide range of other potential impacts such as: reductions or disruptions in non-COVID-19 health or rehabilitation services, the effects of shielding on isolation and mental health, the implications of social distancing on people who require carer support, and the impact on poverty, participation and wellbeing due to disrupted disability-inclusive development programmes.

 

Measurement of disability in research has historically been contested and a number of different tools exist. Clear guidance is needed on how to determine which tool to use to understand the situation of people with disabilities in different settings, and plan responsive and inclusive COVID-19 programmes and policies to support their needs. Good quality, comparable data on disability is essential for tracking the impact of the COVID-19 pandemic, as well as prevention and mitigation interventions, amongst people with disabilities. Such evidence is also imperative for tracking progress towards the Sustainable Development Goals, and UNCRPD compliance.

 

This evidence brief synthesises findings from a scoping review of ICF-compatible tools to measure disability in population-based surveys with a focus on LMICs (2018), protocols and research outputs from seven population-based surveys of disability across Asia, Africa and the Pacific, secondary analyses of the South African Census, US National Health Interview Survey and three Demographic and Health Surveys, reflections from global stakeholders in disability measurement (including the UN Flagship Report on Disability), and evidence compiled for the upcoming Global Disability Research Massive Open Online Course at the London School of Hygiene & Tropical Medicine

Towards healthier homes in humanitarian settings

WEBB, Sue
WEINSTEIN SHEFFIELD, Emma
FLINN, Bill
August 2020

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Proceedings of the Multi-sectoral Shelter & Health Learning Day 14th May 2020

The Shelter and Health Multi-sectoral Learning Day was hosted online by Oxford Brookes University’s Centre for Development and Emergency Practice (CENDEP) and CARE International UK, on 14th May 2020. Instigated and led by the ‘Self-recovery from Humanitarian Crisis’ research group, the Learning Day aimed to facilitate the sharing of knowledge about the connections between housing and health, in order to inform humanitarian action and enhance the wellbeing of crisis-affected populations. 

What do we know about how to support mental health and wellbeing during the COVID-19 pandemic from past infectious disease epidemics?

QURESH, Onaiza
SCHERER, Nathaniel
July 2020

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The question and the problem:

Symptoms of mental ill-health are common during widespread outbreak of an infectious disease, with high rates of depression, anxiety and post-traumatic stress disorder (PTSD) reported during recent epidemics, such as the recent Ebola crises and SARS-CoV-1. Elevated symptoms of mental ill-health are not limited to patients only, and are seen in healthcare workers, family members and indeed more widely across the general population. Early evidence coming from the COVID-19 pandemic demonstrates high rates of mental ill-health and mental health service provision is needed. This evidence brief summarises evidence on mental health support during COVID-19 and other recent pandemics, informing policy and practice during this crisis.

Preparedness of civil society in Botswana to advance disability inclusion in programmes addressing gender-based and other forms of violence against women and girls with disabilities

HANASS-HANCOCK, Jill
MTHETHWA, Nomfundo
MOLEFHE, Malebogo
KEAKABETSE, Tshiamo
2020

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Background: In low-income and middle-income countries women and girls with disabilities are more likely to experience violence than those without disabilities. Non-governmental organisations (NGOs) and disabled people’s organisations (DPOs) can help to address this. However, in countries like Botswana we know little about the preparedness of NGOs and DPOs to increase inclusion in and access to programmes addressing violence.

 

Objectives: To explore the capacity and preparedness of NGOs and DPOs to ensure that women and girls with disabilities can participate in and access programmes addressing violence.

 

Methods: A qualitative study was undertaken using interviews with 17 NGOs and DPOs in Botswana to understand the organisations’ level of and ability to deliver programmes addressing violence against women and girls.

 

Results: Both NGOs and DPOs lack elements of universal design and reasonable accommodation, and thus are inaccessible to some people with disabilities. Some programmes address violence against women but lack skills and resources to accommodate people with disabilities. In contrast, DPOs work with people with disabilities, but lack focus on violence against women with disabilities. Participants identified opportunities to fill these gaps, including adaptation of policies and structural changes, training, approaches to mainstream disability across programmes, development of disability-specific interventions and improved networking.

 

Conclusions: Botswana’s NGOs and DPOs are well positioned to address violence against women and girls with disabilities, but need to increase their accessibility, staff knowledge and skills and disability inclusion. Training, resource allocation and participation of women with disabilities in NGOs and DPOs is needed to drive this change.

 

 

African Journal of Disability, Vol 9, 2020

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