Disability and other identities?-how do they intersect?

This paper addresses intersectionality and disability in global contexts. Disability as a category of identity is often omitted in rhetoric about intersectionality, which usually considers race and gender, with some consideration of other identities. However, disability like other identities is socially constructed, and liable to misrepresentation and is often siloed from other issues and experiences. Someone identifying as disabled may not be recognised by those around them as having other identities too. In discussions about intersectionality, a simplistic "additive" approach is common, while the shifting complexities and interactions between people's multiple identities are not considered with nuance. Disabled people may pragmatically adopt a kind of "strategic essentialism". This allows them to claim a disabled identity and a specific dialogic space in order to gain recognition and perhaps access to support and services. However, they may prefer not to be classified in this dichotomised way because this ignores other aspects of them. Often an impairment is only of importance to the extent that it means that the person needs some reasonable adjustments in order to participate on equal basis with others. Arguably the SDGs and other global guidelines and treaties do not address disability as a significant identity sufficiently, nor recognise it as an important aspect of many people in combination with their other identities, rather than a stand-alone feature of them. When analysing the types of disadvantages that people experience, a broader more flexible approach is needed which recognises the ways in which different identities combine and influence people's experiences.

How do people with disabilities in three regions of Guatemala make healthcare decisions? A qualitative study focusing on use of primary healthcare services.

Research has demonstrated that persons with disabilities, despite their greater need for healthcare services, often experience greater barriers to accessing healthcare including primary healthcare. Data and interventions on access to primary healthcare for persons with disabilities to date appear to concentrate more on access and quality issues once the person with a disability has initiated the healthcare seeking process, with less emphasis on how healthcare decisions are made at the personal or household level when one identifies a healthcare need. The aim of this study was to investigate how healthcare decisions are made by people with disabilities when they first identify a healthcare need. It is anticipated that gaining a better understanding of how such decisions are made will facilitate the development of interventions and approaches to improve access to primary healthcare services for this group. A qualitative study was undertaken in Guatemala. In-depth interviews were undertaken with twenty-seven adults with disabilities, including men and women with a range of impairment types and ages. Data were analyzed using thematic analysis to identify themes that influence the decision-making processes in accessing primary healthcare services for people with disabilities. Thematic analysis of the interviews along with exploration of three existing access to health frameworks and models, led to identification of four primary themes and development of a new conceptual framework highlighting the complex decision-making process undertaken by people with disabilities about whether to seek primary healthcare services or not when confronted with a healthcare concern. The themes include perceived severity of illness and need for treatment, personal attributes, societal factors, and health system characteristics. Using this new conceptual framework will facilitate the development of more effective policies and interventions to improve access to primary healthcare services for people with disabilities through greater understanding of the complex network of variables and barriers.

How did South Africans with disabilities experience COVID-19? Results of an online survey.

Background: People with disabilities are a large, disadvantaged minority, comprising approximately 12% of the population. The South African government has ratified international and regional disability treaties but deals with disability rights within general anti-discrimination legislation. There are no specific frameworks to monitor justice for people with disabilities. The study aims to inform further development of disability inclusive mechanisms relating to crises including pandemics. Objectives: This study explored the perceptions of South Africans with disabilities, to understand their experiences during coronavirus disease 2019 (COVID-19), focussing on socioeconomic, well-being and human rights aspects. Method: An online survey tool generated quantitative and qualitative data. Widespread publicity and broad recruitment were achieved through project partners networks. Participants responded via mobile phone and/or online platforms. Results: Nearly 2000 people responded, representing different genders, impairments, races, socio-economic status, education and ages. Findings include: (1) negative economic and emotional impacts, (2) a lack of inclusive and accessible information, (3) reduced access to services, (4) uncertainty about government and non-government agencies' support and (5)exacerbation of pre-existing disadvantages. These findings echo international predictions of COVID-19 disproportionally impacting people with disabilities. Conclusion: The evidence reveals that people with disabilities in South Africa experienced many negative impacts of the pandemic. Strategies to control the virus largely ignored attending to human rights and socioeconomic well-being of this marginalised group. Contribution: The evidence will inform the development of the national monitoring framework, recognised by the South African Government and emphasised by the United Nations as necessary to ensure the realisation of the rights of people with disabilities during future crises including pandemics.

Healthcare Stakeholders' Perspectives on Challenges in the Provision of Quality Primary Healthcare for People with Disabilities in Three Regions of Guatemala: A Qualitative Study.

It is estimated that 3.75 billion people worldwide lack access to healthcare services. Marginalized populations, such as people with disabilities, are at greater risk of exclusion. People with disabilities not only face the same barriers as people without disabilities, but also experience a range of additional barriers in accessing healthcare due to a variety of discriminatory and inaccessible environments. These extra barriers exist despite their greater need for general healthcare, as well as specialized healthcare related to their impairment. Few studies have focused on healthcare providers and the challenges they face in caring for this group. This paper describes the perspectives of healthcare stakeholders and reported challenges to the provision of quality primary healthcare for people with disabilities. In-depth interviews with 11 healthcare stakeholders were conducted in three regions of Guatemala. Data were analyzed using thematic analysis. Five sub-themes emerged from the above theme: infrastructure and availability of resources, impairment-based challenges, need for special attention and empathy, opportunity to provide services to people with disabilities, and gaps in training. The results could contribute to the development and implementation of strategies that can improve primary care provision and ultimately access to services for people with disabilities in low- and middle-income countries.

A community developed conceptual model for reducing long-term health problems in children with intellectual disability in India.

Children with intellectual disability (ID) have a higher risk of long-term health problems in adulthood. India has the highest prevalence of ID of any country with 1.6 million under-five children living with the condition. Despite this, compared with other children, this neglected population is excluded from mainstream disease prevention and health promotion programmes. Our objective was to develop an evidence-based conceptual framework for a needs-based inclusive intervention to reduce the risk of communicable and non-communicable diseases among children with ID in India. From April through to July 2020 we undertook community engagement and involvement activities in ten States in India using a community-based participatory approach, guided by the bio-psycho-social model. We adapted the five steps recommended for the design and evaluation of a public participation process for the health sector. Seventy stakeholders from ten States contributed to the project: 44 parents and 26 professionals who work with people with ID. We mapped the outputs from two rounds of stakeholder consultations with evidence from systematic reviews to develop a conceptual framework that underpins an approach to develop a cross-sectoral family-centred needs-based inclusive intervention to improve health outcomes for children with ID. A working Theory of Change model delineates a pathway that reflected the priorities of the target population. We discussed the models during a third round of consultations to identify limitations, relevance of the concepts, structural and social barriers that could influence acceptability and adherence, success criteria, and integration with existing health system and service delivery. There are currently no health promotion programmes focusing on children with ID in India despite the population being at a higher risk of developing comorbid health problems. Therefore, an urgent next step is to test the conceptual model to determine acceptance and effectiveness within the context of socio-economic challenges faced by the children and their families in the country.

Adolescents with disabilities and caregivers experience of COVID-19 in rural Nepal.

Introduction: Intersecting vulnerabilities of disability, low socio-economic status, marginalization, and age indicate that adolescents with disabilities in low-and middle-income countries were uniquely affected by the COVID-19 pandemic. Yet, there has been limited research about their experience. We conducted participatory research with adolescents with disabilities in rural, hilly Nepal to explore their experience of the pandemic and inform understanding about how they can be supported in future pandemics and humanitarian emergencies. Methods: We used qualitative methods, purposively sampling adolescents with different severe impairments from two rural, hilly areas of Nepal. We collected data through semi-structured interviews with five girls and seven boys between the age of 11 and 17 years old. Interviews used inclusive, participatory, and arts-based methods to engage adolescents, support discussions and enable them to choose what they would like to discuss. We also conducted semi-structured interviews with 11 caregivers. Results: We found that adolescents with disabilities and their families experienced social exclusion and social isolation because of COVID-19 mitigation measures, and some experienced social stigma due to misconceptions about transmission of COVID-19 and perceived increased vulnerability of adolescents with disabilities to COVID-19. Adolescents who remained connected with their peers throughout lockdown had a more positive experience of the pandemic than those who were isolated from friends. They became disconnected because they moved away from those they could communicate with, or they had moved to live with relatives who lived in a remote, rural area. We found that caregivers were particularly fearful and anxious about accessing health care if the adolescent they cared for became ill. Caregivers also worried about protecting adolescents from COVID-19 if they themselves got ill, and about the likelihood that the adolescent would be neglected if the caregiver died. Conclusion: Contextually specific research with adolescents with disabilities to explore their experience of the pandemic is necessary to capture how intersecting vulnerabilities can adversely affect particular groups, such as those with disabilities. The participation of adolescents with disabilities and their caregivers in the development of stigma mitigation initiatives and strategies to meet their needs in future emergencies is necessary to enable an informed and inclusive response.

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

METHODS: Six electronic databases were searched for relevant studies from 2000 to 2019. Forty-one eligible 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 logistical 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 disabilities 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.IMPLICATIONS FOR REHABILITATIONPeople with disabilities in both high income and low- and middle-income country settings are more likely to experience poorer general health than people without disabilities.Barriers to accessing primary healthcare services for people with disabilities result from a complex and dynamic interacting system between attitudinal and belief system barriers, informational barriers, and practical and logistical barriers.Given primary healthcare is often the initial point of contact for referral to specialty care and rehabilitation services, it is crucial for people with disabilities to access primary healthcare services in order to get appropriate referrals for such services, specifically rehabilitation as appropriate.To achieve full health coverage at acceptable quality for people with disabilities, starting with primary healthcare, it is necessary for healthcare stakeholders, including rehabilitation professionals, to consider the combined and cumulative effects of the various barriers to healthcare on people with disabilities and their families and develop an understanding of how healthcare decisions are made by people with disabilities at the personal and the household level.

Intimate partner violence against women with disability and associated mental health concerns: a cross-sectional survey in Mumbai, India.

OBJECTIVES: The risk of intimate partner violence (IPV) against women with disability is believed to be high. We aimed to compare the prevalence of past-year IPV against women with and without functional difficulties in urban informal settlements, to review its social determinants and to explore its association with mental health. DESIGN: Cross-sectional survey. SETTING: Fifty clusters within four informal settlements. PARTICIPANTS: 5122 women aged 18-49 years. PRIMARY AND SECONDARY OUTCOME MEASURES: We used the Washington Group Short Set of Questions to assess functional difficulties. IPV in the past year was described by binary composites of questions about physical, sexual and emotional violence. We screened for symptoms of depression using the Patient Health Questionnaire-9 and of anxiety using the Generalised Anxiety Disorder-7. Multivariable logistic regression models examined associations between functional difficulties, IPV and mental health. RESULTS: 10% of participants who screened positive for functional disability had greater odds of experiencing physical or sexual IPV (adjusted OR (AOR) 1.68, 95% CI 1.23 to 2.29) and emotional IPV (1.52, 95% CI 1.16 to 2.00) than women who screened negative. Women who screened positive for functional disability had greater odds than women who screened negative of symptoms suggesting moderate or severe anxiety (AOR 2.50, 95% CI 1.78 to 3.49), depression (2.91, 95% CI 2.13 to 3.99) and suicidal thinking (AOR 1.94, 95% CI 1.50 to 2.50). CONCLUSIONS: The burden of IPV fell disproportionately on women with functional difficulties, who were also more likely to screen positive for common mental disorder. Public health initiatives need to respond at local and national levels to address the overlapping and mutually reinforcing determinants of violence, while existing policy needs to be better utilised to ensure protection for the most vulnerable.

Describing adolescents with disabilities' experiences of COVID-19 and other humanitarian emergencies in low- and middle-income countries: a scoping review.

BACKGROUND: The COVID-19 pandemic and other humanitarian emergencies exacerbate pre-existing inequalities faced by people with disabilities. They experience worse access to health, education, and social services, and increased violence in comparison with people without disabilities. Adolescents with disabilities are amongst those most severely affected in these situations. Using participatory research methods with adolescents can be more effective than other methods but may be challenging in such emergency contexts. OBJECTIVES: We conducted a scoping review to: 1) describe the literature and methods used in peer-reviewed and grey literature on adolescents (aged ten to nineteen) with disabilities' experience of COVID-19 and other humanitarian emergencies in low- and middle-income countries, and 2) identify research gaps and make recommendations for future research. METHODS: The review followed a protocol developed using PRISMA guidelines and the Arksey and O'Malley framework. We searched grey and peer-reviewed literature between 2011 and 2021. RESULTS: Thirty studies were included. Twelve were peer-reviewed, and of those seven used participatory methods. Humanitarian emergencies had adverse effects on adolescents with disabilities across health, education, livelihoods, social protection, and community participation domains. Surprisingly few studies collected data directly with adolescents with disabilities. Twenty-three studies combined data from non-disabled children, caregivers, and disabled adults which made it challenging to understand adolescents with disabilities' unique experience. CONCLUSIONS: Our review highlights both the scarcity of literature and the importance of conducting research with adolescents with disabilities in humanitarian contexts. Despite challenges, our review shows that it has been possible to conduct research with adolescents with disabilities to explore their experiences of humanitarian emergencies, and that these experiences were different from those of non-disabled adolescents. There is a need to disaggregate findings and support the implementation and reporting of rigorous research methods. Capacity development through partnerships between non-governmental organisations and researchers may improve reporting of methods.

The Estimated Prevalence of Autism in School-Aged Children Living in Rural Nepal Using a Population-Based Screening Tool.

Few data exist on the prevalence of autism in low-income countries. We translated, adapted and tested the acceptability of a Nepali-language version of a screening tool for autism (Autism Quotient-10). Using this tool, we estimated autism prevalence in 4098 rural Nepali children aged 9-13 years. Fourteen children scored > 6 out of 10, indicative of elevated autistic symptomatology, of which 13 also screened positive for disability. If the AQ-10 screening tool is as sensitive and specific in the Nepali population as it is in the UK, this would yield an estimated true prevalence of 3 in 1000 (95% confidence interval 2-5 in 1000). Future research is required to validate this tool through in-depth assessments of high-scoring children.

Understanding parents' and professionals' knowledge and awareness of autism in Nepal.

Autism is a global phenomenon. Yet, there is a dearth of knowledge of how it is understood and its impact in low-income countries. We examined parents' and professionals' understanding of autism in one low-income country, Nepal. We conducted focus groups and semi-structured interviews with parents of autistic and non-autistic children and education and health professionals from urban and rural settings ( n = 106), asking questions about typical and atypical development and presenting vignettes of children to prompt discussion. Overall, parents of typically developing children and professionals had little explicit awareness of autism. They did, however, use some distinctive terms to describe children with autism from children with other developmental conditions. Furthermore, most participants felt that environmental factors, including in-utero stressors and birth complications, parenting style and home or school environment were key causes of atypical child development and further called for greater efforts to raise awareness and build community capacity to address autism. This is the first study to show the striking lack of awareness of autism by parents and professionals alike. These results have important implications for future work in Nepal aiming both to estimate the prevalence of autism and to enhance support available for autistic children and their families.

What can we learn about postnatal care in Ghana if we ask the right questions? A qualitative study.

BACKGROUND: There are increasing efforts to monitor progress in maternal and neonatal care, with household surveys the main mode of data collection. Postnatal care (PNC) is considered a priority indicator yet few countries report on it, and the need to improve the construct validity associated with PNC questions is recognized. OBJECTIVES: To determine women's knowledge of what happens to the baby after delivery, women's comprehension of terms and question phrasing related to PNC, and issues with recall periods. DESIGN: Forty qualitative interviews and four focus group discussions were conducted with mothers, and 10 interviews with health workers in rural Ghana. Data were collected on knowledge and recall of postnatal health checks and language used to describe these health checks. RESULTS: Mothers required specific probing using appropriate language to report postnatal checks. They only had adequate knowledge of postnatal checks, which were easily observed or required asking them a question. Respondents reported that health workers rarely communicated with mothers about what they were doing, and most women did not know the purpose of the equipment used during health checks, such as why a thermometer was being used. Knowledge of neonatal checks in the first hours after a facility delivery was low if the mother and child were separated, or if the mother was tired or weak. Many women reported that they could remember events clearly, but long recall periods affected reporting for some, especially those who had multiple checks or for those with no problems. CONCLUSIONS: Direct questions about PNC or health checks are likely to underestimate coverage. Validity of inferences can be enhanced by using appropriate verbal probes during surveys on commonly performed checks that are clear and visible to the mother.

Widening the SLP lens: how can we improve the wellbeing of people with communication disabilities globally.

This article responds to Wylie, McAllister, Davidson, and Marshall (2013) by arguing that the wellbeing of people with communication disabilities in the global south will be improved if speech and language pathologists widen their lens considerably. The numbers of speech-language pathologists (SLPs) in the Majority World is and will remain infinitesimally small. Therefore, to make any meaningful impact the profession needs to engage in debates and activities outside the health and service provision arenas, getting involved cross-sectorally and at various policy levels. It is contended that, although the World Report on Disability is a useful summary of the status quo, actually SLPs need to harness two other seminal documents: The International Classification of Functioning, Disability and Health and, more particularly, the United Nations Convention on the Rights of People with Disabilities in order to drive change. Historically the profession's focus has been on impairments, and current moves to social models are welcome. However, SLPs need to embrace human rights approaches and broader frameworks of inclusive community development, using global initiatives such as community-based rehabilitation to improve the lives of people with communication disabilities. Why SLPs should become critically engaged, particularly at the macro level, is explored.

Stakeholder consultations on community-based rehabilitation guidelines in Ghana and Uganda.

BACKGROUND: The focus of this paper is the new broadened conceptualisation of community-based rehabilitation (CBR), which promotes the empowerment and inclusion of people with disabilities (PWDs) in diverse ways within their communities. New guidelines for CBR were launched in October 2010 by WHO/ILO/UNESCO/IDDC, and this paper describes part of the process by which these were produced using participatory approaches involving International Non-Government Organisations (INGOs) and local partners. The paper reviews the evolution of CBR and describes how grassroots consultation by INGOs working with key stakeholders in the disability arena can influence policy on disability issues, and reciprocally how policy change can inform organisations' practice and research activities. This ongoing bidirectional influence is illustrated with data from the participatory consultation process about the new CBR guidelines carried out by Sightsavers in Uganda and Ghana. OBJECTIVES: To consult with key stakeholders in the disability arena in Uganda and Ghana, in order to gain their opinions and suggestions for improvements to the then draft CBR guidelines, as part of a wider global participatory process of consultation on the document. METHODS: The INGO Sightsavers gathered qualitative data through focus group discussions and questionnaires in both countries. RESULTS: The participants' critiques of the draft guidelines carried out in multiagency participatory processes were analysed thematically and fed back to the CBR guidelines editorial team. CONCLUSION: The paper concludes that stakeholders in diverse communities can actively contribute to shaping policy and practice through participatory consultations. Local and national government and non-government organisations and other key informants can inform the development of national and international guidelines and policies. This participatory approach can be successfully facilitated by INGOs. In turn, these processes have prompted organisations to adapt their own policies and programmes in order to be more responsive to the local needs and concerns of PWDs.

Preliminary planning for training speech and language therapists in Uganda.

Country-specific issues affect both the implementation of services for people with communication disabilities and the training of specialists who provide these services. Uganda is a majority world country with an extremely limited specialist service, but is looking to expand it by developing training for specialist workers. This paper reports on the initial processes adopted in Uganda to develop such training. A workshop that brought together all the stakeholders identified key issues. The paper relates these issues to the International Association of Logopedics and Phoniatrics guidelines for education and training and makes suggestions for the way forward.

Teaching speech and language therapists in Sri Lanka: issues in curriculum, culture and language.

This paper draws on the experiences of the authors in designing and teaching a new course to educate speech and language therapists in Sri Lanka. This was the first speech and language therapist course in the country and was the result of collaboration between two universities, one in the UK and one in Sri Lanka. Rather than replicating established programmes elsewhere it was more appropriate to design a new course, suited to providing a comprehensive model of service, encompassing both social and medical approaches to rehabilitation. Issues about developing teaching and learning approaches to match pre-existing knowledge and experience of both staff and students are addressed. The particular ways of designing the programme to take account of cultural and language aspects of the Sri Lankan context are discussed.