The partnership of UNFPA with This-Ability Trust, an organization that advances disability rights and inclusion by working with groups, to improve access to sexual and reproductive health information and services for women and girls with disabilities is reported. The partnership, which has reached 12,000 people in eight counties, also educates both recipients and caregivers on menstrual health management when distributing dignity kits with washable sanitary pads. The report highlights Mombasa-based Ms. Wanjiru who runs a group for persons with disabilities that includes a programme on sexuality for young women, whose families and caregivers are often uncomfortable discussing menstrual hygiene
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.
Purpose: To translate and cross-culturally adapt the Chelsea Critical Care Physical Assessment tool from English to German (CPAx-GE) and to examine its validity and reliability.
Materials and methods: Following a forward-backward translation including an expert round table dis- cussion, the measurement properties of the CPAx-GE were explored in critically ill, mechanically ventilated adults. We investigated construct, cross-sectional, and cross-cultural validity of the CPAx-GE with other measurement instruments at pre-specified timepoints, analysed relative reliability with intraclass correl- ation coefficients (ICCs) and determined absolute agreement with the Bland–Altman plots.
Results: Consensus for the translated CPAx-GE was reached. Validity was excellent with >80% of the pre- specified hypotheses accepted at baseline, critical care, and hospital discharge. Interrater reliability was high (ICCs > 0.8) across all visits. Limit of agreement ranged from 2 to 2 points. Error of measurement was small, floor, and ceiling effects limited.
Conclusions: The CPAx-GE demonstrated excellent construct, cross-sectional, and cross-cultural validity as well as high interrater reliability in critically ill adults with prolonged mechanical ventilation at baseline, critical care, and hospital discharge. Consequently, the CPAx-GE can be assumed equal to the original and recommended in the German-speaking area to assess physical function and activity of critically ill adults across the critical care and hospital stay.
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.
Digital information systems serving the social protection sector, and especially social assistance, are increasingly prominent and will continue to be, as is the case within all other sectors. “Why? Because the ability of a country to care for its people and respond to their lifecycle needs depends on its ability to identify those who are in need, enroll them, provide tailored benefits and services, and follow up to cater to evolving circumstances”. Governments also need to be able to monitor programme implementation and impact, feeding into longer-term decisions on design and resource allocation. “All of these actions require accessible, dynamic and real-time data and information exchange if the goal of universal coverage is to be achieved” (Chirchir and Barca, 2019).
The coverage (% of the population included in the information system), relevance (amount/type of data they store), and accessibility (e.g. level of interoperability/data sharing across the government data ecosystem) of these administrative data systems has also been increasing in many countries – posing important opportunities and challenges to policy-makers. The question is how to develop these systems in a way that is inclusive and right-based, leveraging technology “to ensure a higher standard of living for the vulnerable and disadvantaged” (Alston, 2019) rather than becoming a further barrier to inclusion. To illustrate the point this paper specifically focuses on gender and disability inclusion, while acknowledging similar considerations apply to all other forms of (intersectional) exclusion.
An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.
The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations.
The onset of the sudden and global pandemic, COVID-19, has forced all of us to change our ways of living and interacting with the outside world. Additionally, a lot of restrictions on movement mandated by governments have also been issued in the past few months. In the context of India, a nationwide lockdown was in place from midmarch till the end of May. These lock-downs have had serious consequences for various segments of the population across the country, especially, those on the margins, who are vulnerable and/or in a minority. One such segment has been the disabled population. This paper, with the help of narratives, addresses the challenges faced by the deaf population during the COVID crisis and the ways in which they have negotiated these. There has been a big void in the dissemination of information to the deaf, owing to the fact that the majority of information from official sources has not been translated into sign language. More so, in times when information is the key to maintaining proper health care, this is a big lacuna. Additionally, the paper will also talk about the role of technology as well as of deaf groups in the lives of deaf people, and how it has proved to be very helpful to not just spread proper awareness about the pandemic, but also in trying to build up a movement in trying to recognise Indian Sign Language as the 23rd Official Language of India.
This article is based on studies carried out within the Young children’s learning research education programme. This undertaking involved five graduate students, all recruited from the Swedish preschool system. The licentiate thesis makes up the final product of their education programme, and the focus of each candidate’s licentiate thesis was preschool-level documentation. Using the results of all five theses, a re-analysis was conducted with the concept of normality as the common starting point. The purpose was to investigate whether documentation and assessment can change the view of normality in preschools, and furthermore, what consequences there may be for preschool activity. ‘The narrow preschool and the wide preschool’ is the model used to support the analysis, which is a model used in previous studies to review and discuss educational choices and conditions in the school system. Results of the present investigation show that the documents and assessments performed in preschool have a strong focus on the individual child and a traditional, school-oriented learning is highly valued. The documentation and assessment practices that take place now in our preschools, therefore, most likely influence the preschool view of normality and restrict the acceptance of differences.
Purpose: The aim of the present study was to investigate the experiences of people with Parkinson’s disease and their close communication partners regarding disease-related communicative changes and participation in everyday conversations.
Materials and methods: Semi-structured qualitative interviews were conducted with six dyads consisting of a person with Parkinson’s disease and a close communication partner. The interview material was analysed through thematic analysis.
Results: The main theme was the experiences of barriers and facilitators for participation in conversations. Subthemes were experiences related to changes in voice and articulation, language and cognition, body language and facial expressions, fatigue, self-image, communicative initiative, and familiarity with conversation partner. The results show individual variation. A change observed in almost all dyads was the person with Parkinson’s disease participating less in conversations.
Conclusions: Assessment and interventions should be based on a broad perspective on communication, and individuals’ priorities should be foregrounded in intervention planning. Both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work. Therefore, close communication partners should be included in assessment and intervention of communication in Parkinson’s disease from an early stage.
Objective: To investigate and summarize the literature on the validation of International classification of functioning, disability and health (ICF) core sets from 2001 to 2019 and explore what research methods have been used when validating ICF core sets.
Methods: The current study is a scoping review using a structured literature search.
Results: In total, 66 scientific articles were included, of which 23 ICF core sets were validated. Most validation studies were conducted in Europe using a quantitative methodology and were validated from the perspective of patients. Analysis methods differed considerably between the studies, and most ICF core sets were validated only once for a single target population or from a single perspective. The comprehensive core sets were validated more often than the brief core sets, and core sets for stroke and low back pain were validated most often.
Conclusion: The results of the current study show that only 66% of the existing ICF core sets are validated. Many of the validation studies are conducted in a European context and from a single perspective. More validation studies of ICF core sets from the perspective of both patients and professionals are needed.
Resilience is the capacity to cope successfully with various threats. This paper aims to adapt the Resilience-Scale of Schumacher et al. (2004. Die Resilienzskala – ein Fragebogen zur Erfassung der psychischen Widerstandsfähigkeit als Personmerkmal. [The Resilience Scale – A Questionnaire to Measure Mental Resilience as a Personal Characteristic]. Zentrum für Klinische Psychologie, Psychiatrie und Psychotherapie) to measure the tendency of being resilient even before a threat occurs. Since primary school students are exposed to various threats at school, 535 4th grade students of Austrian primary schools were surveyed for the study. The reliability of the short-scale was found to be acceptable (Cronbach’s α = .66), and the tendency towards resilience can be explained by the students’ perception of their social inclusion in class (F (1,252) = 15.11, p<.05) and the relationship with their mothers (F (2, 251) = 10, 02, p<.05). The stability of the students’ tendency of being resilient was only moderate. A similar correlation between resilience and school-wellbeing for victims and non-victims of bullying can be reported. Future studies should focus more on primary school students’ resilience and related protective factors.
The International Organization for Migration’s Displacement Tracking Matrix (IOM DTM), Protection and Mental Health and Psycho-Social Support teams joined efforts with Humanity & Inclusion (HI) to undertake an assessment of the level of access to services and the barriers faced by persons with disabilities within Malakal Protection of Civilian site (PoC site). The United Nations High Commissioner for Refugees (UNHCR) and the Danish Refugee Council (DRC) contributed to the qualitative component of the study as the main Protection and Camp Coordination and Camp Management (CCCM) actors operating within the PoC site. The study, based on data collected between March 2020 and June 2020, aims to improve the knowledge base available to the humanitarian community about access to services by persons with disabilities living in the site. It provides a quantitative estimate of the prevalence of disabilities among the IDP population and an assessment of the barriers faced by persons with disability in accessing humanitarian services across sectors. It also seeks to empower persons with disabilities living within the PoC site, giving them the opportunity to express their concerns and preferences with regards to possible solutions and targeted interventions. It is hoped that the resulting data will help camp management and other service providers operating within Malakal PoC site, including IOM, UNHCR and DRC, to better account for the concerns and needs of persons with disability in humanitarian programming and service delivery. This study builds onto and expands previous studies in Naivasha IDP Camp (formerly Wau PoC AA Site) and Bentiu PoC Site.
In December 2020, IDA coordinated with local and regional partners 4 (four) GDS consultations involving persons with disabilities in Africa, Latin America and Asia. These were the beginning of a series of more than 20 workshops that IDA is planning with partner organizations in different parts of the world, to assess progress made against national commitments adopted in 2018, discuss thematic priorities, and plan events, discussions and training for the run-up to the main GDS event in Oslo.
In total, consultations have been carried in 15 countries with more than 100 participants, reaching 5 (five) underrepresented groups: persons with intellectual & psychosocial disabilities, indigenous persons with disabilities, youth, and women
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.
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.
Purpose: Unmet oral health needs affect the quality of life of individuals, especially if they are already at a disadvantage like children with special health care needs. Strategies to mitigate these disparities in India’s diverse healthcare settings have hitherto been largely ineffective. This study was aimed to assess the utilisation and barriers to the use of dental health services among children with special health care needs, against the background of a coordinated healthcare programme implemented in Nitte (Deemed to be University), Mangalore, India.
Method: The study was conducted over a 6-month period, from September 2018 to February 2019. A mixed-methods design was concurrently employed for data collection. Utilisation of dental services was assessed quantitatively, and the barriers to dental services utilisation were assessed qualitatively through caregiver interviews, with a sequential data integration strategy.
Results: The quantitative data revealed gross underutilisation of dental resources by children (only 16% availed some form of dental treatment), and the prevalence of avoidance behaviour (63% showed reluctance and did not turn up for appointments). Restorative needs formed the highest unmet dental component among the children (67% required secondary dental care). In-depth interviews with the children’s caregivers revealed that the presence of cognitive barriers could have a direct effect on the time and quality of dental care delivered to their children.
Conclusion: Cognitive barriers among caregivers appear to have a profound impact on the underutilisation of dental services in their children with special healthcare needs. These barriers may be addressed within the integrated healthcare programme and the dental curricula through provisions for continued individual and community dental education, and motivational efforts that simultaneously target the caregivers and their children with special healthcare needs.
Purpose: The quality of life (QOL) of meningioma clients in Indonesia is poorly understood. This study aimed to investigate and examine the factors associated with the QOL of these meningioma clients after surgery, in order to help create an appropriate post-operative nursing intervention.
Method: This was a cross-sectional study. The QOL data was collected from a sample of 118 clients, using a EuroQol-5D-5L (EQ-5D-5L) questionnaire. Functional status, fatigue, illness perception and social support were assessed by the Barthel Index, FACIT-Fatigue Scale, Brief Illness Perception Questionnaire, and Medical Outcome Study Social Support Survey-6, respectively. Statistical analyses were conducted using the Chi-square test, Fisher’s exact test, and logistic regression test.
Results: After surgery, more than half of the 118 clients reported “ problems” in the EQ-5D dimensions of mobility (65%), self-care (57%), usual activities (70%), pain/discomfort (84%), and anxiety/depression (70%).The average postoperative EQ-5D index value (±SD) was 0.55 ± 0.26 while the median of EQ-VAS was 69.2 (IQR 40–90).Factors related to low QOL were age (p = 0.014), tumour grade (p = 0.0001), functional status (p = 0.0001), fatigue (p= 0.001), illness perception ( p = 0.0001), and social support (p = 0.001). Multivariate analysis showed that the most dominant factor associated with QOL was functional status (OR 6.728; Confidence interval=95%; p=0.008).
Conclusion and Implications:There is a correlation between age, tumour grade, functional status, fatigue, illness perception, and social support with the QOL of postoperative meningioma clients. The study recommends that these be included in their nursing assessment and an appropriate nursing rehabilitation programme be planned in order to improve their QOL.
Purpose: There is a lack of trained rehabilitation professionals, especially in the small towns and rural areas of low and middle income countries. In India, a cadre of mid-level rehabilitation workers, the Rehabilitation Therapy Assistants (RTAs), are being trained by Mobility India, a Non-Governmental Organisation (NGO). This paper aims to assess impact of their training and experiences after the training.
Method: Data were collected from 3 different initiatives connected with the trained RTAs: an impact assessment of their training; interviews with RTAs during an evaluation; and a survey of 188 RTAs trained between 2002 and 2019.
Results: RTAs were shown to have good skills to provide rehabilitation interventions in the field and are appreciated by clients and other stakeholders. Most of the RTAs work for NGOs in CBR programmes, and in private hospitals and clinics. There does not seem to be a role for them in government services in most countries. The number of trained RTAs remains small in spite of the large needs. This may be due to lack of an accreditation system for RTAs and the low priority given to rehabilitation services in general in some countries.
Conclusions: The results provide useful information to strengthen RTA training courses. Training RTAs to provide rehabilitation services in smaller towns and rural areas of low and middle income countries can have a good impact through CBR programmes. However, this impact remains circumscribed to small areas where NGOs are active. Changes are needed in health systems for the inclusion of mid-level rehabilitation workers in primary health care services.
Inclusivity is a key element to exceptional travel experiences – enabling individuals all over the world to experience diverse countries, cultures and opportunities. Yet often, disability inclusion is not at the forefront of travel products and services.
This report will support travel providers to understand why disability inclusion matters to the industry whilst celebrating and learning from providers already striving to be more inclusive through their innovative practices
To gather stories and examples of best practice from within the travel industry, we developed a “Call for Case Studies” survey which was distributed to both Leonard Cheshire and Expedia Group’s networks. From these submissions, we selected examples which highlighted innovative practice and represented our key themes of the report
Source e-bulletin on Disability and Inclusion