Participatory inclusion evaluation: a flexible approach to building the evidence base on the impact of community-based rehabilitation and inclusive development programmes

In response to the variability, complexity, and cross-sectoral nature of community-based rehabilitation (CBR) programmes and the lack of a structured approach to impact evaluations, an innovative model and set of tools, called the participatory inclusion evaluation (PIE) approach, has been developed. This is conceptualised in an evaluation framework, influenced by diverse evaluation theories and methods used in mainstream international development. Each has its own merits and shortcomings, so we have developed a hybrid to ensure a pragmatic and flexible mixed methods approach. We discuss the theoretical choices made in the evolution of PIE. PIE involves the participation of three types of stakeholders: people with disabilities, the CBR core team, and the network of strategic partners. PIE assesses the impact and the what, how and why of CBR programmes, privileging people with disabilities’ perspectives. In synchrony with the UN Convention on the Rights of Persons with Disabilities (CRPD) principles and the World Health Organisation (WHO) CBR guidelines, impact is defined as changes in inclusion, empowerment, and living conditions. PIE was developed using a participatory process, piloted in Uganda and Malawi. It provides a flexible outcome and impact evaluation methodology for CBR, using a mixture of quantitative and qualitative data, using an inclusive and participatory approach

Services for people with Communication Disabilities in Uganda: supporting a new Speech and Language Therapy profession

Services for people with communication disability (PWCD), including speech and language therapists (SLTs), are scarce in countries of the global South. A SLT degree programme was established at Makerere University, Uganda, in 2008. In 2011, an innovative project was set up to provide in-service training and mentoring for graduates and staff of the programme. This paper describes the project and its evaluation over three years. Three types of input: direct training, face-to-face individual and group meetings, and remote mentoring, were provided to 26 participants and evaluated using written and verbal methods. The first two types of input were evaluated mainly positively, while remote mentoring received more mixed evaluations. Less positive evaluations were linked to factors including resourcing, cultural perceptions about professional roles and services, work patterns, power/status, engagement, perceptions of help-seeking, community recognition of the needs for services for PWCD. Findings suggest that participatory approaches, flexibility, reflexivity and open discussion with participants around support and work challenges, are important. Power gradients between white Northern ‘experts’ and relatively inexperienced East African SLTs, contributed to some challenges. Structural issues about degree programme structures and statutory bodies, provide lessons about the development of new services and professions in low-income settings

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

Constraining the presence of giant planets in two-belt debris disk systems with VLT/SPHERE direct imaging and dynamical arguments

Giant, wide-separation planets often lie in the gap between multiple, distinct rings of circumstellar debris: this is the case for the HR 8799 and HD 95086 systems, and even the solar system where the Asteroid and Kuiper belts enclose the four gas and ice giants. In the case that a debris disk, inferred from an infrared excess in the SED, is best modelled as two distinct temperatures, we infer the presence of two spatially separated rings of debris. Giant planets may well exist between these two belts of debris, and indeed could be responsible for the formation of the gap between these belts. We observe 24 such two-belt systems using the VLT/SPHERE high contrast imager, and interpret our results under the assumption that the gap is indeed formed by one or more giant planets. A theoretical minimum mass for each planet can then be calculated, based on the predicted dynamical timescales to clear debris. The typical dynamical lower limit is ˜0.2MJ in this work, and in some cases exceeds 1MJ. Direct imaging data, meanwhile, is typically sensitive to planets down to ˜3.6MJ at 1", and 1.7MJ in the best case. Together, these two limits tightly constrain the possible planetary systems present around each target, many of which will be detectable with the next generation of high-contrast imagers

SDGs, Inclusive Health and the path to Universal Health Coverage. Disability and The Global South

The Sustainable Development Goals (SDGs) are a set of goals designed to improve the social, economic and well-being of all, while maintaining global and environmental sustainability. Health is one of the 17 goals, and focuses not only on addressing morbidity and mortality, but also on improving access to healthcare services for all through Universal Health Coverage (UHC). While disability is not specifically mentioned in this goal, a focus on people with disabilities is important given the inclusive nature of the SDGs and the fact that people with disabilities make up the largest minority group in the world. This paper aims to critically consider what the health goal could mean for people with disabilities and advocates for inclusive health. It discusses the complex relationship between disability and health, and why people with disabilities are more vulnerable to poor health are discussed, and then considers factors that impact access to quality healthcare for people with disabilities and how these impact on the achievement of the targets in SDG Health Goal and the main principles of UHC. The paper argues that developing an inclusive approach to healthcare will not only improve achieving good health for all, but is also important since experiencing poor health may reduce quality of life and participation (e.g. in education, employment or community activities). Poor quality of life and participation can exacerbate disability, poverty and exclusion in addition to increasing suffering, morbidity and early mortality. The paper concludes that an inclusive UHC will not only fulfil the fundamental rights of people with disabilities to health and rehabilitation, as emphasized within the UN Convention on the Rights of Persons with Disabilities, but also contribute to the achievement of the SDGs

An INGO’s participatory practice in informing CBR guidelines: Ghanaian and Ugandan experiences.

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

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

The Rachel Carson Letters and the Making of Silent Spring

Environment, conservation, green, and kindred movements look back to Rachel Carson’s 1962 book Silent Spring as a milestone. The impact of the book, including on government, industry, and civil society, was immediate and substantial, and has been extensively described; however, the provenance of the book has been less thoroughly examined. Using Carson’s personal correspondence, this paper reveals that the primary source for Carson’s book was the extensive evidence and contacts compiled by two biodynamic farmers, Marjorie Spock and Mary T. Richards, of Long Island, New York. Their evidence was compiled for a suite of legal actions (1957-1960) against the U.S. Government and that contested the aerial spraying of dichlorodiphenyltrichloroethane (DDT). During Rudolf Steiner’s lifetime, Spock and Richards both studied at Steiner’s Goetheanum, the headquarters of Anthroposophy, located in Dornach, Switzerland. Spock and Richards were prominent U.S. anthroposophists, and established a biodynamic farm under the tutelage of the leading biodynamics exponent of the time, Dr. Ehrenfried Pfeiffer. When their property was under threat from a government program of DDT spraying, they brought their case, eventually lost it, in the process spent US$100,000, and compiled the evidence that they then shared with Carson, who used it, and their extensive contacts and the trial transcripts, as the primary input for Silent Spring. Carson attributed to Spock, Richards, and Pfeiffer, no credit whatsoever in her book. As a consequence, the organics movement has not received the recognition, that is its due, as the primary impulse for Silent Spring, and it is, itself, unaware of this provenance

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