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PURPOSE: Very little is known about the subjective well-being (SWB) of adults with a congenital corpus callosum disorder (CCD), the extent to which they feel satisfied with their lives, and what might be helpful in improving their SWB and quality of life. This study measured SWB among Australian adults with a CCD and compared the results with normative data for the wider Australian adult population. METHODS: Online surveys were completed independently by 53 Australian adults with a CCD. Data included demographic profiles and answers to questions about satisfaction with life, employing the Personal Wellbeing Index (PWI) and one open ended question. Domains measured included life as a whole, standard of living, health, achieving in life, personal relationships, safety, community connectedness and future security. The PWI results were statistically analysed and means compared with Australian normative data. The qualitative data were analysed using deductive thematic analysis. RESULTS: Australian adults with a CCD responded with ratings significantly below what might be expected of the adult Australian population in all domains except for standard of living and safety. Quantitative analysis results were supported by qualitative thematic analysis, expressing particular challenges and barriers to feeling satisfaction with life as a whole, personal relationships, achieving in life, health and future security. CONCLUSION: Evidence from the PWI and accompanying qualitative responses indicate that SWB of Australian adults with CCD is significantly reduced compared with the general population. Further research is needed to examine the lived experience and explore solutions for support of this community.
Very little is known about the quality of life and personal well-being of Australian adults who have a corpus callosum disorder (CCD), a rare brain condition with complex impacts ranging from mild to severe. People with a CCD are born missing part or all of their corpus callosum, the connecting body between the two halves of the brain. This study asked adults with a CCD to rate their own personal wellbeing in an online questionnaire and the results were compared with those of the general Australian population. Participants were also asked to describe how a CCD affected their lives in their own words. We found that adults with a CCD have significantly lower personal wellbeing than the general Australian population. The most concerning issues were with relationships, life achievements, mental health and not having a secure future. The results tell us that we need to explore personal wellbeing in more depth using research methods in which adults with a CCD can tell us more about the impacts of a CCD on their lives. We need to ask how they think the quality of their lives could be improved and what supports would help to achieve that.
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Employment is an important social determinant of health and wellbeing. People with disability experience labour market disadvantage and have low labour force participation rates, high unemployment rates, and poor work conditions. Environmental factors are crucial as facilitators of or barriers to participation for people with disability. Understanding how the physical, social, and economic characteristics of local areas influence employment for people with disability can potentially inform interventions to reduce employment inequalities. We conducted a scoping review of research investigating associations between area-level environmental factors and employment for people with disability. Eighteen articles published between 2000 and 2020 met the inclusion criteria, and data were extracted to map the current evidence. Area-level factors were categorised into six domains relating to different aspects of environmental context: socioeconomic environment, services, physical environment, social environment, governance, and urbanicity. The urbanicity and socioeconomic environment domains were the most frequently represented (15 and 8 studies, respectively). The studies were heterogeneous in terms of methods and data sources, scale and type of geographic units used for analysis, disability study population, and examined employment outcomes. We conclude that the current evidence base is insufficient to inform the design of interventions. Priorities for future research are identified, which include further theorising the mechanisms by which area-level factors may influence employment outcomes, quantifying the contribution of specific factors, and interrogating specific factors underlying the association between urbanicity and employment outcomes for people with disability.
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Personas con Discapacidad , Empleo , Humanos , Ocupaciones , Medio Social , DesempleoRESUMEN
BACKGROUND: While classified as a rare condition, a congenital disorder of the corpus callosum (DCC) is one of the most commonly identified brain anomalies in newborns, occurring in 1:4000 live births. Advances in imaging techniques have improved early diagnosis for children, yet adults with a DCC-who may present with extreme heterogeneity in cause and impact-often experience challenges in receiving a definitive diagnosis and accessing appropriate services and supports. To date, the dearth of evidence documenting the lived experiences of adults with DCC has made it difficult to determine adequate policy and service responses. This exploratory research aims to address this gap by presenting the first qualitative examination of the experiences and impact of complete or partial agenesis of the corpus callosum among adults. RESULTS: Eight face-to-face interviews were conducted with Australian adults, aged 23-72 years, to explore their lived experience. Data was collected in four Australian states from June to August 2017. Thematic and interpretive analyses were employed to analyse data. Three emergent themes described difficulties related to: (1) reactions to the diagnosis; (2) access to supports and key life domains, and (3) identifying as an adult. Interview analysis described lived experiences typically outlining a lifetime of exclusion and misunderstanding from family, educators and disability and health support services. CONCLUSIONS: This paper contributes to filling the knowledge gap around a rare congenital brain disorder affecting the lives of adults. Findings confirm a considerable lack of information and support for adults living with corpus callosum disorders. Greater professional and societal understanding is needed to improve access to the key life domains of education, employment and social inclusion for adults with a DCC. To instigate truly effective change, social research must tackle the issues of applicability and impact to alter the dominance of uninformed practices, hindered by prevailing myths. This research paves the way for further phenomenological studies in which participant narrative is vital. Further research will elicit stronger policy and service responses for all current and emerging adults with a DCC.
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Personas con Discapacidad , Malformaciones del Sistema Nervioso , Adulto , Anciano , Agenesia del Cuerpo Calloso , Australia , Niño , Cuerpo Calloso , Humanos , Recién Nacido , Persona de Mediana Edad , Adulto JovenRESUMEN
Disability employment programs play a key role in supporting people with disability to overcome barriers to finding and maintaining work. Despite significant investment, ongoing reforms to Australia's Disability Employment Services (DES) are yet to lead to improved outcomes. This paper presents findings from the Improving Disability Employment Study (IDES): a two-wave survey of 197 DES participants that aims to understand their perspectives on factors that influence access to paid work. Analysis of employment status by type of barrier indicates many respondents experience multiple barriers across vocational (lack of qualifications), non-vocational (inaccessible transport) and structural (limited availability of jobs, insufficient resourcing) domains. The odds of gaining work decreased as the number of barriers across all domains increased with each unit of barrier reported (OR 1.22, 95% CI 1.07, 1.38). Unemployed respondents wanted more support from employment programs to navigate the welfare system and suggest suitable work, whereas employed respondents wanted support to maintain work, indicating the need to better tailor service provision according to the needs of job-seekers. Combined with our findings from the participant perspective, improving understanding of these relationships through in-depth analysis and reporting of DES program data would provide better evidence to support current DES reform and improve models of service delivery.
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Personas con Discapacidad , Empleo , Australia , Humanos , Encuestas y CuestionariosRESUMEN
Objective: To systematically review interventions aimed at improving employment participation of people with psychosocial disability, autism, and intellectual disability. Methods: We searched MEDLINE, Embase, PsycINFO, Web of Science, Scopus, CINAHL, ERIC, and ERC for studies published from 2010 to July 2020. Randomized controlled trials (RCTs) of interventions aimed at increasing participation in open/competitive or non-competitive employment were eligible for inclusion. We included studies with adults with psychosocial disability autism and/or intellectual disability. Risk of bias was assessed using the Cochrane Collaboration Risk of Bias II Tool. Data were qualitatively synthesized. Our review was registered with PROSPERO (CRD42020219192). Results: We included 26 RCTs: 23 targeted people with psychosocial disabilities (n = 2465), 3 included people with autism (n = 214), and none included people with intellectual disability. Risk of bias was high in 8 studies, moderate for 18, and low for none. There was evidence for a beneficial effect of Individual Placement and Support compared to control conditions in 10/11 studies. Among young adults with autism, there was some evidence for the benefit of Project SEARCH and ASD supports on open employment. Discussion: Gaps in the availability of high-quality evidence remain, undermining comparability and investment decisions in vocational interventions. Future studies should focus on improving quality and consistent measurement, especially for interventions targeting people with autism and/or intellectual disability.
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Trastorno Autístico , Personas con Discapacidad , Discapacidad Intelectual , Empleo , Humanos , Adulto JovenRESUMEN
People with disabilities experience health disparities arising from social, environmental, and system-level factors. Evidence from a range of settings suggests women with disabilities have reduced access to health information and experience barriers to screening, prevention, and care services. This results in greater unmet health needs, particularly in relation to sexual and reproductive health. Women with disabilities are also more likely to experience physical and sexual violence than women without disabilities, further undermining their health. Community-based participatory research (CBPR) can generate knowledge and underpin action to address such health disparities and promote health equity. However, the potential and challenges of disability inclusion in CBPR, particularly in contexts of poverty and structural inequality such as those found in low- and middle-income countries, are not well documented. In this paper, we reflect on our experience of implementing and evaluating W-DARE, a three-year program of disability-inclusive CBPR aiming to increase access to sexual and reproductive health and violence-response services for women with disabilities in the Philippines. We discuss strategies for increasing disability inclusion in research and use a framework of reflexive solidarity to consider the uneven distribution of the benefits, costs, and responsibilities for action arising from the W-DARE program.
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Investigación Participativa Basada en la Comunidad/métodos , Personas con Discapacidad , Adulto , Femenino , Accesibilidad a los Servicios de Salud , Disparidades en Atención de Salud , Humanos , Filipinas , Pobreza , Salud Reproductiva , Delitos Sexuales , ViolenciaRESUMEN
BACKGROUND: Continual reforms of the Australian Disability Employment Services (DES) program aim to improve employment outcomes for people with disabilities, including people with a psychosocial disability who experience high levels of unemployment. OBJECTIVE: To understand contextual factors in the lives of DES participants with a psychosocial disability that influence their engagement with and potential benefits from the DES program in the context of the 2018 reforms. METHODS: Thematic analysis of 30 qualitative interviews with DES participants with a psychosocial disability was conducted as part of the Improving Disability Employment Study between November 2017 to October 2018. RESULTS: Findings highlight diverse life challenges experienced by DES participants including disrupted education, inadequate access to mental and general health services, and financial and housing insecurity. CONCLUSIONS: The life circumstances of DES participants with a psychosocial disability are often complex and undermine their engagement with employment services and access to labour markets. Despite considerable investment in ongoing reforms, these circumstances continue to undermine the effectiveness of the DES program.
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Evaluación de la Discapacidad , Personas con Discapacidad/psicología , Vivienda/normas , Adulto , Australia , Personas con Discapacidad/rehabilitación , Personas con Discapacidad/estadística & datos numéricos , Femenino , Vivienda/estadística & datos numéricos , Vivienda/provisión & distribución , Humanos , Entrevistas como Asunto/métodos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Encuestas y CuestionariosRESUMEN
BACKGROUND: Employment is recognised as facilitating the personal and clinical recovery of people with psychosocial disability. Yet this group continue to experience considerable barriers to work, and, constitute a significant proportion of individuals engaged with Disability Employment Services (DES). Recognition of the role of recovery-oriented practice within DES remains limited, despite these approaches being widely promoted as best-practice within the field of mental health. METHODS: The Improving Disability Employment Study (IDES) aims to gather evidence on factors influencing employment outcomes for Australians with disability. Descriptive analysis and linear regression of IDES survey data from 369 DES participants, alongside narrative analysis of data collected through 56 in-depth interviews with 30 DES participants with psychosocial disability, allowed us to explore factors influencing mental health, well-being and personal recovery within the context of DES. RESULTS: Psychosocial disability was reported as the main disability by 48% of IDES respondents. These individuals had significantly lower scores on measures of mental health and well-being (44.9, 48.4 respectively, p ≤ 0.01), compared with respondents with other disability types (52.2, 54.3 p ≤ 0.01). Within this group, individuals currently employed had higher mental health and well-being scores than those not employed (47.5 vs 36.9, 55.5 vs 45.4 respectively, p ≤ 0.01). Building on these findings, our qualitative analysis identified five personal recovery narratives: 1) Recovery in spite of DES; 2) DES as a key actor in recovery; 3) DES playing a supporting role in fluctuating journeys of recovery; 4) Recovery undermined by DES; and, 5) Just surviving regardless of DES. Narratives were strongly influenced by participants' mental health and employment status, alongside the relationship with their DES worker, and, participants' perspectives on the effectiveness of services provided. CONCLUSION: These findings re-iterate the importance of work in supporting the mental health and well-being of people with psychosocial disability. Alongside access to secure and meaningful work, personal recovery was facilitated within the context of DES when frontline workers utilised approaches that align with recovery-orientated practices. However, these approaches were not consistently applied. Given the number of people with psychosocial disability moving through DES, encouraging greater consideration of recovery-oriented practice within DES and investment in building the capacity of frontline staff to utilise such practice is warranted.
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Personas con Discapacidad/rehabilitación , Empleo/psicología , Recuperación de la Salud Mental , Narración , Adolescente , Adulto , Australia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Women with disabilities experience a range of violations of their sexual and reproductive rights. The Philippines ratified the United Nations Convention on the Rights of Persons with Disabilities and have laws in place to promote the rights to sexual and reproductive health and protection from violence. However, limited resourcing, and opposition to such laws undermine access to these rights for all women. Inadequate disability inclusion within policy and programming, and limited disability awareness of services, further impedes women with disabilities from attaining these rights. The W-DARE project (Women with Disability taking Action on REproductive and sexual health) was a three-year participatory action research program designed to (1) understand the sexual and reproductive health experiences and needs of women with disabilities; and (2) improve access to quality sexual and reproductive health, including violence response services, for women with disabilities in the Philippines. In response to the highlighted need for more information about sexual and reproductive health and greater access to services, the W-DARE team developed and implemented a pilot intervention focused on peer-facilitated Participatory Action Groups (PAGs) for women with disabilities. This paper focuses on the qualitative findings from the evaluation of this PAG intervention.
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Personas con Discapacidad/psicología , Personas con Discapacidad/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Servicios de Salud Reproductiva/estadística & datos numéricos , Derechos de la Mujer/legislación & jurisprudencia , Adulto , Anciano , Anciano de 80 o más Años , Personas con Discapacidad/legislación & jurisprudencia , Femenino , Accesibilidad a los Servicios de Salud/legislación & jurisprudencia , Humanos , Persona de Mediana Edad , Filipinas , Servicios de Salud Reproductiva/legislación & jurisprudenciaRESUMEN
BACKGROUND: International recognition that people with disabilities were excluded from the Millennium Development Goals has led to better inclusion of people with disabilities in the recently agreed Global Goals for Sustainable Development (SDGs) 2015-2030. Given the current global agenda for disability inclusion, it is crucial to increase the understanding of the situation of people with disabilities in the Philippines. The aim of this study was to estimate the prevalence of disability and compare the well-being and access to the community between people with and without disabilities. METHODS: A population-based survey was undertaken in District 2 of Quezon City and in Ligao City. 60 clusters of 50 people aged 18 years and older were selected with probability proportion to size sampling from both locations. The Rapid Assessment of Disability (RAD) survey was used to identify people with disabilities based on their responses to activity limitations. The levels of well-being and access to the community for people with disabilities were compared with controls matched by age, gender, and cluster. Information on barriers to accessing the community was also collected. RESULTS: The prevalence of disability was 6.8 (95 % CI: 5.9, 7.9) and 13.6 % (95 % CI: 11.4, 16.2) in Quezon City and Ligao City respectively. Psychological distress was the most commonly reported condition in both locations, although it was often reported with a co-morbid condition related to sensory, physical, cognitive, and communication difficulties. The prevalence of disability was associated with age and no schooling, but not associated with poverty. People with disabilities had significantly lower well-being scores and reduced access to health services, work, rehabilitation, education, government social welfare, and disaster management than people without disability. Having a disability and negative family attitudes were reported as barriers for people with disabilities participating in work, community meetings, religious activities, and social activities. CONCLUSIONS: The prevalence of disability among adults in District 2 of Quezon City and in Ligao City is higher than the estimated national prevalence of disability derived from the 2010 Philippines census. Disability is also associated with lower well-being and reduced participation across a number of domains of community life.
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Personas con Discapacidad , Educación , Empleo , Salud , Características de la Residencia , Seguridad , Aislamiento Social , Adolescente , Adulto , Femenino , Accesibilidad a los Servicios de Salud , Estado de Salud , Encuestas Epidemiológicas , Humanos , Masculino , Persona de Mediana Edad , Prevalencia , Calidad de Vida , Factores Socioeconómicos , Estrés Psicológico/etiología , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: The Philippines has ratified the United Nations Convention on the Rights of Persons with Disabilities and recently passed domestic legislation protecting the sexual and reproductive rights of people with disability. However women in the Philippines continue to report barriers to sexual and reproductive health services, and there is limited empirical evidence available to inform policy makers' efforts to respond. This study aims to contribute to the available evidence by examining service providers' perceptions of disability and their experiences providing sexual and reproductive health services to women with disability. METHODS: The study was conducted as part of a larger three-year program of participatory action research that aims to improve the sexual and reproductive health of women with disabilities in the Philippines. Fourteen in-depth interviews and two focus group discussions were conducted with a total of thirty-two sexual and reproductive health service providers in Quezon City and Ligao. Qualitative data were analysed to identify key themes in participants' discussion of service provision to women with disability. RESULTS: Analysis of service providers' accounts suggests a range of factors undermine provision of high quality sexual and reproductive health services to women with disability. Service providers often have limited awareness of the sexual and reproductive health needs of women with disability and inadequate understanding of their rights. Service providers have had very little training in relation to disability, and limited access to the resources that would enable them to provide a disability inclusive service. Some service providers hold prejudiced attitudes towards women with disability seeking sexual and reproductive health services, resulting in disability-based discrimination. Service providers are also often unaware of specific factors undermining the health of women with disability, such as violence and abuse. CONCLUSION: Recent legislative change in the Philippines opens a window of opportunity to strengthen sexual and reproductive health service provision across the country. However the development of services that are disability-inclusive will require substantial efforts to address supply-side barriers such as prejudiced service provider attitudes and limited capacity. Disability inclusion must be prioritised for the national goal of responsible parenthood and reproductive health to be realised for all.
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Actitud del Personal de Salud , Personas con Discapacidad , Accesibilidad a los Servicios de Salud/normas , Servicios de Salud Reproductiva/estadística & datos numéricos , Femenino , Grupos Focales , Humanos , Filipinas , Investigación CualitativaRESUMEN
BACKGROUND: In many contexts, women with disability have less access to sexual and reproductive health information, screening, prevention, and care services than women without disability. Women with disability are also known to be more likely to experience physical and sexual violence than women without disability. In the Philippines, health service providers often have little awareness of the sexual and reproductive experiences of women with disability and limited capacity to provide services in response to their needs. Very limited data are available to inform development of disability-inclusive sexual and reproductive health, and violence prevention and response, services in the country. This paper presents the protocol for W-DARE (Women with Disability taking Action on REproductive and sexual health), a three-year program of participatory action research that aims to improve the sexual and reproductive health of women with disability in the Philippines. DESIGN: W-DARE is a disability-inclusive program that will use mixed methods to 1) increase understanding of factors influencing the sexual and reproductive health of women with disability, and 2) develop, implement and evaluate local interventions to increase supply of and demand for services. W-DARE will generate data on the prevalence of disability in two districts; the wellbeing and community participation of people with and without disability, and identify barriers to community; and describe the sexual and reproductive health needs and experiences, and service-related experiences of women with disability. These data will inform the development and evaluation of interventions aiming to improve access to sexual and reproductive health services, and violence prevention and response services, for women with disability. Local women with disabilities, their representative organisations, and SRH service providers will be involved as members of the research team across all stages of the research. DISCUSSION: This three-year study will provide evidence about factors undermining the sexual and reproductive health of women with disability in a lower-middle income country, and provide new insights about what may be effective in increasing access to services in settings of limited resources. Findings will be relevant across Asia and the Pacific. Analysis of the program will also provide evidence about disability-inclusion in participatory action research approaches.
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Participación de la Comunidad , Personas con Discapacidad , Accesibilidad a los Servicios de Salud , Servicios de Salud para Personas con Discapacidad , Servicios de Salud Reproductiva , Salud Reproductiva , Violencia/prevención & control , Adolescente , Adulto , Investigación Participativa Basada en la Comunidad , Femenino , Investigación sobre Servicios de Salud , Humanos , Filipinas , Pobreza , Desarrollo de Programa , Proyectos de Investigación , Características de la Residencia , Delitos Sexuales/prevención & controlRESUMEN
BACKGROUND: The aim of this study was to estimate the prevalence of disability and its associated risk factors among adults aged 18 years and over in Bogra district, Bangladesh. METHODS: The Rapid Assessment of Disability (RAD) survey was conducted using probability-proportional-to-size sampling to select 66 clusters each with 50 people aged 18 years and older in 2010. Households within clusters were selected through compact segment sampling. Disability was identified based on the responses to the self-assessment of functioning section of the RAD questionnaire. Descriptive and multivariate logistic regression analyses were performed to model the associations between risk factors and disability status. RESULTS: Of 1855 adults who participated in the study, 195 (10.5 %) had disability. Age and gender adjusted prevalence of disability in Bogra district was 8.9 % (95 % CI: 7.7, 10.3). The highest prevalence of functional limitation was related to psychological distress (4.7 %; 95 % CI: 3.8, 5.7) followed by vision (4.4 %; 95 % CI: 3.6, 5.4), and hearing (2.3 %; 95 % CI: 1.7, 3.0) difficulties. The adjusted odds of disability increased with age with approximately eight-fold increase from 2.9 % (95 % CI: 1.6, 5.1) in 18-24 years to 24.5 % (95 % CI: 20.2, 29.4) in 55 years and above. People with poor socio-economic status (OR 1.90; 95 % CI: 1.1, 3.3) and who were unemployed (OR = 4.6; 95 % CI: 1.8, 11.6) were more like to have disability compared to the higher socio-economic status and those who have an occupation respectively. CONCLUSIONS: There is a significant need for promoting programs for health, well-being, and rehabilitation, and policies specifically targeting the older population, women, unemployed and poor people in Bangladesh.
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Evaluación de la Discapacidad , Personas con Discapacidad/estadística & datos numéricos , Características de la Residencia , Encuestas y Cuestionarios/normas , Adulto , Anciano , Bangladesh/epidemiología , Femenino , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Ocupaciones , Prevalencia , Factores de Riesgo , Autoevaluación (Psicología) , Clase Social , Adulto JovenRESUMEN
BACKGROUND: The Rapid Assessment of Disability (RAD) questionnaire measures the magnitude and impact of disability and aims to inform the design of disability inclusive development programs. This paper reports the psychometric evaluation of the RAD. METHODS: The initial version of the RAD comprised five sections: 1) demographics, 2) functioning, 3) rights awareness, 4) well-being, and 5) access to the community. Item functioning and construct validity were assessed in a population-based study in Bangladesh. Data were analysed using descriptive statistics (sections 2 and 5) and Rasch modelling (sections 3 and 4). A subsequent case-control study in Fiji tested the refined questionnaire in a cross-cultural setting and assessed the sensitivity and specificity of the RAD section 2 to identify people with disability. RESULTS: 2,057 adults took part in the study (1,855 in Bangladesh and 202 in Fiji). The prevalence of disability estimated using RAD section 2 in Bangladesh was 10.5% (95% CI 8.8-12.2), with satisfactory sensitivity and specificity (62.4% and 81.2%, respectively). Section 3 exhibited multidimensionality and poor differentiation between levels of rights awareness in both Bangladesh (person separation index [PSI] = 0.71) and Fiji (PSI = 0.0), and was unable to distinguish between people with and without disability (Bangladesh p = 0.786, Fiji p = 0.43). This section was subsequently removed from the questionnaire pending re-development. Section 4 had good ability to differentiate between levels of well-being (PSI = 0.82). In both countries, people with disability had significantly worse well-being scores than people without disability (p < 0.001) and also access to all sectors of community except legal assistance, drinking water and toilets (p < 0.001). CONCLUSIONS: Filed-testing in Bangladesh and Fiji confirmed the psychometric robustness of functioning, well-being, and community access sections of the RAD. Information from the questionnaire can be used to inform and evaluate disability inclusive development programs.
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Evaluación de la Discapacidad , Personas con Discapacidad , Encuestas y Cuestionarios/normas , Adulto , Anciano , Concienciación , Bangladesh/epidemiología , Estudios de Casos y Controles , Personas con Discapacidad/estadística & datos numéricos , Femenino , Fiji , Salud , Derechos Humanos , Humanos , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los Resultados , Características de la Residencia , Sensibilidad y Especificidad , Adulto JovenRESUMEN
PURPOSE: A review of existing measurement instruments was conducted to examine their suitability to measure disability prevalence and assess quality of life, protection of disability rights and community participation by people with disabilities, specifically within the context of development programs in low and middle-income countries. METHODS: From a search of PubMed and the grey literature, potentially relevant measurement instruments were identified and examined for their content and psychometric properties, where possible. Criteria for inclusion were: based on the WHO's International Classification of Functioning Disability and Health (ICF), used quantitative methods, suitable for population-based studies of disability inclusive development in English and published after 1990. Characteristics of existing instruments were analysed according to components of the ICF and quality of life domains. RESULTS: Ten instruments were identified and reviewed according to the criteria listed above. Each version of instruments was analysed separately. Only three instruments included a component on quality of life. Domains from the ICF that were addressed by some but not all instruments included the environment, technology and communication. CONCLUSION: The measurement instruments reviewed covered the range of elements required to measure disability-inclusion within development contexts. However no single measurement instrument has the capacity to measure both disability prevalence and changes in quality of life according to contemporary disability paradigms. The review of measurement instruments supports the need for developing an instrument specifically intended to measure disability inclusive practice within development programs. Implications for Rehabilitation Surveys and tools are needed to plan disability inclusive development. Existing measurement tools to determine prevalence of disability, wellbeing, rights and access to the community were reviewed. No single validated tool exists for population-based studies, uses quantitative methods and the components of the ICF to measure prevalence of disability, well-being of people with disability and their access to their communities. A measurement tool that reflects the UNCRPD and addresses all components of the ICF is needed to assist in disability inclusive development, especially in low and mid resource countries.
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Países en Desarrollo , Evaluación de la Discapacidad , Personas con Discapacidad/rehabilitación , Evaluación de Resultado en la Atención de Salud , Calidad de Vida , Personas con Discapacidad/clasificación , Derechos Humanos , Humanos , PsicometríaRESUMEN
BACKGROUND: HIV risks for women who inject drugs and those who engage in sex work are well documented. Women who are dependent on non-injecting drugs and alcohol are also likely to have increased vulnerability to HIV infection, but until they actually inject drugs or engage in sex work, are unlikely to come to the attention of HIV prevention programs. METHODS: We undertook a qualitative study involving nine focus group discussions (FGDs) and 27 key informant interviews to investigate the context of female drug and alcohol use in two high HIV prevalence states of India (Manipur and Nagaland) and to describe their HIV risks. The FGD and interview transcripts were thematically analyzed RESULTS: The women were relatively young (mean age 31 years in Manipur and 28 years in Nagaland), but 64% in Manipur and 35% in Nagaland were widowed or divorced. Both heroin and alcohol were commonly used by the women from Manipur, while alcohol was primarily used by the women from Nagaland, especially in the context of 'booze joints' (illicit bars). Reasons for drug and alcohol use included: to avoid symptoms of withdrawal, to suppress emotional pain, to overcome the shame of sex work, pleasure, and widowhood. HIV vulnerability was clearly described, not only in relation to injecting drug use and sex work, but also alcohol consumption. CONCLUSIONS: The contribution of alcohol use to the HIV vulnerability of women is not currently considered when HIV prevention programs are being designed and implemented leaving a group of high-risk women uncovered by much needed services such as treatment for a range of health problems including alcohol dependence.
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Consumo de Bebidas Alcohólicas/epidemiología , Infecciones por VIH/prevención & control , Asunción de Riesgos , Abuso de Sustancias por Vía Intravenosa/epidemiología , Adolescente , Adulto , Consumo de Bebidas Alcohólicas/psicología , Femenino , Grupos Focales , Infecciones por VIH/epidemiología , Infecciones por VIH/psicología , Humanos , India/epidemiología , Investigación Cualitativa , Trabajo Sexual , Abuso de Sustancias por Vía Intravenosa/complicaciones , Abuso de Sustancias por Vía Intravenosa/psicología , Poblaciones Vulnerables , Adulto JovenRESUMEN
BACKGROUND AND OBJECTIVES: The study objective was to enhance understanding of female sex workers' lives in Nagaland, India (one of the country's highest HIV prevalence states), to inform the development of interventions to reduce HIV transmission and assist women who want to leave sex work. METHODS: A cross-sectional survey (n = 220) and semi-structured interviews (n = 30) were conducted with sex workers. Topics included the following: life situation currently and at time of initial engagement in sex work, circumstances of first sex work occasion, and current patterns of sex work. RESULTS: Participants' lives at time of entry into sex work were socio-culturally and economically vulnerable as evidenced by the early age of sexual debut, low levels of education, unemployment, absence of protective male partners, and poor relationships with families. Participants experienced high levels of mobility, insecure accommodation, the need to financially support family, and the demand to give a portion of their income to others. The use of alcohol and other drugs, including heroin, was widespread. DISCUSSION AND CONCLUSIONS: For these women, sex work can be seen as a pragmatic option for earning sufficient income to live. The women's lives would be improved by strategies to promote their health, ensure their safety, and protect their rights as long as they are engaging in sex work. This is likely to benefit not only the sex workers but also their children, their families, and the wider community. The development of alternative employment opportunities is vital to protect against entry into sex work and to support women who want to exit sex work.
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Acontecimientos que Cambian la Vida , Trabajo Sexual , Adolescente , Adulto , Estudios Transversales , Desarrollo Económico , Femenino , Humanos , India , Entrevistas como Asunto , Persona de Mediana Edad , Adulto JovenRESUMEN
There are an estimated 1800-3500 sex-workers in Dimapur, the commercial capital of Nagaland, which is the second-highest HIV prevalence state in India. The HIV prevalence among these sex-workers has increased from 4.4% in 2004 to 16.4% in 2006, highlighting their vulnerability. The aim of this study was to contribute to understanding of the pathways to sex-work for women in Nagaland in order to inform the development of effective HIV prevention strategies. A convenient sample of 220 female sex-workers completed a cross-sectional survey, and 30 female sex-workers participated in semi-structured in-depth interviews during mid 2007. Participants were asked about their life situation at the time of initial engagement in sex-work and circumstances of the first occasion of sex-work. The four main pathways into sex-work were identified as: (1) to obtain money to meet basic needs for self and family (45% of survey and 43% of interview participants); (2) to obtain money to purchase drugs or alcohol (15% of survey and 27% of interview participants); (3) being coerced, tricked or forced into sex-work (13% of survey and 30% of interview participants); and (4) for pleasure (12% of survey and no interview participants). Women from each of these pathways were significantly different from each other in relation to a range of socio-cultural variables (e.g., ethnicity, marital status and education), and HIV risk factors (e.g., drug and alcohol use, age of sexual debut and HIV awareness). This diversity has implications for HIV prevention strategies, including the willingness and capacity of sex-workers to mobilise as a community and NGO capacity to ensure that the interests of all sex-workers are adequately captured and represented.
Asunto(s)
Infecciones por VIH , Trabajo Sexual , Síndrome de Inmunodeficiencia Adquirida/prevención & control , Coerción , Redes Comunitarias , Estudios Transversales , Diversidad Cultural , Femenino , Infecciones por VIH/prevención & control , Educación en Salud , Humanos , India , Entrevistas como Asunto , Lingüística , Placer , Trabajo Sexual/etnología , Conducta Sexual , Factores Socioeconómicos , Trastornos Relacionados con SustanciasRESUMEN
BACKGROUND: Careful planning is essential to ensure blood availability during shortages. Triaging supply is one proposed strategy; however, few data concerning the urgency of transfusion are available to inform planning. This study sought to determine the proportion of red blood cells (RBCs) used for clinically urgent indications. STUDY DESIGN AND METHODS: A total of 5132 RBC units were randomly selected at point of production and distributed into general statewide inventory over a 9-month period. These selected units carried case report forms, for completion at the point of hospital issue for transfusion. Completed forms were returned to the blood service for collation and analysis, capturing information on indication and clinical urgency of supply, including use for potentially deferrable elective surgery. RESULTS: Data from 5052 RBC units indicated that 95.6% were transfused. Approximately one-third of transfused units were used to support surgery, one-third for hematology/oncology, and one-third for other medical and miscellaneous indications. Where used for surgery, 25.7% (95% confidence interval [CI], 23.4%-28.0%) were for elective procedures, although urgency of surgery was unknown in 17.1% (95% CI, 15.2%-19.2%) of cases. Supply for nonurgent medical indications and elective surgery only accounted for 9.8% (95% CI, 9.0%-10.6%) of use, with 53.4% (95% CI, 52.0%-54.8%) of RBCs required within 24 hours. CONCLUSIONS: The majority of RBCs are transfused with a high degree of clinical urgency, with only a minor proportion required to support elective surgery.
Asunto(s)
Transfusión Sanguínea/estadística & datos numéricos , Transfusión de Eritrocitos/estadística & datos numéricos , Urgencias Médicas , Humanos , TriajeRESUMEN
BACKGROUND: HIV prevalence in north-east India is high and injecting drug use (IDU) is common. Due to HIV-related deaths there are increasing numbers of IDU widows, many of whom are HIV infected, and experiencing poor health, social isolation, discrimination and poverty, all factors likely to be compromising their mental health. There is increasing recognition of the links between HIV and mental health. METHODS: The aim of this study was to pilot a peer-facilitated, participatory action group (PAG) process and assess the impact of the intervention on the mental health of participants. The intervention consisted of 10 PAG meetings involving 74 IDU widows. Changes in quality of life (WHOQOL-BREF), mental health (GHQ12) and somatic symptoms were assessed. The value of the intervention from the perspective of the participants was captured using a qualitative evaluation method (Most Significant Change). RESULTS: Participants' quality of life, mental health and experience of somatic symptoms improved significantly over the course of the intervention, and the women told stories reflecting a range of 'significant changes'. CONCLUSION: This pilot intervention study demonstrated that a participatory approach to mental health promotion can have a positive impact on the lives of vulnerable women, and the potential to contribute to HIV prevention. Further investigation is warranted.