Care, disability and HIV in Africa: diverging or interconnected concepts and practices?

Recent research and policy have recognised the central role of unpaid care-givers (often women and girls) in the global South. Disability rights perspectives, however, challenge the language of ‘care’ and ‘dependence’. Drawing on qualitative research with women living with HIV and children caring for them in Tanzania, and on learning from the National Community of Women Living with HIV and AIDS in Uganda (NACWOLA), this paper explores the divergences and interconnections between the concepts and practices of care, disability and HIV in the context of East Africa. Despite the development of interdependent caring relations, both care-givers and people living with HIV in Tanzania experience ‘diminished autonomy’. The participation of people living with HIV, including disabled people, in home-based care and in peer support groups, however, can enhance ‘relational autonomy’ for both care-givers and care-recipients. We reflect on opportunities and challenges for mutual learning and cross-movement advocacy by disabled people, people living with HIV and care-givers.

Reasonable adjustments for disabled pupils: what support do parents want for their child?

Schools in England (as elsewhere in Europe) have a duty to promote equality for disabled people and make reasonable adjustments for disabled children. There is, however, a degree of uncertainty about how well-placed parents are addressed to use the legislation to ensure their child’s needs. This paper presents data drawn from a national questionnaire designed for schools to use to identify their disabled pupils and examines, in detail, parental responses to a question on the kinds of support their child finds helpful in offsetting any difficulties they experience. It illustrates the complex and varied nature of the ‘reasonable adjustments’ that are required and an overriding sense that need to be underpinned by the values of a responsive child-centred approach, one that recognises that parents’ knowledge and understanding of their child are important. Schools need to have in place the two-way communication process that supports them in ‘knowing’ about the visible and invisible challenges that pupils with difficulties and disabilities face in participating in school life.

Supporting schools in identifying and safeguarding the needs of disabled children: the challenges for data collection

Conceptualisations of disability that emphasise the contextual and cultural nature of disability and the embodiment of these within a national system of data collection present a number of challenges especially where this process is devolved to schools. The requirement for measures based on contextual and subjective experiences gives rise to particular difficulties in achieving parity in the way data is analysed and reported. This paper presents an account of the testing of a tool intended for use by schools as they collect data from parents to identify children who meet the criteria of disability established in Disability Discrimination Acts (DDAs). Data were validated through interviews with parents and teachers and observations of children and highlighted the pivotal role of the criterion of impact. The findings are set in the context of schools meeting their legal duties to identify disabled children and their support needs in a way that captures the complexity of disabled children’s school lives and provides useful and useable data.

A new Home, far from Home : The assimilation process of women involved in intercultural marriages based on Internet meeting

The internet has revolutionized the way we socialize, and as a consequence the way to love. The new communication technologies have facilitated intercultural relationships. Nowadays family relations are one of the major factors in immigration to European countries. Family relations means persons who arrive as family dependents and in accordance with laws regulating family reunification. This thesis aims to apply the classical assimilation theory stated by Milton Gordon (1964), which formulates a series of assimilation stages through which an individual must pass in order to be completely assimilated. In accordance with this theory, marriage is the final phase for a newcomer to fully incorporate into the host society. Thus, based on this presumption and other contemporary theories, the present study has analysed how women who get involved in intercultural marriages based on internet meeting experience these assimilation stages and evaluated the resources used by respondents to incorporate themselves into Swedish society.The main goal of the study was to determine if jumping to the last stage of assimilation does assure the incorporation in the social or/and labour spheres and the findings demonstrate that even though husbands are a valuable resource for assimilation, several cultural issues in Swedish society make it difficult to assure success for the newcomers.On the other hand, Sweden is a country with a strong national sentiment and the assimilation of immigrants still is an important issue to deal with. The Swedish Integration Board has disappeared and major projects for integration have been left in the hands of the municipalities or the Migration Board, institutions that still do not know how to deal with this dilemma.

O Evangelho segundo a Pastoral da Criança :por uma pedagogia da sobrevivência

This work aims to analyze social and educational actions at Pastoral da Criança, using education as a survival tool. This was done at Parque dos Coqueiros, a neighborhood in Natal, Rio Grande do Norte. The methodology for data collection was composed of comprehensive interview (Jean Kaufmann), participant observation (Robert Bogdan) and documental analysis (Le Goff); all os which bring reflections related to concepts such as strategies, tatics and know how (Michel de Certeau), configuration (Nobert Elias), and control technology (Michel de Foucault), care ethics (Leonardo Boff) and etno-theories (Natália Ramos). Pastoral da Criança is a social action organism that belongs to the National Conference of Bishops of Brazil, originated at Florestópolis, Londrina (Paraná), in the year of 1983. These actions have been an expression of a new logic of actions of the Catholic Church. It values the participation of laymen in the activities of the Pastoral. Thus, the parish is seen as a nucleus that irradiates the Church s Social Doctrine. At Rio Grande do Norte this institution has guided poverty stricken families on issues related to children s health as well as working with laymen for volunteer work. This is considered devotion, that is firmed by an individual and group mystique. The social and educational actions are done in three axes: 1) Monthly home visits, where there is mother-child support; 2) Life Celebration Day, where they weigh children and promote nutritional surveillance; 3) Meeting for Evaluation and Reflection, that aims to articulate community leaders to think about problems attached to the social actions they realize. This action tripod , as it is called by the Pastoral Agents are the types of actions that fundament survival education for poor children ranging from 0 to 6 years old. The families learn to deal with prevention, the essential, the alternative and probabilities of survival tactics due to exclusion matters or even social extermination. The Pastoral da Criança aims to recover childhood emotions in poverty stricken areas. It also has influence in the diminishing of malnutrition and mother and child mortality. This education for survival is the base on the art of teaching and learning of poverty stricken children. It is a social educational action, non assistencialist, but considered a shy action in order to promote mobilization of the communities that are accompanied for the emancipation and change of social conditions

Towards global consensus on outcome measures for atopic eczema research: results of the HOME II meeting

The use of nonstandardized and inadequately validated outcome measures in atopic eczema trials is a major obstacle to practising evidence-based dermatology. The Harmonising Outcome Measures for Eczema (HOME) initiative is an international multiprofessional group dedicated to atopic eczema outcomes research. In June 2011, the HOME initiative conducted a consensus study involving 43 individuals from 10 countries, representing different stakeholders (patients, clinicians, methodologists, pharmaceutical industry) to determine core outcome domains for atopic eczema trials, to define quality criteria for atopic eczema outcome measures and to prioritize topics for atopic eczema outcomes research. Delegates were given evidence-based information, followed by structured group discussion and anonymous consensus voting. Consensus was achieved to include clinical signs, symptoms, long-term control of flares and quality of life into the core set of outcome domains for atopic eczema trials. The HOME initiative strongly recommends including and reporting these core outcome domains as primary or secondary endpoints in all future atopic eczema trials. Measures of these core outcome domains need to be valid, sensitive to change and feasible. Prioritized topics of the HOME initiative are the identification/development of the most appropriate instruments for the four core outcome domains. HOME is open to anyone with an interest in atopic eczema outcomes research.

WATER HOMEOSTASIS, FRAILTY AND COGNITIVE FUNCTION IN THE NURSING HOME

Objective: - To develop and test a practical clinical method to assess frailty in nursing homes; - To investigate the relationship between cognitive status of the elderly and the balance between water compartments of their body composition. Design and subjects: Cross-sectional study, conducted at two nursing homes in Boston-MA. Methods: Body mass and height (Ht) were evaluated to calculate BMI (body mass index, in Kg/m(2)). The cognitive decline was evaluated based on the scores obtained from the Mini-Mental State Examination (MMSE); The extracellular to total body water ratio (ECW/TBW) was calculated after the analysis of TBW from deuterium and tritium dilution and ECW from bromide dilution. Single-frequency BIA analysis data were investigated for resistance (R) and reactance (Xc), plotted in an R/Ht Xc/Ht graph (vectorial analysis-BIVA). The BIVA results of nursing home residents were compared against the data obtained from the NHANES Ill study. TBW and ECW values were compared with a group of free-living elderly volunteers. Results: The ECW/TBW was significantly higher in nursing home residents than in the free-living individuals. BIVA analysis showed significantly higher Xc/Ht values in the reference subjects. The MMSE did not present a significant correlation with ECW/TBW for either gender. Conclusion: We proposed the ECW/TBW ratio and BIVA as surrogate methods for the clinical assessment of frailty. We tested successfully both approaches with nursing home patients and free-living volunteers and compared them to a national data base. The advent of new, portable instruments will enable field tests to further validate our proposed "Frailty Factor" in future studies. We found no correlation between frailty and cognitive decline in the nursing home.

Marine biodiversity survey in the Northern Red Sea: a large-scale monitoring carried out in collaboration with volunteer divers

Concerns over global change and its effect on coral reef survivorship have highlighted the need for long-term datasets and proxy records, to interpret environmental trends and inform policymakers. Citizen science programs have showed to be a valid method for collecting data, reducing financial and time costs for institutions. This study is based on the elaboration of data collected by recreational divers and its main purpose is to evaluate changes in the state of coral reef biodiversity in the Red Sea over a long term period and validate the volunteer-based monitoring method. Volunteers recreational divers completed a questionnaire after each dive, recording the presence of 72 animal taxa and negative reef conditions. Comparisons were made between records from volunteers and independent records from a marine biologist who performed the same dive at the same time. A total of 500 volunteers were tested in 78 validation trials. Relative values of accuracy, reliability and similarity seem to be comparable to those performed by volunteer divers on precise transects in other projects, or in community-based terrestrial monitoring. 9301 recreational divers participated in the monitoring program, completing 23,059 survey questionnaires in a 5-year period. The volunteer-sightings-based index showed significant differences between the geographical areas. The area of Hurghada is distinguished by a medium-low biodiversity index, heavily damaged by a not controlled anthropic exploitation. Coral reefs along the Ras Mohammed National Park at Sharm el Sheikh, conversely showed high biodiversity index. The detected pattern seems to be correlated with the conservation measures adopted. In our experience and that of other research institutes, citizen science can integrate conventional methods and significantly reduce costs and time. Involving recreational divers we were able to build a large data set, covering a wide geographic area. The main limitation remains the difficulty of obtaining an homogeneous spatial sampling distribution.

State Pharmaceutical Assisstance for the Elderly and Disabled: Planning Issues for Program and Non-Program States

The Medicare Catastrophic Coverage Act (MCCA) would have mandated federal assistance for Medicare beneficiaries who have high annual prescription medication costs, High national expenditures for such drugs have encouraged the development of private and state insurance programs to help with these costs. Ten state pharmaceutical assistance programs (SPAPs), designed to help certain elderly, low income, or disabled people, exist for those ineligible for Medicaid or unable to purchase coverage privately. Coordination of state and federal benefits was a consideration for established programs, and programs being planned needed to determine the feasibity of integration of federal assistance. But the enactment and subsequent appeal of the Act affected both planning and policy implications for these SPAPs. All U.S. states and territories were surveyed before the bill's repeal to collect data on the effects of MCCA for those with prescription drug programs and those without. The repeal of the federal program places pressure on the nonprogram states to proceed, perhaps more cautiously, to initiate program; for their own residents, given increasing out-of-pocket and insurance costs, and no federal program.

The Provision and Use of Mental Health Services in Nursing Homes: Results from the National Medical Expenditure Survey

Data from the Institutional Population Component of the National Medical Expenditure Survey were used to provide national estimates of annual mental health service provision and use in nursing homes. In addition, the relationship between service provision and setting characteristics such as ownership, size, Medicaid certification, and chain status was examined. Although more than three quarters of residents with a mental disorder resided at a nursing home that provided counseling services, fewer than one fifth actually received any mental health services within the year.

Mental Health Services for Nursing Home Residents: What Will It Cost?

The Nursing Home Reform Act of 1987 requires nursing homes to provide basic mental health services for all residents and to give active mental health treatment, a set of specialized mental health services, to those residents who are admitted with a serious mental illness. This article examines the potential size of the nursing home population who will require mental health services, its demographic composition, and the facilities in which these individuals reside using the Institutional Population Component of the National Medical Expenditure Survey. Estimates of the potential costs of providing monthly psychotherapy and pharmacological management to this population in nursing homes indicate that the mandate will have significant financial effects on nursing facilities. Conclusions about how the requirements for maintaining the mental and psychosocial well-being of nursing home residents may affect the future of nursing home care and mental health care are considered.

Decision-Making Incapacity Among Nursing Home Residents: Results From the 1987 NMES Survey.

Recent legislative and regulatory developments have focused attention on older adults' capacity for involvement in health care decision-making. The Omnibus Budget Reconciliation Act of 1987 (OBRA 87) focused attention on the rights of nursing home residents to be involved in health care decision-making to the fullest extent possible. This article uses data from the 1987 National Medical Expenditure Survey (NMES) to examine rates of incapacity for health care decision-making among nursing home residents. Elements of the Oklahoma statute were used to operationalize decision-making incapacity: disability or disorder, difficulty in decision-making or communicating decisions, and functional disability. Fifty-three percent of nursing home residents had a combination of either physical or mental impairment and an impairment in either self-care or money management. The discussion focuses on the policy and practice implications of significant rates of incapacity among nursing home residents.

Governor Tom Judge: Early Years - The Path to Becoming Montana's 18th Governor -- Sidney Armstrong, Larry Pettit & Kent Kleinkopf “In the Crucible of Change”

The dramatic period of progressive change in Montana that is documented "In the Crucible of Change" series really exploded with the election of Governors Forrest Anderson and Tom Judge. Anderson's single term saw the dispatching of the sales tax as an issue for a long period, the reorganization of the executive branch of state government and the revision of Montana's Constitution. As a former legislator, county attorney, Supreme Court justice, and Attorney General, Anderson brought unmatched experience to the governorship when elected. Tom Judge, although much younger (elected MT’s youngest governor at age 38 immediately following Anderson), also brought serious experience to the governorship: six years as a MT State Representative, two years as a MT State Senator, four years is Lieutenant Governor and significant business experience. The campaign and election of John F. Kennedy in 1960 spurred other young Americans to service, including Tom Judge. First elected in 1960, he rose rapidly through MT’s political-governmental hierarchy until he took over the governorship in time to implement many of the changes started in Governor Anderson’s term. But as a strong progressive leader in his own right, Governor Judge sponsored and implemented significant advancements of his own for Montana. Those accomplishments, however, are the subject of other films in this series. This film deals with Tom Judge’s early years – his rise to the governorship from when he returned home after college at Notre Dame and newspaper experience in Kentucky to his actual election in November 1972. That story is discussed in this episode by three major players in the effort, all directly involved in Tom Judge’s early years and path to the governorship: Sidney Armstrong, Larry Pettit and Kent Kleinkopf. Their recollections of the early Tom Judge and the period of his advancement to the governorship provide an insider’s perspective of the growth of this significant leader of the important period of progressive change documented “In the Crucible of Change.” Sidney Armstrong, President of Sidney Armstrong Consulting, serves on the board and as the Executive Director of the Greater Montana Foundation. Formerly Executive Director of the Montana Community Foundation (MCF), she has served on national committees and participated in national foundation initiatives. While at MCF, she worked extensively with MT Governors Racicot and Martz on the state charitable endowment tax credit and other endowed philanthropy issues. A member of MT Governor Thomas L. Judge’s staff in the 1970s, she was also part of Governor Brian Schweitzer’s 2004 Transition Team, continuing to serve as a volunteer advisor during his term. In the 1980s, Sidney also worked for the MT State AFL-CIO and the MT Democratic Party as well as working two sessions with the MT Senate as Assistant Secretary of the Senate and aide to the President. A Helena native, and great granddaughter of pioneer Montanans, Sidney has served on numerous nonprofit boards, and is currently a board member for the Montana History Foundation. Recently she served on the board of the Holter Museum of Art and was a Governor’s appointee to the Humanities Montana board. She is a graduate of the International School of Geneva, Switzerland and the University of Montana. Armstrong's Irish maternal immigrant great-grandparents, Thomas and Maria Cahill Cooney, came to Virginia City, MT in a covered wagon in 1865, looking for gold. Eventually, they settled on the banks of the Missouri River outside Helena as ranchers. She also has roots in Butte, MT, where her journalist father's family, both of whom were newspaper people, lived. Her father, Richard K. O’Malley, is also the author of a well-known book about Butte, Mile High, Mile Deep, recently re-published by Russell Chatham. She is the mother of four and the grandmother of eight. Dr. Lawrence K. Pettit (Larry Pettit) (b. 5/2/1937) has had a dual career in politics and higher education. In addition to being Montana’s first Commissioner of Higher Education (the subject of another film in this series); Pettit, of Lewistown, served as legislative assistant to U.S. Senators James E. Murray and Lee Metcalf, campaign manager, head of transition team and assistant to Montana Governor Thomas L. Judge; taught political science at The Pennsylvania State University (main campus), was chair of political science at Montana State University, Deputy Commissioner for Academic Programs at the Texas Higher Education Coordinating Board, Chancellor of the University System of South Texas (since merged with Texas A&M University), President of Southern Illinois University, and President of Indiana University of Pennsylvania from where he retired in 2003. He has served as chair of the Commission on Leadership for the American Council on Education, president of the National Association of (University) System Heads, and on many national and state boards and commissions in higher education. Pettit is author of “If You Live by the Sword: Politics in the Making and Unmaking of a University President.” More about Pettit is found at http://www.lawrencekpettit.com… Kent Kleinkopf of Missoula is co-founder of a firm with a national scope of business that specializes in litigation consultation, expert vocational testimony, and employee assistance programs. His partner (and wife of 45 years) Kathy, is an expert witness in the 27 year old business. Kent received a BA in History/Education from the University of Idaho and an MA in Economics from the University of Utah. The Kleinkopfs moved to Helena, MT in 1971 where he was Assistant to the Commissioner of State Lands (later Governor) Ted Schwinden. In early 1972 Kent volunteered full time in Lt. Governor Tom Judge’s campaign for Governor, driving the Lt. Governor extensively throughout Montana. After Judge was elected governor, Kent briefly joined the staff of Governor Forrest Anderson, then in 1973 transitioned to Judge’s Governor’s Office staff, where he became Montana’s first “Citizens’ Advocate.” In that capacity he fielded requests for assistance from citizens with concerns and information regarding State Agencies. While on the Governor’s staff, Kent continued as a travel aide with the governor both in Montana and nationally. In 1977 Kent was appointed Director of the MT Department of Business Regulation. That role included responsibility as Superintendent of Banking and Chairman of the State Banking Board, where Kent presided over the chartering of many banks, savings and loans, and credit unions. In 1981 the Kleinkopfs moved to Missoula and went into the business they run today. Kent was appointed by Governor Brian Schweitzer to the Board of the Montana Historical Society in 2006, was reappointed and continues to serve. Kathy and Kent have a daughter and son-in-law in Missoula.

Home-based training to improve manual dexterity in patients with multiple sclerosis: A randomized controlled trial.

BACKGROUND Impaired manual dexterity is frequent and disabling in patients with multiple sclerosis (MS), affecting activities of daily living (ADL) and quality of life. OBJECTIVE We aimed to evaluate the effectiveness of a standardized, home-based training program to improve manual dexterity and dexterity-related ADL in MS patients. METHODS This was a randomized, rater-blinded controlled trial. Thirty-nine MS patients acknowledging impaired manual dexterity and having a pathological Coin Rotation Task (CRT), Nine Hole Peg Test (9HPT) or both were randomized 1:1 into two standardized training programs, the dexterity training program and the theraband training program. Patients trained five days per week in both programs over a period of 4 weeks. Primary outcome measures performed at baseline and after 4 weeks were the CRT, 9HPT and a dexterous-related ADL questionnaire. Secondary outcome measures were the Chedoke Arm and Hand Activity Inventory (CAHAI-8) and the JAMAR test. RESULTS The dexterity training program resulted in significant improvements in almost all outcome measures at study end compared with baseline. The theraband training program resulted in mostly non-significant improvements. CONCLUSION The home-based dexterity training program significantly improved manual dexterity and dexterity-related ADL in moderately disabled MS patients. Trial Registration NCT01507636.

Discrimination in Metropolitan Housing Markets: National Results from Phase 1 of the Housing Discrimination Study (HDS)

The Housing Discrimination Study 2000 (HDS 2000) is the third nationwide effort sponsored by HUD to measure the amount of discrimination faced by minority home seekers. This report provides national estimates of discrimination faced by African Americans and Hispanics in 2000 as they searched for housing in the sales and rental markets. It also provides an accurate measure of how housing discrimination has changed since 1989. The report shows large decreases between 1989 and 2000 in the level of discrimination experienced by Hispanics and African Americans seeking to a buy a home. There are, however, worrisome upward trends of discrimination in the areas of geographic steering in home sales for African Americans and the amount of help agents provide to Hispanics with obtaining financing. There has also been a modest decrease in discrimination toward African Americans seeking to rent a unit. This downward trend, however, has not been seen for Hispanic renters. Hispanic renters now are more likely to experience discrimination in their housing search than do African American renters.