Critical, issues and needs in management of primary immunodeficiency diseases in Latin America

Experts from six Latin American countries met to discuss critical issues and needs in the diagnosis and management of primary immunodeficiency diseases (PIDD). The diagnosis of PIDD is generally made following referral to an immunology centre located in a major city, but many paediatricians and general practitioners are not sufficiently trained to suspect PIDD in the first place. Access to laboratory testing is generally limited, and only some screening tests are typically covered by government health programmes. Specialised diagnostic tests are generally not reimbursed. Access to treatment varies by country reflecting differences in healthcare systems and reimbursement policies. An online PIDD Registry Programme for Latin America has been available since 2009, which will provide information about PIDD epidemiology in the region. Additional collaboration across countries appears feasible in at least two areas: a laboratory network to facilitate the diagnosis of PIDD, and educational programmes to improve PIDD awareness. In total, these collaborations should make it possible to advance the diagnosis and management of PIDD in Latin America. (C) 2010 SEICAP. Published by Elsevier Espana, S.L. All rights reserved.

Community College Student and Faculty Information Needs and Information Seeking: an Ethnographic Study

This presentation was offered as part of the CUNY Library Assessment Conference, Reinventing Libraries: Reinventing Assessment, held at the City University of New York in June 2014.

Who Should do What to Whom? : Occupational Groups´Views on Special Needs

The overall aim of this thesis is to increase our knowledge of different occupational groups´ views on work with children in need of special support. This is explored in four separate studies. The first study investigates the views of occupational groups in preschools and schools in one municipality. A questionnaire was handed out to all personnel (N=1297) in the municipality in 2008 (72.5 % response rate). The second study explores the views of educational leaders (N=45) in the same municipality. Questionnaire # 2 was distributed in 2009. All the educational leaders responded to the questionnaire. The third study describes the views of different occupational groups concerning special educational needs coordinators´ (SENCOs) role and work. This was highlighted by comparing responses from questionnaire #1 and # 2. Responses concerning SENCOs´ work were also added using a third questionnaire. This questionnaire was handed out in 2006 to chief education officers (N=290) in all municipalities in Sweden. The response rate was 90.3%. Finally, the fourth study presents five head teachers´ descriptions of their work with special needs issues. Study four was a follow-up study of questionnaire # 2. These head teachers were selected because of their inclusive values and because they seemed to be effective according to certain criteria. They were interviewed in January 2012. The results reveal a number of interesting findings. For example, there are both similar and different views among the occupational groups concerning work with children in need of special support. A majority of the respondents in all groups state that children´s individual deficiencies is one common reason why children need special support in preschools/schools. Differences between the occupational groups become especially visible regarding their views of SENCOs‟ work. Critical pragmatism (Cherryholmes, 1988) is applied as a theoretical point of departure. Skrtic´s (1991) critical reading and analysis of special education relative to general education is specifically used to interpret and discuss the outcome of the studies. Additionally, Abbott´s (1988) reasoning concerning the “division of expert labor” is used to discuss the occupational groups´ replies concerning “who should do what to whom”. The findings in the studies are contextualized and theoretically interpreted in the separate articles. However in the first part of this thesis (in Swedish: Kappa), the theoretical interpretations of the empirical outcome are discussed in more detail and the results are further contextualized and synthesised. Inclusion and premises for inclusive education are also discussed in more depth in the first part of the present thesis.

Pregnant Adolescents in Vietnam : Social context and health care needs

Background: The number of childbearing adolescents in Vietnam is relatively low but they are more prone to experience adverse outcome than adult women. Reports of increasing rates of abortion and prevalence of STIs including HIV among youth indicate a need to improve services and counselling for these groups. Midwives are key persons in the promotion of young people’s sexual and reproductive health in Vietnam. Aim: The overall aim of this thesis is to describe the prevalence and outcome of adolescent pregnancies in Vietnam (I), to explore the social context and health care seeking behavior of pregnant adolescents (II), as well as to explore the perspectives of health care providers and midwifery students regarding adolescent sexuality and reproductive health service needs (III, IV). Methods: The studies were conducted from 2002 to 2005, combining qualitative and quantitative research methods. A population based prospective survey was used to estimate rates and outcomes of adolescent pregnancies (I). Pregnant and newly delivered adolescents’ experiences of childbearing and their encounters with health care providers were studied using qualitative interviews (II). Health care providers’ perspective on adolescent sexual and reproductive health (ASRH) and views on how to improve the quality of abortion care was explored in focus group discussions (FGD). The values and attitudes of midwifery students about ASRH were investigated using questionnaires and interviews (IV). Descriptive statistics was used to analyse quantitative data (I, IV) and content analysis were applied for qualitative data (II, III, and IV). Findings: Adolescent birth rate was similar to previously reported in Vietnam but lower when compared to other Asian countries. The incidence of stillborn among adolescents was higher than for women in higher reproductive ages. The proportion of preterm deliveries was 20 % of all births, higher than previous findings from Vietnam. About 2 % of the deliveries were home deliveries, more common among women with low education, belonging to ethnic minority and/or living in mountainous areas (I). Ambivalence facing motherhood, pride and happiness but also worries and lack of self-confidence emerged as themes from the interviews; and experience of ‘being in the hands of others’ in a positive, caring sense but also in a sense of subordination in relation to husband, family and health care providers (II). Health care providers at abortion clinics and midwifery students generally disapproved of pre-marital sex, but had a pragmatic view on the need for contraceptive services and counselling to reduce the burden of unwanted pregnancies and abortions for young women. Providers and midwifery students expressed a need for training on ASRH issues (III, IV). Conclusion: Cultural norms and gender inequity make pregnant adolescent women in Vietnam vulnerable to sexual and reproductive health risks. Health care providers experience ethical dilemmas while counselling unmarried adolescents who come for abortion and this has a negative impact on the quality of care. Integrated ASRH in education and training programmes for health care providers, including midwives, as well as continued in-service training on these issues are suggested to improve reproductive health care services in Vietnam.

What aspects of rehabilitation provision contribute to self-reported met needs for rehabilitation one year after stroke - amount, place, operator or timing?

BACKGROUND AND OBJECTIVE: To a large extent, people who have suffered a stroke report unmet needs for rehabilitation. The purpose of this study was to explore aspects of rehabilitation provision that potentially contribute to self-reported met needs for rehabilitation 12 months after stroke with consideration also to severity of stroke. METHODS: The participants (n = 173) received care at the stroke units at the Karolinska University Hospital, Sweden. Using a questionnaire, the dependent variable, self-reported met needs for rehabilitation, was collected at 12 months after stroke. The independent variables were four aspects of rehabilitation provision based on data retrieved from registers and structured according to four aspects: amount of rehabilitation, service level (day care rehabilitation, primary care rehabilitation and home-based rehabilitation), operator level (physiotherapist, occupational therapist, speech therapist) and time after stroke onset. Multivariate logistic regression analyses regarding the aspects of rehabilitation were performed for the participants who were divided into three groups based on stroke severity at onset. RESULTS: Participants with moderate/severe stroke who had seen a physiotherapist at least once during each of the 1st, 2nd and 3rd-4th quarters of the first year (OR 8.36, CI 1.40-49.88 P = 0.020) were more likely to report met rehabilitation needs. CONCLUSION: For people with moderate/severe stroke, continuity in rehabilitation (preferably physiotherapy) during the first year after stroke seems to be associated with self-reported met needs for rehabilitation.

Why Critical Whiteness Studies needs to think about warfare

Sociologisk Forsknings digitala arkiv

Shared decision-making in mental health care : a user perspective on decisional needs in community-based services

BACKGROUND: Shared decision-making (SDM) is an emergent research topic in the field of mental health care and is considered to be a central component of a recovery-oriented system. Despite the evidence suggesting the benefits of this change in the power relationship between users and practitioners, the method has not been widely implemented in clinical practice. OBJECTIVE: The objective of this study was to investigate decisional and information needs among users with mental illness as a prerequisite for the development of a decision support tool aimed at supporting SDM in community-based mental health services in Sweden. METHODS: Three semi-structured focus group interviews were conducted with 22 adult users with mental illness. The transcribed interviews were analyzed using a directed content analysis. This method was used to develop an in-depth understanding of the decisional process as well as to validate and conceptually extend Elwyn et al.'s model of SDM. RESULTS: The model Elwyn et al. have created for SDM in somatic care fits well for mental health services, both in terms of process and content. However, the results also suggest an extension of the model because decisions related to mental illness are often complex and involve a number of life domains. Issues related to social context and individual recovery point to the need for a preparation phase focused on establishing cooperation and mutual understanding as well as a clear follow-up phase that allows for feedback and adjustments to the decision-making process. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The current study contributes to a deeper understanding of decisional and information needs among users of community-based mental health services that may reduce barriers to participation in decision-making. The results also shed light on attitudinal, relationship-based, and cognitive factors that are important to consider in adapting SDM in the mental health system.

Parenthood in transition : Somali-born parents' experiences of and needs for parenting support programmes

BACKGROUND: Pre- and post-migration trauma due to forced migration may impact negatively on parents' ability to care for their children. Little qualitative work has examined Somali-born refugees' experiences. The aim of this study is to explore Somali-born refugees' experiences and challenges of being parents in Sweden, and the support they need in their parenting. METHODS: A qualitative descriptive study was undertaken. Data were collected from four focus group discussions (FGDs) among 23 Somali-born mothers and fathers living in a county in central Sweden. Qualitative content analysis has been applied. RESULTS: A main category, Parenthood in Transition, emerged as a description of a process of parenthood in transition. Two generic categories were identified: Challenges, and Improved parenting. Challenges emerged from leaving the home country and being new and feeling alienated in the new country. In Improved parenting, an awareness of opportunities in the new country and ways to improve their parenting was described, which includes how to improve their communication and relationship with their children. The parents described a need for information on how to culturally adapt their parenting and obtain support from the authorities. CONCLUSIONS: Parents experienced a process of parenthood in transition. They were looking to the future and for ways to improve their parenting. Schools and social services can overcome barriers that prevent lack of knowledge about the new country's systems related to parenthood. Leaving the home country often means separation from the family and losing the social network. We suggest that staff in schools and social services offer parent training classes for these parents throughout their children's childhood, with benefits for the child and family.

Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke : an explorative observational study

BACKGROUND: People who have suffered a stroke commonly report unfulfilled need for rehabilitation. Using a model of patient satisfaction, we examined characteristics in individuals that at 3 months after stroke predicted, or at 12 months were associated with unmet need for rehabilitation or dissatisfaction with health care services at 12 months after stroke. METHODS: The participants (n = 175) received care at the stroke units at the Karolinska University Hospital, Sweden. The dependent variables "unfulfilled needs for rehabilitation" and "dissatisfaction with care" were collected using a questionnaire. Stroke severity, domains of the Stroke Impact Scale (SIS), the Sense of Coherence scale (SOC) and socio demographic factors were used as independent variables in four logistic regression analyses. RESULTS: Unfulfilled needs for rehabilitation at 12 months were predicted by strength (SIS) (odds ratio (OR) 7.05) at three months, and associated with hand function (SIS) (OR 4.38) and poor self-rated recovery (SIS) (OR 2.46) at 12 months. Dissatisfaction with care was predicted by SOC (OR 4.18) and participation (SIS) (OR 3.78), and associated with SOC (OR 3.63) and strength (SIS) (OR 3.08). CONCLUSIONS: Thirty-three percent of the participants reported unmet needs for rehabilitation and fourteen percent were dissatisfied with the care received. In order to attend to rehabilitation needs when they arise, rehabilitation services may need to be more flexible in terms of when rehabilitation is provided. Long term services with scheduled re-assessments and with more emphasis on understanding the experiences of both the patients and their social networks might better be able to provide services that attend to patients' needs and aid peoples' reorientation; this would apply particularly to those with poor coping capacity.

Art in the inclusion of children with special needs in dentistry

A proposta deste estudo é relatar a utilização da arte e seus segmentos, como recurso para inclusão da criança portadora de necessidades especiais ao ambiente odontológico. Foi utilizado como método a aplicação da arte em atividades de socioterapia e oficinas, divididas em módulos: sessão de socialização, oficinas de arte e atividades complementares, visando à elaboração de uma anamnese cultural por meio de questionários e a obtenção das preferências artísticas dos 313 participantes, previamente às suas assistências odontológicas no CAOE (Centro de Assistência Odontológica a Portadores de Necessidades Especiais) FOA/Unesp. de acordo com os questionários respondidos, a música e a pintura, segundo a preferência dos participantes, são os segmentos artísticos que mais auxiliam nas atividades de inclusão e adaptação. Concluímos que a utilização da arte na adaptação e inclusão ambiental do paciente, previamente à assistência odontológica, é favorável e eficaz.

A morphological view of the relationship between indirect flight muscle maturation and the flying needs of two species of advanced eusocial bees

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

WATER NEEDS FOR WINTER BEAN CROP

Um estudo sobre o uso de água do feijoeiro de inverno (Phaseolus vulgaris L. cv. Carioca) foi realizado num solo Latossol Vermelho Amarelo de textura argilosa. Um sistema de sulcos de infiltração foi usado para proceder a irrigação com o intuito de manter o solo em potenciais de água superiores a -40,0 KPa. Duas doses de aplicação de N em cobertura (0 a 30 Kg N/ha) foram colocados 25 dias após o plantio. Os principais objetivos do estudo foram: avaliar a interação entre as duas doses de N com a evapotranspiração e medir os coeficientes de cultura (Kc). A evapotranspiração média máxima (ETm) foi 1,71 mm/dia, ou 157,16 mm nos 92 dias de observações; os valores de ETm para as fases vegetativa (1), florescimento (2) e formação de vagens (3) foram 1,48; 2,35 e 1,50 mm/dia, respectivamente, para a dose de 30 Kg/ha e 1,48, 1,88 e 1,45 mm/dia para o tratamento sem aplicação de N em cobertura. Os coeficientes de cultura (Kc = ETm/ETo) foram 0,62 e 0,78 para a fase 1, 0,80 e 1,10 para a 2, 0,45 e 0,55 para a 3 e 0,61 e 0,80 para o ciclo todo, respectivamente, baseados no método de FAO-Penman e do Tanque Classe A. Este mostrou melhores resultados para estimar o máximo uso de água pelo feijoeiro de inverno. Os tratamentos de N não afetaram a evapotranspiração significativamente. Entretanto, a evapotranspiração, medida pelo método do balanço de água, foi 59,78 e 27,12% maior no estágio do florescimento que no estádio vegetativo, respectivamente, nas doses de 30 e 0 Kg N/ha.