Can i have a second child? dilemmas of mothers of children with pervasive developmental disorder: a qualitative study

<p>Abstract</p> <p>Background</p> <p>Pervasive developmental disorder (PDD) has an uncertain etiology, no method of treatment, and results in communication deficiencies and other behavioral problems. As the reported recurrence risk is 5%-10% and there are no methods of either prevention or prenatal testing, mothers of PDD children may face unique challenges when contemplating second pregnancies. The purpose of this study was to explore the mothers' lived experiences of second child-related decision-making after the birth of a child with PDD.</p> <p>Methods</p> <p>The participants for this study were restricted to mothers living within the greater Tokyo metropolitan area who had given birth to a first child with PDD within the past 18 years. The ten participants were encouraged to describe their experiences of second-child related decision-making after the birth of a child with PDD on the basis of semi-structured interviews. Data analysis was performed by using Interpretive Phenomenological Analysis (IPA), which is concerned with understanding what the participant thinks or believes about the topic under discussion.</p> <p>Results</p> <p>We identified two superordinate themes. The first was balancing hopes and fears, in which hope was the potential joy to be gained by the birth of a new child without PDD and fears were characterized as uncertainty of PDD and perception of recurrence risk, burden on later-born children, and negative effects on a child with PDD.</p> <p>The second superordinate theme was assessing the manageability of the situation, which was affected by factors as diverse as severity of PDD, relationship between mother and father, and social support and acceptance for PDD. Our 10 participants suffered from extreme psychological conflict, and lack of social support and acceptance for PDD created numerous practical difficulties in having second children.</p> <p>Conclusions</p> <p>Our participants faced various difficulties when considering second pregnancies after the birth of children with PDD in the Japanese society. As lack of social support and acceptance for PDD also played a large role in second child-related decision-making, creating a social environment that more fully accepts those disabled and providing flexible support systems for families of children with PDD are crucial.</p

Self-help groups challenge health care systems in the US and UK

Purpose: This research considers how self-help groups (SHGs) and self- help organizations (SHOs) contribute to consumerist trends in two different societies: United States and United Kingdom. How do the health care systems and the voluntary sectors affect the kinds of social changes that SHGs/SHOs make? Methodology/approach: A review of research on the role of SHGs/SHOs in contributing to national health social movements in the UK and US was made. Case studies of the UK and the US compare the characteristics of their health care systems and their voluntary sector. Research reviews of two community level self-help groups in each country describe the kinds of social changes they made. Findings: The research review verified that SHGs/SHOs contribute to national level health social movements for patient consumerism. The case studies showed that community level SHGs/SHOs successfully made the same social changes but on a smaller scale as the national movements, and the health care system affects the kinds of community changes made. Research limitations: A limited number of SHGs/SHOs within only two societies were studied. Additional SHGs/SHOs within a variety of societies need to be studied. Originality/value of chapter Community SHGs/SHOs are often trivialized by social scientists as just inward-oriented support groups, but this chapter shows that local groups contribute to patient consumerism and social changes but in ways that depend on the kind of health care system and societal context

Population weighted raster maps can communicate findings of social audits: examples from three continents

<p>Abstract</p> <p>Background</p> <p>Maps can portray trends, patterns, and spatial differences that might be overlooked in tabular data and are now widely used in health research. Little has been reported about the process of using maps to communicate epidemiological findings.</p> <p>Method</p> <p>Population weighted raster maps show colour changes over the study area. Similar to the rasters of barometric pressure in a weather map, data are the health occurrence – a peak on the map represents a higher value of the indicator in question. The population relevance of each sentinel site, as determined in the stratified last stage random sample, combines with geography (inverse-distance weighting) to provide a population-weighted extension of each colour. This transforms the map to show population space rather than simply geographic space.</p> <p>Results</p> <p>Maps allowed discussion of strategies to reduce violence against women in a context of political <it>sensitivity</it> about quoting summary indicator figures. <it>Time-series maps</it> showed planners how experiences of health services had deteriorated despite a reform programme; where in a country HIV risk behaviours were improving; and how knowledge of an economic development programme quickly fell off across a region. <it>Change maps</it> highlighted where indicators were improving and where they were deteriorating. Maps of <it>potential impact of interventions</it>, based on multivariate modelling, displayed how partial and full implementation of programmes could improve outcomes across a country. <it>Scale</it> depends on context. To support local planning, district maps or local government authority maps of health indicators were more useful than national maps; but multinational maps of outcomes were more useful for regional institutions. Mapping was useful to illustrate in which districts enrolment in religious schools – a <it>rare occurrence</it> - was more prevalent.</p> <p>Conclusions</p> <p>Population weighted raster maps can present social audit findings in an accessible and compelling way, increasing the use of evidence by planners with limited numeracy skills or little time to look at evidence. Maps complement epidemiological analysis, but they are not a substitute. Much less do they substitute for rigorous epidemiological designs, like randomised controlled trials.</p

Disability activism and the politics of scale

In this paper, we examine the role of spatial scale in mediating and shaping political struggles between disabled people and the state. Specifically, we draw on recent theoretical developments concerning the social construction of spatial scale to interpret two case studies of disability activism within Canada and Ireland. In particular, we provide an analysis of how successful the disability movement in each locale has been at 'jumping scale' and enacting change, as well as examining what the consequences of such scaling-up have been for the movement itself. We demonstrate that the political structures operating in each country markedly affect the scaled nature of disability issues and the effectiveness of political mobilization at different scales

A systematic review on integration mechanisms in human and animal health surveillance systems with a view to addressing global health security threats

Lymphatic filariasis and onchocerciasis are neglected tropical diseases (NTDs) targeted for elimination by mass (antifilarial) drug administration. These drugs are predominantly active against the microfilarial progeny of adult worms. New drugs or combinations are needed to improve patient therapy and to enhance the effectiveness of interventions in persistent hotspots of transmission. Several therapies and regimens are currently in (pre-)clinical testing. Clinical trial simulators (CTSs) project patient outcomes to inform the design of clinical trials but have not been widely applied to NTDs, where their resource-saving payoffs could be highly beneficial. We demonstrate the utility of CTSs using our individual-based onchocerciasis transmission model (EPIONCHO-IBM) that projects trial outcomes of a hypothetical macrofilaricidal drug. We identify key design decisions that influence the power of clinical trials, including participant eligibility criteria and post-treatment follow-up times for measuring infection indicators. We discuss how CTSs help to inform target product profiles