Go to Fight! parents' experiences in caring for their disabled child / Ir à Luta! vivências dos pais nos cuidados do filho com deficiência

The objective was to understand the experience of parents in caring for children with disabilities. The Grounded Theory was adopted as a methodological framework, 9 parents of children and adults with intellectual or multiple disabilities were interviewed, between August/2015 and June/2016. The categories were obtained: Pre, peri, post-natal aspects, Posture assumed by the professional, Go to Fight! and Another world. It is, therefore, a parenting that is configured as these parents enter the Another world, which leads them to adjust their practices and beliefs about their child, about themselves and the universe of disability, sometimes under a perception of disability as a social disadvantage and incapacity, having as an intervening factor the Posture assumed by the professional, thus knowing these experiences from the GT allows: the improvement of care practices for these parents and their children, the planning of actions psychoeducational from a social perspective of disability in order to empower them and guide them about aspects of their children's development, enabling a look beyond the diagnosis and a more positive family adaptation.

Relative environmental and social disadvantage in patients with idiopathic pulmonary fibrosis

BackgroundAir pollution exposure is associated with disease severity, progression and mortality in patients with idiopathic pulmonary fibrosis (IPF). Combined impacts of environmental and socioeconomic factors on outcomes in patients with IPF are unknown. The objectives of this study were to characterise the relationships between relative environmental and social disadvantage with clinical outcomes in patients with IPF.MethodsPatients with IPF were identified from a longitudinal database at University of California, San Francisco. Residential addresses were geocoded and linked to the CalEnviroScreen 3.0 (CES), a tool that quantifies environmental burden in California communities, combining population, environmental and pollution vulnerability into individual and composite scores (higher scores indicating greater disadvantage). Unadjusted and adjusted linear and logistic regression and Fine and Gray proportional hazards models were used.Results603 patients were included. Higher CES was associated with lower baseline forced vital capacity (β=−0.073, 95% CI −0.13 to −0.02; p=0.006) and diffusion capacity of the lung for carbon monoxide (β=−0.11, 95% CI −0.16 to −0.06; p<0.001). Patients in the highest population vulnerability quartile were less likely to be on antifibrotic therapy (OR=0.33; 95% CI 0.18 to 0.60; p=0.001) at time of enrolment, compared with those in the lowest quartile. An association between CES and mortality was suggested, but sensitivity analyses demonstrated inconsistent results. Relative disadvantage of the study cohort appeared lower compared with the general population.ConclusionsHigher environmental exposures and vulnerability were associated with lower baseline lung function and lower antifibrotic use, suggesting that relative socioenvironmental disadvantage has meaningful impacts on patients with IPF.

Prenatal Exposure to Early Life Adversity and Neonatal Brain Volumes at Birth

Importance: Exposure to early life adversity alters the structural development of key brain regions underlying neurodevelopmental impairments. The extent that prenatal exposure to life adversity alters structure at birth remains poorly understood. Objective: To determine if prenatal exposure to maternal social advantage and psychosocial distress alters global and regional brain volumes and cortical folding in the first weeks of life. Design: A prospective, longitudinal study of sociodemographically-diverse mothers recruited in the first trimester of pregnancy and their infants who underwent brain magnetic resonance imaging scan in the first weeks of life. Setting: Mothers were recruited from local obstetric clinics from 2017-2020. Participants: Of 399 mother-infant dyads prospectively recruited into the parent study, 280 healthy, term-born infants (47% female, mean postmenstrual age at scan 42 weeks) were eligible for inclusion. Exposures: Maternal social advantage and psychosocial distress in pregnancy. Main Measures and Outcomes: Two measures of latent constructs were created using Confirmatory Factor Analyses spanning Maternal Social Advantage (Income to Needs ratio, Area Deprivation Index, Healthy Eating Index, education level, insurance status) and Psychosocial Stress (Perceived Stress Scale, Edinburgh Postnatal Depression Scale, Everyday Discrimination Scale, Stress and Adversity Inventory). Neonatal cortical and subcortical gray matter, white matter, cerebellar, hippocampus, and amygdala volumes were generated using semi-automated age-specific segmentation pipelines. Results: After covariate adjustment and multiple comparisons correction, greater social disadvantage (i.e., lower Advantage values) was associated with reduced cortical gray matter (p=.03), subcortical gray matter (p=.008), and white matter (p=.004) volumes and cortical folding (p=.001). Psychosocial Stress was not related to neonatal brain metrics. While social disadvantage was associated with smaller absolute volumes of the bilateral hippocampi and amygdalae, after correcting for total brain volume, there were no regional effects. Conclusions and Relevance: Prenatal exposure to social disadvantage is associated with global reductions in brain volumes and cortical folding at birth. No regional specificity for the hippocampus or amygdala was detected. Results highlight that the deleterious effects of poverty begin in utero and are evident in the first weeks of life. These findings emphasize that preventative interventions to support fetal brain development should address socioeconomic hardships for expectant parents.

A Mana Wahine Critical Analysis of New Zealand Legislation Concerning Education: Implications for Addressing Māori Social Disadvantage

<p>Theory and practice are intertwined, woven inextricably together by the way that each informs and is informed by the other (Moss 2002, Pihama 2001, Simmonds 2009). This research confronts and analyses the legal bases of gendered and race-based inequalities by critically analysing New Zealand social policy legislation through a mana wahine perspective. Mana wahine and critical policy analysis share common goals to challenge dominant theoretical and methodological norms in order to recognise unequal power distributions, of which colonisation is implicit (Tomlins-Jahnke 1997). This research has been guided by a reading of literature that suggests Māori social disadvantage has become ingrained and that policies designed to address this inequality and to include Māori people and Māori perspectives in mainstreamed systems are both confusing, and yet to be successful. This study has been designed to explore present policy legislation concerning social development. A case study of the education system has been used, which draws on historic and more contemporary Western political agendas as reflected in legislative shifts. Key findings of this research include the exclusion of mana wahine through the ongoing processes of colonisation that do not give rise to Māori cultural understandings. To summarise, the social policy context at present is characterised by: Māori demands for greater self-determination; an absence of Treaty rights for Māori; liberal interpretations of Treaty principles, and scant processes to implement them; a devoid of aspects pertinent to mana wahine, and; the contradiction between Government's articulated position on rights and inclusion in social policy and the language used in and concepts enforced by legislation. The findings are significant and reveal the ongoing complexities of Indigenous inequalities in the context of widespread policy ‘commitment’ to inclusion and equality. The central argument developed throughout this study is that there is an urgent need to shift policy thinking toward Māori if there is to be a significant movement toward justice for Māori women, which will involve Māori-centred decolonisation and the inclusion of aspects pertinent to mana wahine.</p>

A Mana Wahine Critical Analysis of New Zealand Legislation Concerning Education: Implications for Addressing Māori Social Disadvantage

<p>Theory and practice are intertwined, woven inextricably together by the way that each informs and is informed by the other (Moss 2002, Pihama 2001, Simmonds 2009). This research confronts and analyses the legal bases of gendered and race-based inequalities by critically analysing New Zealand social policy legislation through a mana wahine perspective. Mana wahine and critical policy analysis share common goals to challenge dominant theoretical and methodological norms in order to recognise unequal power distributions, of which colonisation is implicit (Tomlins-Jahnke 1997). This research has been guided by a reading of literature that suggests Māori social disadvantage has become ingrained and that policies designed to address this inequality and to include Māori people and Māori perspectives in mainstreamed systems are both confusing, and yet to be successful. This study has been designed to explore present policy legislation concerning social development. A case study of the education system has been used, which draws on historic and more contemporary Western political agendas as reflected in legislative shifts. Key findings of this research include the exclusion of mana wahine through the ongoing processes of colonisation that do not give rise to Māori cultural understandings. To summarise, the social policy context at present is characterised by: Māori demands for greater self-determination; an absence of Treaty rights for Māori; liberal interpretations of Treaty principles, and scant processes to implement them; a devoid of aspects pertinent to mana wahine, and; the contradiction between Government's articulated position on rights and inclusion in social policy and the language used in and concepts enforced by legislation. The findings are significant and reveal the ongoing complexities of Indigenous inequalities in the context of widespread policy ‘commitment’ to inclusion and equality. The central argument developed throughout this study is that there is an urgent need to shift policy thinking toward Māori if there is to be a significant movement toward justice for Māori women, which will involve Māori-centred decolonisation and the inclusion of aspects pertinent to mana wahine.</p>

‘It’s a Gendered Issue, 100 Per Cent’: How Tough Bail Laws Entrench Gender and Racial Inequality and Social Disadvantage

Women’s rates of remand, or pre-trial detention, have grown dramatically in Australia and the rates at which Aboriginal and Torres Strait Islander women are incarcerated without conviction are particularly high. However, there is little research examining bail and remand practices and their relationship to social inequalities. This article presents findings from research on the drivers behind women’s increasing rates of custodial remand in Victoria—a jurisdiction that has significantly restricted access to bail through legislative reforms. Drawing on data derived from interviews with criminal defence and duty lawyers, we outline how bail and remand practices systematically disadvantage women experiencing housing insecurity and domestic and family violence (DFV), increasing their risk of becoming trapped in longer-term cycles of incarceration. Our analysis reinforces the need to move away from ‘tough on crime’ approaches to bail. It also highlights unintended consequences of DFV reforms, including further marginalising and punishing criminalised women who are victim-survivors.