“If she wanted to go to Hawaii, then yeah... I want her to live life as much as I can.” Families with Learning-Disabled Children: Exerting Choice and Control For Quality of Life.

The enactment of The Children and Families Act in 2014 represented a significant attempt to create equity for disabled children in England; supporting special educational needs and disabilities (SEND); and promoting family rights to choice and control. This thesis explores the impact of this and other legislation, policies and professional systems on the experiences of disability; specifically for learning disabled-children with complex support needs and their families. It investigates whether families believe they can exercise sufficient choice and control when working with professional agencies to achieve a good quality of life. It also explores whether disability activism founded in theoretical perspectives about embodied disability have been able to challenge successfully societal barriers in progressing the rights of learning-disabled children. Using a social constructionist framework, this qualitative study investigates how families navigate complex professional systems to obtain support to achieve independence, agency and a good quality of life for their learning-disabled children. Family narratives are explored to understand family lifeworld and experiences of, and perspectives on relationships with professionals within the system. Data is analysed using the UK Government wellbeing framework and Nussbaum’s central capabilites framework. Analyses of individual Education Health and Care Plans are undertaken to analyse whether they support the best possible outcomes for children. Additionally, the impact of societal constructs of childhood, parenthood and disability are considered. The findings evidence some good, compassionate professional practice, but suggest that families may lack opportunities for co-production with professionals. Families did not believe that they have sufficient choice and control in working with professionals. Consequently, they have learned to develop strategies to better influence the quality of life outcomes they seek. Findings also point towards an increasing dominance of the SEND system within England. This has shifted focus to education outcomes rather than social outcomes; possibly disadvantaging learning-disabled children with complex support needs. Family narratives additionally provide evidence that, despite the rhetoric of human rights legislation and policies, learning-disabled children experience disability discrimination and ableism within professional and societal contexts. Highlighted is how disability theories have been mostly developed in an adult context which does not sufficiently recognise the lack of agency afforded by society to children, or the symbiotic nature of child/parent relationships. To begin to address this, a preliminary child and family disability contextual framework is offered. It is suggested that this provides the basis for future work to build a model that provides understanding of disability in the context of childhood, parenthood and family

Outcomes following childhood head injury : a population study

Objectives: To identify outcomes following head injury (HI) amongst a population of children admitted to one hospital centre and compare outcomes between different severity groups. Methods:A postal follow-up of children admitted with HI to one NHS Trust, between 1992-1998, was carried out. Children were aged 5-15 years at injury (mean 9.8), followed-up at a mean of 2.2 years post-injury. Parents of 526 injured children (419 mild, 58 moderate, 49 severe) and 45 controls completed questionnaires. Outcomes were assessed using the King’s Outcome Scale for Childhood Head Injury (KOSCHI). Results:Frequent behavioural, emotional, memory and attentional problems were reported by one third of the severe group, one quarter of the moderate, and 10-18% of the mild. Personality change since HI was reported for 148 children (28%) (21% mild HI, 46% moderate, 69% severe). There was a significant relationship between injury severity and KOSCHI outcomes. Following the HI, 252(48%) had moderate disability (43% mild HI, 64% moderate, 69% severe), 270(51%) made a good recovery (57% mild HI, 36% moderate, 22% severe). There was a significant association between social deprivation and poor outcome (p=0.002). Only 30%(158) of children received hospital follow-up after the HI. All children with severe disability received appropriate follow-up, but 64% of children with moderate disability received none. No evidence was found to suggest a threshold of injury severity below which the risk of late sequelae could be safely discounted. Conclusions:Children admitted with mild HI may be at risk of poor outcomes, but often do not receive routine hospital follow-up. A postal questionnaire combined with the KOSCHI to assess outcomes after HI may be used to identify children who would benefit from clinical assessment. Further research is needed to identify factors which place children with mild HI at risk of late morbidity

Children's brain injury : a postal follow-up of 525 children from one health region in the UK

Primary objectives: to follow-up a population of children admitted to one Hospital Trust with traumatic brain injury (TBI), and compare outcomes following mild TBI with outcomes following moderate or severe TBI. Research design: population-based postal questionnaire survey. Methods and procedures: questionnaires were mailed to parents of all 974 surviving children on a register of paediatric TBI admissions, 525 completed questionnaires were returned (56.2%). Most children (419) had suffered mild TBI, 57 moderate, and 49 severe. Main outcomes and results: Thirty percent of parents received no information on post-injury symptoms, and clinical follow-up was limited. Statistically significant differences were observed between mild and moderate/severe groups for cognitive, social, emotional, and mobility problems. Nevertheless, approximately 20% of the mild group suffered from poor concentration, personality change, and educational problems post-injury. Few schools (20%) made special provision for children returning after injury. Conclusions: children can have long lasting and wide ranging sequelae following TBI. Information should be routinely given to parents and schools after brain injury

Parental stress and burden following traumatic brain injury amongst children and adolescents

Primary objectives: to assess parental stress following paediatric traumatic brain injury (TBI) and examine the relationship between self-reported problems and parental stress and general health. Research design: controlled interview study Methods and procedures: Parents of ninety-seven children admitted with a TBI (49 mild, 19 moderate, 29 severe) were identified from a case register of all paediatric admissions from 1992-1998. Parents of 31 uninjured children acted as controls. Structured interviews were carried out with families, and parents assessed on the Parenting Stress Index (PSI/SF) and General Health Questionnaire (GHQ-12) at recruitment, and repeated 12 months later. Main outcomes and results: regardless of injury severity, parents of injured children suffered greater stress than control parents as measured by the PSI/SF (p = 0.001). There was a highly significant relationship between number of problems reported and level of parental stress (p = 0.001). Financial burden was related to severity of TBI. Conclusions: improved information, follow-up, and support is likely to reduce parental stress and family burden

HIV advice in the media: Implications for reinventing subjectivity

Working within a Foucauldian approach to governmentality and the ethics of self-care, this article analyzes the implications of the values upheld for caring and governing oneself in the HIV advice column of Criselda Sambeso Dudumashe, publicly HIV-positive herself. The analysis reveals that the central thrust of the advice advances the principle of investing in oneself and taking responsibility for one’s physical and psychological health. Careful self-evaluation for self-improvement, however, means expending time and energy monitoring viral load, CD4 count and physical health. Likewise, monitoring one’s adherence to HIV therapy requires careful evaluation of one’s psychological state, including personal anxieties and fears, as well as the willingness to pursue qualified assistance from experts. Such self-government, it is argued, conjures up a subjective formation whose own discretion on how to gain control of HIV is oriented toward engaging with the best scientific practices and expert advice for its consolidation. In view of the emerging role played by similar platforms on and off line, an exploration of how the self is set in relation to itself, and how self-improvement is governed, offers insight into the contours of subjectivity in the post-AIDS era of treatment possibility

Cultivating nutrition

"Over the past decade, donor-funded policies and programs designed to address undernutrition in the Global South have shifted away from agriculture-based strategies toward nutrient supplementation and food fortification programs. Given the potential benefits resulting from agriculture-based nutrition interventions, this study uses Q methodology to explore the views of a range of stakeholders from both developed and developing countries on the value of—and constraints related to—gender-sensitive, nutrition-oriented agricultural projects. The three distinct viewpoints that emerge from this exercise all support the use of agricultural strategies to improve nutrition and underline the importance of gender-sensitive approaches. The viewpoints differ, however, on the relative importance of nutrition education, the strategic use of nutrient supplementation and food fortification, and the degree to which agriculture-based approaches have an impact on nutrition. The findings indicate that there is common ground among a range of stakeholders—donors, researchers, policymakers, and program practitioners—on the benefits of agriculture and gender-sensitive strategies to improve nutrition. These areas of agreement can serve as a foundation for forging an effective integrative strategy to improve nutrition that includes gender-sensitive agricultural approaches." Authors' AbstractNutrition ,malnutrition ,Agriculture ,stakeholders ,Gender ,

Cultivating nutrition

"Over the past decade, donor-funded policies and programs designed to address undernutrition in the Global South have shifted away from agriculture-based strategies toward nutrient supplementation and food fortification programs. Given the potential benefits resulting from agriculture-based nutrition interventions, this study uses Q methodology to explore the views of a range of stakeholders from both developed and developing countries on the value of—and constraints related to—gender-sensitive, nutrition-oriented agricultural projects. The three distinct viewpoints that emerge from this exercise all support the use of agricultural strategies to improve nutrition and underline the importance of gender-sensitive approaches. The viewpoints differ, however, on the relative importance of nutrition education, the strategic use of nutrient supplementation and food fortification, and the degree to which agriculture-based approaches have an impact on nutrition. The findings indicate that there is common ground among a range of stakeholders—donors, researchers, policymakers, and program practitioners—on the benefits of agriculture and gender-sensitive strategies to improve nutrition. These areas of agreement can serve as a foundation for forging an effective integrative strategy to improve nutrition that includes gender-sensitive agricultural approaches." Authors' AbstractNutrition ,malnutrition ,Agriculture ,stakeholders ,Gender ,