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An improved understanding of diagnostic and treatment practices for patients with rare primary mitochondrial disorders can support benchmarking against guidelines and establish priorities for evaluative research. We aimed to describe physician care for patients with mitochondrial diseases in Canada, including variation in care.
We conducted a cross-sectional survey of Canadian physicians involved in the diagnosis and/or ongoing care of patients with mitochondrial diseases. We used snowball sampling to identify potentially eligible participants, who were contacted by mail up to five times and invited to complete a questionnaire by mail or internet. The questionnaire addressed: personal experience in providing care for mitochondrial disorders; diagnostic and treatment practices; challenges in accessing tests or treatments; and views regarding research priorities.
We received 58 survey responses (52% response rate). Most respondents (83%) reported spending 20% or less of their clinical practice time caring for patients with mitochondrial disorders. We identified important variation in diagnostic care, although assessments frequently reported as diagnostically helpful (e.g., brain magnetic resonance imaging, MRI/MR spectroscopy) were also recommended in published guidelines. Approximately half (49%) of participants would recommend “mitochondrial cocktails” for all or most patients, but we identified variation in responses regarding specific vitamins and cofactors. A majority of physicians recommended studies on the development of effective therapies as the top research priority.
While Canadian physicians’ views about diagnostic care and disease management are aligned with published recommendations, important variations in care reflect persistent areas of uncertainty and a need for empirical evidence to support and update standard protocols.
In setting out to explore changes and challenges in the family lives of children and young people, and whether and how it may be important, useful and productive to consider such experiences as troubling or troublesome, we started from some basic assumptions for framing our thinking across diverse topics and circumstances. The first is that change is an inescapable feature of life, and these changes will often be highly challenging, although in some circumstances, it may be the absence of change that is troubling. The second is that troubles, conflict and painful experiences are common features of children's and young people's lives as these occur in the particular contexts of their families and close relationships, and all families are likely to be troubled at times. Yet, an idealised notion of childhood as a time of protection and innocence in contemporary Western cultures sometimes undermines the ability to acknowledge this and to equip children to deal with such trouble when they encounter it, and this failure may itself exacerbate the impact of trouble. This raises a significant tension between how far to understand troubles as pervasive and, indeed, universal and to build expectations of and for children's lives on this basis, and how far to see troubles as avoidable and unacceptable and requiring clear interventions that will state this unequivocally, and seek to remedy and/or prevent such troubles.
A further tension concerns how to understand and prioritise children's needs in the context of their family relationships. Recent decades in affluent Western societies have seen a dramatic shift in public policy and popular media towards the nature of parenting and the ‘skills’ needed to perform it satisfactorily, promoting what has been described as ‘intensive mothering’ (Hays, 1996) and ‘concerted cultivation’ (Lareau, 2003). The demanding nature of such parenting in terms of parents’ (generally mothers’) time and devoted attention, and the increased expectations of parenting skills, has occurred amidst a process of increased surveillance and regulation of parents (Burman, 2007) and moral discourses that have led to a ‘responsibilisation’ of parents (Ribbens McCarthy, 2008). The belief that changes in parenting will rectify many, if not most, societal problems is proffered at the expense of attention to the impacts of poverty and inequality on the challenges of parenting.
As the everyday family lives of children and young people come to be increasingly defined as matters of public policy and concern, it is important to raise the question of how we can understand the contested terrain between ‘normal’ family troubles and troubled and troubling families. This edited collection is the outcome of a two-day colloquium held in London, in July 2010, to promote dialogue between researchers addressing mainstream family change and diversity in everyday lives, and those specialising in specific problems that prompt professional interventions, and to consider the implications for policymakers, service users and practitioners.
The Colloquium grew from the editors’ friendship and academic conversations over many years, through which we became aware of (and intrigued by) a practical divide that tends to occur – in terms of the conferences we attend, the networks we belong to, the questions that shape research and the literatures that are discussed in these various sites – between those social scientists researching and writing about changes in ‘mainstream’ family lives, and those researching and writing about family lives that are considered to be ‘problematic’ and subject to direct policy and professional interventions. Yet, much research on mainstream families incorporates data about how ‘troubles’ feature in the lives of research participants, although this may not appear in the main outputs of such studies. Similarly, applied research on troublesome family issues may incorporate data on how such family members experience the kinds of change and diversity addressed by ‘mainstream’ researchers and how they carry on, and ‘normalise’, their everyday lives in the context of trouble. For the Colloquium, we invited such researchers to take a fresh look at their data to explore how ‘troubles’ feature in ‘normal’ families, and how the ‘normal’ features in ‘troubled’ families. The response to our call for papers brought forward enthusiastic participants from across the globe, offering to address these questions by drawing on research on a wide range of substantive topics, including infant care, sibling conflict, divorce, parental bereavement, disability, illness, migration and asylum-seeking, substance misuse, violence, kinship care, and forced marriage.
Key questions that we asked participants to consider included:
• If change (whether experienced suddenly or incrementally) is a ‘normal’ feature of family lives and the life course, at what point does it become experienced, or perceived, as troublesome, and why?
As the everyday family lives of children and young people come to be increasingly defined as matters of public policy and concern, it is important to raise the question of how we can understand the contested terrain between 'normal' family troubles and troubled and troubling families. In this important, timely and thought-provoking publication, a wide range of contributors explore how 'troubles' feature in 'normal' families, and how the 'normal' features in 'troubled' families. Drawing on research on a wide range of substantive topics - including infant care, sibling conflict, divorce, disability, illness, migration and asylum-seeking, substance misuse, violence, kinship care, and forced marriage - the contributors aim to promote dialogue between researchers addressing mainstream family change and diversity in everyday lives, and those specialising in specific problems which prompt professional interventions. In tackling these contentious and difficult issues across a variety of topics, the book addresses a wide audience, including policy makers, service users and practitioners, as well as family studies scholars more generally who are interested in issues of family change.
Dairy food consumption is important for Australian children as it contributes key nutrients such as protein and Ca. The aim of the present paper is to describe dietary intake from dairy foods for Australian children aged 2–16 years in 2007.
Secondary analysis of a quota-sampled survey using population-weighted, 1 d (24 h) dietary recall data.
Australian national survey conducted from February to August 2007.
Children (n 4487) aged 2–16 years.
Most Australian children consumed dairy foods (84–98 %), with the proportion consuming tending to decrease with age and males consuming significantly more than females from the age of 4 years. Milk was the most commonly consumed dairy food (58–88 %) and consumed in the greatest amount (243–384 g/d). Most children consumed regular-fat dairy products. The contribution of dairy foods to total energy intake decreased with age; from 22 % of total energy at age 2–3 years to 11 % at age 14–16 years. This trend was similar for all nutrients analysed. Dairy food intake peaked between 06.00 and 10.00 hours (typical breakfast hours) corresponding with the peak in dairy Ca intake. Australian children (older than 4 years) did not reach recommendations for dairy food intake, consuming ≤2 servings/d.
The under-consumption of dairy foods by Australian children has important implications for intake of key nutrients and should be addressed by multiple strategies.
Family lives are an area where people's moral identities are crucially at stake. Yet the significance of dependent children to the work needed to sustain morally adequate adult identities is largely overlooked. Furthermore, the particular situation of divorce or separation and repartnering where children are involved is fundamentally relevant to current sociological debates about the changing nature of marriage and family life. Notions of the pursuit of self-development and couple intimacy clash and create tensions with notions of duty or responsibility to children's needs. Drawing on a study of parents and step-parents, we consider how interviewees' moral understandings were fundamentally shaped by social constructions of the Child and the Adult. Importantly, the presence of dependent children led to an overall key moral imperative concerning the requirement for responsible adults to put the needs of children first. There were, however, strong gender dimensions in the ways in which this moral imperative was played out, and in some tensions with an alternative, but secondary, moral ethic of care of self. We discuss the significance of the Child/Adult construction in relation to theories about the nature of contemporary family obligations and of contemporary morality more generally.
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