The development of an observation tool for use with parents with psychiatric disability and their preschool children

Community-based treatment and care of people with psychiatric disabilities has meant that they are now more likely to engage in the parenting role. This has led to the development of programs designed to enhance the parenting skills of people with psychiatric disabilities. Evaluation of these programs has been hampered by a paucity of evaluation tools. This study's aim was to develop and trial a tool that examined the parent-child interaction within a group setting, was functional and easy to use, required minimum training and equipment, and had acceptable levels of reliability and validity. The revised tool yielded a single scale with acceptable reliability. It had discriminative validity and concurrent validity with non-independent global ratings of parenting. Sensitivity to change was not investigated. The findings suggest that this method of evaluating parenting is likely to have both clinical and research utility and further investigation of the psychometric properties of the tool is warranted.

Early and middle years of schooling

What to look for in the chapter • how inclusion for the early and middle years offers a set of unique challenges; • how school communities can promote inclusion for children and young adolescents; • strategies that teachers can use to build and maintain community in early and middle years’ settings; • factors that influence the success of teachers working with children and young adolescents in inclusive schools; • practical measures that teachers can take, in light of these factors, to promote the success of inclusion; and • the different responses that children in the early and middle years have to inclusion, how teachers can identify those responses, and what they can do to ensure that they are positive.

Impact of disability on families : Grandparents’ perspectives

Background Caring for a child with a disability can be a unique and challenging experience, with families often relying on informal networks for support. Often, grandparents are key support resources, yet little is known about their roles and experiences. Reporting on data collected in a larger Australian study, this article explores grandparents' experiences of caring for a child with a disability and the impact on their family relationships and quality of life. Method A qualitative purposive sampling design was utilised; semi-structured interviews were conducted with 22 grandparents (17 women, 5 men) of children with a disability. Grandparents ranged in age from 55 to 75 years old and lived within a 90-min drive of Brisbane, Australia. Interviews were transcribed and responses analysed using a thematic approach, identifying categories, themes and patterns. Findings Four key themes characterised grandparents' views about their role in the family: holding own emotions (decision to be positive), self-sacrifice (decision to put family needs first), maintaining family relationships (being the ‘go-between’) and quality of life for family in the future (concerns about the future). Conclusions Grandparents are central to family functioning and quality of life, but this contribution comes with a significant cost to their own personal well-being. Implications for policy, practice and research are discussed, particularly grandparents' fear that their family could not cope without their support.

Parental experience of childhood cancer using Interpretative Phenomenological Analysis

Whilst survival rates for childhood cancer have improved dramatically over the past three decades, it is still a devastating diagnosis for family members and an illness which severely disrupts the lifestyle of the family unit. Developing an understanding of the impact of the illness on the family is crucial to better support families’ deal with the demands of the illness. In this study 9 families in which a child was diagnosed with cancer were interviewed twice over a 12 month period, approximately 6 months apart. Using Interpretative Phenomenological Analysis (IPA), a semi-structured interview was used to explicate parent’s experience of childhood cancer. The results revealed 5 super ordinate themes; (1) a pivotal moment in time, (2) the experience of adaptation in relation to having a sick child, (3) the nature of support, (4) re-evaluation of values during a critical life experience and (5) the experience of optimism and altruism. Findings indicate that parents express both negative and positive experiences as they re-evaluate the meaning and purpose of life, seek to redefine themselves, often in terms of priorities, relationships, sense of community, and achieve degrees of optimism and altruism. Implications for addressing the needs of parents and for further research are discussed.

'My grandchild has a disability' : impact on grandparenting identity, roles and relationships

Being a grandparent is an important and valued role for many older adults, who often have strong views about the type of grandparent they will be and what they will teach their grandchild. When their grandchild has a disability, grandparents may have to significantly adjust their expectations and interactions. This research explores if and how having a grandchild with a disability influences grandparents’ sense of identity and enactment of the grandparent role. Using qualitative purposive sampling, semi-structured interviews were conducted with 22 grandparents of children with an intellectual and/or physical disability residing in Brisbane, Australia. A thematic analysis identified three key themes characterising grandparent’s views: formation of grandparenting identity, styles of grandparenting, and role enactment. The results highlight the critical role of grandparents when a child has a disability, illustrating that the grandparenting experience and role enactment may be universal with only the context and delivery varying.

The professional conversation : a new approach to professional learning in early childhood education and care

In 2009, Australia celebrated the introduction of a national Early Years Learning Framework. This is a critical component in a series of educational reforms designed to support quality pedagogy and practice in early childhood education and care (ECEC) and successful transition to school. As with any policy change, success in real terms relies upon building shared understanding and the capacity of educators to apply new knowledge and support change and improved practice within their service. With these outcomes in mind, a collaborative research project is investigating the efficacy of a new approach to professional learning in ECEC: The professional conversation. This paper provides an overview of the professional conversation approach, including underpinning principles and the design and use of reflective questions to support meaningful conversation and learning.

Inclusive practice in kindergarten

Professional Development module video interview What does the principle of inclusive practice look/sound/feel like in the early years setting? (7min09sec; 15 MB) What do you see as the role of the teacher and support personnel in terms of inclusive practice? Why is collaboration so important? (3min; 6 MB) What communication strategies would help support inclusive practices with parents? (4min; 9 MB)

Space, place and early childhood literacy

This chapter examines the changing landscape of literacy in the early years and considers how the diverse spaces and places in which early literacy learning is promoted and takes place can be conceptualised and researched. We argue that early literacy research needs to extend beyond a language focus to become attentive to the embodied, material dimensions of learning environments. The discussion is organised in terms of three kinds of spaces within which children encounter opportunities to participate in communication and representational practices. These are domestic spaces, commercial spaces and spaces of formal education. Theories of spatiality and material semiotics provide the conceptual tools for interpreting research studies located in these spaces. Implications for educators are considered.

Early childhood education

Young children are the most vulnerable and most at risk of environmental challenges, current and future. Yet, early learning around environment and sustainability issues and topics has been neglected and underrated in early childhood education even though there is an expanding body of research literature – from economics, neuroscience, sociology and health – that shows that early investments in human capital offer substantial returns for individuals and for communities and have a long reach into the future. Early childhood education for sustainability (ECEfS) - a synthesis of early childhood education (ECE) and education for sustainability (EfS) - builds on groundings in play, outdoor learning and nature education, but takes a stronger focus on learning about, and engagement with, environmental and sustainability issues. Child participation and agency is central to ECEfS and can relate, for example, to local environmental problem-solving such as water and energy conservation or waste reduction in a childcare centre, kindergarten or preschool, or young children’s social learning for Indigenous Reconciliation and cultural inclusivity. While the ECE field has been much slower than other educational sectors in taking up the challenges of sustainability, this situation is rapidly changing as early childhood practitioners begin to engage – it is fast moving from the margins of early childhood curriculum and pedagogic decision-making into the mainstream. This presents challenges, however, as ECEfS is somewhat misunderstood and misrepresented and, as a new field, is under-researched and under-theorised.

Cohabitation : placing disability centre stage

The play Cohabitation places disability centre stage by creating a three dimensional protagonist who is also a wheelchair user. The accompanying exegesis examines the challenges associated with creating such a character for theatre, using a practice-led methodology. During the process of writing my case study play, I have investigated the international literature, reflected on my experience as a physician specialising in rehabilitation and collaborated with members of the Australian and international disability communities. I have also reflected on the historical stereotypes associated with disability and integrated the contemporary experience of wheelchair users into my script. By organising a production of the play in Australia and directing a rehearsed reading of the play in New York, I was able to scrutinise my additional goal of casting an actor who was also a wheelchair user. My research illuminates the issues involved in writing and producing a play in which the lead character also has a physical disability, and I would hope, offers insight into the creation of such a character and script.

Laughing & disability : comedy, collaborative authorship and Down Under Mystery Tour

This thesis is an exploration of representation, authorship and creative collaboration in disability comedy, the centre piece of which is a feature-length film starring, co-created and co-written by three intellectually-disabled people. The film, entitled Down Under Mystery Tour, aims to entertain, and be accessible to, a mainstream audience, one that would not normally care about disability or listen to disabled voices. In the past, the failure of these voices to reach audiences has been blamed on poor training, marginal timeslots and indifferent audiences. But this project seeks an alternative approach, building collaboration between disabled and non-disabled people to express voice, conceive, construct and produce a filmed narrative, and engage willing audiences who want to listen.

Grotesque gestures or sensuous signs? Rethinking notions of apprenticeship in early childhood education

Education might be conceptualized as a swarm of signs. Deleuze, in Proust and Signs (1964/2000) suggests that “Everything that teaches us something emits signs” (p. 4). Such conceptualizations regard education as fluid, multiple and temporal; a young child can display great skill in decoding some signs but not others. Regarding education as temporal and complex operates at some distance to the sociocultural concepts suggested by Vygotsky (1978) which focus on linear sequences of gaining managed, culturally-loaded knowledge from more experienced others. Despite differing theorizations around apprenticeship, during early years education a child becomes sensitive to signs that collectively prioritize conventionalized knowledge acquisition and communication practices. Drawing for learning and communicating exemplifies apprenticeship as a creative process rather than as sequential or culturally driven, and serves to exemplify Deleuzian concepts around the relationships between time and learning, rather than age or development stage and learning.

Sporadic childhood Burkitt lymphoma incidence in the United States during 1992-2005

Background The risk factors and co-factors for sporadic childhood BL are unknown. We investigated demographic and age-specific characteristics of childhood BL (0–14 years) in the U.S. Procedure BL age-standardized incidence rates (2000 U.S. standard population), were calculated using data obtained from 12 registries in the NCI’s Surveillance, Epidemiology, and End Results program for cases diagnosed from 1992 through 2005. Incidence rate ratios and 95% confidence intervals (95% CI) were calculated by gender, age-group, race, ethnicity, calendar-year period, and registry. Results Of 296 cases identified, 56% were diagnosed in lymph nodes, 21% in abdominal organs, not including retroperitoneal lymph nodes, 14% were Burkitt cell leukemia, and 9% on face/head structures. The male-to-female case ratio was highest for facial/head tumors (25:1) and lowest for Burkitt cell leukemia (1.6:1). BL incidence rate was 2.5 (95% CI 2.3–2.8) cases per million person-years and was higher among boys than girls (3.9 vs. 1.1, p<0.001) and higher among Whites and Asians/Pacific Islanders than among Blacks (2.8 and 2.9 vs.1.2, respectively, p<0.001). By ethnicity, BL incidence was higher among non-Hispanic Whites than Hispanic Whites (3.2 vs. 2.0, p=0.002). Age-specific incidence rate for BL peaked by age 3–5 years (3.4 cases per million), then stabilized or declined with increasing age, but it did not vary with calendar-year or registry area. Conclusions Our results indicate that early childhood exposures, male-sex, and White race may be risk factors for sporadic childhood BL in the United States. Keywords: epidemiology, pediatric cancer, non-Hodgkin lymphoma, HIV/AIDS

(Dia)logics of difference disability, performance and spectatorship in Liz Crow's Resistance on the Plinth

In this article I examine how artists with disabilities use public-space performance to encourage passersby to reflect on the construction of public discourses about disability – and, therefore, the construction of publics that are potentially inclusive of people with disabilities. I concentrate on British storyteller, artist, filmmaker and activist Liz Crow's Resistance on the Plinth, one of four pieces Crow has produced over the past three years as part of the Resistance series, an examination of the Nazi regime's Aktion T4 programme, which resulted in the mass murder of a quarter of a million people with disabilities. Created in August 2009 as part of Antony Gormley's One & Other public art project, the piece featured Crow dressed in a Nazi uniform and seated in a wheelchair on the Fourth Plinth in London's Trafalgar Square. For Crow – who creates work in a British context where public debate about the eugenics of genetic testing, euthanasia and assisted suicide is prevalent in the media – the Nazi atrocity is still rich in confronting imagery, resonant and relevant in a contemporary context. In this article, I consider the challenges that Gormley's extremely public One & Other presented for professional artists like Crow, who are committed to intervening in public perceptions of identity, community and culture. I describe the structural choices Crow made to provoke debate about the cultural logics embodied in the image she presented, and analyse some of the spectatorial responses from online forums such as the One & Other website, Facebook and Twitter immediately following the event.

“That you would post such a thing implies that you are a despicable human being”: spectatorship, social media, & the struggle for meaning in disability performance

Artists with disabilities working in Live Art paradigms often present performances which replay the social attitudes they are subject to in daily life as guerilla theatre in public spaces – including online spaces. In doing so, these artists draw spectators’ attention to the way their responses to disabled people contribute to the social construction of disability. They provide different theatrical, architectural or technological devices to encourage spectators to articulate their response to themselves and others. But – the use of exaggeration, comedy and confrontation in these practices notwithstanding – their blurry boundaries mean some spectators experience confusion as to whether they are responding to real life or a representation of it. This results in conflicted responses which reveal as much about the politics of disability as the performances themselves. In this paper, I examine how these conflicted responses play out in online forums. I discuss diverse examples, from blog comments on Liz Crow’s Resistance on the Plinth on YouTube, to Aaron Williamson and Katherine Araneillo’s Disabled Avant-Garde clips on YouTube, to Ju Gosling’s Letter Writing Project on her website, to segments of UK Channel 4’s mock reality show Cast Offs on YouTube. I demonstrate how online forums become a place not just for recording memories of an original performance (which posters may not have seen), but for a new performance, which goes well beyond re-membering/remediating the original. I identify trends in the way experience, memory and meaningmaking play out in these performative forums – moving from clarification of the original act’s parameters, to claims of disgust, insult or offense, to counter-claims confirming the comic or political efficacy of the act, often linked disclosure of personal memory or experience of disability. I examine the way these encounters at the interstices of live and/or online performance, memory, technology and public/private history negotiate ideas about disability, and what they tell us about the ethics and efficacy of the specific modes of performance and spectatorship these artists with disabilities are invoking.