The transition from pediatric to adult health care services for young adults with a disability : an ethical perspective

Young children with disabilities and their carers or parents tend to form a long-term dependent relationship with a paediatrician throughout childhood At some stage when the young person with a disability reaches early adulthood, the relationship is severed This paper draws upon recent research undertaken by the authors that describes the difficulties experienced by young people with disabilities as they go through the transition from paediatric care to adult mainstream health care services. The purpose of this article is to present the argument that the dependent, paternalistic relationship that tends to exist between young people with disabilities (and/or their carers) and paediatricians throughout childhood does not facilitate the successful negotiation of adult mainstream health care services, nor optimally promote the well-being of these young people with disabilities. It is proposed that the promotion of autonomy (or self-determination) via a well planned transition program will increase the likelihood that young adults with disabilities and/or their carers will be empowered to successfully negotiate the current mainstream health care system in Australia, and will enhance the well-being of young adults with disabilities.

Young people with an intellectual disability: risk and resilience.

There is a large body of literature about personal risk and resilience among children and adolescents from a variety of subpopulations. However, in intellectual disability research, resilience has almost exclusively been investigated and reported at the level of family stress and coping rather than an individual child's capacity to function adaptively despite severe risk. In this study young people with an intellectual disability, family members and non-family members (carers, teachers and family friends) were interviewed and asked about the young people’s relationships, coping styles, behaviour patterns and resilience. The main features placing these young people at risk included having autism or inflexible patterns of behaviour, displaying some forms of challenging behaviour, difficulty with receptive and expressive communication, living in families with high competing demands for time and living in a relatively unaccommodating community environment. The main factors leading to resilience were an attractive appearance/disposition, ability to get one’s message across, ability to adapt behaviour to changing contexts, low family stress levels and high sense of competence, stable relationships with supportive others and an accommodating/accepting community environment (both school and social).

Grandparents as educators and carers in China

Many grandparents play a significant role as educators and carers of children in the preschool years. Recently, this role has become the focus of much early childhood research as challenges facing grandparent carers and grandparent-headed households increasingly become an economic and social issue. Using survey data from China we explore the role of grandparents who have a primary care responsibility for a young child and discuss this contribution to the family in relation to quality of care and education. We argue that grandparents play a significant role in terms of home education of the young, workforce support for young parents, cultural identity within families and community capacity building. Grandparents are therefore deserving of more sustained attention from policy makers and educators when considering the young child's developmental environment.

Young children learning mathematics: a guide for educators and families

Can young children learn mathematics before school? What ideas and concepts are they capable of learning? How can adults develop a child's mathematical thinking from birth to five years? Early learning plays a critical role in laying a foundation for later success in schooling. This book explores the possibilities and potential for early childhood educators, parents and carers to stimulate young children's mathematical thinking. Drawing on the authors' significant research, it answers frequently asked questions about early childhood mathematics, discusses the experiences, activities and conversations that could lead to mathematics learning, and provides simple, easy-to-follow guidelines on introducing and building on the mathematical concepts underpinning play and activity in young children aged from birth to five.

Descriptive study of carers' support, encouragement and modelling of healthy lifestyle behaviours in residential out-of-home care

OBJECTIVE: Given the high prevalence of overweight/obesity among young people in residential out-of-home care (OOHC), and as their carers are in loco parentis, this research aimed: 1) to examine the healthy lifestyle cognitions and behaviours of residential carers; and 2) to describe resources needed to improve diet and/or physical activity outcomes for residents. METHODS: Cross-sectional data were collected from 243 residential carers. Measures included: demographics; knowledge of dietary/physical activity recommendations; self-reported encouragement/importance of health behaviours; physical activity/screen time (at work); unit 'healthiness'; and necessary resources for creating a healthy environment. RESULTS: Staff placed importance on the residents eating well and being physically active. However, examination of carer knowledge found significant gaps in staff education. Three key priority areas were identified to help build a healthy food and activity environment in residential OOHC: funding, professional development and policy. CONCLUSION: Carer knowledge of healthy lifestyles can be improved and they need to be well resourced to ensure children in public care settings live in a healthy environment. IMPLICATIONS: These findings may inform the development of ongoing professional development to improve carers' health literacy, as well as policy to support dietary/activity guidelines for the OOHC sector.

Costs and advance directives at the end of life: a case of the ‘Coaching Older Adults and Carers to have their preferences Heard (COACH)’ trial

BACKGROUND: Total costs associated with care for older people nearing the end of life and the cost variations related with end of life care decisions are not well documented in the literature. Healthcare utilisation and associated health care costs for a group of older Australians who entered Transition Care following an acute hospital admission were calculated. Costs were differentiated according to a number of health care decisions and outcomes including advance directives (ADs).

METHODS: Study participants were drawn from the Coaching Older Adults and Carers to have their preferences Heard (COACH) trial funded by the Australian National Health and Medical Research Council. Data collected included total health care costs, the type of (and when) ADs were completed and the place of death. Two-step endogenous treatment-regression models were employed to test the relationship between costs and a number of variables including completion of ADs.

RESULTS: The trial recruited 230 older adults with mean age 84 years. At the end of the trial, 53 had died and 80 had completed ADs. Total healthcare costs were higher for younger participants and those who had died. No statistically significant association was found between costs and completion of ADs.

CONCLUSION: For our frail study population, the completion of ADs did not have an effect on health care utilisation and costs. Further research is needed to substantiate these findings in larger and more diverse clinical cohorts of older people.

Protocol for the Hall Technique study: A trial to measure clinical effectiveness and cost-effectiveness of stainless steel crowns for dental caries restoration in primary molars in young children

BACKGROUND: The Hall Technique (HT) is a carious primary molar treatment that does not require local analgesia, carious tissue removal or tooth preparation. The carious lesions in carefully selected teeth are sealed with a stainless steel crown (preformed metal crown). The study aims are to determine the clinical effectiveness, acceptability and cost-effectiveness of the HT for management of carious lesions in young dental patients. METHODS/DESIGN: Children, aged 3-7years, with a primary molar tooth with a carious lesion extending no further than the middle third of dentine, with no signs or symptoms of pulp inflammation or infection, and attending one of three community agencies are recruited. Target sample size is 220. A control tooth with an intra-coronal restoration is sourced from the same mouth. The primary outcome is the period of time free from further treatment. The assessments are scheduled at 6, 12 and 24months. In addition to the clinical assessment, acceptability of the HT will be assessed via questionnaires among patients and their primary carers at baseline, 6, 12 and 24months. Cost-outcome description and cost-effectiveness analysis from healthcare provider and societal perspective will be conducted. DISCUSSION: The clinical effectiveness, acceptability and cost-effectiveness of the HT in the community dental setting will be evaluated. The results of this study will determine the implementation of HT in the management of dental caries in young children.