How stable is the well-being of Australian mothers who care for young children with special health care needs?

Ninety-seven percent of children who have special health care needs are cared for by their mothers. These mothers cite that their informal care work can be intrinsically rewarding, however, the role is not without substantial difficulties and consequences. We investigated differences in the health and well-being of mothers whose young children do and do not have special health care needs. Quantitative data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children. This study employs a matched-case control methodology to compare the experiences of a group of 292 mothers whose children are identified as having long term special health care needs to those mothers whose children are typically developing at two time points; Wave 1 (2004) and Wave 3 (2008). The findings support previous research that mothers of children with special health care needs have poorer general health and mental health than mothers whose children do not have special needs. Mothers of children with special health care needs also perceived life as more difficult. Longitudinally, this study also shows that maternal well-being remains relatively stable during the years when children are transitioning to formal schooling. Implications for policy makers, practitioners and early childhood professionals are discussed.

Lifestyle limitations of children and young people with severe cerebral palsy: a population study protocol

Aim.  This paper is a presentation of a study protocol to establish the prevalence of orthopaedic problems (hip dislocation, pelvic obliquity, spinal deformity and contractures) and their impact on pain, function, participation and health in a population of children and young people with severe cerebral palsy.

Background.  Cerebral palsy is the commonest cause of motor impairment in childhood and is associated with life-long disability. An estimated 30% of people with cerebral palsy have severe forms and are non-ambulant. Although the underlying neurological damage is not amenable to correction, many health services are dedicated to providing therapeutic and adaptive support to help people with the condition reach their potential.

Method.  A cross-sectional survey of children and young people, aged 4–25 years with severe, non-ambulant cerebral palsy as defined using the Gross Motor Function Classification System (Levels IV and V). Study participants will be identified from a pre-existing, geographically defined case register and recruited via a healthcare professional known to them. Two assessments will be undertaken: one involving parents/carers at home and using questionnaires; the other involving the child/young person ideally in one of three settings and including X-rays if clinically indicated.

Discussion.  This study will contribute to our knowledge of the history and epidemiology of orthopaedic problems in children and young people with cerebral palsy and how these problems accumulate and impact on participation, health and well-being. The study will also identify unmet need and make recommendations for good practice in relation to the orthopaedic care and management for people with severe cerebral palsy

Comparing long-term placements for young children in care: The care pathways and outcomes study - Northern Ireland

When deciding on a long-term placement for a young child in care, a key challenge is to identify one that will enable children to achieve their full potential and enhance their health and wellbeing in the longer term. However, there is a dearth of research evidence that compares how children fare in the longer term across placement options.

The Care Pathways and Outcomes study is one of a small number of studies internationally that takes this form of longitudinal comparative approach. Since 2000, it has been tracking the placement profile for a population of children who were under the age of five and in care in Northern Ireland on a particular census day, and gathering comparative data on how the children and their parents/carers have been coping across the different types of placements provided.

This book reports on the most recent phase of the study, which involved interviews with a sub-group of the children (aged 9 to 14) and their parents/carers in adoption, foster care, kinship care, on residence order, and living with birth parents. Similarities and differences were explored between placement types, in terms of children’s attachment, self-concept, education, health and behaviour, their carers’ stress, social support, family communication, and contact with birth families.

This contemporary study contributes to evidence-based practice and provides a research base for decision-making throughout the UK.

Temper outbursts in Prader-Willi syndrome: causes, behavioural and emotional sequence and responses by carers

Background: Temper outbursts are common in Prader-Willi syndrome but rarely described in detail. This study investigated the phenomenology of temper outbursts in terms of antecedents, sequence of behaviours and emotions and intervention strategies used.

Method: A semi-structured interview about temper outbursts was conducted with the main carers of seven children (9.5 to 16.7 years) and seven adults (24.7 to 47.10 years) with Prader-Willi syndrome (10 male, 4 female). Reliability and validity of the interview results was established.

Results: Various setting events increased and reduced the likelihood of temper outbursts. The most common antecedent was a change to routine or expectation. There were marked similarities in the sequence of behaviours and emotions during temper outbursts, with anger rising quickly followed by expressions of remorse and distress at the end of an outburst.

Discussion: The sequence of behaviours and emotions within outbursts was similar to that described in temper tantrums in typical development. Cognitive and emotional processes are likely to be important in the understanding of temper outbursts with implications for early intervention.

Child Maltreatment and High Risk Families: Protecting children and young people

Most child maltreatment occurs within the context of high risk families. There are ethical, economic and ecological reasons why physical abuse in such families should be a major concern. Physical abuse is a significant issue throughout the UK. Yet, while neglect and other forms of abuse are receiving focused attention, physical abuse may languish under the misconceptions that it is no longer a problem, is addressed elsewhere, or is just too overwhelming an issue.
The physical abuse of children can involve regular, violent treatment at the hands of parents or carers over a number of years. Its physical effects may last for days and may result in actual physical injury. It is not accidental. Although physical abuse can occur in any family, it is prevalent in particular sectors of society, where families may be vulnerable to a combination of complex risk factors such as domestic abuse, alcohol and drug (mis)use, and mental health issues. These factors are present in 34% of Serious Case Reviews (SCRs).
The authors provide an increased understanding of risk, analysis, impact, learning and the current landscape of service delivery in relation to the physical abuse of children living in high risk families for professional, postgraduate and policy-making audiences.

A realist literature review of transition to adult services by young people with life-limiting conditions in ireland.

Background As a result of improvements in care and treatment more young people with life-limiting conditions are now living beyond childhood, meaning they must make the transition from children's to adult services. The loss of long-standing relationships with providers of children's services combines with poor co-ordination of services to make this a daunting prospect for young people and their families. However, there is little evidence on transition services for young people with life limiting conditions, with few models of good practice in the literature.


Aims The purpose of this review was to determine the factors that promote or hinder the transition to adult services for young adults with life limiting conditions, and identify gaps to be addressed.


Methods A comprehensive search of the literature was undertaken using key terms, of the following databases; MEDLINE and the Cochrane Database of Systematic Reviews. 314 articles were sourced and inclusion and exclusion criteria were applied to highlight the most relevant literature.


Results Studies were reviewed using a realist review approach and three themes emerged from the literature. Barriers and facilitators to the transition process were identified associated with: 1. The patient 2. Parents/carers 3. The organisation.


Conclusion It is unclear from the literature what the specific factors are that promote or hinder the transition process for young adults with life limiting conditions who go through the transition from children's to adult services, therefore, research is required to identify the factors that promote and hinder the transition process in Ireland. This research is currently being carried out by the author as part of Doctoral studies. The three year full time Doctoral study commenced in January 2013 and is funded by the All Ireland Institute of Hospice and Palliative Care.

Nurturing attachments in looked after children: a feasibility study of a group-based programme for carers

Introduction: The attachment related difficulties of Looked after Children are well recognised in literature with difficulties linked to early experiences hypothesised to be perpetuated by experiences of the care system itself. Recent policy guidelines have emphasised the importance of relationships for children in care, one of the most important being with their primary carer. Golding (2014) published a group format training resource entitled ‘Nurturing Attachments’ which aims to promote ‘therapeutic parenting’; however there is limited knowledge on the feasibility of this intensive approach.
Aims: To assess the feasibility of Nurturing Attachments through exploring (i.) recruitment, retention and attrition, (ii.) initial outcomes, (iii.) acceptability and (iv.) ability of the programme to be delivered in line with the manual content and structure.
Method Two Health and Social Care Trusts in NI participated in the study by facilitating a Nurturing Attachments group in each site with adoptive parents, foster carers and kinship carers (N = 26). Carers completed pre and post measures to explore initial outcome, completing an evaluation questionnaire to explore acceptability. Acceptability was also explored with Trust stakeholders and group facilitators through focus group and interview. To explore if the manual can be delivered as intended, each group completed debrief tools.
Results: The overall response rate for uptake was 13.9%, which impacted on engagement for a ‘treatment as usual’ group. Once engaged in the programme, attrition was low and attendance was high. Initial outcomes have shown positive effects for both young person and carers. Feedback suggests a positive response regarding acceptability with limited expressed concern. The manual can be delivered in a standardised way; however can be flexible enough to allow for group processes.
Conclusions: Further research is needed to continue to explore efficacy, however the current study has provided supporting evidence that Nurturing Attachments as an intervention has positively impacted on many levels of the LAAC system.

Does a structured gardening programme improve well-being In young-onset dementia? A preliminary study

Introduction: Young onset dementia (YOD) affects about 1 in 1500 people aged under 65 years in the UK. It is associated with loss of employment, independence and an increase in psychological distress. This project set out to identify the benefits of a 2 hour week) structured activity programme of gardening for people with YOD. Method: A mixed qualitative quantitative study of therapeutic gardening for people with YOD, measuring outcomes for both participants with YOD and their carers. 12 participants were recruited from a county wide older adults mental health service, based on onset of dementia being before 65 years of age(range 43-65 years). 2 dropped out and 1 died during the project. Measures included the Mini Mental State Examination, Bradford Well Being Profile, Large Allen Cognitive Level Screen and Pool Activity Level. Results: Over a one year period the carers of the people with YOD found that the project had given participants a renewed sense of purpose and increased well-being. while cognitive functioning declined. Conclusions: This study suggests that a meaningful guided activity programme can maintain or improve well-being in the presence of cognitive deterioration.

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.