Adult siblings' perceptions of family life and loss: A pilot case study

The death of a child with a disability presents unique challenges for individual family members. Whereas parents have received much attention in terms of their needs and challenges, siblings have received less attention. Growing up with a child with a disability who subsequently dies has a profound impact. This paper used in-depth interviews to illuminate the experiences and perceptions of siblings in one family in which a child with cerebral palsy died. The 5 siblings were interviewed about their experiences of family life and their methods of coping during the terminal phases of illness and after their sister's death. Their views on friendships, growing up, vocational choices, their sister's contribution to their lives, and their adjustment to her death are illustrated. Implications for health professionals working with siblings and families are drawn in terms of adult siblings' coping responses and their need for mutual support.

Young children's understanding of death

There is a long history of research on children's understanding of death. This article briefly reviews psychoanalytic and Piagetian literature on children's death concepts, then focuses on recent research in developmental psychology that examines children's understanding of death in the context of their developing folk theory of biology. This new research demonstrates that children first conceptualise death as a biological event around age 5 or 6 years, at the same time that they begin to construct a biological model of how the human body functions to maintain life. This detailed new account of children's developing biological knowledge has implications for practitioners who may be called on to communicate about death with young children.

Family centred care: a review of qualitative studies

Aim. To review systematically qualitative studies, which were found during a literature search for a Cochrane systematic review of the use of family centred care in children's hospitals. Background. Family centred care has become a cornerstone of paediatric practice, however, its effectiveness is not known. No single definition exists, rather a list of elements that constitute family centred care. However, it is recognized to involve the parents in care planning for a child in health services. A new definition is presented here. Methods. The papers were found in wide range of databases, by hand searching and by contacting the authors where necessary, using terms given in detail in the protocol in the Cochrane Library, in 2004. Qualitative studies could not be used for statistical analysis, but are still important to the review and so are described separately in this paper. Results. Negotiation between staff and families, perceptions held by both parents and staff roles influenced the delivery of family centred care. A sub-theme of cost of family centred care to families and staffs was discovered and this included both financial and emotional costs. Conclusion. Further research is needed to generate evidence about family centred care in situations arising from modern models of care in which family centred care is thought to be an inherent part, but which leave families with the care of sick children with little or no support. Relevance to clinical practice. Family centred care is said to be used widely in practice. More research is needed to ensure that is it being implemented correctly.

Parent management training and Asperger syndrome - A randomized controlled trial to evaluate a parent based intervention

This controlled trial of a parent management intervention aimed to increase parental competence in management of problem behaviours associated with Asperger syndrome. The intervention compared two formats, a 1 day workshop and six individual sessions. Measures were taken on three occasions: pre-intervention, at 4 weeks, and at 3 month follow-up. Variables of interest were number and intensity of problem behaviours, and parent evaluation of social interaction skills. Results showed parents reporting fewer and lower intensity of problem behaviours and increased social interactions at 4 weeks and 3 months. Results held across formats and suggest that parent management training can provide an effective intervention for parents of a child with Asperger syndrome. Group differences on outcome measures and in the use of strategies are discussed along with limitations of the study.

Adapting the 'family wellbeing' empowerment program to the needs of remote indigenous school children

Objective: To adapt the Family Wellbeing empowerment program, which was initially designed to support adults to take greater control and responsibility for their decisions and lives, to the needs of Indigenous school children living in remote communities. Method. At the request of two schools in remote Indigenous communities in far north Queensland, a pilot personal development and empowerment program based on the adult Family Wellbeing principles was developed, conducted and evaluated in the schools. The main aims of the program were to build personal identity and to encourage students to recognise their future potential and be more aware of their place in the community and wider society. Results: Participation in the program resulted in significant social and emotional growth for the students. Outcomes described by participating students and teachers included increased analytical and reflective skills, greater ability to think for oneself and set goals, less teasing and bullying in the school environment, and an enhanced sense of identity, friendship and,social relatedness'. Conclusion: This pilot implementation of the Family Wellbeing Program adapted for schools demonstrated the program's potential to enhance Indigenous young people's personal growth and development. Challenges remain in increasing parental/ family involvement and ensuring the program's sustainability and transferability. The team has been working with relevant stakeholders to further develop and package the School-based Family Wellbeing program for Education Queensland's New Basics curriculum framework.

Family structure and age at menarche: A children-of-twins approach

Girls who grow up in households with an unrelated adult male reach menarche earlier than peers, a finding hypothesized to be an evolutionary strategy for families under stress. The authors tested the alternative hypothesis that nonrandom selection into stepfathering due to shared environmental and/or genetic predispositions creates a spurious relation between stepfathering and early menarche. Using the unique controls for genetic and shared environmental experiences offered by the children-of-twins design, the authors found that cousins discordant for stepfathering did not differ in age of menarche. Moreover, controlling for mother's age of menarche eliminated differences in menarcheal age associated with stepfathering in unrelated girls. These findings strongly suggest selection, and not causation, accounts for the relationship between stepfathering and early menarche.

Children's and family needs of young women with advanced breast cancer: A review

This article reviews literature about the impact of advanced breast cancer on children and families. It is clear that the adjustment of the family is influenced by disease stage and maternal adjustment, the needs of the particular child relating closely to their developmental stage. Interventions with children and families to promote adjustment when a parent has advanced cancer are also discussed, including implications for clinical practice.

Talking to children: The within-classroom nature of everyday adult language in the early childhood educational environment

Group-size effects, as changes in the adult language when speaking to individual or multiple children in two- and three-year-olds' Australian childcare centre classrooms were investigated. The language addressed to children by 21 staff members was coded for social (e.g., non-verbal, inferential and pragmatic), and linguistic (e.g., morphological, lexical, syntactic and referential) features. In the two-year-olds' classrooms, minimal differences were found between the language used in dyads (addressed to a single child) and polyads (addressed to more than one child). More extensive group-size effects, particularly in syntactic complexity, were found in the three-year-olds' classrooms. Explanations for the constancy of the adult language input in the younger classrooms, and the changes noted in the older rooms will be discussed in terms of plurality (i.e., more than one listener), methodology, and group-size effects that may be specific to the early childhood educational setting.

Physical activity as a dimension of family life for lower primary school children

While questions of children's engagement in physical activity are being widely debated, little is known about how physical activity is valued and managed within families. This paper reports on qualitative data from a multi-method study on lower primary aged children. The focus of the broader study was to determine the relationships between young children's physical activity patterns, skills, and recreational interests, and their families' location, income, commitment to physical activity, and other responsibilities. Drawing on interviews with 12 purposively selected families, it was found that physical activity was highly valued across different family contexts, that children's engagement was shaped by their interests, friendships, and safety, and that issues such as income, family configuration, parental work commitments, and transport were potential barriers to further engagement.

Approach to challenging behaviour: a family affair

Over the past 30 years, research in the area of applied behaviour. analysis has led to a rich knowledge and understanding of the variables that influence human behaviour. This understanding and knowledge has given rise to a range of assessment and intervention techniques that have been applied to individuals with challenging behaviour. Interventions have produced changes in the severity and frequency of behaviours such as self-injury, aggression, and property destruction, card have also led to the acquisition of desired behaviours. While behaviour change has been achieved, families have expressed a desire for positive behaviour support approaches that adopt a family,focus. Research and development of support frameworks that emphasise the interrelatedness of family members, and the child with a disability as part of his or her family, have gained prominence in the family systems literature. The present paper reviews some of the behaviourally based research in this area. Through the use of a case illustration, the authors discuss the links between behavioural support and family-centred support systems for children with developmental disabilities. Theoretical and practical implications are considered and areas for future research are highlighted.

Evaluation of IDDM8 susceptibility locus in a Russian simplex family data set

Type 1 diabetes (TID) susceptibility locus, IDDM8, has been accurately mapped to 200 kilobases at the terminal end of chromosome 6q27. This is within the region which harbours a cluster of three genes encoding proteasome subunit beta 1 (PMSB1), TATA-box binding protein (TBP) and a homologue of mouse programming cell death activator 2 (PDCD2). In this study, we evaluated whether these genes contribute to TID susceptibility using the transmission disequilibrium test of the data set from 114 affected Russian simplex families. The A allele of the G/A1180 single nucleotide polymorphism (SNP) at the PDCD2 gene, which was significant in its preferential transfer from parents to diabetic children (75 transmissions vs. 47 non-transmissionS, x(2) = 12.85, P corrected = 0.0038), was found to be associated with T1D. G/A1180 dimorphism and two other SNPs, C/T771 TBP and G/T(-271) PDCD2, were shown to share three common haplotypes, two of which (A-T-G and A-T-T) have been associated with higher development risk of TID. The third haplotype (G-T-G) was related to having a lower risk of disease. These findings suggest that the PDCD2 gene is a likely susceptibility gene for TID within IDDM8. However, it was not possible to exclude the TBP gene from being another putative susceptibility gene in this region. (c) 2005 Elsevier Ltd. All rights reserved.

Adjustment in mothers of children with Asperger syndrome: An application of the double ABCX model of family adjustment

The present study examined the applicability of the double ABCX model of family adjustment in explaining maternal adjustment to caring for a child diagnosed with Asperger syndrome. Forty-seven mothers completed questionnaires at a university clinic while their children were participating in an anxiety intervention. The children were aged between 10 and 12 years. Results of correlations showed that each of the model components was related to one or more domains of maternal adjustment in the direction predicted, with the exception of problem-focused coping. Hierarchical regression analyses demonstrated that, after controlling for the effects of relevant demographics, stressor severity, pile-up of demands and coping were related to adjustment. Findings indicate the utility of the double ABCX model in guiding research into parental adjustment when caring for a child with Asperger syndrome. Limitations of the study and clinical implications are discussed.