Ethical Issues in ABA-based Service Provision for Autism in Limited-Resource Contexts: A Case Example of the People's Republic of China.

Recommendations for intervention for young children with autism spectrum disorders (ASD) focus on early, intensive, and often individual intervention based on methods of applied behavior analysis. In much of the world, there are few options for early intervention. This article examines this question: in a context where intensive and high staff-to-student ratio intervention is not possible, how can provision of high-quality evidence-based intervention be ensured? We consider the case of China, where intervention for young children with autism is provided at diverse educational organizations, and funding limitations impact teacher-to-student ratio. Due to challenges, rigorous use of evidence-based methods often lags behind best practices. This article presents an ethical analysis of the choices educators face and research-based recommendations consistent with the ethical analysis. Given the current context, we recommend a socially valid approach of systematically using group instruction based on ABA principles to increase the effectiveness and intensity of each aspect of intervention programs. While focused on the case of China, recommendations and analysis have implications for other settings with limited resources.

Association between body composition and pulmonary function in children and young people with cystic fibrosis.

OBJECTIVES: Body mass index (BMI) has significant limitations when assessing nutritional status in pediatric patients with cystic fibrosis (CF). We evaluated whether measurements of lean body mass (LBM) and fat mass (FM) are more sensitive nutritional parameters by testing their association with pulmonary function in adolescent patients with CF. METHODS: Sixty-nine male and female adolescents with CF were studied (age: 14.5 ± 2.3, BMI: 19.5 ± 2.3 kg/m2). Dual-energy x-ray absorptiometry (DXA) was used to measure total and segmental (appendicular, truncal) body composition (FM, LBM bone mineral density, and content) as routine care to monitor bone health. Correlation and multiple regression analyses were performed to assess the association among body composition variables and forced expiratory volume in 1 s (FEV1). We also evaluated the influence of the F508del mutation on body composition. RESULTS: FEV1 was significantly associated with total (r = 0.68, P <0.001), truncal (r = 0.71, P <0.001), and appendicular (r = 0.67, P <0.001) LBM, whereas it was not associated with total (r = 0.02, P = 0.89) and truncal (r = 0.04, P = 0.77) FM. BMI had a significant but weaker correlation with FEV1 (r = 0.52, P <0.001) compared with LBM. LBM was the only significant predictor of FEV1 in fully adjusted regression models. CONCLUSIONS: LBM is a significant predictor of pulmonary function in CF adolescent patients. DXA scanning performed as part of routine bone health monitoring in CF can provide important body composition data relevant to clinical interventions that optimize nutritional status. DXA reference data for LBM in non-adult populations are needed to enhance diagnostic assessment and monitor clinical progression of CF.

Improved growth, tolerance and intake with an extensively hydrolysed peptide feed in infants with complex disease.

BACKGROUND & AIMS: Infants with complex medical conditions often display faltering growth due to elevated nutritional requirements, poor intake and intolerance of feeding with malabsorption and maldigestion. As a result their nutritional management can be extremely challenging and enteral nutritional support is required. This study aimed to investigate the effectiveness, tolerance and acceptability of nutritional support with a specially formulated, paediatric peptide feed in infants with complex disease and signs of growth faltering with their current nutritional management. METHODS: This prospective intervention study investigated gastrointestinal (GI) tolerance, nutritional intake and compliance with feeding, anthropometry and growth in 18 infants (mean age 6.11 months ± 4.69, mean weight 4.97 kg ± 1.71) during 28 days of enteral nutritional support with a paediatric (1 kcal/ml) readymade peptide feed. RESULTS: GI tolerance to nutritional support with a peptide enteral feed was good and either improved or remained stable over the study. Compliance was excellent (94.0% ± 12.6), total energy intake improved (+23 ± 42 kcal/kg, p = 0.037) and mean weight (0.61 kg ± 0.31, p = 0.0001), length (1.89 ± 1.77 cm, p = 0.0001), head circumference (1.33 ± 1.29 cm, p = 0.001), weight for length Z score (p < 0.05), and weight for age Z score (p < 0.05) significantly improved. Sixty one percent (n = 11) of the infants showed signs of increased growth velocity, moving upwards in terms of their centiles. All 18 infants continued with the paediatric, peptide enteral feed once the study was complete. CONCLUSIONS: This prospective study showed that nutrition support with a specially formulated, paediatric peptide readymade feed was well tolerated, helped to promote growth, and can be considered suitable for use in infants with complex disease and faltering growth who are unable to tolerate a whole protein feed.

Disability and family in the People's Republic of China: implementation, benefits, and comparison of two mutual support groups.

BACKGROUND: The authors and 2 Chinese parents established 2 support groups in China. One group was for parents of children with autism, and the other was for young adults with either mental health issues or intellectual disability, and their parents. The purpose of this study was to examine the meaning and effectiveness of these groups from the parents' perspectives. METHOD: Qualitative interviews and questionnaires were completed by members of the groups, across the first 16 months. Facilitator monthly reports were also analysed. RESULTS: Members of both groups found the groups provided a feeling of belonging and a place to interact with similar people. Differences existed relating to perspectives on the purpose of the groups and how families benefited, as well as in participation rates. Suggestions were provided by members. CONCLUSIONS: Implications of the differences in participation and desires of the parents are considered, including the understanding and perceptions of various disabilities in China.

Bamboo shoots after the rain: development and challenges of autism intervention in China.

The purpose of this study was to gain an in-depth understanding of autism intervention in China, including history, progress, and current challenges. This qualitative research study included interviews with experienced professionals and observation at autism intervention organizations. Analysis of this empirical data led to three themes regarding this field. First, the development of the field can be described using the Chinese expression, mozhe shitou guohe (feeling stones to cross the river). Owing to limited exposure to outside information, methods are often created independent of research-based best practices. Second, autism intervention in China has had a strong, and until recently, almost exclusive, focus on young children. Finally, there are continued challenges to providing effective services that relate to the desires of parents and professionals to provide 'more'; a focus on quantity may be preventing a focus on quality. The article concludes with an analysis of the findings and practical implications that may be used by practitioners or scholars planning to do work in China.

Vitamin D in children with cystic fibrosis.

PURPOSE: The Cystic Fibrosis Trust in 2007 published a recommended target of 75-150 nmol/L for 25-hydroxyvitamin D (25-OHD). In 2008 we found that only 10% of pancreatic insufficient (PI) children met this target. An increase in supplementation was implemented and a repeat audit performed in 2010. METHODS: PI children ≥1 year under sole-care in our regional centre were included. Vitamin D3 supplementation increased by >450% to either 3800 IU/day liquid or 800 IU daily plus 20,000 IU weekly tablets. In 2010 pancreatic sufficient (PS) children were also audited separately. RESULTS: The median 25-OHD level increased from 51.5 nmol/L in 2008 (n=78, 10% >75 nmol/L) to 72 nmol/L in 2010 (n=72, 51% >75 nmol/L), p<0.0001. In PS children (n=15 in 2010) 87% had 25-OHD levels <75 nmol/L. CONCLUSIONS: A substantial increase in supplementation led to a significant increase in 25-OHD levels but around half still failed to reach the recommended target.

Should we welcome a cure for autism? A survey of the arguments.

Substantial research efforts have been devoted to developing a cure for autism, but some advocates of people with autism claim that these efforts are misguided and even harmful. They claim that there is nothing wrong with people with autism, so there is nothing to cure. Others argue that autism is a serious and debilitating disorder and that a cure for autism would be a wonderful medical breakthrough. Our goal in this essay is to evaluate what assumptions underlie each of these positions. We evaluate the arguments made on each side, reject those that are implausible and then highlight the key assumptions of those that remain.

End-of-life decision-making, the principle of double effect, and the devil's choice: a response to Roger Magnusson.

Recently, the principle of double effect has come under scrutiny by Magnusson who believes it provides a subterfuge for those who act so as to end the lives of their patients. Specifically, he argues that the conceptual distinction between foresight and intention is dubious and, moreover, renders patients vulnerable to involuntary euthanasia. At the same time, Magnusson wants to protect doctors from criminal liability when faced with (what he understands to be) a "devil's choice" between ending the life of a patient or under-treating pain. Hence, Magnusson proposes that, subject to specific conditions, a so-called "defence of necessity" be recognised through either common law doctrine or legislation. However, to safeguard this defence, he must rely on what he most wants to reject: a fundamental aspect of the principle of double effect.

Nursing involvement in euthanasia: how sound is the philosophical support?

Preference utilitarians are concerned to maximize the autonomous choices of individuals; for this reason, they argue that nurses ought to advocate for those patients who desire assistance with ending their lives. This approach prompts us to consider, then, the moral validity of nursing involvement in measures intended to end the lives of patients. In this article, the terms of preference utilitarianism are set out and considered in order to determine whether this approach offers sufficient philosophical support for sanctioning a role for nursing in euthanasia. Ultimately, it is found that preference utilitarianism is lacking in this respect, as well as in its fitness for guiding nursing activity in general. In particular, it is found that nurses are required to exchange a handmaiden relationship with the medical profession for an equally undignified relationship with patients. If nursing involvement in measures intended to end the lives of patients is to find sufficient philosophical support, then we need to look elsewhere.

Nursing involvement in euthanasia: a 'nursing-as-healing-praxis' approach.

In an earlier article, it was found that the terms of preference utilitarianism are insufficiently sound for guiding nursing activity in general, including in relation to nursing involvement in euthanasia. In this article, I shall examine the terms of a more traditional philosophical approach in order to determine the moral legitimacy, or otherwise, of nursing engagement in measures intended to end the lives of patients. In attempting this task, nursing practice is considered in light of what I shall call a 'nursing-as-healing-praxis' approach which includes an account of the moral purpose of nursing and the virtues necessary for realizing that purpose. Ultimately, it is concluded that the terms of this approach rule out the involvement of nurses in euthanasia such that if euthanasia can be justified at all, those outside the nursing profession must provide for its administration.

Financial incentives, cross-purposes, and moral motivation in health care provision.

Financial incentives and disincentives are fundamental to a category of proposals, usually characterised as forms of managed care, whereby the pecuniary interests of health care providers are directly affected by their clinical decision-making. Presently, Australian health care administrators and private insurers are adopting financial incentives as a means of ensuring provider compliance with 'health outcome' and cost-constraint objectives. To the extent that this has occurred, health-care relationships are transformed to emulate, more closely, a commercial transaction. This paper questions the ideological assumptions which inform the use of financial incentives in the health care domain and raises concerns with regard to the potential for financial incentives to undermine the moral integrity of clinical decision-making. It also challenges the legitimacy of rationing health care resources through the use of this measure, particularly when adopted by private insurers of health care.