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People with intellectual disabilities can be abused in all settings: homes, communities, and services. Reducing this abuse requires attention be paid to people who are engaged with people with intellectual disabilities, who were largely overlooked by a neoliberal inquiry focused on individuals. Displacing neoliberalism has been further impeded by its recent combination with social media, which has engendered "cultural homogenisation": the further spread and sustenance of the same ideas. This article aims to offer a fundamental critique of the Disability Royal Commission's (the Commission) inquiry by revealing the way neoliberal ideology has shaped its recommendations; and to identify positive alternatives. Arguments: (1) Neoliberal individualism is a powerful but invisible doctrine. Its focus on choice and autonomy has generated concern to provide accessible information, irrespective of its feasibility; and concern to eliminate restrictive practices, irrespective of equally important needs of staff and parents. (2) "Datafication" intended to monitor and improve otherwise unregulated markets is expensive, ineffective, and impedes engagement. (3) The only meaningful adult life envisaged is paid work, despite a meagre and shrinking number of people with intellectual disabilities obtaining jobs. (4) The limitations of a legal inquiry are identified. (5) Alternatives to the promotion of voice, choice, and work are explored. Exhausted neoliberal ideology led the Commission astray. Rather than continuing to enact neoliberal solutions, two different initiatives that are more likely to disrupt the status quo are proposed: replacing legal intervention with public health approaches to reducing violence in all settings; and developing new "counter-publics" of fun and belonging that connect people and their consociates. [ABSTRACT FROM AUTHOR]

Introduction: This qualitative research study was conducted to develop a novel, comprehensive, patient-reported outcome measure (PRO), the "Symptoms and Impacts of Androgen Deprivation Therapy (ADT) for Prostate Cancer" (SIADT-PC), assessing hormonal therapy-related symptoms and their impacts on men with advanced prostate cancer. Methods: Concept elicitation (CE) interviews were conducted among adult men with prostate cancer to evaluate their experiences with ADT. Based on key symptom and impact concepts mentioned, an initial PRO measure was developed. The draft measure was further assessed in cognitive debriefing (CD) interviews with men with prostate cancer, in which participants reviewed items, response options, and recall periods. Initial item-based psychometric analyses were conducted using interview data. The draft questionnaire was revised on the basis of participant feedback, quantitative psychometric results, and consultation with clinical experts. Results: A total of 21 participants were interviewed (CE concept elicitation, n = 12; CD cognitive debriefing, n = 17; n = 8 completed both). Mean participant age (SD) was 59.7 (8.7) years and 76.2% were white. The de novo SIADT-PC measure consists of 27 items: 11 symptoms (e.g., fatigue, hot flashes, and erectile dysfunction), 2 long-term symptoms (e.g., weight gain), 10 impacts (e.g., impacts on physical activities and relationships), and 4 related to mode of administration (i.e., injection-site reactions). Items were assessed with a 5-point verbal rating scale, with answer choices that capture frequency or severity. Conclusions: Once fully validated, this de novo measure may be used in clinical studies and clinical practice to assess hormone therapy-related symptoms and impacts, enabling physicians to identify timely and appropriate interventions. [ABSTRACT FROM AUTHOR]

(i) While policy makers across the developed world are focused on reducing, and wherever possible stopping restrictive practices, care staff think it more important to prioritise safety for all; and work health and safety regulators agree with them. The injuries through falls from wheelchairs, tilt tables, or losing their balance at the top of stairs underline the consequences of not just intellectual but multiple kinds of disability that require staff to master many distinct types of knowledge. Usually, managers or qualified professionals are expected to communicate key points of information about each resident to direct care staff, but very high levels of turnover and "churn" (staff being moved around different units of care in a large organisation) in leaders and direct care staff makes this an enormous task. Commentary on "Australian work health and safety enforcement regarding service provision to people with disabilities: lessons for service providers" (Hough, Bigby, & Marsh, 2023). [Extracted from the article]

In Anglophone countries, the 40% of people with intellectual disabilities who show challenging behaviour, mental health problems, or both, are usually offered behavioural rather than emotional interventions. Yet much of their distress has originated in emotionally damaging personal histories, since children with intellectual disabilities are much more likely to experience adverse childhood experiences that predict significant mental health problems in adults. This clinical research review addresses that. It raises two issues: first, provision of effective support to parents (considered elsewhere); and second (the focus of this article), how services for distressed adults can address the untapped potential for development and growth in their emotional lives. A key finding in favour of an attachment perspective is that the emotional development of people with intellectual disabilities lags significantly behind their cognitive development, and their level of emotional rather than cognitive development predicts challenging behaviour. Two attachment assessments that can frame intervention have been considered: the Scale of Emotional Development–Short; and the Adult Attachment Projective Picture System. Related system changes necessary for services to implement attachment-informed interventions were then identified: specialisation rather than eclecticism, ensuring that trauma-informed care is applied with fidelity, and staff stability. [ABSTRACT FROM AUTHOR]

Otitis media (OM) in dogs can occur as a primary condition instead of as an extension of an otitis externa (OE), characterized by the presence of fluid in the middle ear (ME) referred to as OM with effusion (OME). OME has been reported in a brachycephalic breed (boxer), and the same condition is described as primary secretory OM in Cavalier King Charles Spaniels. These dogs can be asymptomatic or present with pain, facial nerve paralysis and reduced hearing. This report describes two cases of OME with associated neurologic signs in Boston terriers with no previous history of OE, normal external ear canals and tympanic membranes. Neurologic evaluation revealed right head tilt along with vestibular ataxia and frequent walking tight circles to the right in case 1, and a dull mentation with a right‐sided head tilt and torticollis, vestibular tetra‐ataxia, ambulatory tetraparesis and circling to the right in case 2. MRI imaging of the brain was performed. Results showed bilateral OM with right‐sided otitis interna and equivocal associated otogenic meningitis in case 1 and right‐sided OM in case 2. Myringotomy was performed, and both dogs' ME sampled for cytology that only revealed inflammatory cells; and bacterial cultures which revealed a light growth of Pseudomonas aeruginosa in case 1. ME were flushed with sterile saline. Oral glucocorticoids and antibiotics based on the susceptibility results, and a compound antibiotic and glucocorticoid ear solution were prescribed to case 1. Neurologic improvement was observed a few days after the appointment, but a mild right‐sided head tilt remained evident. Owner of case two elected humane euthanasia due to patient respiratory difficulties upon anaesthetic recovery and other concurrent healthy concerns. Current findings reinforce that brachycephalic dogs may be prone to develop OME, and advanced imaging tests are key to the diagnosis. [ABSTRACT FROM AUTHOR]

Children's naïve theories about causal regularities enable them to differentiate factual narratives describing real events and characters from fictional narratives describing made-up events and characters (Corriveau, Kim, Schwalen, & Harris, Cognition 113 (2): 213–225, 2009). But what happens when children are consistently presented with accounts of miraculous and causally impossible events as real occurrences? Previous research has shown that preschoolers with consistent exposure to religious teaching tend to systematically judge characters involved in fantastical or religious events as real (Corriveau et al., Cognitive Science, 39 (2), 353–382, 2015; Davoodi et al., Developmental Psychology, 52 (2), 221, 2016). In the current study, we extended this line of work by asking about the scope of the impact of religious exposure on children's reality judgments. Specifically, we asked whether this effect is domain-general or domain-specific. We tested children in Iran, where regular exposure to uniform religious beliefs might influence children's reasoning about possibility in non-religious domains, in addition to the domain of religion. Children with no or minimal schooling (5- to 6-year-olds) and older elementary school students (9- to 10-year-olds) judged the reality status of different kinds of stories, notably realistic, unusual (but nonetheless realistic), religious, and magical stories. We found that while younger children were not systematic in their judgments, older children often judged religious stories as real but rarely judged magical stories as real. This developmental pattern suggests that the impact of religious exposure on children's reality judgments does not extend beyond their reasoning about divine intervention. Children's justifications for their reality judgments provided further support for this domain-specific influence of religious teaching. [ABSTRACT FROM AUTHOR]

From an early age, children are taught norms about socially-acceptable behaviors; however, children's ability to recognize these norms often predates their tendency to follow them. This conflict between understanding and action has been predominantly studied in cases when enacting the norm would be costly for the child (i.e. when sharing would result in forgoing resources), but is underexplored in more low-cost scenarios. The current study examined the gap between children's knowledge and behavior in a context with a low personal cost: telling a prosocial, or white, lie. Children (N = 46) evaluated objectively poor drawings in three contexts: in one context, children were asked how a third-party character should act in a story (to assess knowledge) and in the other two contexts, children were asked to provide real-time feedback to another person and to a puppet (to assess behavior). Results indicated that children endorsed prosocial lying norms (i.e. said the story character should give the drawing a good rating) at a significantly higher rate than they demonstrated through their own lie-telling behaviors (i.e. their willingness to give social partners good ratings). These data indicate that the discrepancy between children's knowledge of social norms and their actual behaviors cannot simply be attributed to the personal costs of enacting social norms. Instead, this competence-performance gap may be due to the fact that children are often taught social rules via hypothetical situations but enacting behaviors in real-world situations may require additional skills, such as inhibition and the processing of complex, multimodal social cues. [ABSTRACT FROM AUTHOR]

The scale of cumulative cultural evolution (CCE) is a defining characteristic of humans. Despite marked scientific interest in CCE, the cognitive underpinnings supporting its development remain understudied. We examined the role cognitive flexibility plays in CCE by studying U.S. children's (N = 167, 3–5-year-olds) propensity to relinquish an inefficient solution to a problem in favor of a more efficient alternative, and whether they would resist reverting to earlier versions. In contrast to previous work with chimpanzees, most children who first learned to solve a puzzlebox in an inefficient way switched to an observed, more efficient alternative. However, over multiple task interactions, 85% of children who switched reverted to the inefficient method. Moreover, almost all children in a control condition (who first learned the efficient method) switched to the inefficient method. Thus, children were keen to explore an alternative solution but, like chimpanzees, are overall conservative in reverting to their first-learned one. [ABSTRACT FROM AUTHOR]

Background: An observer-reported outcome (ObsRO) measure assessing both symptom control and health-related quality of life (HRQoL) in children with asthma younger than 6 years is lacking. The objective of this study was to evaluate the content validity of the Pediatric Asthma Questionnaire (PAQ), a newly developed 6-item ObsRO measure for caregivers of children aged 2–5 years diagnosed with asthma. Results: In-depth, qualitative interviews were conducted with 15 parents or caregivers. The first part of the interview was an open-ended discussion whereby participants were asked to describe their observations of their child's asthma symptoms and HRQoL impacts followed by a cognitive debriefing of a draft version of the PAQ. The most frequently reported symptoms were coughing (n = 15, 100%), wheezing (n = 14, 93%), and trouble breathing (n = 10, 67%). Overall, participants found the PAQ easy to complete and relevant to their child's experience with asthma, with most reporting the instructions, response scales, and recall period for the items to be appropriate. The majority of participants (93%) believed they could accurately report on the items included in the PAQ based on their observations of their child's asthma symptoms and impacts, or reliably get the information from the child's teacher, school, or caregiver when their child was not in their presence. One item was modified based on feedback about the phrase "oral steroids" to clarify modes of administration. A few other minor changes were incorporated into the PAQ following suggestions from participants, including replacing the phrase "how often" with "how many days" in one of the items to improve clarity and overall consistency with the response options. Conclusion: Qualitative data support the content validity of the PAQ as a fit-for-purpose and well-understood 6-item observer-reported outcome measure to evaluate both symptoms and asthma-specific HRQoL impacts experienced by pediatric asthma patients aged 2–5 years for use in clinical and real-world studies. [ABSTRACT FROM AUTHOR]

Five‐ to 11‐year‐old U.S. children, from either a religious or secular background, judged whether story events could really happen. There were four different types of stories: magical stories violating ordinary causal regularities; religious stories also violating ordinary causal regularities but via a divine agent; unusual stories not violating ordinary causal regularities but with an improbable event; and realistic stories not violating ordinary causal regularities and with no improbable event. Overall, children were less likely to judge that religious and magical stories could really happen than unusual and realistic stories although religious children were more likely than secular children to judge that religious stories could really happen. Irrespective of background, children frequently invoked causal regularities in justifying their judgments. Thus, in justifying their conclusion that a story could really happen, children often invoked a causal regularity, whereas in justifying their conclusion that a story could not really happen, they often pointed to the violation of causal regularity. Overall, the findings show that children appraise the likelihood of story events actually happening in light of their beliefs about causal regularities. A religious upbringing does not impact the frequency with which children invoke causal regularities in judging what can happen, even if it does impact the type of causal factors that children endorse. [ABSTRACT FROM AUTHOR]

Background: Crohn's disease (CD) is a chronic inflammatory condition of the gastrointestinal tract that affects people across the age spectrum but often starts in childhood or early adulthood. Despite this, almost all published research examining the symptomatic and health-related quality of life (HRQL) experiences of CD has been conducted in an adult population. Studies providing a comprehensive overview of the lived experience of pediatric and adolescent CD are virtually non-existent. The experiences of younger children aged 2–7 years are especially unknown. Results: A total of 49 participants (31 children and 18 parents) were interviewed. This included 11 dyads (i.e., parents and children from the same family). Analyses were conducted based on reporter-type (patient self-report vs parent observer-report) and age subgroups (ages 2–4 vs 5–7 vs 8–11 vs 12–17). Key symptoms were identified across the age subgroups and reporter types. Abdominal/stomach pain, passing gas/feeling gassy, diarrhea/liquid stools, fatigue/tiredness, bowel urgency, blood in stools, stomach cramping, constipation, and incomplete evacuation were discussed most frequently. The most common HRQL impacts included impact on physical activity, school, social life, and mood (i.e., feeling sad/low), and were mostly consistent between reporter type and across age spectrum. Concept agreement between parents and children in the dyad analysis was > 60% for most symptoms and impacts. Conclusions: Qualitative interviews revealed the substantial symptom and HRQL burden of pediatric CD from the child and parent perspectives and that disease experiences were largely consistent across the age range and based on both reporter perspectives. This is an important first step towards implementing a robust measurement strategy for the assessment of symptoms and HRQL impacts in pediatric CD. [ABSTRACT FROM AUTHOR]

We asked whether high levels of religiosity are inconsistent with a high valuation of science. We explored this possibility in three countries that diverge markedly in the relation between the state and religion. Parents in the United States (n = 126), China (n = 234) and Iran (n = 77) completed a survey about their personal and parental stance towards science. The relation between religiosity and the valuation of science varied sharply by country. In the U.S. sample, greater religiosity was associated with a lower valuation of science. A similar but weaker negative relation was found in the Chinese sample. Parents in the Iranian sample, by contrast, valued science highly, despite high levels of religiosity. Given the small size of our United States and Iranian samples, and the non‐probabilistic nature of our samples in general, we caution readers not to generalise our findings beyond the current samples. Despite this caveat, these findings qualify the assumption that religiosity is inconsistent with the valuation of science and highlight the role of sociocultural context in shaping adults' perception of the relation between religion and science. [ABSTRACT FROM AUTHOR]

Parents in Iran, China and the United States were asked 1) about their potential influence on their children's religious and scientific views and 2) to consider a situation in which their children expressed dissent. Iranian and US parents endorsed their influence on the children's beliefs in the two domains. By contrast, Chinese parents claimed more influence in the domain of science than religion. Most parents spoke of influencing their children via Parent-only mechanisms in each domain (e.g., discussion, teaching), although US parents did spontaneously note Multiple sources for the transmission of religious views (e.g., church, other influential adults). Parents proposed a similar stance towards children's dissenting religious and scientific views. Chinese and US parents were more likely to express Supportive approaches and Iranian parents were more likely to express a Directive approach by comparison. The present research informs our understanding of the cultural transmission of views about science and religion. [ABSTRACT FROM AUTHOR]

Teaching supports the high‐fidelity transmission of knowledge and skills. This study examined similarities and differences in caregiver teaching practices in the United States and Vanuatu (N = 125 caregiver and 3‐ to 8‐year‐old child pairs) during a collaborative problem‐solving task. Caregivers used diverse verbal and nonverbal teaching practices and adjusted their behaviors in response to task difficulty and child age in both populations. U.S. caregivers used practices consistent with a direct active teaching style typical of formal education, including guiding children's participation, frequent praise, and facilitation. In contrast, Ni‐Vanuatu caregivers used practices associated with informal education and divided tasks with children based on difficulty. The implications of these findings for claims about the universality and diversity of caregiver teaching are discussed. [ABSTRACT FROM AUTHOR]

The article offers information on dedifferentiation describes a change that occurred in many developed countries during the 1990s from regarding people with intellectual disabilities as having particular needs resulting from cognitive impairment. Topics include the policy continues to shape health and social care services, and the research on the impact of dedifferentiation on people with intellectual disabilities.

Objectives Content elucidation for patient-reported outcomes (PROs) in paediatric cancer survivorship is understudied. We aimed to compare differences in the contents of five PRO domains that are important to paediatric cancer survivorship through semistructured interviews with paediatric cancer survivors and caregivers, and identified new concepts that were not covered in the item banks of the Patient-Reported Outcomes Measurement Information System (PROMIS). Design Semistructured interviews to collect qualitative PRO data from survivors and caregivers. Setting A survivorship care clinic of a comprehensive cancer centre in the USA. Participants The study included 51 survivors (<18 years old) and 35 caregivers who completed interviews between August and December 2016. Content experts coded the transcribed interviews into ‘meaningful concepts’ per PROMIS item concepts and identified new concepts per a consensus. Frequencies of meaningful concepts used by survivors and caregivers were compared by Wilcoxon rank-sum test. Results For pain and meaning and purpose, ‘Hurt a lot’ and ‘Purpose in life’ were top concepts for survivors and caregivers, respectively. For fatigue and psychological stress, ‘Needed to sleep during the day’/‘Trouble doing schoolwork’ and ‘Felt worried’ were top concepts for survivors, and ‘Felt tired’ and ‘Felt distress’/‘Felt stressed’ for caregivers. Survivors reported more physically relevant contents (eg, ‘Hard to do sport/exercise’; 0.78 vs 0.23, p=0.007) for pain, fatigue and stress, whereas caregivers used more emotionally relevant concepts (eg, ‘Too tired to enjoy things I like to do’; 0.31 vs 0.05, p=0.025). Both groups reported positive thoughts for meaning and purpose (eg, ‘Have goals for myself’). One (psychological stress, meaning and purpose) to eleven (fatigue) new concepts were generated. Conclusions Important PRO contents in the form of meaningful concepts raised by survivors and caregivers were different and new concepts emerged. PRO measures are warranted to include survivorship-specific items by accounting for the child’s and the caregiver’s viewpoints. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to further understand the needs of carers when a relative with dementia is admitted to an organic impatient ward. Design/methodology/approach: A constructivist grounded theory approach was employed to generate a substantive theory to understand the needs of carers and how staff perceive carer needs when a relative is admitted to a dementia ward. Five relatives and six members of staff were interviewed using purposive and theoretical sampling. Interview transcripts were analysed using initial, focused and theoretical coding using constant comparative methods to develop the end theory. Findings: The grounded theory concluded that carers have three categories of needs: "The Safe and Cared for Relative", "The Informed Carer and "The Understanding, Responsive and Available Service". Underpinning the needs are the relationships between carers, their relative and staff. Three barriers were identified which can impact on these needs being effectively met. These identified barriers were: Loss, Time and Ineffective Communication. Originality/value: The grounded theory demonstrates that carers needs fundamentally relate to their relatives being safe and cared for and being included and informed during the admission. Relationships can be ruptured when a barrier prevents the needs from being effectively met. Recommendations are made to aim to reduce the impact of the barriers and to aid staff in developing their understanding of the carer experience. [ABSTRACT FROM AUTHOR]

The "prescription" of humans' social learning bifocals is fine-tuned by cultural norms and, as a result, the readiness with which the instrumental or conventional lenses are used to view behavior differs across cultures. We present evidence for this possibility from cross-cultural work examining children's imitation and innovation. [ABSTRACT FROM AUTHOR]

Background: PROMIS Pediatric patient-reported outcome measures were developed with children from the general population, and their content validity has not been established in children with chronic disease. This study was done to evaluate the content validity of the PROMIS Pediatric Pain Interference and Fatigue measures in children 8–17 years-old with Crohn's disease and the PROMIS Pediatric Fatigue, Sleep Disturbance, and Sleep-related Impairment measures for children 8–17 years-old with chronic kidney disease. Methods: We conducted semi-structured interviews with individuals affected by Crohn's disease and chronic kidney disease. The interviews were done to elicit children's lived experiences of the PROMIS outcomes of interest. We used deductive content analysis to contrast the participants' reports of their symptoms and impacts on daily life with existing conceptual frameworks for the PROMIS measures, each of which was developed with input from children in the general population. Results: On average, we elicited an average of 7 pain interference and 7 fatigue concepts from Crohn's disease participants (n = 37), while chronic kidney disease participants (n = 26) provided 9 concepts for fatigue, 4 for sleep disturbance, and 7 for sleep-related impairment. Concept saturation was achieved after 16–19 interviews across the four PROMIS measures. Children with these two chronic health conditions reported the same breadth and types of lived experiences as children from the development samples drawn from the general population. Conclusion: The study supports the content validity of several PROMIS Pediatric measures for children with Crohn's disease and chronic kidney disease. These findings provide evidence that PROMIS Pediatric measures, developed as universally relevant patient-reported outcomes, may be more broadly applicable to children with chronic disease. [ABSTRACT FROM AUTHOR]

Can neoliberal societies make community participation happen? Clifford Simplican's ([5]) welcome observations help to renew intellectual disability research and practice, not least by questioning the entrenched idea that community participation only refers to relationships with non-disabled, non-family, and non-staff others. Clifford Simplican ([5]) has considered the fertility of the idea "community participation" by drawing on two different Davises: K. Davis ([6]) and M. Davis ([7], [8]). Reportedly, K. Davis ([6]) extended M. Davis' (1986) thinking to feminist considerations of intersectionality and it is K. Davis' (2008) account that suffuses Clifford Simplican's ([5]) article. [Extracted from the article]

This commentary considers what the three different issues that the authors combine have in common, what the evidence is for them, and social science research that reveals the complexity of conversations between doctors and patients about serious health conditions. It examines their implicit claim that there are no questions to answer about the quality of life experienced by people with all types of ID and their families, and what labelling these three issues as "eugenics" is likely to achieve. [ABSTRACT FROM AUTHOR]

The current study used a novel methodology based on multivocal ethnography to assess the relations between conformity and evaluations of intelligence and good behavior among Western (U.S.) and non-Western (Ni-Vanuatu) children (6- to 11-year-olds) and adolescents (13- to 17-year-olds; N = 256). Previous research has shown that U.S. adults were less likely to endorse high-conformity children as intelligent than Ni-Vanuatu adults. The current data demonstrate that in contrast to prior studies documenting cultural differences between adults' evaluations of conformity, children and adolescents in the United States and Vanuatu have a conformity bias when evaluating peers' intelligence and behavior. Conformity bias for good behavior increases with age. The results have implications for understanding the interplay of conformity bias and trait psychology across cultures and development. [ABSTRACT FROM AUTHOR]

Adults in the U.S. and China were asked to make judgments about the existence of a variety of scientific and religious entities, including God, germs, and evolution. Overall, participants expressed more confidence in the existence of scientific as compared to religious entities. This differential confidence in the two domains emerged in China as well as in the U.S. Moreover, it emerged even when participants were questioned about items attracting a lower overall level of consensus. Nevertheless, the religious beliefs of individual participants moderated the degree of differentiation between scientific and religious entities. Adults reporting low levels of religiosity expressed greater belief in the existence of scientific than religious entities but adults reporting high levels of religiosity expressed equivalent levels of belief in the existence of each domain. This pattern emerged in both China and the U.S. Testimony about unobservable phenomena has a similar impact on adults' pattern of beliefs across two historically distinct cultures. [ABSTRACT FROM AUTHOR]

The article introduce the special issue on evolutionary developmental psychology that represents a synthesis of modern evolutionary theory and developmental psychology, and helps to understand the development of human behavior and cognition. Also briefly discusses the history of this field and researchers provide a collection of theoretical and empirical articles that highlight recent findings and propose promising areas for future research.

This article examines “imagined constructed thought”: speakers giving voice to the inner world of a non-present other. Drawing on 9 hours of video footage of health-care staff discussing patients with intellectual disabilities (ID) during Discovery Awareness sessions, we explored times when the staff presented a possible version of a patient’s thoughts. They used those versions to take a stance on the patient’s inner world, often as a bridge between description of objectively observable phenomena and subjective interpretation of its meaning. It also projected staff’s own stance on what the patient was thinking, both in first position descriptions and as a competitive resource in those given in second position. The findings suggest that presenting the patients’ thoughts from a first-person perspective can be a versatile way of enacting a variety of complex epistemic and empathic actions in this setting. Data are in British English. [ABSTRACT FROM AUTHOR]

Purpose: To compare importance ratings of patient-reported outcomes (PROs) items from the viewpoints of childhood cancer survivors, parents, and clinicians for further developing short-forms to use in survivorship care.Methods: 101 cancer survivors, 101 their parents, and 36 clinicians were recruited from St. Jude Children's Research Hospital. Participants were asked to select eight items that they deemed useful for clinical decision making from each of the four Patient-Reported Outcomes Measurement Information System Pediatric item banks. These item banks were pain interference (20 items), fatigue (23 items), psychological stress (19 items), and positive affect (37 items).Results: Compared to survivors, clinicians rated more items across four domains that were statistically different than did parents (23 vs. 13 items). Clinicians rated five items in pain interference domain (ORs 2.33-6.01; p's < 0.05) and three items in fatigue domain (ORs 2.22-3.80; p's < .05) as more important but rated three items in psychological stress domain (ORs 0.14-0.42; p's < .05) and six items in positive affect domain (ORs 0.17-0.35; p's < .05) as less important than did survivors. In contrast, parents rated seven items in positive affect domain (ORs 0.25-0.47; p's < .05) as less important than did survivors.Conclusions: Survivors, parents, and clinicians viewed importance of PRO items for survivorship care differently. These perspectives should be used to assist the development of PROs tools. [ABSTRACT FROM AUTHOR]

Successful critiques of health policies for people with impaired cognition identify a need for alternatives that go beyond individualism. 'Choice' policy was examined as young people with severe intellectual disabilities moved from special schools to adult services. Wt draw on three cases from a longitudinal cohort study to rxamine the way decisions with and for these young people were made and accounted for. It was not a simple mstter of parents and transition workers hearing about these young people's choices and facilitating what they wented. The data raise questions about discourses of choice ;n ID when referring to people with severe intellectual disabilities: few 'choices' could be considered informed nor made by young people with capacity to make them and many decisions were informed by other ethics. Findings were interpreted through a Deleuzean ethical-relational lens. We identify implications for theory and practice to show how Deleuzean thinking can reinvigorate intellectual disability. [ABSTRACT FROM AUTHOR]

Four tasks (N = 191, 3- to 6-year-olds) examined the effect of instrumental versus conventional language cues on children's imitative fidelity of a necklace-making activity, their memory and transmission of the activity, and their perceptions of functional fixedness. Children in the conventional condition imitated with higher fidelity, transmitted more of the modeled behavior, and showed higher levels of functional fixedness than children in the instrumental condition. There were no differences in children's memory of the activity between conditions demonstrating that memory alone does not explain differences in imitative fidelity. The data demonstrate that children's interpretation of behavior as instrumental or conventional has wide-ranging implications for what children imitate, what they transmit to others, and how they reason about objects' functions. [ABSTRACT FROM AUTHOR]

Background Psychomotor therapy enables people to reflect on the relationship between experiences and feelings by starting from awareness of bodily responses rather than from awareness of emotion. In this study we examine PsyMot (ID), an assessment that directs this psychological therapy. Method Twelve suitable consecutive admissions were recruited from a specialist intellectual disability (ID) assessment and treatment unit for adults. Video-recordings of PsyMot (ID) allowed assessment of interrater reliability (IRR). Treatment goals indicated by PsyMot (ID) were addressed using psychomotor therapy as part of a comprehensive program of interventions. Results Psychomotor therapy was both feasible and popular with patients who participated without any adverse effects. Nine patients completed PsyMot (ID). IRR of the treatment goals identified by all 3 raters was good to excellent in 81% cases, but there were discrepancies for individual items. Conclusions PsyMot (ID) and psychomotor therapy is feasible within this context, and enriched the clinical team's formulation. Further studies of reliability and efficacy should be undertaken. [ABSTRACT FROM AUTHOR]

Accessible summary We asked eight members of staff who were working with people who had a learning disability, and also, complex mental health needs to tell us how they felt about their work., These workers told us that not having enough staff and having a wide range of patients with different needs to look after made their job difficult. We felt they tried to put a 'brave face' on but we felt they worried greatly about working with patients who had complex mental health needs., We did not feel these workers were given enough opportunity to think and talk about their feelings about their work. Staff tried to cope with these difficult thoughts and feelings about their work by trying to forget them or by thinking about other things., Staff need to be given time to think and talk about their work and their feelings towards their patients. This may help them to feel less stressed and more able to cope with their patients and their work., Summary Experiences of eight staff working with people who have a learning disability and complex mental health needs were explored by interviews and analysed using the free association narrative interview approach (Hollway & Jefferson 2000). Participants reported that organisational factors such as not having enough permanent staff and having to manage a complex patient mix impacted upon their work. Participants' unconscious communications were interpreted as evidence that they were experiencing projected anxiety from their patients. Participants did not appear to be given opportunities in work to reflect upon their emotions and often coped by repressing painful experiences or displacing these onto the organisation. Staff would benefit from exploring their conscious and unconscious reactions to their patients. [ABSTRACT FROM AUTHOR]

An ecological approach to understanding insecure attachments and social isolation among people with an intellectual disability is constructed using Gibson's (1979/1986) affordance-based theory. Although environmental affordances and individual limitations interact to limit the development of social competence, we believe that by focusing on the immediate environment, community-based approaches to helping people with an intellectual disability are often ignored, which increases the burden on individual caregivers. A more comprehensive strategy, which extends Gibson's theory of affordances, allows us to consider how higher level social systems influence the immediate environment and provides the context for understanding why successful change occurs when a multifaceted, holistic approach that works on several levels is adopted. Examining these systems within an ecological framework fundamentally redefines our thinking by shifting the focus from a person's disability to a more nuanced understanding of a person's abilities within the context of appropriate environmental supports in which the person's disability becomes less salient. [ABSTRACT FROM AUTHOR]

Background Vulnerability and protection are key concepts within the literature relating to systemic therapy for people with an intellectual disability ((ID)). This paper explores the processes by which these concepts were discussed in systemic therapy sessions. Method Four videotapes of systemic therapy sessions were evaluated using a qualitative design, incorporating thematic and conversation analysis. The videotapes were drawn from systemic therapy sessions with 3 families with an adult with ID. Results Vulnerability and protection themes were identified within the content of therapeutic conversations, including protection from the disability and its consequences; protection from peers, siblings, and the world at large; and protection from emotionally sensitive topics. Protective strategies were also used by all system members through the process of therapy. Key strategies were topic switch and reversals. Conclusions Protection is a key issue. Clinical practice could be enhanced if therapists reflect on the strategies they employ in addressing protection effectively. [ABSTRACT FROM AUTHOR]

In contrast to other forms of family caregiving, becoming the parent or carer of a child with an intellectual disability (ID) implies an ongoing responsibility beyond the attainment of chronological adulthood (; ). At the same time, a discourse of self-determination pervades policy around transition to adult services in ID in England (). In this paper we present a subset of data from a project which aimed to examine how the process of transition from child to adult services in ID is managed. Using data from 8 tape-recorded meetings in which transitions were planned and discussed, we examine what happens when the views of the parent/carer and the young adult are in apparent conflict. Drawing on the growing body of interactional work in the field (eg ; ), we use conversation analysis to examine how professionals manage and negotiate this conflict and how some points of view or courses of action ultimately prevail over others. While the discourse of self-determination may prevail in English policy terms, we show how the fact that parents or carers ultimately have a key role in enabling the choices of the young person has a significant impact on these interactions. [ABSTRACT FROM AUTHOR]

This study examines how those planning futures for young people with moderate-profound intellectual disabilities invoke, deploy and interpret contrasting definitions of adulthood and perceived capacity for autonomy and self-determination. Twenty-eight young people were followed through transition from children's to adult services. This paper incorporates data from interviews with young people, their carers and transition staff. Two discourses around adulthood were identified. One positioned the young people as adults entitled unequivocally to self-determination, invoking policy injunctions to do so. The second qualified the young people's adult status and claims to self-determination, emphasising the obdurate reality of intellectual disability. Transition to adult services for young people with intellectual disabilities raises difficult questions about the relationship between vulnerable young people, families, professionals and society. Reducing these to rigid moral polarities of 'right' and 'wrong' creates an unhelpful context for good decision making. A more constructive approach would include all stakeholders in discerning 'the right thing to do'. [ABSTRACT FROM AUTHOR]

This paper draws upon parental accounts from a study of the process of transition for a cohort of 28 young people with relatively severe intellectual disabilities who left special schools in 2004 and 2005 in two adjacent English localities. This paper examines how parents negotiate these boundaries and position themselves in relation to risk. A primary concern identified by parents during this transition period focuses on the risk of harm facing these vulnerable young people (whether through accidents or through sexual, emotional, physical or financial abuse) as they move into the adult world. These concerns are juxtaposed with discourses that increasingly promote the possibilities for people with intellectual disabilities to express and follow their own wishes and aspirations. For example, the policy agenda in England and Wales actively endorses the start of adult life as a time of opportunity for young people and promotes the values of independence and choice. In accounting for the management of risk in the young people's lives, we conclude that parents navigate complex boundaries between being seen to be over-protective and ‘letting go’; between trusting others to act in the young adults' best interests and allowing these young people the autonomy to negotiate risk. Copyright © 2008 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

This paper explores the experiences of people with borderline and low intelligence when compared to the general population. The aim was to explore whether people with low intelligence, who are rarely considered apart from the general population, might have particular needs in relation to health or social care. The method was secondary analysis of the ONS survey of psychiatric morbidity, 2000. Variables associated with low intelligence were identified and entered into a logistic regression. We found that a person with low intelligence was significantly more likely to be a smoker, have problems with paperwork and be renting their home, and a significant subgroup was more likely to be friendless. The pursuit of social justice and social inclusion may require greater attention to be paid to the health and well-being of people with below-average intelligence. [ABSTRACT FROM AUTHOR]

Background Inclusion is one of four policies for people with disabilities in the UK. Criticisms of its three key attributes – mainstreaming, independent living and employment – are reviewed. Methods This study of 28 young people, most with severe intellectual disabilities, investigated engagement with inclusion at their transition to adult services. Data were collected from the young people where possible; from their carers, mostly parents; and from professionals responsible for brokering transition. Narrative analysis of this material investigated ways in which respondents did or did not engage with the goals of inclusion as defined in various policy documents. Results Both mainstreaming and independent living were experienced as moral imperatives which generated tension for many respondents. Employment was associated with less tension, probably because only a minority of respondents considered it salient. Possible alternative goals invoked by parents/carers and professionals were meaningful activity and same-age social relationships. Conclusions There is a need to acknowledge the moral pressures and judgements arising from inclusion policy that complicate decision-making at transition and to shift the moral horizon away from individual attainments and towards the activities and relationships that take people beyond themselves. [ABSTRACT FROM AUTHOR]

Background Previous research investigating post-traumatic stress disorder assumed that adults with intellectual disabilities would react to trauma in the same way as those in the non-disabled population. This study explored the personal experience of trauma in a small group of adults with intellectual disabilities. Methods Semi-structured interviews, developed from a pilot study involving focus groups, were used to interview six adults with mild intellectual disabilities from a clinical population, about their experiences of trauma. The transcripts were analysed using Interpretative Phenomenological Analysis (IPA). A quantitative measure, the Posttraumatic Diagnostic Scale [PDS; Foa et al. (1997) Psychological Assessment vol. 9, pp. 445–451] was used in conjunction with the individual interviews. Results One theme, whether individuals perceived the world to be a dangerous or a safe place, connected the five themes that emerged from the data. The themes were identified as: (i) how the trauma affected me, (ii) I avoid things that remind me of the trauma, (iii) I am prepared for danger in the future, (iv) the tension of talking or not talking and (v) the struggle of who to blame. Conclusions The results were related to previous theoretical frameworks and the methodological limitations of the research acknowledged. The clinical implications of the findings for disclosure, assessment and therapeutic intervention were discussed. [ABSTRACT FROM AUTHOR]

This article argues that the interpretative and negotiating approach of hermeneutic ethics can inform research into the experiences of people with learning disability more usefully than bioethics. Terms and ideas are defined; philosophers and researchers who have employed them are described; arguments for and against the proposition are considered; it concludes by summarizing the position and its implications. Two final reflections pose questions researchers may find it fruitful to consider, or to discuss with users, carers and professionals. [ABSTRACT FROM AUTHOR]

A small group of experienced community workers providing risk management for men with learning disabilities who sexually offend was studied. Attribution statements participants made about their risk appraisals were analysed using the Leeds Attributional Coding System (LACS). Results highlight the effort participants made to obtain sufficient information. They focused on factors external to the service-user for most effective risk management, but their confidence was undermined by other staff minimizing the importance of such risks. Services that fail to develop specialist risk assessment skills and to address the modest 'economics of effort' required for effective practice may compromise risk management by community staff. [ABSTRACT FROM AUTHOR]

Investigates the link between intellectual disability and transition to adulthood. Psychological transition of young adult; Factors contributing to the maturation of intellectual disability; Transition of students with intellectual disability from school to adult services.