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Introduction: Implementation science (IS) offers methods to systematically achieve the Ending the HIV Epidemic goals in the United States, as well as the global UNAIDS targets. Federal funders such as the National Institutes of Mental Health (NIMH) have invested in implementation research to achieve these goals, including supporting the AIDS Research Centres (ARCs), which focus on high‐impact science in HIV and mental health (MH). To facilitate capacity building for the HIV/MH research workforce in IS, "grey areas," or areas of IS that are confusing, particularly for new investigators, should be addressed in the context of HIV/MH research. Discussion: A group of IS experts affiliated with NIMH‐funded ARCs convened to identify common and challenging grey areas. The group generated a preliminary list of 19 grey areas in HIV/MH‐related IS. From the list, the authors developed a survey which was distributed to all ARCs to prioritize grey areas to address in this paper. ARC members across the United States (N = 60) identified priority grey areas requiring clarification. This commentary discusses topics with 40% or more endorsement. The top grey areas that ARC members identified were: (1) Differentiating implementation strategies from interventions; (2) Determining when an intervention has sufficient evidence for adaptation; (3) Integrating recipient perspectives into HIV/MH implementation research; (4) Evaluating whether an implementation strategy is evidence‐based; (5) Identifying rigorous approaches for evaluating the impact of implementation strategies in the absence of a control group or randomization; and (6) Addressing innovation in HIV/MH IS grants. The commentary addresses each grey area by drawing from the existing literature (when available), providing expert guidance on addressing each in the context of HIV/MH research, and providing domestic and global HIV and HIV/MH case examples that address these grey areas. Conclusions: HIV/MH IS is key to achieving domestic and international goals for ending HIV transmission and mitigating its impact. Guidance offered in this paper can help to overcome challenges to rigorous and high‐impact HIV/MH implementation research. [ABSTRACT FROM AUTHOR]

This paper presents psychology of working theory (PWT) as a framework for addressing career concerns faced by those with chronic health issues. PWT is a relevant framework for contextualizing the lived experiences of clients navigating work and chronic illness. Specifically, individuals with chronic health conditions may face additional barriers to their career development and are at risk for higher incidences of workplace discrimination, job stress, and job loss. Core elements of PWT outlined in this paper are applied to a case study of a client with breast cancer. More specifically, the constructs of decent work, critical consciousness, and career adaptability are applied at the level of the individual and systemic interventions. Issues of equity, access, intersectionality, power, and privilege are highlighted as they relate to the context of work. We offer suggestions for advocacy for career counselors working with clients with chronic illness navigating work and careers. [ABSTRACT FROM AUTHOR]

A Case of Ictal Fear with Various Psychiatric Manifestations and Memory Disturbance in Interictal Stages.Purpose:Ictal emotion corresponds to“affective seizures,” according to the Proposal for Revised Clinical and Electroencephalographic Classification of Epileptic Seizures by the International League Against Epilepsy (ILAE; 1981), and is characterized by the appearance of affective disorders such as fear, depression, pleasure, and anger. In particular, the ictal emotion, in which fear is the most commonly noted emotion, is referred to as“ictal fear.” In the present study, we report a patient with temporal lobe epilepsy, who showed ictal fear associated with various psychiatric manifestations including memory disturbance in the interictal stage that promptly subsided with antiepileptic drug (AED) administration.Case Report:A 24-year-old woman had recurrent episodes fear and anxiety. Family risk factors consisted of major depression in the maternal grandmother, but no familial history of epilepsy. The patient had a history of mumps with fever of 38°C at age 6 years without febrile convulsion. The present illness began around April 1997, when the patient became aware of swelling of the left ear membrane and a tinnitus-like noise, with an occasional feeling of her entire body floating in air. On March 6, 2000, severe giddiness suddenly developed, and from April of that year, she had pronounced drowsiness and hypersomnia. From January 2001, her giddiness and feeling of dizziness became marked, and she was overcome by an unpleasant feeling from January 16 to 17. From January 18 to 19 and on February 7 and 8 she manifested emotional lability. She had a depressive mood on February 22 and reversed to an elated mood the following day. On March 6, she experienced sudden severe left ear pain, which was diagnosed as migraine at a department of neurosurgery in another hospital. In addition, from about this time, anxiety and vague feeling of panic developed. From around April, she experienced autonomic seizures lasting 20 s, characterized by abnormal sensations of gooseflesh and coldness extending from the left posterior neck to cheek. These seizures occurred at a frequency of 20 to 30 times a day. Furthermore, she showed increased anxiety, depressive mood, and palpitations with feeling of left chest constriction in the interictal period. On May 25 and 26, autonomic seizures consisted of sudden severe nausea, and from June were characterized by a feeling of gooseflesh and coldness extending from the upper to lower arms bilaterally. The duration of these seizures was 10–20 s, and the frequency was 10 times/day. From the same period, she had various psychiatric symptoms such as hypobulia, declining activity, and a sense of guilt in the interictal period. From around August, her unpleasant feeling gradually worsened, and her voice became low, and her actions became slow. Furthermore, hypochondriacal and depressive symptoms became more marked, and appetite decreased, with the appearance of insomnia and suicidal ideation. On August 28, generalized tonic–clonic seizures (GTCSs) occurred twice, and after the first GTCS, she had ictal fear lasting 60–120 s, which occurred at a frequency of 4 to 5 times per day. The experience of ictal fear was engendered by the patient imagining a scene in which she was enveloped in the dark by some fearful thing and pursued by something of an unknown nature. Subsequently, her parents witnessed her screaming during the ictal fear. On September 21, she was admitted to our hospital for detailed examinations and treatment.Both the ictal and interictal symptoms improved with increasing doses of carbamazepine (CBZ). Clinical examinations revealed no particular hematologic or biochemical abnormalities, and the neurologic examination was normal. Psychometric examination showed FIQ, 87[verbal IQ (VIQ) 94; performance IQ (PIQ), 82] on the WAIS-R, with procedural memory showing a learning effect in both mirror drawing and tower of Hanoi puzzle. Interictal EEGs showed generalized high-amplitude slow-burst 6- to 7-Hz train, which disappeared after CBZ administration. Fluid-attenuated inversion recovery (FLAIR) images of sagittal magnetic resonance imaging (MRI) revealed high signal intensity areas in bilateral amygdala and hippocampal regions.[99mTc]-HMPAO single-photon emission computed tomography (SPECT) images depicted hypoperfusion findings in the right medial temporal lobe.Discussion:This case had onset of epilepsy at age 20 years, and her symptoms were initially diagnosed as migraine and anxiety disorder. At the time of admission to our hospital, memory disturbance and various psychiatric symptoms such as a sensation of fear, anxiety, and depression were noted, so that the presence of anxiety disorder and dissociative disorder was suspected. However, based on the EEG and brain-imaging findings, a diagnosis of epilepsy was made. The notable features in this case are summarized as follows: (a) simple partial seizures consisting primarily of ictal emotions associated with the experience of fear; (b) interictal symptoms including various psychiatric manifestations such as manic–depressive and anxiety symptoms and memory disturbance; (c) abnormal MRI and SPECT images in the medial temporal lobes, possibly compatible with hippocampal sclerosis; and (d) rapid amelioration of the ictal and interictal symptoms with CBZ administration, accompanied by the disappearance of the generalized high-amplitude slow waves on the EEG.Conclusions:These findings suggest that ictal emotion is induced by localized focal seizures in the hippocampus and the adjacent limbic system including the amygdala. Moreover, the fact that CBZ administration ameliorated the interictal symptoms comprising various psychiatric manifestations and memory disturbances suggests that functional dysfunction associated with enhanced interictal discharges in the limbic system caused the interictal symptoms. Etiologic Analysis of Epilepsy in Children.Purpose:A population-based neuroepidemiologic survey of childhood epilepsy was conducted in the Okayama Prefecture on December 31, 1999, as the prevalence day. We analyzed the presumptive causes in this survey to clarify the causes of childhood epilepsy in the general population.Methods:The segment of the population younger than 13 years in the Okayama Prefecture on the prevalence day was 250,997. The lists of children with epilepsy were collected from the medical records of 84 hospitals and clinics in and around Okayama Prefecture, and 2,220 cases were identified; the prevalence rate was 8.8 per 1,000. In this study, EEGs were examined in 99.3% of the cases. The 2,220 cases, however, included 889 cases with single seizures or seizures induced by fever, because they were diagnosed as epilepsy by definite EEG abnormalities. Generally, cases of single seizures or seizures induced by fever are excluded from epileptic seizures in epidemiologic studies. When the 889 cases are excluded, the prevalence rate for the 1,331 cases decreased to 5.3 per 1,000. The former 2,220 cases and the latter 1,331 cases were designated as group A and group B, respectively. An etiologic analysis was carried out in the two groups.Results:Group A: (a) Presumptive causes were identified in 816 (37.8%) cases, and 1,341 (60.4%) cases had unknown etiology. The other 63 (2.8%) cases were excluded from the total because of a lack of etiologic information. (b) Predisposition to convulsions or epilepsy within second-degree relatives was found in 20.3%. (c) Prenatal causes consisted of genetic neurologic diseases in 1.4%, chromosomal aberrations or malformations in 2.0%, cerebral dysgenesis in 2.0%, intrauterine infection in 0.1%, and congenital hydrocephalus in 0.4%. (d) Perinatal causes consisted of premature birth with a low birthweight in 3.2% and neonatal asphyxia or abnormal delivery in 4.8%. (e) Postnatal causes consisted of encephalitis or meningitis in 2.7%, intracranial hemorrhage or vascular disorder in 0.9%, head trauma in 0.6%, and brain tumor in 0.2%. Group B: (a) Presumptive causes were identified in 562 (42.2%) cases, and 735 (55.2%) cases had unknown etiology. The other 34 (2.6%) cases were excluded from the total because of a lack of etiologic information. (b) Predisposition to convulsion or epilepsy within second-degree relatives was found in 18.9%. (c) Prenatal causes consisted of genetic neurologic diseases in 2.1%, chromosomal aberrations or malformations in 2.8%, cerebral dysgenesis in 2.6%, intrauterine infection in 0.2%, and congenital hydrocephalus in 0.6%. (d) Perinatal causes consisted of premature birth with a low birthweight in 3.9%, and neonatal asphyxia or abnormal delivery in 6.8%. (e) Postnatal causes consisted of encerder in 1.4%, head trauma in 0.8%, and brain tumor in 0.3%. (f) No significant differences in the prevalence of etiologic factors were noted between groups A and B.Conclusions:These findings indicate the etiologic distribution of childhood epilepsy in the general population. Comparison of Neuropsychological Findings Before Temporal Lobectomy Between Patients with Both Amygdalohippocampal Seizures and Psychotic Manifestations and Patients with Only Seizures.Purpose:The objectives of the study were to classify patients with amygdalohippocampal seizures into two groups according to the status of psychotic manifestations such as delusion and hallucination and to compare the neuropsychological findings.Subjects and Methods:We reviewed the neuropsychological findings of 28 patients (14 male, 14 female patients) who underwent temporal lobectomy and classified them into patients with psychotic manifestations such as hallucination and delusion (group P) and patients without them (group N). All patients underwent neuropsychological examinations including the Japanese Wechsler Adult Intelligence Scale–Revised (WAIS-R), Minnesota Multiphasic Personality Inventory (MMPI), Japanese Wechsler Memory Scale–Revised (WMS-R), verbal paired-associates learning test, story recall test, Benton's visual retention test, Rey-Osterrieth's complex figure test, Kana pick-out test, Japanese Raven's colored progressive matrices, and Japanese western aphasia battery.Results:The 28 patients who underwent anterior temporal lobectomy had a mean age at surgery of 36.0 years and mean age at seizure onset of 13.8 years. They were composed of 15 patients with right-sided temporal resection and 13 patients with left-sided temporal resection. According to psychotic manifestations, we classified them into the groups P and N. Group P group consisted of seven patients (25% of all patients) whose mean age at surgery was 39.6 years and mean age at seizure onset was 10.9 years. Group N consisted of 21 patients (75%) whose mean age at surgery was 34.8 years and mean age at seizure onset was 14.8 years. No statistically significant differences were found in the ages at surgery and seizure onset. The scores, determined by using Benton's visual retention test (fail), were higher (p<0.05) in group P than in group N. The scores determined by using the depression (D), psychopathic deviation (Pd), paranoia (Pa), psychasthenia (Pt), schizophrenia (Sc) scales of MMPI were higher (p<0.05) in group P than in group N. The scores of the WMS-R attention/concentration test, verbal paired-associates learning test, story recall test, and Benton's visual retention test (pass) (p<0.05) were higher in group N than in group P. The patient background of group P was as follows: Group P consisted of one male and six females; three of whom had febrile seizures. One patient had right-sided temporal resection, and six patients had left-sided temporal resection. The mean age of psychotic manifestation development was 33.4 years. The psychotic manifestations were characterized by visual hallucinations in three patients, and delusion of reference and persecution in seven patients. The average number of antiepileptic drugs (AEDs) used was 2.9, and the major AEDs were phenytoin, carbamazepine, zonisamide, and clonazepam. Four patients were married, two patients were unmarried, and one patient was divorced. The educational level was junior high school in two patients, high school in three patients, and technical college in two patients. The WAIS-R IQ was 81.9; verbal IQ was 82.6; and performance IQ was 84.6.Conclusions:Group P was distinguished from group N by the clinical scales such as the D (p<0.05), Pd (p<0.05), Pt (p<0.05), Pa (p<0.01), and Sc (p<0.01) scales of the MMPI. Thus the MMPI is a useful tool for determining patients with psychotic manifestations. The attention/concentration results in the WMS-R, verbal paired-associate learning test (hard), story recall test, and Benton's visual retention test findings revealed that patients with both amygdalohippocampal seizures and psychotic manifestations had more severe memory and attention impairments than did the patients with only seizures. Epilepsy: The Clinical Profile, Outcome, and Epilepsy-Related Psychosis.Purpose:This prospective study was conducted to evaluate the clinical profile and the prognostic factors in 1,000 epilepsy patients attending a tertiary care hospital from the year 1996 to 2001.Methods:The evaluation in all cases included clinical assessment, intelligence testing with the Stanford–Binet scale, metabolic workup, EEG, and computed tomography (CT) scan. Magnetic resonance imaging (MRI) and MR angiography (MRA) were done in selected patients. Patients were classified as per the International League Against Epilepsy (ILAE) classification and were followed up with the primary end point of a 1-year seizure-free period. Epilepsy-related psychosis was included as a study parameter in the final 3 years of the study period (500 patients). The psychoses were classified into postictal (immediately after seizures, distinct from the delirious, confusional state after seizures), interictal (with a lucid interval of normal mentation of≥24 h between seizure and psychosis), and chronic psychosis (of>3 months' duration, present all the time). Statistical analysis was done with aχ2 test wherever relevant.Results:The ages of the patients ranged from 7 months to 74 years, with a mean of 30± 8 years; 55% of them were male patients. Of the cases, 59% had localization-related epilepsy, whereas 41% had generalized epilepsy. Myoclonic epilepsy was seen in 5%, and absence seizures, in 3%. On analyzing the etiology of seizures, 66% were cryptogenic or idiopathic, 16% had neurocysticercosis, 8% had tuberculosis, 3% were postinfective, 3% had a vascular etiology, 2% had congenital abnormalities, and 2% were posttraumatic. Twelve (2.4%) patients were diagnosed as epilepsy-related psychosis, of whom eight were male patients. The majority (seven of 12) had complex partial seizures. Postictal psychosis was diagnosed in four patients; seven had acute interictal psychosis, and one patient had chronic psychosis. The interictal and chronic psychoses were schizophreniform, whereas the postictal psychoses were nonspecific. EEG showed a temporal lobe focus in all seven of the complex partial seizures with psychosis and an extratemporal focus in three patients. Two of the patients had normal EEGs. Neuroimaging abnormalities seen in 10 patients included gliosis (three), calcified granulomas (three), medial temporal sclerosis (two), and nonspecific findings (two). Two patients had normal imaging studies.Conclusions:No significant difference was seen in seizure control between the subgroups of patients with generalized and localization-related epilepsy. Our results are in agreement with the recent studies that suggest that the types and causes of seizures are not significantly related to the seizure control. The most predictive factors for good outcome were younger age (p<0.05) and good intellectual development (p<0.05). Earlier studies found 0.5–9% of patients with epilepsy to have epilepsy-related psychosis. Epilepsy-related psychosis was seen in 2.4% of our patients. This factor should be kept in mind by the caregivers of patients with epilepsy. Occupational Ability of Patients with Intractable Epilepsy.Purpose:To examine the occupational ability including interpersonal skills of patients with intractable epilepsy and to identify factors relevant for employment.Methods:Forty-eight patients (36 men, 12 women) with intractable epilepsy were studied. The mean age was 26.6 years (range, 18–49). Average IQ by Wechsler Adult Intelligence Scale–Revised was 61.4 (range, 38–95). Epilepsy diagnoses were symptomatic partial epilepsy, 41; symptomatic generalized epilepsy, six; and idiopathic generalized epilepsy, one. Seizure types were generalized tonic–clonic seizure, 13; complex partial seizure, 29; simple partial seizure, 11; and other seizures, 10. Twenty-one patients had more than one seizure per week. Nineteen patients had seizures with falling that might cause injury. We evaluated the occupational abilities of the patients through observation during occupational therapy and by vocational aptitude tests. At the same time, their employment status 6 to 18 months after leaving the hospital was surveyed. We then compared the abilities of employed patients (Employed) with those of unemployed patients (Unemployed). Fisher's exact test and Mann–WhitneyUtest were used for statistical analyses.Results:(a) Work habits, comprehension, practicality (quickness at work, workmanship), and interpersonal skills were evaluated as normal only in 40%, 6%, 10%, and 23%, respectively, of the patients through observation. The results of vocational aptitude test were generally low. Subsequent employment status was employed, 15; community workshop, five; day care, three; unemployed, 14, and others (including housewife, student), 11. (b) Intelligence scores (IQ; mean± S.D.) were 63.8± 11.1 in the Employed and 63.8± 16.7 in the Unemployed (NS). Comprehension and practicality were evaluated as normal in 13% of the Employed and none of the Unemployed (NS). Overall work habits were evaluated as normal in 67% of the Employed and 7% of the Unemployed (p<0.01). The subitem“asking therapists, greeting” was evaluated as sufficient in 80% of the Employed and 21% of the Unemployed (p<0.01). Interpersonal skills were evaluated as normal in 53% of the Employed and none of the Unemployed (p<0.01); 13% of the Employed and 79% of the Unemployed had a tendency to be isolated from others (p<0.01). As for vocational aptitude tests, the Employed performed better in tests of motor coordination, skilled finger movements, and sorting coins than the Unemployed (p<0.05). Concerning seizure control, none of the Employed and 29% of the Unemployed had seizures with falling during the daytime (NS).Conclusions:Good seizure control, preserved work habits, good interpersonal skills, and skilled motor coots with intractable epilepsy. [ABSTRACT FROM AUTHOR]

The Kenyan Ministry of Health (MOH) and a consortium of nutritionists, researchers and communication, and design specialists developed a novel approach to create an evidence‐based recipe book promoting complementary feeding (CF) in Kenya. The ADAPT approach includes five steps: applied research (A), dialogue with stakeholders (D), adapted behaviour change communication (BCC) theories (A), purpose‐driven visual communication (P), and tailoring to priority audiences (T). Through this approach, the recipe book addresses key knowledge gaps using behaviour change theories and visual communication best practice to increase accessibility, acceptability, retention and motivation for behaviour change. The book addresses barriers to CF identified through formative applied research. Dialogue with stakeholders helped ensure cultural appropriateness and the book's alignment with MOH recommendations and key messages. The book uses behaviour change theories to approach the reader in a respectful way that motivates behaviour change. The use of consistent, purpose‐driven visuals helps ensure key messages are easily understood and accessible to all caregivers regardless of literacy level. The book's tone and content are tailored to its audiences’ attributes, needs and preferences. This five‐step process inspired the development of ADAPT, a novel approach that integrates behaviour change and visual communication for greater impact. This paper outlines how the consortium used the ADAPT approach to develop an evidence‐based book that thoughtfully and holistically addresses a wide range of barriers, provides practical solutions and increases self‐efficacy around CF. It offers a blueprint for public health practitioners from any field who are interested in using visual behaviour change communication to promote healthy behaviour. [ABSTRACT FROM AUTHOR]

When a patient's treatment decisions are the product of delusion, this is often taken as a paradigmatic case of undermined decisional capacity. That is to say, when a patient refuses treatment on the basis of beliefs that in no way reflect reality, clinicians and ethicists tend to agree that their refusal is not valid. During the COVID‐19 pandemic, however, we have witnessed many patients refuse potentially life‐saving interventions not based on delusion but on conspiracy beliefs. Importantly, many of the beliefs espoused by conspiracy theorists resemble delusions in a number of relevant ways. For instance, conspiracy beliefs often posit states of affairs that could not possibly exist in the world, they are recalcitrant in the face of disconfirming evidence, and they tend to put the believer in a state of paranoia. Given these similarities, how should we think about conspiracy theorists' capacity for making clinical decisions? In this paper, I attempt to answer this question by first offering an account of just what makes some set of beliefs count as a conspiracy theory. Second, I attempt to disambiguate conspiracy beliefs from delusions by exploring important conceptual and psychological features of both. Finally, I apply standard criteria for assessing a patient's decision‐making capacity to instances of conspiracy beliefs and argue that, although the picture is muddy, there may be cases in which conspiracy beliefs undermine capacity. I end by exploring the implications that this might have for surrogate decision‐making and addressing potential objections. [ABSTRACT FROM AUTHOR]

This paper investigates dynamic changes in instrumental (i.e., work‐related) tie‐seeking patterns and the structure of a communication network following a downsizing event—whereby many employees are simultaneously eliminated from a network. Our analysis spans a two‐year period and applies a resource‐ and network‐change approach to examine how survivors develop revised resource‐acquisition strategies while repositioning themselves after a downsizing. Our results demonstrate that two temporary logics of tie formation—a suspension of within‐unit homophily and a preference for seeking ties with long‐tenured employees—help employees acquire betweenness centrality during the disruption period. Specifically, we find that disruption initiates a transitional period after downsizing in which new tie‐making logics are employed, including seeking out ties with long‐tenured employees and employees outside of one's department. We observed post‐disruption, during the stabilization period after downsizing, where logics used for tie‐making in the disruption period were abandoned, pre‐disruption tie‐making logics were resumed, and betweenness centrality remained relatively constant. We discuss the theoretical and managerial implications of these results and suggest future research directions. [ABSTRACT FROM AUTHOR]

This paper introduces a novel, temporally sensitive analytical method for qualitative researchers, which is simultaneously timely and necessary given increasing recognition of the fundamental role that time plays in organizational life and scholarship. As a result of this recognition, research designs considering temporality have substantially increased over the past decade. However, while methods for qualitative data collection using longitudinal and 'shortitudinal' designs, in particular qualitative diary methods, have become increasingly common, analytical methods capable of fully exploiting the temporal nature of such data have lagged behind their quantitative counter‐parts, where we see marked progression in analytical methods and procedures. In this paper, we argue that this lack of progression in approaches for analysing qualitative diary data hinders our knowledge and theoretical development when it comes to incorporating temporality, particularly in the exploration of phenomena at individual‐/micro‐levels, arguably most salient to organizational psychology researchers. We respond to these challenges by introducing a novel, step‐by‐step analytical approach that facilitates rigorous incorporation of temporality into the analysis and theorization of micro‐level, qualitative diary data, termed Thematic Trajectory Analysis (TTA). Practitioner points: Existing qualitative analytical methods have limitations when applied to qualitative diary data and have thereby limited the questions that may be explored, and understood, through qualitative data.Offers an alternative, step‐by‐step, analytical approach for researchers and practitioners seeking to understand within‐person changes and dynamism in organizations.Enables the benefits of qualitative diaries to be better exploited by both researchers and practitioners and thereby lead to better understanding of how organizational processes unfold, and in turn, lead to stronger intervention mechanisms.Demonstrates the utility of combing textual and visualized data outputs in understanding complex and dynamic phenomena in organizations. [ABSTRACT FROM AUTHOR]

Aim: Phenomena within the psychosis continuum that varies in frequency/duration/intensity have been increasingly identified. Different terms describe these phenomena, however there is no standardization within the terminology. This review evaluated the definitions and assessment tools of seven terms – (i) 'psychotic experiences'; (ii) 'psychotic‐like experiences'; (iii) 'psychotic‐like symptoms'; (iv) 'attenuated psychotic symptoms'; (v) 'prodromal psychotic symptoms'; (vi) 'psychotic symptomatology'; and (vii) 'psychotic symptoms'. Methods: EMBASE, MEDLINE, and CINAHL were searched during February–March 2019. Inclusion criteria included 1989–2019, full text, human, and English. Papers with no explicit definition or assessment tool, duplicates, conference abstracts, systematic reviews, meta‐analyses, or no access were excluded. Results: A total of 2238 papers were identified and of these, 627 were included. Definitions and assessment tools varied, but some trends were found. Psychotic experiences and psychotic‐like experiences were transient and mild, found in the general population and those at‐risk. Psychotic‐like symptoms were subthreshold and among at‐risk populations and non‐psychotic mental disorders. Attenuated psychotic symptoms were subthreshold but associated with distress, risk, and help‐seeking. Prodromal psychotic symptoms referred to the prodrome of psychotic disorders. Psychotic symptomatology included delusions and hallucinations within psychotic disorders. Psychotic symptoms was the broadest term, encompassing a range of populations but most commonly involving hallucinations, delusions, thought disorder, and disorganization. Discussion: A model for conceptualizing the required terms is proposed and future directions needed to advance this field of research are discussed. [ABSTRACT FROM AUTHOR]

Background: Research on personality in sport is popular because it allows you to forecast the greediness of actions in sports competition situations. The purpose of this paper is to determine which personality traits characterize individual sports champions. Materials and Methods: The subjects of the research were Polish athletes (N = 600) between 20 and 29 years of age from 20 individual sports disciplines (each n = 30). Then, a sample of champions (n = 56) and other individual disciplines athletes (n = 544) was selected from the study population. The Big Five model was used to examine their personality (NEO‐FFI). Results: Individual sports champions were characterized by a lower level of neuroticism, a higher level of extraversion, agreeableness, and conscientiousness in relation to other athletes. Conclusion: Each sports discipline is characterized by slightly different psychological requirements for athletes. The undertaken sports activity shapes the personality, and the shaped personality traits have an impact on taking solutions in the starting situation. The level of intensity of neuroticism, extraversion, agreeableness, and conscientiousness may determine the result in competition in individual sports. [ABSTRACT FROM AUTHOR]

Objectives: To investigate the knowledge and practices of Chinese doctors in the management of osteoporotic fractures after the Chinese osteoporotic fracture guidelines update and aseries of medical education in 2017. Methods: This was a cross‐sectional survey of doctors in 71 cities across Mainland China. Based on the 2017 Chinese guidelines for the diagnosis and treatment of osteoporotic fractures, a questionnaire was designed and pre‐tested for reliability and validity. Doctors were surveyed with the questionnaire after scientific meetings during February 2017 to January 2018 through WeChat or conference digital platforms or in paper form. Descriptive statistics was used to analyze the responses to the questionnaire. Results: Overall, 314 valid questionnaires were confirmed. Regarding diagnosis, 77% agreed that osteoporosis could be diagnosed once an osteoporotic fracture occurred; 83% believed that the bone mineral density criteria for osteoporosis diagnosis would be T ≤ −2.5 SD. For treatment, almost all (99.7%) agreed with anti‐osteoporosis treatment being one of the basic principles of osteoporotic fracture treatment; 71.6% considered bisphosphonates as the most commonly used anti‐osteoporosis drug; 97% believed that patients who have used anti‐osteoporosis drugs should reassess osteoporosis after osteoporotic fractures instead of discontinue; 95% thought that the patients who did not use anti‐osteoporosis medications before osteoporotic fracture should be treated with anti‐osteoporosis drugs after fracture treatment as early as possible; 89% agreed that the standard use of bisphosphonates after osteoporotic fracture would not affect bone healing adversely; 59% believed the course of bisphosphonates treatment for osteoporosis would be 3–5 years, and 27% considered it to be 1–3 years. The patient follow‐up rate was poor: 46% selected follow‐up rate <30%; only 20% selected follow‐up rate >50%. Only 31% of the hospitals had long‐term management programs for osteoporotic fractures. Conclusions: Doctors generally adhered to the updated Chinese guidelines for osteoporotic fractures; frequent participation in medical education can help doctors to increase their awareness of osteoporosis as well as their acceptance and practice of the guidelines. [ABSTRACT FROM AUTHOR]

Background: A new diagnosis of complex post‐traumatic stress disorder, CPTSD, has been agreed by the World Health Organization, WHO, and evidence is needed for what psychological treatment might be effective, particularly from those with experience of the disorder. We used a novel participatory approach to explore patient views and simultaneously studied the impact on the patient researchers of the research process itself. In this paper, we report on the latter section of the study how the involvement in research of patients with CPTSD affected their mental health. Symptoms of CPTSD may include emotional dysregulation, feelings of self‐worthlessness and difficulties in relationships. Objective: The aim of this study section was to explore whether patients' mental health could be promoted through empowering them to participate in research on CPTSD. Design: The study had a qualitative, participatory design. The clinician who led the research (first author) held group meetings with patient researchers to explore the impact of the research process. The clinician also kept notes on the process in a reflective log. Setting and participants: Six patient researchers participated in research with other patients with lived experience of CPTSD in an NHS outpatient unit in a London hospital. Intervention studied: The research process itself was analysed in group meetings with researchers which the clinician recorded and transcribed. Findings: Participation in research may promote increased self‐confidence and social inclusion for those with CPTSD. Conclusion: Involvement in research may be seen as an empowering intervention because patients felt it contributed to recovery. [ABSTRACT FROM AUTHOR]

Three Pillars of Conservation Psychology Authors in this special section investigated the first pillar of conservation psychology by identifying how context shapes behavior. Just how central values are to understanding human behavior in conservation contexts is highlighted by Wallen and Landon's (2020) systematic map of conservation psychology, which shows values are the second-most studied concept. Winkler-Schor et al. (2020 [this issue]) investigated relationships between a typology of values and self-reported conservation behaviors, finding that altruistic (i.e., concern for others' welfare), biospheric (i.e., concern about costs and benefits to ecosystems), and eudaimonic (i.e., concern about pursuit of meaning and self-realization) values are closely associated with private-sphere conservation behaviors that are more often reported than public-sphere behaviors. Next Steps for Conservation Psychology The papers in this special section demonstrate the potential of conservation psychology to enhance conservation theory and practice. [Extracted from the article]

Abstract: In this paper we argue that awareness comes in degrees, and we propose a novel multi‐factor account that spans both subjective experiences and perceptual representations. At the subjective level, we argue that conscious experiences can be degraded by being fragmented, less salient, too generic, or flash‐like. At the representational level, we identify corresponding features of perceptual representations—their availability for working memory, intensity, precision, and stability—and argue that the mechanisms that affect these features are what ultimately modulate the degree of awareness. We conclude the paper by demonstrating why the original interpretations of certain empirical findings that apparently pose problems for our account are, in fact, flawed. [ABSTRACT FROM AUTHOR]

Aim: To systematically review literature on health-related quality of life (HRQoL) of children and adolescents (≤18yo) with cerebral palsy (CP) from low- and middle-income countries (LMICs) to identify trends in HRQoL and areas for future research.Method: We systematically reviewed six key bibliographic databases and two reviewers independently screened results. Peer-reviewed original articles examining HRQoL of children from LMICs were eligible.Results: A total of 22 524 papers were identified, of which 16, from eight LMICs, were included. Four measures of HRQoL were used; Child Health Questionnaire Parent Form 50 (n=5); Paediatric Quality of Life Inventory 3.0 and 4.0 (n=4); CP Quality of Life Questionnaire for Children (n=4); Lifestyle Assessment Questionnaire CP (n=3). Children with CP from LMICs (n=1579; 2-18y) had significantly poorer HRQoL on all instrument dimensions when compared to age-matched controls (p<0.003) and on all except two dimensions when compared to peers in high-income countries (p<0.001). Physical well-being dimensions of HRQoL were poorest overall and associated with impaired motor function.Interpretation: Research to improve HRQoL in LMICs is required and should address all aspects of HRQoL. Future research is recommended to incorporate multi-respondent assessment, utilize both general and CP-specific measures of HRQoL, and delineate adolescents as a unique cohort. What this paper adds Children with cerebral palsy from low- and middle-income countries are at high risk of poor health-related quality of life (HRQoL). Physical well-being was poorest dimension of HRQoL and associated with impaired motor function. [ABSTRACT FROM AUTHOR]

Aim: To determine whether any parent and child report sleep measure tools have been validated in children aged 0-18 years with cerebral palsy (CP).Method: A systematic search of five databases was performed up to June 2017. Studies were included if a sleep measure tool was used to evaluate sleep in children 0-18 years with CP based on international classifications of sleep. Sleep measures were assessed for psychometric data in children with CP.Results: Only one paper which used the Schlaffragebogen für Kinder mit Neurologischen und Anderen Komplexen Erkrankungen (SNAKE) questionnaire met the study criteria. The four other measures frequently used in children with CP had no psychometric data available for their use in children with CP. The SNAKE questionnaire has been validated only in children with CP in Gross Motor Function Classification System level V. The Sleep Disturbance Scale for Children and the Pediatric Sleep Questionnaire had the strongest psychometric properties in typically developing children, but has not yet been validated in children with CP.Interpretation: Current sleep measures being administered in typically developing children are also often used in children with CP, but have not been well validated in this group of children.What This Paper Adds: There are no condition specific measures of sleep in children with cerebral palsy (CP). The Schlaffragebogen für Kinder mit Neurologischen und Anderen Komplexen Erkrankungen (SNAKE) questionnaire is validated for children with CP in Gross Motor Function Classification System level V. A framework to design a CP specific sleep questionnaire is provided. [ABSTRACT FROM AUTHOR]

Objective: To systematically review studies of TB treatment experiences in immigrant populations, using Critical Interpretive Synthesis (CIS).Methods: On 26 October 2014, MEDLINE, CINAHL, Embase, LILACS, and PsycINFO were systematically searched. Grey literature and reference lists were hand-searched. Initial papers included were restricted to studies of immigrant patient perspectives; after a model was developed, a second set of papers was included to test the emerging theory.Results: Of 1761 studies identified in the search, a total of 29 were included in the synthesis. Using those studies, we developed a model that suggested treatment experiences were strongly related to the way both individuals and societies adjusted to immigration ('acculturation strategies'). Relationships with healthcare workers and immigration policies played particularly significant roles in TB treatment.Conclusions: This review emphasised the roles of repatriation policy and healthcare workers in forming experiences of TB treatment in immigrant populations. [ABSTRACT FROM AUTHOR]

Aim: To compare long-term psychosocial and functional outcomes of young adults with uncomplicated childhood-onset epilepsy (COE) to population norm controls utilizing a controlled prospective cohort study.Method: Psychosocial and functional outcomes were assessed at 10-year follow-up. Fifty-three young adults (27 males, 26 females) with COE (n=21 remission; 18y 1mo-30y 9mo; mean age 23y 4mo [SD 3y 4mo]; mean age of epilepsy onset 12y [SD 3y 2mo]) were compared to 55 (23 males, 32 females) first-degree cousin controls (18y 5mo-29y 8mo; mean age 23y 6mo [SD 3y]). Seizure remission status and baseline comorbidities (attention-deficit/hyperactivity disorder [ADHD], depressive disorders, anxiety disorders, and academic problems) were examined as possible risk factors for significant differences in functional outcomes.Results: Poorer functional outcomes, indicated by patient rated cognition and overall disability, were evident among young adults with epilepsy compared to controls (all p<0.05). These difficulties were due to baseline comorbid ADHD and academic problems. Remission status was not related to measured cognition and overall disability.Interpretation: Psychosocial outcomes of young adults with COE were similar to controls. In contrast, functional outcomes were worse in epilepsy across cognition and overall disability. Baseline comorbid ADHD and academic problems were identified as risk factors at 10-year follow-up suggesting that these early recognized comorbidities at or near diagnosis have long-term impacts.What This Paper Adds: Young adults with childhood-onset epilepsy (COE) and controls have similar psychosocial outcomes 10 years after diagnosis. Young adults with COE report greater limitations in cognition and overall disability than controls. Baseline presence of attention-deficit/hyperactivity disorder and academic problems significantly affect cognitive and overall disability scores. [ABSTRACT FROM AUTHOR]

In this paper, we introduce a novel construct, leader–member exchange (LMX) importance, which we position as a meta‐perception indicating whether followers view their LMX relationship as personally important or valuable to them. Based on social exchange theory, we examine the extent to which the obligation followers feel towards their leader depends jointly on the quality and the importance of the LMX relationship. We examine how LMX importance influences the process through which LMX quality affects employees' level of organizational citizenship behaviour (OCB) by focusing on felt obligation (a measure of followers' reciprocity obligation in the social exchange process) as a mediating variable. Across two studies, we found that high levels of both LMX quality and LMX importance interacted to engender a greater feeling of obligation in followers to repay the perceived favourable exchanges with their leader. Felt obligation predicted leader‐rated OCB, demonstrating support for our hypothesized moderated mediation model. However, psychological empowerment, when included alongside felt obligation (in Study 2), did not mediate the LMX‐OCB relationship. Overall, our findings extend the focus of LMX theory beyond the confines of LMX quality to incorporate the importance of the LMX relationship. Practitioner points: Leaders should be aware that followers vary in the extent to which they perceive the leader–follower relationship to be personally important. As such, they may decide to invest heavily in helping followers understand that the relationship is instrumental for their success at work.Leaders should invest not only in trying to build positive relationships, but also in establishing the importance of these relationships. Doing so will maximize the benefits of developing a high‐quality relationship.Followers appear to be more willing to reciprocate when they perceive a high‐quality relationship with the leader and one when they perceive the relationship to be important. Thus, managers should be aware that the norm of reciprocity may vary depending on how important followers perceive the relationship to be and leaders may need to find other ways to motivate employees who do not see the relationship as important.When followers do not see the leader–follower relationship as important, managers should avoid trying to engage in reciprocity contingent influence tactics and/or try to change followers' perceptions of the importance of the relationship. [ABSTRACT FROM AUTHOR]

Bioethics is a practically oriented discipline that developed to address pressing ethical issues arising from developments in the life sciences. Given this inherent practical bent, some form of advocacy or activism seems inherent to the nature of bioethics. However, there are potential tensions between being a bioethics activist, and academic ideals. In academic bioethics, scholarship involves reflection, rigour and the embrace of complexity and uncertainty. These values of scholarship seem to be in tension with being an activist, which requires pragmatism, simplicity, certainty and, above all, action. In this paper I explore this apparent dichotomy, using the case example of my own involvement in international efforts to end forced organ harvesting from prisoners of conscience in China. I conclude that these tensions can be managed and that academic bioethics requires a willingness to be activist. [ABSTRACT FROM AUTHOR]

Aim: Careful study and accurate description of behaviour are important to understand developmental challenges for individuals with Cornelia de Lange syndrome (CdLS). Here we present a systematic review of current understanding of behaviour in CdLS.Method: A systematic search was performed for articles published between January 1946 and December 2015 evaluating autism, self-injury, and/or cognition in CdLS. After study-selection, 43 papers were included. The Cochrane quality criteria were adjusted to assign quality scores to the included studies.Results: Participants were mostly categorized in the severe/profound developmental level. Methodology and quality were very heterogeneous, as well as reporting occurrence of autism. Self-injurious behaviour was reported in 15 papers. Physical conditions were reported in 21 studies, mostly related to hearing and vision. Only nine studies mentioned details about medication.Interpretation: Comparison of presented results was hindered by heterogeneous assessment methods. Improving our understanding of behavioural characteristics in CdLS requires more uniform methodology. We propose a criterion standard of instruments that can ideally be used in assessment of behaviour and development. This will improve understanding of behaviour in the context of developmental level and daily functioning. [ABSTRACT FROM AUTHOR]

In 2015 Robert Veatch published the second edition of his Transplantation ethics, this time together with Lainie Ross. The chapters on postmortem organ procurement distinguish between 'giving' and 'taking' systems, and argue that 'taking' systems may promise a greater yield of organs for transplantation, but inevitably violate a requirement of respect for the deceased's autonomy. That argument has been very influential, and is also representative of a way of thinking that is widespread in the literature and in public debate. In this paper I contend that it is conceptually flawed in a number of important respects. These concern the understanding of both the concept of 'consent' and the requirement of respect for autonomy, the role of the relatives in any procurement system, and the factors that actually determine the extent to which a system respects autonomy, under any interpretation of that requirement. [ABSTRACT FROM AUTHOR]

Background: Longitudinal cohort studies gather large amounts of data over time, often without direct benefit to participants. A positive experience may encourage retention in the study, and participants may benefit in unanticipated ways. Objective: To explore first‐time mothers' experiences of taking part in a longitudinal cohort study and completing self‐administered surveys during pregnancy and at 3, 6, 9 and 12 months' postpartum. Design: Content analysis of comments written by participants in the Maternal health And Maternal Morbidity in Ireland study's five self‐completion surveys, a multisite cohort study exploring women's health and health problems during and after pregnancy. This paper focuses on what women wrote about taking part in the research. Ethical approval was granted by the site hospitals and university. Setting and participants: A total of 2174 women were recruited from two maternity hospitals in Ireland between 2012 and 2015. Findings: A total of 1000 comments were made in the five surveys. Antenatally, barriers related to surveys being long and questions being intimate. Postpartum, barriers related to being busy with life as first‐time mothers. Benefits gained included gaining access to information, taking time to reflect, stopping to think and being prompted to seek help. Survey questions alone were described as valuable sources of information. Discussion and conclusions: Findings suggest that survey research can "give back" to women by being a source of information and a trigger to seek professional help, even while asking sensitive questions. Understanding this can help researchers construct surveys to maximize benefits, real and potential, for participants. [ABSTRACT FROM AUTHOR]

A growing body of evidence indicates that the effects reported in many scientific fields may be overestimated or even false. This problem has gained a lot of attention in the field of psychology, where researchers have even started to speak of a 'replication crisis'. Fortunately, a number of measures to rectify this problem have already been proposed and implemented, some inspired by practices in other scientific fields. In this review, I briefly examine this issue in the field of psychology and suggest some practical tools and strategies that researchers can implement to increase replicability and the overall quality of their scientific research. WHAT THIS PAPER ADDS: Researchers can implement many practical tools and strategies to improve replicability of their findings. Strategies include improving statistical inference, pre-registration, multisite collaboration, and sharing data. Different scientific fields could benefit from looking at each other's best practices. [ABSTRACT FROM AUTHOR]

Background: Cyberbullying is an international Public Health concern. Efforts to understand and address it can be enhanced by involving young people. This paper describes a rights‐based collaboration with young people in a qualitative exploration of cyberbullying. It describes the establishment, implementation and evaluation of a Young Person's Advisory Group as well as identifying the impact on the research process and the young people involved. Methods: Sixteen postprimary school students met with researchers on five occasions in a youth centre. Sessions focused on building the young people's capacity to engage with the research, designing the qualitative study, interpreting study findings and evaluating the collaboration process. Results: The Advisory Group highlighted a lack of understanding and appropriate action with regard to cyberbullying but believed that their involvement would ultimately help adults to understand their perspective. Evaluation findings indicate that members were supported to form as well as express their views on the design, conduct and interpretation of the research and that these views were acted upon by adult researchers. Their involvement helped to ensure that the research was relevant and reflective of the experiences, interests, values and norms of young people. Conclusion: Young people can contribute a unique perspective to the research process that is otherwise not accessible to adult researchers. The approach described in this study is a feasible and effective way of operationalizing young people's involvement in health research and could be adapted to explore other topics of relevance to young people. [ABSTRACT FROM AUTHOR]

Aim: To determine the long-term course of difficulty in participation of individuals with cerebral palsy (CP) without intellectual disability between 16 years and 34 years of age.Method: One hundred and fifty-one individuals with CP aged 16 to 20 years were included (63% male, 37% female; Gross Motor Function Classification System [GMFCS] levels I-IV; without intellectual disability). The Assessment of Life Habits questionnaire 3.0 general short form was used up to three times biennially and at 13-year follow-up (13-year follow-up: n=98). Scores (range 0-10) reflect difficulty and assistance in participation in housing, education and employment, interpersonal relationships, recreation, community life, and responsibilities. Multilevel models were used to determine the course of difficulty in participation by GMFCS level.Results: Despite high average participation levels, 41% to 95% of adolescents and young adults with CP experienced difficulty. Difficulty in participation in housing and interpersonal relationships increased from age 16 years onwards and in most other life areas in the mid- and late 20s. In adolescents in GMFCS levels III and IV, participation in recreation and community life improved up to age 23 years.Interpretation: Individuals with CP experience increasing difficulties in participation in their mid- and late 20s. Clinicians should systematically check for participation difficulties in young adults with CP and offer timely personalized treatment.What This Paper Adds: Many individuals with cerebral palsy (CP) aged 16 to 34 years experience difficulty in participation. Difficulty in participation increases in the mid- and late 20s for individuals with CP. Participation in recreation/community life improves before age 23 years for those in Gross Motor Function Classification System levels III and IV. [ABSTRACT FROM AUTHOR]

Aim: To describe 5-year motor and functional outcomes after paediatric arterial ischaemic stroke (AIS) and to explore factors associated with poorer long-term outcome.Method: Thirty-three children (21 males, 12 females) with AIS were recruited to a single-site, cross-sectional study, from a previously reported prospective longitudinal stroke outcome study. Children were stratified according to age at diagnosis: neonates (≤30d), preschool (>30d-5y), and school age (≥5y). Motor and functional outcomes were measured at 5 years after stroke. Neurological outcomes were evaluated using the Pediatric Stroke Outcome Measure (PSOM) at 1 month and more than 4 years after stroke.Results: At 5 years after stroke, motor function, quality of life, fatigue, adaptive behaviour, activities of daily living, and handwriting speed were significantly poorer than age expectations. The preschool group had the highest percentage of fine and gross motor impairment. Poorer fine motor skills were associated with subcortical-only lesions and large lesion size. Poorer gross motor outcomes correlated with preschool age, bilateral lesions, and PSOM impairment at 1 month.Interpretation: Children are at elevated risk for motor and functional impairments after AIS, with the preschool age group most vulnerable. Identifying early predictors of poorer outcomes facilitates targeted early intervention and long-term rehabilitation.What This Paper Adds: Following paediatric stroke, children are at elevated risk of motor and functional difficulties. Stroke occurring between 30 days and 5 years of age may result in poorer motor and functional outcomes. [ABSTRACT FROM AUTHOR]

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. [ABSTRACT FROM AUTHOR]

Aim: To analyse the health care usage of individuals with cerebral palsy (CP) as a function of age and ambulatory status.Method: In total, 970 self-administered questionnaires relating to health care usage were sent, via a clinical network of professionals and institutions, to children and adults with CP in Brittany, France. Frequency of use of different aspects of health care were analysed as a function of age and ambulatory status. Multivariate logistic regression evaluated differences in the frequency of each health care type with age; the transition from childhood to adulthood was specifically analysed.Results: The response rate was 53% (282 adults, 230 children). Use of medication (particularly psychotropic and analgesic) increased with age, while physical-types of health care (rehabilitation, physical medicine and rehabilitation follow-up, and equipment) decreased with age, independently of ambulatory status. Use of other treatments, such as botulinum toxin injections, was not influenced by age. The provision of rehabilitation was particularly affected by the period of transition.Interpretation: Although health care needs change naturally in adulthood, the large decrease in usage of specific types of rehabilitation after the transition to adulthood suggested individuals had difficulty accessing this type of health care after childhood. These results provide objectives for the development of patient-centred, transitional consultations, and longitudinal studies.What This Paper Adds: Use of medication, particularly psychotropic and analgesic drugs, increased with age in individuals with cerebral palsy. Use of orthoses, physical medicine and rehabilitation physician follow-up, and rehabilitation decreased with age. Transition from childhood to adulthood involved significant changes in health care usage. [ABSTRACT FROM AUTHOR]

Aim: To establish a patient-centered research agenda for cerebral palsy (CP).Method: We engaged a large cross-section of the extended community of people living with CP and those providing healthcare to people with CP ('the community') in an educational series and collaborative survey platform to establish an initial list of prioritized research ideas. After online workshops, a facilitated Delphi process was used to select the 20 highest priorities. Select participants attended an in-person workshop to provide comment and work toward consensus of research priorities.Results: A research agenda for CP was developed by the community, which included consumers, clinicians, and researchers interested in advancing the established research agenda. The results included the top 16 research concepts produced by the process to shape and steward the research agenda, and an engaged cross-section of the community.Interpretation: It has been shown that proactively engaging consumers with clinical researchers may provide more meaningful research for the community. This study suggests that future research should have more focus on interventions and outcomes across the lifespan with increased emphasis on the following outcome measures: function, quality of life, and participation.What This Paper Adds: A patient-centered research agenda for cerebral palsy was established. Comparative effectiveness of interventions, physical activity, and understanding ageing were leading themes. Longitudinal studies across the lifespan, clinical spectrum, and ages were highly ranked. Participants reported high value for participation outcomes. Participants reported great appreciation for the engagement between consumers and clinician researchers. [ABSTRACT FROM AUTHOR]

Aim: To disentangle the respective impacts of manual dexterity and cerebral palsy (CP) in cognitive functioning after neonatal arterial ischaemic stroke.Method: The population included 60 children (21 females, 39 males) with neonatal arterial ischaemic stroke but not epilepsy. The presence of CP was assessed clinically at the age of 7 years and 2 months (range 6y 11mo-7y 8mo) using the definition of the Surveillance of CP in Europe network. Standardized tests (Nine-Hole Peg Test and Box and Blocks Test) were used to quantify manual (finger and hand respectively) dexterity. General cognitive functioning was evaluated with the Wechsler Intelligence Scale for Children, Fourth Edition. Simple and multiple linear regression models were performed while controlling for socio-economic status, lesion side, and sex.Results: Fifteen children were diagnosed with CP. In simple regression models, both manual dexterity and CP were associated with cognitive functioning (β=0.41 [p=0.002] and β=0.31 [p=0.019] respectively). However, in multiple regression models, manual dexterity was the only associated variable of cognitive functioning, whether or not a child had CP (β=0.35; p=0.007). This result was reproduced in models with other covariables (β=0.31; p=0.017).Interpretation: As observed in typically developing children, manual dexterity is related to cognitive functioning in children having suffered a focal brain insult during the neonatal period.What This Paper Adds: Manual dexterity predicts cognitive functioning after neonatal arterial ischaemic stroke. Correlations between manual dexterity and cognitive functioning occur irrespective of sex, lesion side, presence of cerebral palsy, and socio-economic status. Residual motor ability may support cognitive functioning. [ABSTRACT FROM AUTHOR]

Abstract: Breastfeeding is challenging for mothers of preterm infants. The aim of this paper is to describe risk factors for ceasing breastfeeding and methods of feeding until 12 months postnatal age in mothers who breastfed their preterm infants at discharge from neonatal intensive care units (NICUs). The data come from a randomised controlled trial, which evaluated the effectiveness on exclusive breastfeeding at 8 weeks of proactive telephone support compared with reactive support offered to mothers of preterm infants following discharge from NICU. Six NICUs across Sweden randomised a total of 493 mothers. We used regression and survival analyses to assess the risk factors for ceasing breastfeeding and the long‐term outcomes of the intervention. The results showed that 305 (64%) of the infants were breastfed at 6 months and 49 (21%) at 12 months. Partial breastfeeding at discharge, low maternal educational level, and longer length of stay in the NICU increased the risk for ceasing breastfeeding during the first 12 months. Furthermore, the Kaplan–Meier analysis showed that the proportion of mothers who ceased breastfeeding did not differ between the intervention (n = 231) and controls (n = 262) during the first 12 months (log‐rank test p = .68). No difference was found between groups on method of feeding. More than 85% of the infants were fed directly at the breast. These findings provide important insights for health professionals who are supporting mothers of preterm infants to breastfeed long term. Registered in www.clinicaltrials.gov (NCT01806480). [ABSTRACT FROM AUTHOR]

Abstract: Improving infant and young child feeding practices is critical for improving growth and reducing child mortality and morbidity. This paper aims to compare predictors of minimum dietary diversity, an important indicator of adequate complementary feeding practices, in Bangladesh in 2011 and 2014. The 2011 and 2014 Bangladesh Demographic and Health Survey were used to examine predictors of minimum dietary diversity among 6–23 months. An additional analysis was conducted for the 18–23‐month group, because a significant increase in meeting minimum dietary diversity recommendations was seen in this age group only. Factors found to be associated with practices were compared across time points. In 2011, minimum dietary diversity was 23.8% and increased to 28.8% in 2014. Among children 18–23 months, in 2011, minimum dietary diversity was 32.5% and increased to 42.8% in 2014. Among all children, wealth, education, exposure to media, and antenatal care were significant predictors of dietary diversity. In the 18–23‐month age group, significant predictors in 2011 were wealth and decision making. In 2014, significant predictors were education and exposure to media. Demographic trends indicated a significant increase in education and exposure to media between 2011 and 2014. As these were significant for minimum dietary diversity in 2014 overall and for 18–23 months, they might be important targets of future interventions, specifically utilizing media channels and tailoring special strategies for women with low education and limited exposure to media. [ABSTRACT FROM AUTHOR]

Aim: To investigate the efficacy of an embodied mindfulness-based movement programme (MiYoga), targeting attention in children with cerebral palsy (CP).Method: Total number of participants 42, with 24 boys (57.1%) and 18 girls (42.9%); mean age 9y 1mo, SD 3y; Gross Motor Function Classification System levels I=22, II=12, III=8) and their parents were randomized to either MiYoga (n=21) or waitlist comparison (n=21) groups. The primary outcome was attention postintervention measured by the Conners' Continuous Performance Test, Second Edition (CCPT). Secondary outcomes included parent and child mindfulness, child quality of life, parental well-being, child executive function, child behaviour, child physical measures, and the parent-child relationship.Results: Children in the MiYoga group demonstrated significantly better attention postintervention than the waitlist comparison group, with lower inattention scores on the hit reaction time standard error (F1,33 =4.59, p=0.04, partial eta-squared [ηp2]=0.13) variable and fewer perseveration errors (F1,33 =4.60, p=0.04, ηp2=0.13) on the CCPT. Intention-to-treat analysis also revealed that sustained attention in the MiYoga group was significantly better than in the waitlist comparison group postintervention (F1,37 =5.97, p=0.02, ηp2=0.14). Parents in the MiYoga group demonstrated significantly decreased mindfulness (Mindfulness Attention Awareness Scale; F1,33 =10.130, p=0.003, ηp2=0.246).Interpretation: MiYoga offers a lifestyle intervention that improves attention in children with CP. MiYoga can be considered as an additional option to standard rehabilitation to enhance attention for children with CP.What This Paper Adds: MiYoga, an embodied mindfulness-based movement programme, can enhance attention (more attentive and consistent performance) in children with cerebral palsy. MiYoga had no significant effect on physical functioning. [ABSTRACT FROM AUTHOR]

Aim: Capturing functional information is crucial in childhood disability. The International Classification of Functioning, Disability and Health (ICF) Core Sets promote assessments of functional abilities and disabilities in clinical practice regarding circumscribed diagnoses. However, the specificity of ICF Core Sets for childhood-onset disabilities has been doubted. This study aimed to identify content commonalities and differences among the ICF Core Sets for cerebral palsy (CP), and the newly developed Core Sets for autism spectrum disorder (ASD) and attention-deficit-hyperactivity disorder (ADHD).Method: The categories within each Core Set were aggregated at the ICF component and chapter levels. Content comparison was conducted using descriptive analyses.Results: The activities and participation component of the ICF was the most covered across all Core Sets. Main differences included representation of ICF components and coverage of ICF chapters within each component. CP included all ICF components, while ADHD and ASD predominantly focused on activities and participation. Environmental factors were highly represented in the ADHD Core Sets (40.5%) compared to the ASD (28%) and CP (27%) Core Sets.Interpretation: International Classification of Functioning, Disability and Health Core Sets for CP, ASD, and ADHD capture both common but also unique functional information, showing the importance of creating condition-specific, ICF-based tools to build functional profiles of individuals with childhood-onset disabilities.What This Paper Adds: The International Classification of Functioning, Disability and Health (ICF) Core Sets for cerebral palsy (CP), autism spectrum disorder (ASD), and attention-deficit-hyperactivity disorder (ADHD) include unique functional information. The ICF-based tools for CP, ASD, and ADHD differ in terms of representation and coverage of ICF components and ICF chapters. Representation of environmental factors uniquely influences functioning and disability across ICF Core Sets for CP, ASD and ADHD. [ABSTRACT FROM AUTHOR]

Aim: To assess feeding difficulties and nutritional status among children with cerebral palsy (CP) in Ghana, and whether severity of feeding difficulties and malnutrition are independently associated with caregiver quality of life (QoL).Method: This cross-sectional survey included 76 children with CP (18mo-12y) from four regions of Ghana. Severity of CP was classified using the Gross Motor Function Classification System and anthropometric measures were taken. Caregivers rated their QoL (using the Pediatric Quality of Life Inventory Family Impact Module) and difficulties with eight aspects of child feeding. Logistic regression analysis explored factors (socio-economic characteristics, severity of CP, and feeding difficulties) associated with being underweight. Linear regression was undertaken to assess the relationship between caregiver QoL and child malnutrition and feeding difficulties.Results: Poor nutritional status was common: 65% of children aged under 5 years were categorized as underweight, 54% as stunted, and 58% as wasted. Reported difficulties with child's feeding were common and were associated with the child being underweight (odds ratio 10.7, 95% confidence interval 2.3-49.6) and poorer caregiver QoL (p<0.001). No association between caregiver QoL and nutritional status was evident.Interpretation: Among rural, low resource populations in Ghana, there is a need for appropriate, accessible caregiver training and support around feeding practices of children with CP, to improve child nutritional status and caregiver well-being.What This Paper Adds: Malnutrition is very common among children with cerebral palsy in this rural population in Ghana. Feeding difficulties in this population were strongly associated with being underweight. Feeding difficulties were associated with poorer caregiver quality of life (QoL). Child nutritional status was not associated with caregiver QoL. [ABSTRACT FROM AUTHOR]

Aim: To investigate whether docosahexaenoic acid (DHA), choline, and uridine-5-monophosphate (UMP) supplementation improves neurodevelopmental outcome in infants with suspected cerebral palsy (CP) versus a comparison group of children.Method: Infants aged 1 to 18 months with suspected CP were recruited from UK child development centres. Participants received daily treatment or control supplementation for 2 years (double-blind randomized control design). Stratification was by age, sex, predominant pattern of motor involvement (four limbs or other), and visual impairment (or not). The primary outcome was the cognitive composite score of the Bayley Scales of Infant and Toddler Development, Third Edition (CCS-Bayley-III). Secondary outcomes included language composite and motor composite scores of the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III).Results: Forty infants were recruited; 35 began supplementation, 29 completed 1 to 2 years' supplementation. The treatment group CCS-Bayley-III was non-significantly higher than the comparison group (mean 77.7 [SD 19.2] and 72.2 [SD 19.8] respectively, mean modelled difference 4.4 [-2.8, 11.6]). The treatment group language scores, but not motor scores, were non-significantly higher than for the comparison group.Interpretation: Most families found supplementation feasible. No statistically significant differences in neurodevelopmental outcome between the treatment and comparison groups were identified. Further investigation of neurodevelopmental outcome after supplementation with DHA, choline, and UMP of infants with suspected CP is warranted.What This Paper Adds: This was the first trial of phosphatidylcholine precursor supplementation in infants with suspected cerebral palsy (CP). Families of infants with suspected CP found 2-year nutritional supplementation feasible. There was no statistically significant neurodevelopmental advantage for the treatment group versus the comparison group. However, treatment group cognitive and language advantage were of clinically meaningful magnitude. [ABSTRACT FROM AUTHOR]

Background: There have been recent important advances in conceptualizing and operationalizing involvement in health research and health ‐ care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization – definition, enrolment, enactment and appraisal. Method: Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. Findings: Twenty ‐ six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co ‐ governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. Conclusion: To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co ‐ governance and dissemination of research processes and findings. [ABSTRACT FROM AUTHOR]

Objectives: Tuberculosis (TB) is known as a disease of the poor. Despite TB diagnosis and care usually being offered for free, TB patients can still face substantial costs, especially in the context of multi-drug resistance (MDR). The End TB Strategy calls for zero TB-affected families incurring 'catastrophic' costs due to TB by 2025. This paper examines, by MDR status, the level and composition of costs incurred by TB-affected households during care seeking and treatment; assesses the affordability of TB care using catastrophic and impoverishment measures; and describes coping strategies used by TB-affected households to pay for TB care.Methods: A nationally representative survey of TB patients at public health facilities across Ghana.Results: We enrolled 691 patients (66 MDR). The median expenditure for non-MDR TB was US$429.6 during treatment, vs. US$659.0 for MDR patients (P-value = 0.001). Catastrophic costs affected 64.1% of patients. MDR patients were pushed significantly further over the threshold for catastrophic payments than DS patients. Payments for TB care led to a significant increase in the proportion of households in the study sample that live below the poverty line at the time of survey compared to pre-TB diagnosis. Over half of patients undertook coping strategies.Conclusion: TB patients in Ghana incur substantial costs, despite free diagnosis and treatment. High rates of catastrophic costs and coping strategies in both non-MDR and MDR patients show that new policies are urgently needed to ensure TB care is actually affordable for TB patients. [ABSTRACT FROM AUTHOR]

Abstract: Background: Insulin pump therapy (IPT) is a technological advancement that has been developed to help people manage Type 1 diabetes (T1D). However, ways of managing diabetes requiring the implementation of health technologies bring new complexities and a need to understand the factors which enable people with T1D to incorporate a novel device. This new comprehension could provide an exemplar for people with long‐term conditions to incorporate new technologies more generally. Objective: To determine what influences the incorporation, adaptation and use of IPT into the everyday lives of people living with diabetes. Design: Critical interpretive synthesis (CIS) using systematic searches undertaken in 7 electronic databases of literature, published 2008 onwards. Results: A total of 4998 titles were identified, 274 abstracts reviewed, 39 full articles retrieved and 22 papers selected for analysis. Three themes emerged which were of relevance to the introduction and use of IPT; Tensions between expectations and experiences in adoption and early adaptation; Negotiation of responsibility and accessing support; Reflexivity, active experimentation and feedback. Conclusions: This CIS builds on earlier reviews on lived experiences of IPT. Novel insights are offered through examination of the experiences of pump users from children through to adults, their families and health‐care professionals. Expectations of what the device can do to improve self‐management impacts on the early stages of adoption as the reality of the technology requires substantial thought and action. Areas for intervention to improve IPT incorporation include establishing who is responsible for management tasks of the device and enabling navigation to further means of support and resources. [ABSTRACT FROM AUTHOR]

Summary: Background: Online psychotherapy has been successfully used as supportive treatment in many chronic illnesses. However, there is a lack of evidence on its role in the management of gastrointestinal (GI) diseases. Aims: To examine whether online psychological interventions improve mental and physical outcomes in gastrointestinal diseases. Methods: We searched CINAHL Plus, MEDLINE, EMBASE, Health Management Information Consortium, PsycINFO, British Nursing Index, Cochrane Library, a specialised register of the IBD/FBD Cochrane Group, MEDLINE (PubMed) WHO International Clinical Trial Registry, ClinicalTrials.gov, and reference lists of all papers included in the review. The Cochrane Risk of Bias Tool was used to assess internal validity. Where possible, data were pooled using random‐effects meta‐analysis. Results: We identified 11 publications (encompassing nine studies) meeting inclusion criteria. One study had a high risk of selection bias (allocation concealment), all studies had a high risk of performance and detection bias. Eight studies were included in the meta‐analyses (6 on irritable bowel syndrome [IBS] and two on inflammatory bowel disease [IBD]). Online cognitive behavioural therapy (CBT) was shown to significantly improve gastrointestinal symptom‐specific anxiety (MD: −8.51, 95% CI −12.99 to −4.04, P = 0.0002) and lessen symptom‐induced disability (MD: −2.78, 95% CI −5.43 to −0.12, P = 0.04) in IBS post intervention. There was no significant effect of online CBT on any other outcomes in IBS. No significant effect of online psychotherapy was demonstrated in IBD. Conclusion: There is insufficient evidence to demonstrate the effectiveness of online CBT to manage mental and physical outcomes in gastrointestinal diseases. [ABSTRACT FROM AUTHOR]

Aim: To identify and assess available evidence from qualitative studies exploring experiences of individuals living with fetal alcohol spectrum disorders (FASD) or those living with a child with FASD, as well as experiences of interventions aimed at supporting individuals with FASD and their families.Method: A systematic literature search was conducted in six electronic databases: PubMed, Embase, Cochrane Library, CINAHL, PsycINFO, and Scopus. Included studies were analysed using manifest content analysis. Methodological limitations and confidence in the evidence were assessed using a modified version of the Critical Appraisal Skills Programme and the Grading of Recommendations, Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research approach respectively.Results: Findings from 18 studies show that individuals with FASD experience a variation of disabilities, ranging from somatic problems, high pain tolerance, destructive behaviour, hyperactivity, and aggressiveness, to social problems with friendship, school attendance, and maintenance of steady employment. Most studies reported parents' experiences with FASD; parenting was viewed as a lifelong engagement and that the whole family is isolated and burdened because of FASD. People with FASD feel that their difficulties affect their daily life in a limiting way and make them feel different from others.Interpretation: From the perspective of primarily parents, individuals with FASD and their parents face many different difficulties, for which they need societal support.What This Paper Adds: Individuals with fetal alcohol spectrum disorders (FASD) feel their difficulties make them different from others. Parents think of their parenting as a lifelong engagement. There is a shortage of studies investigating experiences of children with FASD. There is a shortage of studies investigating experiences of interventions given to individuals with FASD. [ABSTRACT FROM AUTHOR]

Aim: Health-related quality of life (HRQoL) and peer relationships were investigated in adolescents with developmental coordination disorder (DCD) and attention-deficit-hyperactivity disorder (ADHD).Method: Adolescents with DCD (n=9), ADHD (n=9), DCD and ADHD (n=10), and typically developing adolescents (n=16) completed the following questionnaires: KIDSCREEN-52 Health-Related Quality of Life Questionnaire and Peer Relations Questionnaire for Children. Twenty-five participants took part in semi-structured interviews.Results: Adolescents with DCD and ADHD had lower HRQoL on the mood and emotions, school environment, and financial resources scales of the KIDSCREEN-52 than adolescents in the DCD and typically developing groups (all p<0.05). On the Peer Relations Questionnaire for Children, the DCD and ADHD group reported significantly higher victimization compared with those in the typically developing (p=0.030) and DCD (p=0.010) groups. Qualitative interviews among young people with DCD and ADHD revealed feelings of marginalization and victimization. Descriptors such as 'misfits', 'oddballs', 'weird', and 'the rejects' were used to describe themselves.Interpretation: HRQoL and peer relationships are negatively affected in adolescents with DCD and ADHD. WHAT THIS PAPER ADDS?: Children with developmental coordination disorder (DCD) do not display poorer overall health-related quality of life (HRQoL) versus typically developing controls. Having DCD and attention-deficit-hyperactivity disorder (ADHD) was associated with poorer HRQoL. Adolescents with DCD and ADHD experience significantly higher levels of peer victimization than typically developing adolescents. HRQoL and peer relationships are significantly associated in adolescent respondents. [ABSTRACT FROM AUTHOR]

Aim: To develop and validate a disease-specific parent proxy and child quality of life (QoL) measure for patients aged 2 to 18 years surviving cerebral sinovenous thrombosis (CSVT) and arterial ischaemic stroke (AIS).Method: Utilizing qualitative and quantitative methods, we developed a 75-item Pediatric Stroke Quality of Life Measure (PSQLM) questionnaire. We mailed the PSQLM and a standardized generic QoL measure, Pediatric Quality of Life Inventory (PedsQL), to 353 families. Stroke type, age at stroke, and neurological outcome on the Pediatric Stroke Outcome Measure were documented. We calculated the internal consistency, validity, and reliability of the PSQLM.Results: The response rate was 29%, yielding a sample of 101 patients (mean age 9y 9mo [SD 4.30]; 69 AIS [68.3%], 32 CSVT [31.7%]). The internal consistency of the PSQLM was high (Cronbach's α=0.94-0.97). Construct validity for the PSQLM was moderately strong (r=0.3-0.4; p<0.003) and, as expected, correlation with the PedsQL was moderate, suggesting the PSQLM operationalizes QoL distinct from the PedsQL. Test-retest reliability at 2 weeks was very good (intraclass correlation coefficient [ICC] 0.85-0.95; 95% confidence interval 0.83-0.97) and good agreement was established between parent and child report (ICC 0.63-0.76).Interpretation: The PSQLM demonstrates sound psychometric properties. Further research will seek to increase its clinical utility by reducing length and establishing responsiveness for descriptive and longitudinal evaluative assessment.What This Paper Adds: A pediatric stroke-specific quality of life (QoL) measurement tool for assessments based on perceptions of importance and satisfaction. Moderate-to-high reliability and validity established for a new clinical scale evaluating QoL among children with stroke. Perceived QoL measured using the Pediatric Stroke Quality of Life Measure appears lower in children with neurological impairment. [ABSTRACT FROM AUTHOR]

Aim: Economic appraisal can help guide policy-making for purchasing decisions, and treatment and management algorithms for health interventions. We conducted a systematic review of economic studies in cerebral palsy (CP) to inform future research.Method: Economic studies published since 1970 were identified from seven databases. Two reviewers independently screened abstracts and extracted data following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Any discrepancies were resolved by discussion.Results: Of 980 identified references, 115 were included for full-text assessment. Thirteen articles met standard criteria for a full economic evaluation, two as partial economic evaluations, and 18 as cost studies. Six were full economic evaluations alongside clinical studies or randomized controlled trials, whereas seven involved modelling simulations. The economic case for administration of magnesium sulfate for imminent preterm birth is compelling, achieving both health gain and cost savings. Current literature suggests intrathecal baclofen therapy and botulinum toxin injection are cost-effective, but stronger evidence for long-term effects is needed. Lifestyle and web-based interventions are inexpensive, but broader measurement of outcomes is required.Interpretation: Prevention of CP would avoid significant economic burden. Some treatments and interventions have been shown to be cost-effective, although stronger evidence of clinical effectiveness is needed. What this paper adds Cost-effectiveness evidence shows prevention is the most significant strategy. Some treatments are cost-effective, but stronger evidence for long-term effectiveness is required. Comparison of treatment costs is challenging owing to variations in methodologies and varying clinical indications. [ABSTRACT FROM AUTHOR]

Aim: The purpose of this systematic review was to provide an up-to-date global overview of the separate prevalences of motor and cognitive delays and cerebral palsy (CP) in very preterm (VPT) and very-low-birthweight (VLBW) infants.Method: A comprehensive search was conducted across four databases. Cohort studies reporting the prevalence of CP and motor or cognitive outcome from 18 months corrected age until 6 years of VPT or VLBW infants born after 2006 were included. Pooled prevalences were calculated with random-effects models.Results: Thirty studies were retained, which included a total of 10 293 infants. The pooled prevalence of cognitive and motor delays, evaluated with developmental tests, was estimated at 16.9% (95% confidence interval [CI] 10.4-26.3) and 20.6% (95% CI 13.9-29.4%) respectively. Mild delays were more frequent than moderate-to-severe delays. Pooled prevalence of CP was estimated to be 6.8% (95% CI 5.5-8.4). Decreasing gestational age and birthweight resulted in higher prevalences. Lower pooled prevalences were found with the Third Edition of the Bayley Scales of Infant Development than with the Second Edition.Interpretation: Even though neonatal intensive care has improved over recent decades, there is still a wide range of neurodevelopmental disabilities resulting from VPT and VLBW births. However, pooled prevalences of CP have diminished over the years.What This Paper Adds: The Bayley Scales of Infant and Toddler Development, Third Edition reported lower pooled prevalences of motor and cognitive delays than the Second Edition. The pooled prevalence of cerebral palsy in infants born extremely preterm was reduced compared with previous meta-analyses. [ABSTRACT FROM AUTHOR]

Aim: To describe health-related quality of life of Australian children and adolescents with Down syndrome and compare it with norm-referenced data.Method: A cross-sectional survey was conducted with parents of 75 children and adolescents (43 males, 32 females) with Down syndrome aged 5 to 18 years (mean age 13y 2mo, SD 4y 8mo). The proxy-report KIDSCREEN-27 questionnaire was administered and five dimensions of health-related quality of life were measured. Data were analysed descriptively and compared with normative data.Results: Total group mean scores for psychological well-being, autonomy and parent relation, and school environment dimensions were within normal threshold values, whereas mean scores for physical well-being, and social support and peers dimensions, were poorer. For participants with Down syndrome aged 8 to 18 years, the difference with normative data for proxy-reported physical well-being, psychological well-being, and social support and peers dimensions favoured typically developing children. Adolescents (13-18y) with Down syndrome scored poorer on all dimensions than children (5-12y) with Down syndrome.Interpretation: Our findings assist a better understanding of the lived experiences of children and adolescents with Down syndrome, as perceived by their parents, and suggest aspects of health that could be influenced to optimize their quality of life.What This Paper Adds: Proxy-reported psychological well-being and autonomy were within the normal range for children with Down syndrome. Physical well-being and social support scores were significantly lower than normative data. Proxy-reported scores for adolescents with Down syndrome were consistently poorer than for children with Down syndrome and the differences were clinically important. [ABSTRACT FROM AUTHOR]

Aim: To determine whether intrathecal baclofen (ITB) therapy improves performance and performance satisfaction in goal areas identified by patients' parents.Method: This study formed part of an ongoing multicentre national audit involving six paediatric ITB pump implant centres across Australia. The Canadian Occupational Performance Measure was the primary outcome measure utilized at baseline, 6 months, and 12 months after pump implants in paediatric patients receiving ITB therapy for the first time between 31st December 2009 and 31st December 2014.Results: Twenty-five children had goals identified (mean age 11y 1mo), 19 had a diagnosis of cerebral palsy and 22 were at Gross Motor Function Classification System level IV, V, or equivalent. Strong evidence for an improvement in goal performance (2.33, 95% CI 1.70, 2.96, p<0.001) and performance satisfaction scores (3.08, 95% CI 2.28, 3.88, p<0.001) were demonstrated at 6 months, compared to baseline. The differences were clinically significant and were sustained to 12 months.Interpretation: ITB therapy in paediatric patients with hypertonia results in clinically significant improvements in average performance and performance satisfaction scores.What This Paper Adds: The most commonly identified goals of parents of children treated with intrathecal (ITB) therapy were: improving ease of dressing, positioning, and transfers. ITB therapy is effective in improving performance and performance satisfaction in children with hypertonia. Score improvements are mainly evident within the first 6 months of therapy. [ABSTRACT FROM AUTHOR]

Aim: To identify a cohort of children with cerebral palsy (CP) from hospital data; determine the proportion that participated in standardized educational testing and attained a score within the normal range; and describe the relationship between test results and motor symptoms.Method: This population-based retrospective cohort study used data from New South Wales, Australia. We linked hospital data for children younger than 16 years of age admitted between 1st July 2000 and 31st March 2014 to education data from 2009 to 2014. Hospital diagnosis codes were used to identify a cohort of children with CP (n=3944) and describe their motor symptoms. Educational outcomes in the CP cohort were compared with those among children without CP.Results: Of those with educational data (n=1770), 46% were exempt from reading assessment because of intellectual or functional disability, 7% were absent or withdrawn from testing and 47% participated in testing. About 30% of all children with educational data had test scores in the normal range. The proportion was greatest among those with hemiplegia (>40%) and lowest among those with tetraplegia (<10%).Interpretation: One-third of children with CP participated in standardized testing and achieved a result in the normal range. The proportions were lower in children with more severe motor symptoms.What This Paper Adds: From 2009 to 2014, most Australian children with cerebral palsy (CP) attended a mainstream school. The rate of disability-related exemption from standardized educational testing was almost 50%. Thirty per cent of children with CP achieved educational scores in the normal range. [ABSTRACT FROM AUTHOR]

Aim: This study examined cross-sectional and longitudinal patterns of parenting stress, adult anxiety, and depression in mothers of children with profound or severe visual impairment (PVI or SVI) at 1 year and 2 years of age.Method: Mothers of a national longitudinal cohort (OPTIMUM Project) of infants with congenital disorders of the peripheral visual system and PVI (light perception at best) or SVI (basic 'form' vision of non-light reflecting objects) participated. Infant age at baseline (T1 ) was 8 to 16 months. Mothers completed the Parenting Stress Index - Short Form and the Hospital Anxiety and Depression Scale at T1 (n=79) and at follow-up 12 months later (T2 ) (n=73).Results: Mothers of the total group had higher parenting stress levels (34.6% in clinical range) than community normative data at T1 (p=0.017). Mothers of infants in the PVI subgroup had elevated stress at T1 (p=0.014) and T2 (p=0.009). The PVI subgroup was also elevated in the Difficult Child subscale at T2 (p=0.001). Within-sample differences in parenting stress between the visual impairment subgroups were found at T2 only: the PVI subgroup scored higher than the SVI subgroup (p=0.029). Adult anxiety and depression in the total group were not elevated compared with community normative data at T1 and T2 ; however, higher parenting stress was related to raised adult anxiety and depression levels at T1 and T2 (p=0.001). Regression analysis found parenting stress and lower child vision level (T1 ) predicted parenting stress (T2 ) (p=0.001; 42% variance).Interpretation: Mothers of 1-year-old infants with visual impairment showed raised risk for parenting stress, which continued to be elevated for children with PVI and those perceived as 'difficult' at 2 years. This was also a psychological risk, with greater adult anxiety and depression in those mothers with raised parenting stress. The clinical significance is that identification of parenting stress and targeted parenting, and behavioural support of the child in the first years of life is highly indicated.What This Paper Adds: Mothers of infants with visual impairment are at increased risk of parenting stress. Parenting stress was higher in mothers of children with profound visual impairment than those with severe visual impairment. High levels of parenting stress and lower infant vision at 1 year of age predicted higher parenting stress at 2 years of age. [ABSTRACT FROM AUTHOR]