Miracle-dz/UniFAR-FTUs huggingface dataset:
Parenting stress in mothers of adults with an intellectual disability: parental cognitions in relation to child characteristics and family support.

BACKGROUND There is a body of evidence that indicates that the cognitions of parents of children with intellectual disabilities (ID) play an important role in influencing parental stress. However, there is a paucity of evidence about the experience of parents of adult children with ID. This study sought to apply a model of parenting stress to mothers of adults with ID. Of particular interest were the parental cognitions of parenting self-esteem and parental locus of control. METHOD Face-to face interviews were administered with 44 mothers of adults with ID. They completed the Vineland Adaptive and Maladaptive Behaviour Scale, the Family Support Scale, the Parenting Sense of Competence Scale, a shortened version of the Parental Locus of Control Scale and the Parenting Stress Index. RESULTS Correlations were observed between parenting stress and the other study variables. Regression analysis revealed that parental cognitive variables predicted 61% of the variance in parenting stress. Parenting satisfaction, a subscale of the measure of parenting sense of competence, mediated the relationships between adaptive behaviour and parenting stress and between family support and parenting stress. CONCLUSIONS These results indicate the importance of cognitive variables in the stress of mothers of adults with ID. Potential avenues of future research might focus on the experience of fathers and the impact of positive perceptions as a cognitive factor.
The importance of tacit knowledge in practices of care.

BACKGROUND The paper argues that a high quality personal relationship between professionals and clients is a necessary condition of professional knowledge. This epistemological claim is developed against the background of current methods of quality assessment that rely on objectively measurable 'indicators'. METHOD A philosophical analysis regarding the nature of professional knowledge in the care sector. The analysis proceeds from Michael Polanyi's concept of tacit knowledge to account for the personal dimension of professional expertise in the care sector. RESULTS Quantitative methods of quality assessment understand 'quality of care' as being independent from the professional who generates it. Consequently, quality assessment as currently practiced necessarily renders the personal dimension of professional knowledge invisible, thereby excluding it from managerial attention and support. To indicate the relevance of Polanyi's concept of tacit knowledge, the paper offers some observations from the practice of care in a group home for people with intellectual disabilities. CONCLUSION The paper concludes that a high quality relationship between professionals and their clients is crucial for quality of care. This relationship generates the positive interaction that enables professionals to gain adequate insight in the needs of their clients.
Understanding early communication signals in autism: a study of the perception of infants' cry.

BACKGROUND Previous studies have highlighted that episodes of crying of children with autistic disorder (AD) were perceived as inexplicable from their parents who could not identify causative factors. These results supported the view of AD as related to a problem of expressing and sharing emotions. Moreover, no evidence has been presented on which characteristics of a cry episode influence the adult perception. Aim of our research is to investigate how acoustical features of crying episodes modulate their perception of infants with ASD compared with infants with typical development (TD) and infants with developmental delay (DD). METHODS Two studies were employed. In study 1, we artificially modified structural parameters (fundamental frequency, duration of the pauses, waveform modulation) of a cry episode, and then 50 adults (parents and non-parents) were asked to judge the level of distress elicited. In study 2, acoustic analysis was applied to episodes of crying selected from retrospective home videos of 42 children with AD, TD and DD at 18 months. RESULTS The results showed that (1) differences in the fundamental frequency and in other structural parameters of the cry lead parents and non-parents to perceive an episode of crying as more aversive and (2) at 18 months of age, AD episodes of crying have higher fundamental frequency (f0). CONCLUSION Our findings offer support for the hypothesis that acoustic characteristics of episodes of crying of children with autism, especially higher fundamental frequencies, may account for mental states of uneasiness in the listener.
Prevalence of emotional distress in caregiver's of cancer patients

Background: A diagnosis of cancer is an intensely stressful experience for patients. How much it affects the caregiver’s is not apparent as it leads to hidden Co morbidity in the persons involved in the care giving process. Cancer can not only affect the patients, but can equally evoke emotional distress in the caregiver’s. Aims: We carried out a study to evaluate the prevalence of anxiety and depression as well as effects of socio demographic & cancer characteristics on emotions of caregiver’s. Methods and Material: This is a cross sectional study of 100 consecutive consenting caregiver’s of diagnosed cancer patients attending an oncology department of a tertiary care hospital. Caregiver’s are those who have willfully taken the responsibility of care giving to the ailing cancer patients. Hospital Anxiety, Depression Scale (HADS) a well validated questionnaire based scale to evaluate the prevalence of anxiety, depression and emotional distress. It has 14 items 07 related to anxiety & 07 related depressions. Results: 100 caregiver’s were studied to assess the anxiety and depression levels during their care giving task. The mean anxiety & depression score of subjects were 8.28 (SD-3.45) & 8.79 (SD-3.94) respectively. 34% caregiver’s were having score between moderate to severe category with a cutoff of (>10) on both the subscales of HADS. 53% of the subjects showed emotional distress as seen in high score above cutoff of (>15) on total HADS score. The data was compiled, tabulated and analyzed by using SPSS 16 . 0 v. P < 0.05 is taken as statistically significant in our study. Conclusion: There are multiple factors involved in the emotional distress of the caregiver’s. A holistic treatment approach that encompasses both medical and psychological measures for reducing the hidden morbidity in co sufferers of cancer patients to be adapted in treatment of cancer patients.
Effect of non-genetic factors on survivability in Mecheri sheep.

Data on 1763 records of Mecheri sheep at Mecheri Sheep Research Station, Pottaneri, Salem (Tamil Nadu) over a period of sixteen years (1991 to 2006) were analyzed for pre- and post-weaning survivability (0–3 months, 3–6 months and 6–12 months of age). The effects of various non-genetic factors viz., period of lambing, season of lambing and sex of lamb on survivability were analyzed. The least squares means for 0–3, 3–6 and 6–12 months survivability were 94.52±0.63, 93.52±0.67 and 92.46±0.80%, respectively. Period and season of lambing had significant (P<0.05/P<0.01) effects on pre-weaning survivability. Post-weaning survivability was influenced in general by the period and season of lambing (P<0.01). Sex of lamb was a non-significant factor for the survivability except for 6–12 months survivability.
Knowledge and perceptions of newly graduated medical practitioners in Malaysia of their role in medical care of people with developmental disabilities

Improving content and consistency on developmental disabilities in undergraduate medical curricula has been recommended as a means of improving health outcomes for people with developmental disabilities. Although often the subject of studies in Western countries, little is known about content on developmental disabilities in undergraduate curricula in developing countries. A study was undertaken to: (1) explore content and experience with developmental disabilities received in undergraduate training by medical practitioners in Malaysia; and (2) explore perceptions of their role in the identification and management of developmental disabilities in practice. Comparisons were made according to location of training. Data were collected using a 107-item questionnaire that was administered to 230 newly graduated house officers on their first rotations in seven public hospitals in Peninsula Malaysia. Deficits and inconsistencies were indicated in both content and experience of developmental disabilities during training. Uncertainty about their role in the identification and management of developmental disabilities was evident. Greater inconsistencies and deficits were evident for respondents trained in Eastern and Middle Eastern countries compared with those trained in Malaysia and Western countries. Results suggest a need for increased content, consistency, and intentional exposure in relation to developmental disabilities during undergraduate training across all training settings.
Cut Site Selection by the Two Nuclease Domains of the Cas9 RNA-guided Endonuclease*

Background: The Cas9 RNA-guided endonuclease has been adapted for genome manipulation and regulation. Results: We have characterized target recognition and cleavage by Streptococcus thermophilus LMG18311 Cas9. Conclusion: The two nuclease domains of Cas9 select their cleavage sites by different mechanisms. Significance: These findings contribute to the molecular basis of Cas9-mediated DNA cleavage. Cas9, the RNA-guided DNA endonuclease from the CRISPR-Cas (clustered regularly interspaced short palindromic repeat–CRISPR-associated) system, has been adapted for genome editing and gene regulation in multiple model organisms. Here we characterize a Cas9 ortholog from Streptococcus thermophilus LMG18311 (LMG18311 Cas9). In vitro reconstitution of this system confirms that LMG18311 Cas9 together with a trans-activating RNA (tracrRNA) and a CRISPR RNA (crRNA) cleaves double-stranded DNA with a specificity dictated by the sequence of the crRNA. Cleavage requires not only complementarity between crRNA and target but also the presence of a short motif called the PAM. Here we determine the sequence requirements of the PAM for LMG18311 Cas9. We also show that both the efficiency of DNA target cleavage and the location of the cleavage sites vary based on the position of the PAM sequence.
The Risk Of Post-transplant Malignancy

Introduction . Transplantation-related malignancies have become a major cause of post-transplant complications. Localization of a cancer in a renal graft is rare and needs a complex approach. Objective . To assess the prevalence of the post-transplant malignancy and the characteristics of malignancies located on the renal graft. Method . We performed a retrospective study on 827 patients transplanted in our institution between January 2000 and December 2010. Recipients were classified according to the immunological risk and the type of immune suppression received. The treatment of malignancies located at the renal graft aimed at preserving the renal graft function. Results . The overall de novo malignancy prevalence was 9.43%, higher for the TMP group (10.98%) and lower for the CMP group (5.93%), p<0.0223. The prevalence of malignancies affecting the renal graft was 1.09 (9 cases). Renal cell carcinoma accounted for 2 cases and PTLD for 0.85% (7 cases). In the case of malignancy of the renal graft, the mean time from transplantation to diagnosis was 11.33 months (range 4-18 months) for PTLD and 33.67 months (range 17-60 months) for renal cell carcinoma. Conclusion . The use of tacrolimus increased the standardized incidence ratio of post-transplantation malignancies. Induction with polyclonal antibody is associated with an increased risk for malignancy.
Topical anesthesia or oral dextrose for the relief of pain in screening for retinopathy of prematurity: a randomized controlled double-blinded trial.

OBJECTIVE Compare efficacy of 0.5% proparacaine eye drops and oral 25% dextrose in reducing pain during screening for retinopathy of prematurity (ROP). PATIENTS AND METHODS Double-blinded randomized controlled trial. Twenty eligible babies were randomized. Group I received 0.5% proparacaine eye drops at first ROP screening, while Group II received 25% dextrose orally. At second examination, babies received no intervention. Pain was assessed using Premature Infant Pain Profile (PIPP) score. RESULTS The mean ( ± SD) PIPP during procedure in Group I were 15.5 ± 2.06 and 14 ± 2.4 at first and second screening (p = 0.259). The mean ( ± SD) PIPP in Group II were 14.2 ± 1. 8 and 14.9 ± 2.5 at the first and second screening (p = 0.428). Differences were not statistically significant. The PIPP scores of Group I and Group II at the first screening were also not significantly different (p = 0.165). CONCLUSION ROP screening causes moderate to severe pain and neither proparacaine nor dextrose is an effective analgesic.
Fifteen-year follow-up of thyroid status in adults with Down syndrome.

BACKGROUND The natural history of thyroid function in adults with Down syndrome is relatively unknown with limited long-term follow-up data. METHOD This study investigated annual thyroid function tests in 200 adults with Down syndrome over a 15-year period. RESULTS For healthy adults with Down syndrome there is a gradual increase in thyroxine and possible gradual decline in thyroid-stimulating hormone with age. The 15-year incidence for definite hypothyroidism remains low and subclinical hypothyroidism is not a precursor for the onset of definite hypothyroidism. CONCLUSIONS The incidence of thyroid dysfunction is markedly less than would be expected from prevalence studies. Subclinical hypothyroidism is not necessarily a precursor to definite hypothyroidism. Prevalence studies have overstated the association between thyroid dysfunction and Down syndrome. Routine screening for adults with Down syndrome who are euthyroid can be reduced to every 5 years rather than the 1-2 years, as is the present policy.
Autism spectrum disorder in Down syndrome: cluster analysis of Aberrant Behaviour Checklist data supports diagnosis.

BACKGROUND The diagnostic validity of autism spectrum disorder (ASD) based on Diagnostic and Statistical Manual of Mental Disorders (DSM) has been challenged in Down syndrome (DS), because of the high prevalence of cognitive impairments in this population. Therefore, we attempted to validate DSM-based diagnoses via an unbiased categorisation of participants with a DSM-independent behavioural instrument. METHODS Based on scores on the Aberrant Behaviour Checklist - Community, we performed sequential factor (four DS-relevant factors: Autism-Like Behaviour, Disruptive Behaviour, Hyperactivity, Self-Injury) and cluster analyses on a 293-participant paediatric DS clinic cohort. The four resulting clusters were compared with DSM-delineated groups: DS + ASD, DS + None (no DSM diagnosis), DS + DBD (disruptive behaviour disorder) and DS + SMD (stereotypic movement disorder), the latter two as comparison groups. RESULTS Two clusters were identified with DS + ASD: Cluster 1 (35.1%) with higher disruptive behaviour and Cluster 4 (48.2%) with more severe autistic behaviour and higher percentage of late onset ASD. The majority of participants in DS + None (71.9%) and DS + DBD (87.5%) were classified into Cluster 2 and 3, respectively, while participants in DS + SMD were relatively evenly distributed throughout the four clusters. CONCLUSIONS Our unbiased, DSM-independent analyses, using a rating scale specifically designed for individuals with severe intellectual disability, demonstrated that DSM-based criteria of ASD are applicable to DS individuals despite their cognitive impairments. Two DS + ASD clusters were identified and supported the existence of at least two subtypes of ASD in DS, which deserve further characterisation. Despite the prominence of stereotypic behaviour in DS, the SMD diagnosis was not identified by cluster analysis, suggesting that high-level stereotypy is distributed throughout DS. Further supporting DSM diagnoses, typically behaving DS participants were easily distinguished as a group from those with maladaptive behaviours.
Ten-Year Incidence of Tooth Loss and Dental Caries in Elderly Swedish Individuals

There has been a significant reduction in edentulism and the elderly retain more teeth into old age. The 10-year incidence of tooth loss, coronal and root caries was studied in a random sample of inhabitants of Göteborg, who were 55, 65 and 75 years old at baseline. Of the 208 persons examined at baseline, 102 (49%) participated in the follow-up examination: 56, 37 and 9, respectively, in the different age groups of 65, 75 and 85 years. In addition, for the purpose of time-trend comparisons, a new random sample of 98 individuals aged 55 years was examined. The mean numbers of remaining teeth were 24, 23, 17 and 14, respectively, in the age groups of 55, 65, 75 and 85. The corresponding mean numbers at baseline were 23, 19 and 17, respectively, in those subjects who were then 55, 65 and 75 years old. Forty-eight percent had lost no teeth during the 10-year period, while 13% had lost more than 2 teeth. The major reason for tooth extraction was dental caries and it was found in 60% of all cases. The incidence of coronal caries decreased, while that of root caries increased with age (p < 0.01). Comparing the same age groups, the frequency of root caries had decreased during the 10-year period. It could be concluded from this study that elderly people were determined to retain their teeth for as long as possible, but dental caries may be a problem among the very old.
Hepatic Abscesses in Preterm Infants: Report of Three Cases and Review of the Literature.

PURPOSE Hepatic abscess is a rare but potentially fatal entity in neonates. The aim of this study was to provide valuable data for diagnosis, management and prevention of hepatic abscess in preterm infants. METHODS A retrospective chart review was made for patients diagnosed with hepatic abscesses between 2012 and 2015. Methods included clinical and radiological review of records and evaluation of potential risk factors. RESULTS A total of three infants with hepatic abscesses were identified. All of them had low birth weight and low gestational age. Predisposing factors included prematurity, late sepsis, umbilical catheterization, necrotizing enterocolitis and previous antibiotic therapy. Isolated organisms from blood included Staphylococcus spp. in two cases and Pseudomonas spp. in one case. To the best of our knowledge, this is the first preterm case of hepatic abscess caused by Pseudomonas aeruginosa in the literature. All patients responded well to antibiotic therapy alone, and no interventional drainage was required. CONCLUSION We suggest evaluating all preterm neonates who have severe sepsis and/or necrotizing enterocolitis signs and who do not respond to prolonged antibiotic therapy with detailed abdominal ultrasound for possible hepatic abscesses as early diagnosis, and treatment favors prognosis.
The Behavior Problems Inventory-Short Form for individuals with intellectual disabilities: part I: development and provisional clinical reference data.

BACKGROUND The Behavior Problems Inventory-01 (BPI-01) is an informant-based behaviour rating instrument that was designed to assess maladaptive behaviours in individuals with intellectual disabilities (ID). Its items fall into one of three sub-scales: Self-injurious Behavior (14 items), Stereotyped Behavior (24 items), and Aggressive/Destructive Behavior (11 items). Each item is rated on a frequency scale (0 = never to 4 = hourly), and a severity scale (0 = no problem to 3 = severe problem). The BPI-01 has been successfully used in several studies and has shown acceptable to very good psychometric properties. One concern raised by some investigators was the large number of items on the BPI-01, which has reduced its user friendliness for certain applications. Furthermore, researchers and clinicians were often uncertain how to interpret their BPI-01 data without norms or a frame of reference. METHODS The Behavior Problems Inventory-Short Form (BPI-S) was empirically developed, based on an aggregated archival data set of BPI-01 data from individuals with ID from nine locations in the USA, Wales, England, the Netherlands, and Romania (n = 1122). The BPI-S uses the same rating system and the same three sub-scales as the BPI-01, but has fewer items: Self-injurious Behavior (8 items), Stereotyped Behavior (12 items), and Aggressive/Destructive Behavior (10 items). Rating anchors for the severity scales of the Self-injurious Behavior and the Aggressive/Destructive Behavior sub-scales were added in an effort to enhance the objectivity of the ratings. RESULTS The sensitivity of the BPI-S compared with the BPI-01 was high (0.92 to 0.99), and so were the correlations between the analogous BPI-01 and the BPI-S sub-scales (0.96 to 0.99). Means and standard deviations were generated for both BPI versions in a Sex-by-age matrix, and in a Sex-by-ID Level matrix. Combined sex ranges are also provided by age and level of ID. CONCLUSION In summary, the BPI-S is a very useful alternative to the BPI-01, especially for research and evaluation purposes involving groups of individuals.
Women with intellectual disabilities talk about their perceptions of sex.

BACKGROUND Sexuality is learned through sexual socialisation that women with intellectual disabilities (IDs) understand and express. Rules of sexual engagement for these women can include barriers for their socialisation, intimate partner selection, and sexual expression. These rules can become more limiting when coupled with rules of femininity that encourage sexual restraint for women. METHODS This ethnography explored how women with IDs perceived their sexuality and how sexuality functioned in their lives. Sources of data included 48 multiple and in-depth interviews and observations with 14 women. This article specifically describes how the women constructed 'sex' and how they described experiencing sex as two of their multiple expressions of sexuality in this study. RESULTS Most of the women had very limited and exclusively heterosexual sexual experiences, and the majority of women reported practicing abstinence. Criteria they identified for sex included having protected sex, marital and monogamous sex for the purpose of procreation or parenting, and having feelings for a sexual partner. Most held negative perceptions of sex they attributed to fear of the first act, fear of experiencing negative consequences, physiological concerns about the act, and perceived or actual lack of pleasure. CONCLUSIONS Although the women displayed some sense of self-determinism in their sexual behaviour, negative perceptions of sex resulted in self-imposed abstinence predicated by fear of intercourse, intimacy, or outcome. Central to their sexuality education then is increasing self-efficacy perceptions and performance of safer sex practices to prevent negative sexual consequence. Sexuality education from a positive perspective that enhances their sexual self-determinism and encourages sexual health is recommended.
Signal analysis of ventricular fibrillation

Signal analysis of electro(cardio)grams during ventricular fibrillation (VF) in dogs and human patients indicates more organization and regularity than the official WHO definition suggests. The majority of the signal is characterized by a power spectrum with narrow, equidistant peaks. In a further classification of the electrograms according to their histogram, autocorrelation function and bicoherency spectrum, VF under "normal" conditions tends to two categories: 1) damping of autocorrelation within 2 sec and symmetrical histogram without significant bicoherencies or 2) asymmetrical histogram with significant bicoherencies. VF under hypoxic conditions shows no damping of autocorrelation, high bicoherencies and flat or two-peaked histogram.