A systematic review was conducted to examine the efficacy of a range of treatments for autistic catatonia. The review identified 22 relevant papers, reporting a total of 28 cases including both adult ...and paediatric patients. Treatment methods included electroconvulsive therapy (ECT), medication, behavioural and sensory interventions. Quality assessment found the standard of the existing literature to be generally poor, with particular limitations in treatment description and outcome measurement. There is some limited evidence to support the use of ECT, high dose lorazepam and behavioural interventions for people with autistic catatonia. However, there is a need for controlled, high-quality trials. Reporting of side effects and adverse events should also be improved, in order to better evaluate the safety of these treatments.
Despite differences between Mother and Baby Units (MBUs) and other inpatient psychiatric settings, research has not yet explored the nature and value of compassionate care offered by MBU staff ...despite the increasing importance of compassion in healthcare. This novel study investigated the experience of compassionate care by fifteen mothers admitted to a MBU in England using the Repertory Grid Technique. Our findings indicated that these women perceived their MBU care as compassionate. Compassion was central to nursing care and clearly implicated in women's recovery from mental illness. Additionally, other staff characteristics were important to mothers, including how effectively MBU staff coped with stressful situations, staff flexibility in their care approach and how they adhered to professional boundaries. It is important to facilitate the expression of compassion which partially depends on the personalities and training of staff and the cooperation of service managers in fostering compassionate care.
Phenylketonuria (PKU) is a rare inherited metabolic disorder which can cause neurological damage if left untreated. PKU is identified through newborn screening in developed countries, and treatment ...begins immediately to prevent these severe consequences. When a child is diagnosed, parents must assume immediate responsibility for the management of PKU and prevention of neurological damage. Quantitative studies have identified significant psychosocial stressors for parents, but little is known about how the parents experience this process. This study aimed to explore the experiences of parents of children with PKU under the age of two. It is the first study to examine these experiences in this way. Seven parents were interviewed about their experiences, and interpretative phenomenological analysis was used to analyse the data. Three main themes were identified:
control
,
striving for normality
and
acceptance of PKU as a continuum.
Links between the themes and processes underpinning the results were explored with relation to existing literature and theories from a clinical psychology perspective. The role of acceptance of PKU was central to the parent’s experiences. Clinical implications and suggestions for further research are discussed.
Anxiety is a major problem for many people with Asperger’s syndrome who may have qualitatively different fears from a non-Asperger’s syndrome population. Research has relied on measures developed for ...non-Asperger’s syndrome populations that require reporting past experiences of anxiety, which may confound assessment in people with Asperger’s syndrome due to problems with autobiographical memory as are often reported in this group.
Experience sampling methodology was used to record real-time everyday experiences in 20 adults with Asperger’s syndrome and 20 neurotypical adults. Within-subject analysis was used to explore the phenomenology of thoughts occurring in people with Asperger’s syndrome when they were anxious. Comparisons were made with the group that did not have Asperger’s syndrome. The Asperger’s syndrome group were significantly more anxious than the comparison group. Factors associated with feelings of anxiety in the Asperger’s syndrome group were high levels of self-focus, worries about everyday events and periods of rumination lasting over 10 min. People in the Asperger’s syndrome group also had a tendency to think in the image form, but this was not associated with feelings of anxiety. The results are discussed with reference to psychological models of Asperger’s syndrome, cognitive models of anxiety and implications for psychological therapy for this group.
This paper presents a systematic review of the evidence on the effectiveness of mindfulness for people with intellectual disabilities. Primary studies published in the English language between 1980 ...and 2012 were identified from electronic databases, experts and citation tracking. Eleven relevant studies evaluating mindfulness training and practice were identified: seven studies with people with intellectual disabilities, two studies with staff members or teams and two studies with parents. The studies found improvements in aggression and sexual arousal for people with intellectual disabilities after mindfulness training. Training staff led to benefits for people with intellectual disabilities, decreased use of physical restraint for aggressive behaviour and increased job satisfaction. Training parents led to improved parental satisfaction and well-being and improved parent–child interactions. The reported positive findings suggest that service providers, people with intellectual disabilities and their families may want to consider mindfulness approaches. However, the findings have to be interpreted with caution due to methodological weaknesses identified in the studies. Further high-quality independent research is needed before the reported improvements can be more confidently attributed to mindfulness.
Accessible Summary
We now have a much better understanding of the specific characteristics of the many and often rare conditions that are associated with intellectual disabilities learning ...disabilities
We examined a condition called Mucopolysaccharidosis Type III MPS III sometimes called Sanfilippo syndrome
Many children with MPS III also appear to show signs of autism but an additional diagnosis of autism is time‐consuming and not always available to families
We, therefore, measured autistic symptoms in children with MPS III and found that they often had problems in social responsiveness
Children with MPS III and their families might therefore routinely benefit from the types of support offered to children with autism
Symptoms of autism spectrum disorder (ASD) are present in children with mucopolysaccharidosis type III (MPS III). Questionnaires measuring the two core domains of ASD (social responsiveness and repetitive behaviour) were completed by N = 17 parents of children with MPS III. Results indicated that scores consistent with ASD were reported by all parents on a measure of social responsiveness but lower scores were reported for repetitive behaviour. The findings provide support for the provision of additional interventions, focusing on social and communication difficulties, for children with MPS III across all phases of their disorder.
Weight-related stereotypes may have a detrimental impact on interactions between midwives and pregnant women with a body mass index (BMI) outside the recommended range of 18–30kg/m2. This paper ...explores the reciprocal construal of midwives and pregnant women with a raised BMI and considers the clinical implications of these constructs.
Ten pregnant women with a BMI≥30kg/m2 and 11 midwives and from an inner city maternity service were recruited.
Participants provided information that allowed for the creation of a repertory grid; generating psychological constructs (perceptions or attitudes) identifying similarities and differences between pregnant women and midwives across a BMI range.
Midwives were extremely conscious of being perceived as judgemental. They construed all pregnant women as anxious and vulnerable, but attributed characteristics such as “less health-conscious” and “complacent” to those with a raised BMI. The ideal pregnant woman and ideal midwife were typically construed as more likely to have a BMI of 18–30kg/m2. Pregnant women with a BMI≤18kg/m2 were construed as lacking warmth. While midwives differentiated between the elements based on role, the pregnant women construed the elements according to their BMI. Similarly, they construed those with a BMI≤18kg/m2 as having an undesirable personality, and acknowledged weight-related stereotypes for those with a raised BMI.
It is possible these constructs impact on the way midwives care for and interact with women. Midwives may be supported through reflective clinical supervision and communication skills training to reduce the perceptions of stigma experienced by women with a raised BMI. It may be beneficial to involve pregnant women with a raised BMI in service development to ensure services meet their needs.
•Repertory grid examined construals of pregnant women with a BMI≥30kg/m2 and midwives•Midwives shared a culture of construing based on weight-related stereotypes•Midwives’ construal is strongly influenced by service pressures and NHS policies•Undesirable constructs may negatively affect the way midwives interact with women•Midwives held negative construal for women with a BMI of 18–30kg/m2•Pregnant women with a raised BMI should be included in service development
Abstract Objective The aim of this study was to examine expressive language, memory, and higher executive tasks in patients with juvenile myoclonic epilepsy (JME) as compared with their siblings and ...a normal control group under video-EEG conditions. Methods Eight sibling pairs, one in each pair with JME, were compared with 16 controls matched for age, sex, ethnicity, and educational level. The participants were administered a standard comprehensive set of neuropsychological measures to assess emotional well-being, intelligence, memory, language, visuospatial skills, reaction time, attention, and higher executive function, during and without video-EEG recording. Results The JME group differed significantly from controls on measures of phonemic and semantic verbal fluency. They also scored significantly higher on the Dysexecutive Questionnaire, being much more likely to report traits associated with executive dysfunction. Qualitative inspection of the data suggested a trend for patients with JME and their siblings to perform worse than controls on some measures, notably those of expressive language and higher executive function, but on other measures the differences were not statistically significant. In contrast, the JME and sibling group performed as well as controls on the Rey Complex Figure and other tests of visuospatial skills. Conclusion The present controlled experimental case series provides support for a neuropsychological profile of patients with JME and their siblings. Significant impairments in verbal and executive functioning may have important ramifications for the social, occupational, and academic performance of people with JME. The apparent corresponding likeness in cognitive performance, exhibited independent of EEG activity, between patients with JME and their siblings warrants further exploration as similar cortical and subcortical structures may be implicated in these two groups.
Abstract
Background: Measuring the quality of care for people using neuro-rehabilitation services is a complex area requiring reliable methods that account for variable communication ...abilities/cognitive functioning. Dementia Care Mapping (DCM) is an observational method widely used in dementia care to improve person-centred care, which may be usefully applied to neuro-rehabilitation settings. Evaluation is vital to determine the tool's acceptability in this setting. Purpose: To explore the views of staff/patients regarding whether the use of DCM is acceptable in a neuro-rehabilitation setting. Method: DCM was conducted on an acute neuro-rehabilitation ward. Q-methodology, a technique for extracting subjective opinions, was used with 23 staff and 10 patients on the ward to evaluate the acceptability of DCM. Results: Factor analysis was performed separately for staff and patient Q-sorts. Each found a "consensus" factor where all participants indicated positive acceptability for the use of DCM. Further exploratory factors indicated that some staff/patients had additional views/concerns that were not captured by the first consensus factor. Conclusions: The results from this preliminary study are promising and indicate that DCM is potentially an acceptable tool to use in acute neuro-rehabilitation. Further research is needed to explore the acceptability of this tool more widely across neuro-rehabilitation settings.Implications for RehabilitationPerson-centred care is widely acknowledged as being important in all care settings, including neurorehabilitation.Dementia Care Mapping was deemed to be an acceptable approach for improving the quality of person-centred care on the basis of the views of staff and patients in a neurorehabilitation ward.Dementia Care Mapping, with adaptations for neurorehabilitation settings, successfully provides an acceptable framework for measuring and improving the quality of person-centred care in this setting.
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