The quality of research exploring in-session measures of CBT competence: a systematic review.

BACKGROUND: Cognitive behavioural therapy (CBT) is in high demand due to its strong evidence base and cost effectiveness. To ensure CBT is delivered as intended in research, training and practice, fidelity assessment is needed. Fidelity is commonly measured by assessors rating treatment sessions, using CBT competence scales (CCSs). AIMS: The current review assessed the quality of the literature examining the measurement properties of CCSs and makes recommendations for future research, training and practice. METHOD: Medline, PsychINFO, Scopus and Web of Science databases were systematically searched to identify relevant peer-reviewed, English language studies from 1980 onwards. Relevant studies were those that were primarily examining the measurement properties of CCSs used to assess adult 1:1 CBT treatment sessions. The quality of studies was assessed using a novel tool created for this study, following which a narrative synthesis is presented. RESULTS: Ten studies met inclusion criteria, most of which were assessed as being 'fair' methodological quality, primarily due to small sample sizes. Construct validity and responsiveness definitions were applied inconsistently in the studies, leading to confusion over what was being measured. CONCLUSIONS: Although CCSs are widely used, we need to pay careful attention to the quality of research exploring their measurement properties. Consistent definitions of measurement properties, consensus about adequate sample sizes and improved reporting of individual properties are required to ensure the quality of future research.

Non-medical interventions for individuals with Rett syndrome: A systematic review.

BACKGROUND: Research into Rett syndrome has included various medical interventions. Non-medical interventions are relatively under-researched. Recent technological communication intervention advances have contributed to the evidence base in Rett syndrome. METHOD: The Embase, PsycINFO and MEDLINE were systematically searched for peer-reviewed papers describing non-medical interventions for Rett syndrome. All identified papers were evaluated for methodological quality. RESULTS: Thirteen studies of adequate methodological quality were reviewed (across N = 60 participants). Interventions were primarily communication interventions including music, assistive technology, augmentative and alternative communication strategies, attentional training and cognitive rehabilitation training. All studies reported positive outcomes across communication, quality of life, brain stem activity, physical fitness and a reduction in stereotyped behaviour. However, methodological challenges to generalizability, standardization, lack of follow-up and/or small-N samples were common. CONCLUSIONS: The review highlights the paucity of high-quality research. Future research is needed to build on current research and improve validity and generalizability of interventions.

Demographic and Psychosocial Influences on Treatment Adherence for Children and Adolescents with PKU: A Systematic Review.

Phenylketonuria (PKU) is a rare genetic disorder in which the amino acid phenylalanine cannot be sufficiently metabolised. Although a build-up of phenylalanine causes irreversible cognitive impairment, this can be prevented through a strict, lifelong diet restricted in natural protein. Despite the severe consequences of poor metabolic control, many children and adolescents have phenylalanine levels above their recommended limits. This systematic review was the first to examine studies reporting demographic and/or psychosocial influences on blood phenylalanine levels, with the aim to identify factors that were robustly linked with metabolic control. Four electronic databases were searched, yielding 1,808 articles. Articles were included if they reported a statistical examination of the association between one or more demographic or psychosocial factor(s) and metabolic control (as measured by blood phenylalanine concentration) for children and adolescents with PKU. Twenty-nine studies were selected for inclusion, which examined a range of child, parent and family factors related to blood phenylalanine levels. The most reproducible association was with child age, with metabolic control worsening with increasing age. This suggests that interventions promoting treatment adherence would be particularly beneficial for adolescents. There was a paucity of studies in some areas, and the quality of included studies varied; therefore, the conclusions of this review are preliminary. Research recommendations focus on promoting the growth of the evidence-base to support clinical practice.

Treatment Adherence and Psychological Wellbeing in Maternal Carers of Children with Phenylketonuria (PKU).

Phenylketonuria (PKU), a rare metabolic disorder, causes cognitive impairment unless treated with a strict, protein-restricted diet, but few studies have examined the relationship between treatment compliance and parental wellbeing. In the present study, 46 primary caregivers of children with PKU completed measures of psychological distress, parenting stress (related to caring for a child with an illness), resilience, perceived social support and child dependency. Treatment adherence was assessed using the proportion of blood phenylalanine concentrations within target range in the preceding year. Results indicated that 59% of caregivers showed clinical levels of psychological distress, which was predicted by their parenting stress and resilience. Whilst the proportion of blood phenylalanine concentrations in range was not associated with parental distress, it was predicted by child age and caregiver's perceived support from family. Despite experiencing high levels of distress, the results indicated that caregivers' ability to adhere to treatment was not affected. Interventions to reduce parenting stress and boost caregiver resilience may have a positive effect on parental wellbeing. Additionally, interventions to promote treatment adherence benefit parents of older children, with a focus on promoting support from family members. Further research with larger sample sizes and longitudinal designs is needed to further establish causal mechanisms.

The Construal of Midwives by Pregnant Women with a Body Mass Index Greater Than or Equal to 30 kg/m2 (BMI ≥ 30 kg/m2 ): A Repertory Grid Study.

OBJECTIVE: To explore the construal of midwives by pregnant women with a body mass index greater than 30 kg/m2 (BMI ≥ 30 kg/m2 ). METHOD: Ten pregnant women with a BMI ≥ 30 kg/m2 were recruited from antenatal clinics at a maternity hospital in the North West of England. Each participant completed a repertory grid. The participants chose people to match roles including themselves, pregnant women, midwives of different BMIs and hypothetical elements. They also generated psychological constructs to describe them. RESULTS: Pregnant women with a BMI ≥ 30 kg/m2 construed themselves as vulnerable and self-conscious. Some women endorsed obesity-related stereotypes for themselves and felt responsible for their weight. The midwife with a BMI 18 < 30 kg/m2 was considered to be most similar to the ideal midwife, while the midwife with a BMI ≤ 18 kg/m2 was construed as having an undesirable interpersonal style. The midwife with a BMI ≥ 40 kg/m2 was often construed as sharing similar experiences to the pregnant women with a BMI ≥ 30 kg/m2 , such as struggling with the psychological consequences of a raised BMI. Some women construed the midwife with a BMI 30 < 40 kg/m2 in a positive way, whereas others viewed it as sharing similar feelings about weight as the midwife with a BMI ≥ 40 kg/m2 . CONCLUSIONS: The pregnant women with a BMI ≥ 30 kg/m2 in this study described perceptions of themselves and the midwives responsible for their care, which may affect their engagement and satisfaction with services. Pregnant women with a BMI ≥ 30 kg/m2 should be involved in service development activities to ensure the structure of services and the language used by midwives are acceptable and do not confirm weight-related stereotypes. Copyright © 2016 John Wiley & Sons, Ltd. KEY PRACTITIONER MESSAGE: Pregnant women with a BMI ≥ 30 kg/m2 construe themselves as vulnerable and self-conscious and perceive themselves responsible for their weight. Pregnant women with a BMI ≥ 30 kg/m2 construe midwives with a low BMI as having an undesirable, cold, interpersonal style. Midwives with a raised BMI are construed as similar to the women, because they share the uncomfortable psychological consequences of a raised BMI. The nature of pregnant women's construal may affect their engagement and satisfaction with maternity services and midwifery care.

Anxiety in high-functioning autism: A pilot study of experience sampling using a mobile platform.

Anxiety and stress are everyday issues for many people with high-functioning autism, and while cognitive-behavioural therapy is the treatment of choice for the management of anxiety, there are challenges in using it with people with high-functioning autism. This study used modified experience sampling techniques to examine everyday anxiety and stress in adults with high-functioning autism and to explore the feasibility of delivering real-time stress management techniques using a mobile platform. High levels of anxiety were found to be characterised by worry, confusing thoughts and being alone but was not associated with internal focus, imagery or rumination. Participants reported improved mood and less worry and anxious thinking in the active phase of the study. These results support previous studies indicating that people with high-functioning autism differ in their experience of anxiety and provided preliminary data on the feasibility of real-time stress management. The limitations of this approach are discussed together with considerations for future work in the area of developing clinical interventions on mobile platforms.

Factors Influencing the Use of Psychotropic Medication for Challenging Behaviour in the United Kingdom: A Q Method Investigation.

OBJECTIVES: The use of pharmacological interventions to manage challenging behaviour displayed by adults with intellectual disabilities remains controversial, with current clinical guidelines in the United Kingdom advocating the use of less invasive psychological interventions. This exploratory study aimed to discover what views and beliefs are held by a sample of NHS professionals who provided care and treatment to adults with learning disabilities, about the factors that are influential in the clinical decision-making process, surrounding the prescription of psychotropic medication, to manage challenging behaviour. METHODS: Q methodology was used to elucidate the factors considered influential in the clinical decision-making process, surrounding the prescription of medication to manage challenging behaviour. 55 participants from a range of services across the north-west of England performed a 104 statement Q-sort task. RESULTS: Principle component factor analysis with varimax rotation was performed on the 55 completed Q sorts. This revealed a four factor solution, accounting for 44% of the variance in the data. The factors were interpreted and discussed under the following headings: 'High-quality safe ethical practice', Risk is a rationale for reactive prescribing', 'Pragmatic management' and 'Contextual issues'. CONCLUSIONS: The study demonstrated that Q methodology is a useful tool for identifying subjective viewpoints held by a range of professionals, with regard to the factors that influence the clinical decision-making process surrounding the prescription of medication. The study suggests that services need to identify the wider contextual factors, which are barriers, to the use of less invasive psychological interventions.

Actigraphic investigation of circadian rhythm functioning and activity levels in children with mucopolysaccharidosis type III (Sanfilippo syndrome).

BACKGROUND: Sleep disturbance is part of the behavioural phenotype of the rare genetic condition mucopolysaccharidosis (MPS) type III. A growing body of evidence suggests that underlying disturbance in circadian rhythm functioning may explain sleep problems within the MPS III population. METHODS: Actigraphic data were recorded in eight children with MPS III over 7-10 days and compared to age-matched typically developing controls. Parameters of circadian rhythmicity and activity levels across a 24-h period were analysed. RESULTS: Statistically and clinically significant differences between the two groups were noted. Analysis indicated that children with MPS III showed significantly increased fragmentation of circadian rhythm and reduced stability with external cues (zeitgebers), compared to controls. Average times of activity onset and offset were indicative of a phase delayed sleep-wake cycle for some children in the MPS III group. Children with MPS III had significantly higher activity levels during the early morning hours (midnight-6 am) compared to controls. CONCLUSIONS: Results are consistent with previous research into MPS III and suggest that there is an impairment in circadian rhythm functioning in children with this condition. Implications for clinical practice and the management of sleep difficulties are discussed.

Care mapping in clinical neuroscience settings: Cognitive impairment and dependency.

Person-centred care can improve the well-being of patients and is therefore a key driver in healthcare developments in the UK. The current study aims to investigate the complex relationship between cognitive impairment, dependency and well-being in people with a wide range of acquired brain and spinal injuries. Sixty-five participants, with varied acquired brain and spinal injuries, were selected by convenience sampling from six inpatient clinical neuroscience settings. Participants were observed using Dementia Care Mapping - Neurorehabilitation (DCM-NR) and categorised based on severity of cognitive impairment. A significant difference in the behaviours participants engaged in, their well-being and dependency was found between the severe cognitive impairment group and the mild, moderate or no cognitive impairment groups. Dependency and cognitive impairment accounted for 23.9% of the variance in well-ill-being scores and 17.2% of the variance in potential for positive engagement. The current study highlights the impact of severe cognitive impairment and dependency on the behaviours patients engaged in and their well-being. It also affirms the utility of DCM-NR in providing insights into patient experience. Consideration is given to developing DCM-NR as a process that may improve person-centred care in neuroscience settings.

The feasibility and validity of care mapping in the clinical neurosciences.

Dementia Care Mapping (DCM) is an observational tool and process that is widely used in dementia care in measuring and improving person-centred care (PCC). DCM was previously piloted on a neurorehabilitation ward, where it was found to be feasible and acceptable in this setting. Following this, a new modified tool and accompanying manual were developed: Care Mapping - Neurorehabilitation (DCM-NR). The current study aimed to assess the feasibility and validity of DCM-NR by piloting its use in a range of clinical neuroscience settings. A mixed-methods design was used employing both quantitative and qualitative techniques. The new DCM-NR was found to be feasible for use both in terms of the suitability of its coding system and the implementation process. DCM-NR was shown to have a moderate level of concurrent validity with participants' self-report of PCC. Participants' subjective reports on their experiences of care provided validation for the areas of psychological need observed in DCM-NR. The results of this study indicate that DCM-NR is feasible and valid for use in a range of clinical neuroscience settings. Further longitudinal research is required to evaluate the impact of DCM-NR on PCC practices over time.

The typology and function of private speech in a young man with intellectual disabilities: An empirical case study.

A naturalistic observational single case study was carried out to investigate the form and function of private speech (PS) in a young man with Dandy-Walker variant syndrome and trisomy 22. Video recordings were observed, transcribed and coded to identify all combinations of type and form of PS. Through comparison between theories of PS and the results, five putative functions were identified in this case. In contrast to the predominant theoretical models of inner and PS, it is proposed that PS cannot necessarily be reduced to a single functional definition.

I Collect Therefore I am--Autonoetic Consciousness and Hoarding in Asperger Syndrome.

UNLABELLED: A growing number of studies have highlighted impairments in the ability of individuals with autism spectrum disorders to recall specific, personally experienced material. These difficulties have been related to underlying problems with autonoetic consciousness, namely the subjective awareness of one's own existence in subjective time. The current paper describes the manifestation of these difficulties in three individuals diagnosed with Asperger syndrome. For the people described, lifelong collecting and hoarding behaviours appeared to serve the function of constituting and maintaining aspects of their sense of self, particularly the sense of continuity and agency over time. On the basis of this clinical information and previous research into self-related processes in people with autism spectrum disorders, an initial model of collecting and hoarding behaviours amongst individuals with Asperger syndrome was formulated. The implications of this formulation for both clinical practice and future research are discussed. KEY PRACTITIONER MESSAGE: People with Asperger syndrome can have problems in developing a functional sense of self. Collecting and hoarding behaviour by people with Asperger syndrome may reflect such underlying difficulties in their sense of self rather than being symptoms of comorbid mental illness. Interventions need to take account of the function of such behaviours rather than solely regarding them as discrete pathological signs.

Assessment of sleep in children with mucopolysaccharidosis type III.

Sleep disturbances are prevalent in mucopolysaccharidosis Type III (MPS III), yet there is a lack of objective, ecologically valid evidence detailing sleep quantity, quality or circadian system. Eight children with MPS III and eight age-matched typically developing children wore an actigraph for 7-10 days/nights. Saliva samples were collected at three time-points on two separate days, to permit analysis of endogenous melatonin levels. Parents completed a sleep questionnaire and a daily sleep diary. Actigraphic data revealed that children with MPS III had significantly longer sleep onset latencies and greater daytime sleep compared to controls, but night-time sleep duration did not differ between groups. In the MPS III group, sleep efficiency declined, and sleep onset latency increased, with age. Questionnaire responses showed that MPS III patients had significantly more sleep difficulties in all domains compared to controls. Melatonin concentrations showed an alteration in the circadian system in MPS III, which suggests that treatment for sleep problems should attempt to synchronise the sleep-wake cycle to a more regular pattern. Actigraphy was tolerated by children and this monitoring device can be recommended as a measure of treatment success in research and clinical practice.

An investigation of the "jumping to conclusions" data-gathering bias and paranoid thoughts in Asperger syndrome.

The existence of a data-gathering bias, in the form of jumping to conclusions, and links to paranoid ideation was investigated in Asperger syndrome (AS). People with AS (N = 30) were compared to a neurotypical control group (N = 30) on the Reading the Mind in the Eyes and the Beads tasks, with self-report measures of depression, general anxiety, social anxiety, self-consciousness and paranoid ideation. The AS group performed less well than the control group on the Reading the Mind in the Eyes Task with regard to accuracy but responded more quickly and tended to make decisions on the basis of less evidence on the Beads Task with 50 % demonstrating a clear 'jumping to conclusions bias', whereas none of the control group showed such a bias. Depression and general anxiety were associated with paranoid ideation but not data-gathering style, which was contrary to expectation.

Attachment in adults with intellectual disabilities: preliminary investigation of the psychometric properties of the manchester attachment scale-third party observational measure.

BACKGROUND: The Manchester Attachment Scale-Third party observational measure (MAST) was developed to assess secure attachment style for adults with intellectual disabilities. The psychometric properties of the MAST were examined. MATERIALS AND METHODS: Professional carers (N = 40) completed the MAST and measures related to the construct of attachment theory [Edward Zigler-Yale Personality Questionnaire (EZPQ), Emotional Rating Scale (ERS) and the Learning Disability Casemix Scale (LDCS)] regarding individuals with an intellectual disability (N = 57). Individuals with an intellectual disability (N = 14) completed the Self-report Assessment of Attachment Security (SRAAS). RESULTS: The MAST was found to have good internal consistency, test-retest reliability and convergent validity. MAST scores were negatively correlated with level of intellectual disability and challenging behaviour (CB) as measured by LDCS. CONCLUSIONS: Support was provided for the reliability and validity of the MAST and a relationship between attachment security, level of intellectual disability and CB. The results of the study and implications of attachment theory for service provision are discussed.

Neuropsychological and behavioural phenotype of Dandy-Walker variant presenting in chromosome 22 trisomy: a case study.

In this study, a case of Dandy-Walker variant syndrome associated with trisomy 22 in a 17-year-old man is described. This is the first account of this combination in a person surviving into adulthood, and the neuropsychological and behavioural presentation is described in detail and a clinical formulation is presented for the benefit of researchers and clinicians.

Thinking about challenging behavior: a repertory grid study of inpatient staff beliefs.

Studies examining staff attitudes toward people with intellectual disability have traditionally used pre-determined categories and models or been open to researcher bias. The use of methods derived from personal construct psychology permits an objective investigation of staff views and attitudes without such limitations. Fourteen staff from an inpatient intellectual disability service were interviewed about their perceptions of clients with challenging behavior primarily using the repertory grid technique as developed from personal construct theory. Staff was found to construe their clients and their behaviors in a heterogeneous manner that was not readily reducible to a group average, and they did not make or use attributions about them in a consistent manner. Future research should incorporate work culture and the staff-client relationship. The results have implications for clinical decision making, team working, and clinical supervision.

Using the repertory grid technique to examine nursing staff's construal of mothers with mental health problems.

BACKGROUND: This study explored the attitudes of psychiatric nursing staff towards mothers with mental health difficulties. Working with mothers experiencing mental health problems can evoke negative reactions in staff that activate value-laden beliefs regarding the capacity of these women to care for their infants, which could diminish the provision of optimal care and treatment for patients. METHOD: Ten psychiatric nursing staff working in a specialist mother and baby unit in the North of England were interviewed about their views of various types of client by using the repertory grid technique. FINDINGS: A total of 86 constructs that clustered under 21 headings were elicited. All staff made critical judgements about some clients. Staff often described the context in which these perceptions were reached such as the behaviour of clients and the quality of the nurse-client relationship. CONCLUSIONS: Clients with a personality disorder and those who were thought to be 'bad' mothers were construed as being furthest from the self and more negatively than clients with depression or psychosis. Further training is indicated for staff working with mothers displaying challenging interactional styles; however, training packages must consider the individuality of perception and experience present within staff groups.

Staff construal of inpatients with anorexia nervosa.

The present study uses personal construct theory and the repertory grid technique to examine staff views of individual clients with a diagnosis of anorexia nervosa, in particular those clients who purge and restrict. Fourteen members of nursing staff, both qualified and non-qualified, participated in the research. The results suggest that the 14 members of staff interviewed did construe clients who purge and clients who restrict in markedly different ways. The theoretical implications of this finding are discussed.