Search results

Modern healthcare services are commonly based on shared models of care, in which a strong emphasis is placed upon the views of those in receipt of services. The purpose of this paper is to examine the parents’ experiences of their child’s neuropsychological assessment.

This was a mixed-methodology study employing both quantitative and qualitative measures.

The questionnaire measure indicated a high overall level of satisfaction. Qualitative analysis of parental interviews provided a richer insight into the parental experience and indicated four major themes.

Implications covered three major areas. Firstly, whilst a high value was placed upon the assessment, the need for further comprehensive neurorehabilitation and intervention was highlighted. Secondly, this study highlights the significant adversity experienced by such families and subsequent unmet psychological needs which also require consideration. Finally, findings from the current study could assist in improving future measures of satisfaction in similar services.

This is the first published study of parental experiences of and satisfaction with paediatric neuropsychological assessment in the UK.

Design, implementation, and evaluation are all important for integrated care. However, they miss one critical factor: education. The authors define “integrated care education” as meaningful learning that purposefully supports collaboration and the development of adaptive expertise in integrated care. The ECHO (Extensions for Community Health Outcomes) model is a novel digital health solution that uses technology-enabled learning (TEL) to facilitate, support, and model integrated care education. Using ECHO Concussion as a case study, the authors describe the effects of technology-enabled integrated care education on the micro-, meso-, and macro-dimensions of integrated care.

This case study was constructed using data extracted from ECHO Concussion from video-archived sessions, participant observation, and internal program evaluation memos. The research team met regularly to discuss the development of relevant themes to the dimensions of integrated care.

On the micro-level, clinical integration occurs through case-based learning and the development of adaptive expertise. On the meso-level, professional integration is achieved through the development of the “specialist generalist,” professional networks and empathy. Finally, on the macro-level, ECHO Concussion and the ECHO model achieve vertical and horizontal system integration in the delivery of integrated care. Vertical integration is achieved through ECHO by educating and connecting providers across sectors from primary to quaternary levels of care. Horizontal integration is achieved through the establishment of lateral peer-based networks across sectors as a result of participation in ECHO sessions with a focus on population-level health.

This case study examines the role of education in the delivery of integrated care through one program, ECHO Concussion. Using the three dimensions of integrated care on the micro-, meso-, and macro-levels, this case study is the first explicit operationalization of ECHO as a means of delivering integrated care education and supporting integrated care delivery.

Many people within secure forensic settings are expected to take part in psycho‐educational programmes as part of their treatment and rehabilitation. Many are hampered in their progress due to cognitive difficulties. This paper aims to outline the scale of the problem and to offer potential solutions.

The numbers of people who are placed in secure settings with known neuropsychological difficulties and the range of their cognitive problems are explored. It is proposed that individual education plans based on neuropsychological profiles together with guidance on the preparation and delivery of educational materials could improve the efficacy of psycho‐educational programmes.

Many people within the secure forensic estate have neuropsychological deficits. Many have suffered traumatic or other acquired brain injury or have deficits associated with substance misuse or even childhood emotional trauma. Others have cognitive difficulties specific to their mental health and occasionally their prescribed medication. A significant number will have intellectual disability (IQ<70) or be within the borderline range (IQ between 70 and 79).

Understanding neuropsychological difficulties would mean that best use is made of the psycho‐educational materials presented, thus speeding up and improving the efficacy of the rehabilitation process and potentially reducing the risk that the person poses to themselves and others. There are resources, which offer guidance to teachers of children with neuropsychological difficulties but not for the adolescent and adult forensic population. This paper addresses this gap.

The purpose of this paper is to conduct a scoping review of the literature to explore the many ways stigma affects people with FASD and to highlight the disciplines and places where discourse on FASD and stigma is taking place.

Searches were conducted in PubMed, ERIC, Family & Society Studies Worldwide, Families Studies Abstracts and Google Scholar between 2008 and 2018. Search terms focused on stigma, shame and the connection to FASD with a view to looking across social and medical science literature.

Searches identified 39 full text manuscripts, 13 of which were included in the scoping review. Stigma toward people with FASD exists in multiple professional forums across disciplines. The relationship between mother’s use of alcohol and the lasting impact on the child is a focus in the articles identified from a public health perspective. The review showed there was limited cross-disciplinary discussion evident. In total 13 articles were selected for inclusion in this review.

Negative discourses predominate with little attention being paid to possible areas of success as well as cases of lower FASD impacts. There is a significant void in work focusing on positive outcomes for people with FASD. Such discourse would support a better understanding of pathways to more positive outcomes.

This paper highlights the issue of FASD and stigma through identification of relevant literature and expands the conversation to offer insights into the challenging terrain that individuals with FASD must navigate. The issue of stigma is not linked only to individuals with FASD but also their support systems. It is critical to recognize the multiple attributions of stigma to FASD in order to effectively take up conversations across and between disciplines to promote new discourses focused on de-stigmatization.

Research in the area of NLD reports diagnostic criteria, assessment methods and treatment strategies derived from case studies and clinical experiments involving small number of participants and controls. The American Psychiatric Association reported that approximately 1% of school-age children have a mathematics disability (APA, 2003). Wicks-Nelson and Israel (2003) suggested that there is “scant information about prevalence and outcome for mathematics disorder” (p. 277). The prevalence of NLD has not been reported in research literature.

Children with acquired brain injury (ABI) are at significant risk of serious behavioural and social difficulties. The burgeoning growth of research documenting behavioural sequelae after paediatric ABI has not been met with a concomitant level of research aimed at treating the problem. The purpose of this paper is to investigate whether a manualised behavioural intervention support programme could reduce challenging behaviours in children with ABI and improve family-parental well-being and functioning.

A total of 61 parents (48 mothers and 13 fathers) of 48 children aged between three and 12 years with mild, moderate, or severe ABI received an ABI adapted “Signposts for Building Better Behaviour” programme (Hudson et al., 2001) in group-support (GS) or telephone-support (TS) format. Trained “Signposts” practitioners delivered the programme over a five-month period. The programme consisted of nine information booklets, a DVD, and workbook. All families completed pre-intervention and post-intervention evaluations.

On an average parents completed 7.92 out of a possible nine intervention sessions (range 7-9). Parents in both TS and GS formats reported significant reductions in challenging child behaviours irrespective of injury severity. They also reported significant reductions in dysfunctional parenting practices, stress and family burden.

Overall, the current research provides support for Signposts to be used with families of children with ABI in an attempt to ameliorate negative outcomes for family, parent, and child.

The purpose of this paper is to review and summarise a small but growing body of literature demonstrating that by embedding intervention within a family context offers the greatest promise of success in working with families caring for a child with traumatic brain injury (TBI).

The approach takes the form of a literature review.

The current family-centred evidence-based research indicates the potential benefits for the delivery of family focused interventions following childhood TBI.

The paper adds to the paediatric TBI literature as being of the few papers to incorporate a number of novel family-centred behavioural interventions into the one review paper.

The purpose of this paper is to provide a brief, descriptive overview of Tuberous Sclerosis Complex (TSC) research with particular reference to studies on Autism Spectrum Disorder (ASD).

A search of electronic databases was carried out to identify English language articles on TSC. The literature was explored in more detail with a focus on neurodevelopmental disorders associated with TSC such as ASD.

The review included 3,679 references. The earliest articles identified were published in the early twentieth century. Since then research on TSC has advanced rapidly and is being carried out worldwide. Just 62 studies have focused on ASD in TSC, although the number of publications is increasing over time.

More research on ASD in TSC is needed to benefit those affected by TSC and the broader ASD scientific community.

Practitioners working with children and adults with ASD should be aware of the wider health issues experienced by those with genetic conditions such as TSC. Similarly, clinicians working with those who have TSC should be aware of the high prevalence of ASD in the group and implications for the way they work with their patients.

This is the first paper to map and characterise the scientific literature on TSC. There remains a focus on the biomedical aspects of TSC with fewer studies on psychosocial/educational or family impacts. The review concludes with recommended research questions for the future.

The purpose of this paper is to determine the preliminary clinical utility of a telephone-support format of the “Signposts” (Hudson et al., 2003) behavioural intervention programme to be used with a paediatric traumatic brain injury (TBI) population.

Nine families caring for a child with moderate or severe TBI, participated in a pilot study of a TBI adapted “Signposts for Building Better Behaviour” manualised programme. The programme is designed to help parents learn positive parenting skills and strategies that empower them to successfully manage their child's challenging behaviour post-TBI. The programme consists of seven core sessions and two supplemental sessions. Parents work through the sessions with an accompaniment of guiding information booklets, a DVD with scenes modelling positive parenting strategies, and a workbook containing written exercises. At the completion of each session parents receive a telephone-support call from a trained Signposts practitioner who provides assistance and feedback on programme content.

On average parents completed eight sessions (range seven to nine) and every family completed the seven core sessions. Participation in the telephone-support calls was high with 96 per cent of calls having been successfully received by families. All parents agreed that the telephone calls were a useful part of the programme and felt that the materials were helpful for managing challenging behaviour. Paired-samples t-tests showed significant reductions for challenging behaviour from pre- to post-intervention. Parenting practices also significantly improved over the course of the intervention. In general, parents rated a high level of consumer satisfaction with the Signposts programme and its content.

Overall, these preliminary findings support the potential clinical utility of a telephone-support version of the Signposts programme to improve parenting skills and to reduce challenging child behaviour following TBI. This study has provided the impetus for a larger clinical research trial to be conducted.