Investigating Changes in Parent Knowledge about Obsessive Compulsive Behaviour Following Group Function-Based Cognitive Behavioural Therapy for Children with High Functioning Autism

This study investigated improvements in parent knowledge of effective intervention strategies following participation in a group function-based CBT treatment (GFbCBT) package for children with comorbid OCD and ASD. Nineteen parents of children ages 7-12 years with High Functioning Autism (HFA) participated in the 9-week treatment program. Key components of treatment included psychoeducation and mapping, cognitive-behavioural skills training, function-based interventions and exposure and response prevention (ERP). Treatment sessions also included direct parent education, which followed a behavioural skills training model (Miltenberger, 2008). Parent knowledge (N = 19) was measured pre and post treatment using a vignette about a child demonstrating obsessive-compulsive behaviour. Results of a one-tailed pairwise t-test indicated statistically significant changes (p=.036) in overall parent knowledge following participation in treatment. Statistically significant changes were also found in parents’ ability to generate ERP and function-based intervention strategies. These results provide preliminary evidence that parents benefit from active involvement in the GFbCBT treatment package

‘End of life could be on any ward really’:A qualitative study of hospital volunteers’ end-of-life care training needs and learning preferences

Background: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. Aims: To explore hospital volunteers’ end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. Design: Qualitative focus groups. Setting/participants: Volunteers from a large teaching hospital were purposively sampled. Results: Five focus groups were conducted with 25 hospital volunteers (aged 19–80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to ‘refresh’ training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. Conclusion: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals. </jats:sec

Primary care physicians’ educational needs and learning preferences in end of life care:A focus group study in the UK

BACKGROUND: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs’ EoLC educational needs and preferences for learning and evaluation. METHODS: A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour. RESULTS: Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly. CONCLUSIONS: GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training

Human sterile alpha motif domain 9, a novel gene identified as down-regulated in aggressive fibromatosis, is absent in the mouse

BACKGROUND: Neoplasia can be driven by mutations resulting in dysregulation of transcription. In the mesenchymal neoplasm, aggressive fibromatosis, subtractive hybridization identified sterile alpha motif domain 9 (SAMD9) as a substantially down regulated gene in neoplasia. SAMD9 was recently found to be mutated in normophosphatemic familial tumoral calcinosis. In this study, we studied the gene structure and function of SAMD9, and its paralogous gene, SAMD9L, and examined these in a variety of species. RESULTS: SAMD9 is located on human chromosome 7q21.2 with a paralogous gene sterile alpha motif domain 9 like (SAMD9L) in the head-to-tail orientation. Although both genes are present in a variety of species, the orthologue for SAMD9 is lost in the mouse lineage due to a unique genomic rearrangement. Both SAMD9 and SAMD9L are ubiquitously expressed in human tissues. SAMD9 is expressed at a lower level in a variety of neoplasms associated with β-catenin stabilization, such as aggressive fibromatosis, breast, and colon cancers. SAMD9 and SAMD9L contain an amino-terminal SAM domain, but the remainder of the predicted protein structure does not exhibit substantial homology to other known protein motifs. The putative protein product of SAMD9 localizes to the cytoplasm. In vitro data shows that SAMD9 negatively regulates cell proliferation. Over expression of SAMD9 in the colon cancer cell line, SW480, reduces the volume of tumors formed when transplanted into immune-deficient mice. CONCLUSION: SAMD9 and SAMD9L are a novel family of genes, which play a role regulating cell proliferation and suppressing the neoplastic phenotype. This is the first report as far as we know about a human gene that exists in rat, but is lost in mouse, due to a mouse specific rearrangement, resulting in the loss of the SAMD9 gene

Specialist palliative care services response to ethnic minority groups with COVID-19:equal but inequitable—an observational study

Objectives To develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19. Methods Cross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and χ2 tests used to explore relationships between categorical variables. Free text comments were analysed using reflexive thematic analysis. Results 277 UK services responded. 168 included hospice teams (76% of all UK hospice teams). Services supporting those from ethnic minority groups were more likely to include hospital (p<0.001) and less likely to include hospice (p<0.001) or home care teams (p=0.008). 34% (93/277) of services had cared for patients with COVID-19 or families from ethnic minority groups. 66% (61/93) of these services stated no difference in how they supported or reached these groups during the pandemic. Three themes demonstrated impact of policy introduced during the pandemic, including: disproportionate adverse impact of restricted visiting, compounded communication challenges and unmet religious and faith needs. One theme demonstrated mistrust of services by ethnic minority groups, and the final theme demonstrated a focus on equal and individualised care. Conclusions Policies introduced during the COVID-19 pandemic may have adversely impacted those from ethnic minority groups making these at-risk populations even more vulnerable. The palliative care response may have been equal but inequitable. During the para-COVID-19 period, systemic steps, including equality impact assessments, are urgently needed

How integrated are neurology and palliative care services? Results of a multicentre mapping exercise

Background: Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. Methods: The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Results: Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS). Conclusions: This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness

Abstracts from the NIHR INVOLVE Conference 2017

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Using Bi-Weekly Surveys to Portray Adolescent Partnership Dynamics: Lessons From a Mobile Diary Study.

Partnership formation is an important developmental task for adolescents, but cross-sectional and periodic longitudinal studies have lacked the measurement precision to portray partnership stability and flux and to capture the range of adolescent partnership experiences. This article assesses the promises and challenges of using bi-weekly mobile diaries administered over the course of a year to study adolescent partnership dynamics. Descriptive findings illustrate the potential of bi-weekly diaries for both capturing the longitudinal complexity and fluidity of adolescent partnerships as well as for reducing retrospection biases. Results also underscore several challenges, including those posed by missing data, and highlight several strategies for maximizing participant engagement and reliably tracing adolescent partnerships