‘It’s like hope in a dark room’: a phenomenological study of Occupational Therapy Students’ experiences of participating in Students as Co- Researcher projects with asylum seekers and refugees

This study adopted an interpretivist phenomenological design to determine the value and meaning of participating in a Students as Co-Researcher’s project with asylum seekers and refugees. Semi-structured interviews were carried out with eighteen participants who had taken part in one of three projects as pre-registration occupational therapy students. Data were analysed using interpretative phenomenological analysis. Key findings were that students valued working together as part of a supportive team. Enabling meaningful occupation provided a means to work with asylum seekers and refugees using purposeful creative activities. Developing a sense of cultural awareness aided the students’ understanding of the importance of connectivity and collectivism in different cultures. The projects had a significant impact on the students’ professional identity and current role. Recommendations are to encourage occupational therapy pre-registration students to engage in Students as Co-Researchers’ projects to develop their research skills and contribute to the evidence base for occupational therapy, occupational science, and social justice. Working alongside other health and social care professions in the research projects would provide valuable interprofessional learning, offer greater diversity of thought and broader interpretation of findings. Despite growing numbers of asylum seekers and refugees in the United Kingdom and around the world, there are few occupational therapy posts in this area of practice. Posts that are available tend to be in the third sector, are not occupational therapy specific and are poorly paid. Occupational therapists should collaborate with asylum seekers and refugees to act as advocates in the design and delivery of services and to develop and influence policy at a local, national, and international level. Staff need to be trained to develop cultural humility in their practice and to develop a range of culturally appropriate assessments. Occupational therapy has a clear role in this developing area of practice

Training nurses in a competency framework to support adults with epilepsy and intellectual disability: the EpAID cluster RCT.

BACKGROUND: People with an intellectual (learning) disability (ID) and epilepsy have an increased seizure frequency, higher frequencies of multiple antiepileptic drug (AED) use and side effects, higher treatment costs, higher mortality rates and more behavioural problems than the rest of the population with epilepsy. The introduction of nurse-led care may lead to improvements in outcome for those with an ID and epilepsy; however, this has not been tested in a definitive clinical trial. OBJECTIVE: To determine whether or not ID nurses, using a competency framework developed to optimise nurse management of epilepsy in people with an ID, can cost-effectively improve clinical and quality-of-life outcomes in the management of epilepsy compared with treatment as usual. DESIGN: Cluster-randomised two-arm trial. SETTING: Community-based secondary care delivered by members of community ID teams. PARTICIPANTS: Participants were adults aged 18-65 years with an ID and epilepsy under the care of a community ID team and had had at least one seizure in the 6 months before the trial. INTERVENTIONS: The experimental intervention was the Learning Disability Epilepsy Specialist Nurse Competency Framework. This provides guidelines describing a structure and goals to support the delivery of epilepsy care and management by ID-trained nurses. MAIN OUTCOME MEASURES: The primary outcome was the seizure severity scale from the Epilepsy and Learning Disabilities Quality of Life questionnaire. Measures of mood, behaviour, AED side effects and carer strain were also collected. A cost-utility analysis was undertaken along with a qualitative examination of carers' views of participants' epilepsy management. RESULTS: In total, 312 individuals were recruited into the study from 17 research clusters. Using an intention-to-treat analysis controlling for baseline individual-level and cluster-level variables there was no significant difference in seizure severity score between the two arms. Altogether, 238 complete cases were included in the non-imputed primary analysis. Analyses of the secondary outcomes revealed no significant differences between arms. A planned subgroup analysis identified a significant interaction between treatment arm and level of ID. There was a suggestion in those with mild to moderate ID that the competency framework may be associated with a small reduction in concerns over seizure severity (standard error 2.005, 95% confidence interval -0.554 to 7.307;p = 0.092). However, neither subgroup showed a significant intervention effect individually. Family members' perceptions of nurses' management depended on the professional status of the nurses, regardless of trial arm. Economic analysis suggested that the competency framework intervention was likely to be cost-effective, primarily because of a reduction in the costs of supporting participants compared with treatment as usual. LIMITATIONS: The intervention could not be delivered blinded. Treatment as usual varied widely between the research sites. CONCLUSIONS: Overall, for adults with an ID and epilepsy, the framework conferred no clinical benefit compared with usual treatment. The economic analysis suggested that there may be a role for the framework in enhancing the cost-effectiveness of support for people with epilepsy and an ID. Future research could explore the specific value of the competency framework for those with a mild to moderate ID and the potential for greater long-term benefits arising from the continuing professional development element of the framework. TRIAL REGISTRATION: Current Controlled Trials ISRCTN96895428. FUNDING: This trial was funded by the NIHR Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 22, No. 10. See the NIHR Journals Library website for further project information.This trial was funded by the NIHR Health Technology Assessment programm

Empowering the Citizen-Consumer: Re-Regulating Consumer Information to Support the Transition to Sustainable and Health Promoting Food Systems in Canada

Both health and sustainability are stated public policy objectives in Canada, but food information rules and practices may not be optimal to support their achievement. In the absence of a stated consensus on the purposes of public information about food, the information provided is frequently determined by the marketers of product. No institution or agency has responsibility for determining the overall coherence of consumer food messages relative to these broader social goals of health and sustainability. Individual firms provide information that shows their products to best advantage, which may contradict what is provided about the product by another firm or government agency. Individual consumers do not have the resources to determine easily the completeness of any firm\u27s messages, particularly in light of the size of food industry advertising budgets. Government rules confound this problem because there is also little coherence between the parts of government that have responsibility for point of purchase, advertising rules, and labelling. The healthy eating messages of health departments are often competing with contradictory messages permitted by the regulatory framework of other arms of government. Investments in programs that successfully promote environmental stewardship in agriculture are undercut in the market because consumers cannot support those efforts with their dollars. This problem exists despite the emergence of “citizen-consumers” who have a broader approach to food purchasing than individual maximization. Only recently have some health professionals and sustainable agriculture proponents turned their attention to these factors and designed interventions that take them into account. In this paper, which builds upon earlier work by MacRae [1], we outline key short, medium and long term initiatives to facilitate the citizen-consumer phenomenon and better support consumers in their efforts to promote health and sustainability in the Canadian food system

Rheumatoid arthritis - clinical aspects: 134. Predictors of Joint Damage in South Africans with Rheumatoid Arthritis

Background: Rheumatoid arthritis (RA) causes progressive joint damage and functional disability. Studies on factors affecting joint damage as clinical outcome are lacking in Africa. The aim of the present study was to identify predictors of joint damage in adult South Africans with established RA. Methods: A cross-sectional study of 100 black patients with RA of >5 years were assessed for joint damage using a validated clinical method, the RA articular damage (RAAD) score. Potential predictors of joint damage that were documented included socio-demographics, smoking, body mass index (BMI), disease duration, delay in disease modifying antirheumatic drug (DMARD) initiation, global disease activity as measured by the disease activity score (DAS28), erythrocyte sedimentation rate (ESR), C reactive protein (CRP), and autoantibody status. The predictive value of variables was assessed by univariate and stepwise multivariate regression analyses. A p value <0.05 was considered significant. Results: The mean (SD) age was 56 (9.8) years, disease duration 17.5 (8.5) years, educational level 7.5 (3.5) years and DMARD lag was 9 (8.8) years. Female to male ratio was 10:1. The mean (SD) DAS28 was 4.9 (1.5) and total RAAD score was 28.3 (12.8). The mean (SD) BMI was 27.2 kg/m2 (6.2) and 93% of patients were rheumatoid factor (RF) positive. More than 90% of patients received between 2 to 3 DMARDs. Significant univariate predictors of a poor RAAD score were increasing age (p = 0.001), lower education level (p = 0.019), longer disease duration (p < 0.001), longer DMARD lag (p = 0.014), lower BMI (p = 0.025), high RF titre (p < 0.001) and high ESR (p = 0.008). The multivariate regression analysis showed that the only independent significant predictors of a higher mean RAAD score were older age at disease onset (p = 0.04), disease duration (p < 0.001) and RF titre (p < 0.001). There was also a negative association between BMI and the mean total RAAD score (p = 0.049). Conclusions: Patients with longstanding established RA have more severe irreversible joint damage as measured by the clinical RAAD score, contrary to other studies in Africa. This is largely reflected by a delay in the initiation of early effective treatment. Independent of disease duration, older age at disease onset and a higher RF titre are strongly associated with more joint damage. The inverse association between BMI and articular damage in RA has been observed in several studies using radiographic damage scores. The mechanisms underlying this paradoxical association are still widely unknown but adipokines have recently been suggested to play a role. Disclosure statement: C.I. has received a research grant from the Connective Tissue Diseases Research Fund, University of the Witwatersrand. All other authors have declared no conflicts of interes

Significant benefits of AIP testing and clinical screening in familial isolated and young-onset pituitary tumors

Context Germline mutations in the aryl hydrocarbon receptor-interacting protein (AIP) gene are responsible for a subset of familial isolated pituitary adenoma (FIPA) cases and sporadic pituitary neuroendocrine tumors (PitNETs). Objective To compare prospectively diagnosed AIP mutation-positive (AIPmut) PitNET patients with clinically presenting patients and to compare the clinical characteristics of AIPmut and AIPneg PitNET patients. Design 12-year prospective, observational study. Participants & Setting We studied probands and family members of FIPA kindreds and sporadic patients with disease onset ≤18 years or macroadenomas with onset ≤30 years (n = 1477). This was a collaborative study conducted at referral centers for pituitary diseases. Interventions & Outcome AIP testing and clinical screening for pituitary disease. Comparison of characteristics of prospectively diagnosed (n = 22) vs clinically presenting AIPmut PitNET patients (n = 145), and AIPmut (n = 167) vs AIPneg PitNET patients (n = 1310). Results Prospectively diagnosed AIPmut PitNET patients had smaller lesions with less suprasellar extension or cavernous sinus invasion and required fewer treatments with fewer operations and no radiotherapy compared with clinically presenting cases; there were fewer cases with active disease and hypopituitarism at last follow-up. When comparing AIPmut and AIPneg cases, AIPmut patients were more often males, younger, more often had GH excess, pituitary apoplexy, suprasellar extension, and more patients required multimodal therapy, including radiotherapy. AIPmut patients (n = 136) with GH excess were taller than AIPneg counterparts (n = 650). Conclusions Prospectively diagnosed AIPmut patients show better outcomes than clinically presenting cases, demonstrating the benefits of genetic and clinical screening. AIP-related pituitary disease has a wide spectrum ranging from aggressively growing lesions to stable or indolent disease course

’A critical evaluation of the ‘Short Stay Project’ - service users’ perspectives

Purpose: This paper critically evaluates an innovative collaboration between health, housing and social care by exploring the ‘short stay project’ apartments from service users’ perspectives and considering the effectiveness of this service model as part of enabling provision locally. Design/methodology/approach: The qualitative methodology for this evaluation was interpretative phenomenological analysis (Smith 2011), critically exploring service users’ personal lived experience of the ‘short stay project’. Three service users (n=3) participated in semi-structured interviews. Findings: This study has identified the ‘short stay project’ can prevent admission into and facilitate discharge from care and health services by offering a temporary stay in self-contained, adapted accommodation. Service users found value in staying at the apartments for differing reasons. However, practitioners must address service users’ emotional and social needs as well as physical needs to reduce the risk of occupational deprivation. Research limitations/implications: Sample size is not fully representative of the total population making transferability limited. Practical implications: This research found there is demand for temporary housing provision for service users with health, housing and/or social care needs. Social implications: Key drivers of demand for the service are social inequalities relating to homelessness, poverty and gender-based violence rather than the health-related issues that could have been expected. Further research into the development of effective integrated services which maximise service users’ wellbeing and occupational performance is recommended. Originality/value: Service models which integrate health, housing and social care can be innovative and maintain service users’ independence and wellbeing in the community. Commissioners across health, housing and social care could utilise the Better Care Fund to deliver integrated services to meet rising demands