• One-class support vector machine for joint variable selection and detection of postural balance degradation

      Amoud, Hassan; Snoussi, Hichem; Hewson, David; Duchêne, Jacques (Springer, 2009-12-31)
      The study of the static posture is of great interest for the analysis of the deficit of the control of balance. A method of balance analysis is to use a platform of forces which makes it possible to extract displacement of the centre of pressure (COP). The parameters extracted from COP time series prove like variables keys to supervise the degradation of balance. However, the irrelevance and\or the redundancy of some of them make difficult an effective detection of degradation. The objective of this paper is the implementation of a method of detection (SVDD) and of a procedure of selection of the relevant parameters able to detect a degradation of balance. The selected criterion of selection is the maximization of the area AUC under the curve ROC.
    • Operationalising domain 4: additional care for women and newborn infants with complications

      Madeley, Anna; University of Bedfordshire (All4Holdings Ltd, 2020-12-31)
      In this ninth article of The Practising Midwife’s education series, Domain 4 from the new Nursing and Midwifery Council (NMC) standards for proficiency is discussed. Domain 4 emphasises the midwife’s role as a coordinator of women and neonate’s care where additional care may be required. Highlighting curriculum changes at the University of Bedfordshire, Anna Madeley provides insights to how this domain has been implemented.
    • Organ donation as an 'altruistic gift': Incentives and reciprocity in deceased organ donation from a UK Polish migrant perspective

      Sharp, Chloe; Randhawa, Gurch; University of Bedfordshire (Springer, 2014-01-01)
      Background: Incentives and reciprocity have been widely debated within the literature as an alternative to altruism to motivate the public to register and consent to organ donation. This pilot study was the first to examine the views of the UK Polish migrant community toward these issues. Material and Methods: One-to-one and small group interviews were conducted in English and Polish to collect data. The interviews were recorded and transcribed and interviews in Polish were translated into English. All transcripts were coded, codes were grouped by theme and emergent themes were constantly compared to the new data until saturation. Results: Participants were motivated to donate altruistically but would accept reciprocity for organs once consent was given. Payment for organs was viewed as unfavourable but participants would accept contribution toward funeral expenses. Conclusions: Deceased organ donation was viewed as an ‘altruistic gift’. ‘Altruism’ and ‘gift’ are problematic in deceased organ donation and could explain the challenges that arise in the incentives and reciprocity debate. Mauss’s gift exchange theory could frame incentives as forming the ‘obligation to give’ and could encourage registration but could lead to coercion. Reciprocity could benefit families and be viewed as ‘fair’ and a token of gratitude.
    • Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families

      McKinney, Ailbhe; Weisblatt, Emma J.L.; Hotson, Kathryn L.; Ahmed, Zahra Bilal; Dias, Claudia; BenShalom, Dorit; Foster, Juliet; Murphy, Suzanne; Villar, Sofia S.; Belmonte, Matthew K.; et al. (Sage, 2021-04-07)
      Autistic children and adults who are non-verbal/minimally verbal or have an intellectual disability have often been excluded from Autism Spectrum Disorder research. Historical, practical and theoretical reasons for this exclusion continue to deter some researchers from work with this underserved population. We discuss why these reasons are neither convincing nor ethical, and provide strategies for dealing with practical issues. As part of a randomised controlled trial of an intervention for children with profound autism, we reflected as a multi-disciplinary team on what we had learnt from these children, their families and each other. We provide 10 strategies to overcome what appeared initially to be barriers to collecting data with this population. These hurdles and our solutions are organised by theme: interacting physically with children, how to play and test, navigating difficult behaviours, selecting suitable outcome measures, relating with parents, managing siblings, involving stakeholders, timing interactions, the clinician’s role in managing expectations, and recruitment. The aim of this article is to provide researchers with the tools to feel motivated to conduct research with children with profound autism and their families, a difficult but worthwhile endeavour. Many of these lessons also apply to conducting research with non-autistic children with intellectual disabilities.
    • Pakistani young people’s views on barriers to accessing mental health services

      Ali, Nasreen; Mclachlan, Niel; Kanwar, Shama; Randhawa, Gurch (Taylor & Francis, 2016-11-08)
      There is extensive literature acknowledging inequalities in health, particularly mental health services for adults, children and young people from Black and minority ethnic communities in the UK. However, there is little existing evidence on UK Pakistani young people’s views of mental health and mental health services. Four focus-group discussions were carried out (n = 33 participants) at local schools, madrasas and a youth group; and data analysed using a framework approach. The findings from this study highlighted a number of barriers to accessing mental health services. Participants had a poor awareness of mental health services and treatment options. Most respondents referred to GPs as their first point of contact for mental health concerns. Knowledge of treatment options for mental illness focused mainly on counselling. There was little awareness of cognitive behavioural therapy (CBT) or family-based CBT as a therapeutic regime. Based on the findings of this study it is clear that young people have a poor awareness of mental health services, specifically child and adolescent mental health services services and treatment options for mental illness. Participants suggested a culturally appropriate mental health awareness intervention for young people. It was proposed that this took the form of community-based ambassadors facilitating knowledge exchange and discussion at community level
    • The PARAChute project: remote monitoring of posture and gait for fall prevention

      Hewson, David; Duchêne, Jacques; Charpillet, François; Saboune, Jamal; Michel-Pellegrino, Valerie; Amoud, Hassan; Doussot, Michel; Paysant, Jean; Boyer, Anne; Hogrel, Jean-Yves (Springer, 2007-01-01)
      Falls in the elderly are a major public health problem due to both their frequency and their medical and social consequences. In France alone, more than two million people aged over 65 years old fall each year, leading to more than 9 000 deaths, in particular in those over 75 years old (more than 8 000 deaths). This paper describes the PARAChute project, which aims to develop a methodology that will enable the detection of an increased risk of falling in community-dwelling elderly. The methods used for a remote noninvasive assessment for static and dynamic balance assessments and gait analysis are described. The final result of the project has been the development of an algorithm for movement detection during gait and a balance signature extracted from a force plate. A multicentre longitudinal evaluation of balance has commenced in order to validate the methodologies and technologies developed in the project.
    • Parents' expectations and experiences of the 6-week baby check: a qualitative study in primary care

      Gilworth, Gill; Milton, Sarah; Chater, Angel M.; Nazareth, Irwin; Roposch, Andreas; Green, Judith; King's College London; University of Bedfordshire; University College London (Royal College of General Practitioners, 2020-11-18)
      Background: The Newborn and Infant Physical Examination (NIPE) programme requires all babies to have a comprehensive health check at 6-8 weeks of age. These are typically completed by GPs. Although person-centred care has achieved prominence in maternity care policy in recent years, there is limited empirical evidence on what parents and/or carers expect from the check, and how far experiences meet their needs. Aim: To explore the expectations and experiences of parents attending their GP for a baby check. Design & setting: A qualitative study was undertaken in primary care in London. Method: Content analysis was undertaken of transcripts of semi-structured interviews. Interviews were conducted with a total of 16 participants (14 mothers and two fathers) who had recently attended for a 6-week check for their baby. Results: Despite the availability of plentiful sources of general advice on infants' health and development, a thorough check by a trusted GP was an important milestone for most parents. They had few specific expectations of the check in terms of what examinations were undertaken, but even experienced parents anticipated reassurance about their baby's normal development. Many also hoped for reassurance about their own parenting. Parents appreciated GPs who explained what they were doing during the examination; space to raise any concerns; and combined mother and baby checks. Referrals to secondary care were generally experienced as reassuring rather than a source of anxiety. Conclusion: The baby check meets needs beyond those of the NIPE screening programme. Protecting the time for a thorough consultation is important for parents at what can be a vulnerable time.
    • Parents’ experiences of complementary feeding among a United Kingdom culturally diverse and deprived community

      Cook, Erica Jane; Powell, Faye; Ali, Nasreen; Penn-Jones, Catrin; Ochieng, Bertha; Randhawa, Gurch; University of Bedfordshire; DeMontfort University (Blackwell Publishing Ltd, 2020-11-09)
      Complementary feeding practices and adherence to health recommendations are influenced by a range of different and often interrelating factors such as socio-economic and cultural factors. However, the factors underlying these associations are often complex with less awareness of how complementary feeding approaches vary across the UK’s diverse population. This paper describes a qualitative investigation undertaken in a deprived and culturally diverse community in the UK which aimed to explore parents’ knowledge, beliefs and practices of complementary feeding. One hundred and ten mothers and fathers, self-identified as being White British, Pakistani, Bangladeshi, Black African/Caribbean or Polish took part in twenty-four focus group discussions, organised by age group, sex and ethnicity. The findings revealed that most parents initiated complementary feeding before the World Health Organisation (WHO) recommendation of 6 months. Early initiation was strongly influenced by breast feeding practices alongside the extent to which parents believed that their usual milk; that is, breastmilk or formula was fulfilling their infants' nutritional needs. The composition of diet and parents' approach to complementary feeding was closely aligned to traditional cultural practices; however, some contradictions were noted. The findings also acknowledge the pertinent role of the father in influencing the dietary practices of the wider household. Learning about both the common and unique cultural feeding attitudes and practices held by parents may help us to tailor healthy complementary feeding advice in the context of increasing diversity in the United Kingdom.
    • Patient uptake and adherence to social prescribing: a qualitative study

      Pescheny, Julia Vera; Randhawa, Gurch; Pappas, Yannis; University of Bedfordshire (Royal College of General Practitioners, 2018-08-08)
      Social prescription is an initiative that aims to link patients in primary care with sources of support within the community and voluntary sector to improve their health, wellbeing, and care experience. Such programmes usually include navigators, who work with referred patients and issue onward referrals to sources of non-medical support. Most research on social prescribing (SP) has focused on outcome evaluations, resulting in a knowledge gap of factors affecting uptake and adherence. Understanding such factors enables the refinement of programmes, which has the potential to enhance uptake and adherence, reduce health inequalities, and optimise investment. Aim To explore the experiences and views of service users, involved GPs, and navigators on factors influencing uptake and adherence to SP. Design & setting Qualitative interviews were conducted with stakeholders involved in an SP programme in the east of England (Luton). Method Data were collected from semi-structured face-to-face interviews with service users, navigators, and GPs. Thematic analysis was used to analyse the data. Results Factors affecting uptake and adherence to SP were related to patients’ trust in GPs, navigators' initial phone call, supportive navigators and service providers, free services, and perceived need and benefits. Reported barriers to uptake and adherence were fear of stigma of psychosocial problems, patient expectations, and the short-term nature of the programme. Conclusion This study provides an insight into factors affecting patient uptake and adherence to SP programmes. More research in this field, including patients who refused to participate in SP, is needed. Go to: Social prescription is an initiative that aims to link patients in primary care with sources of support within the community and voluntary sector to improve their health, wellbeing, and care experience. Such programmes usually include navigators, who work with referred patients and issue onward referrals to sources of non-medical support. Most research on social prescribing (SP) has focused on outcome evaluations, resulting in a knowledge gap of factors affecting uptake and adherence. Understanding such factors enables the refinement of programmes, which has the potential to enhance uptake and adherence, reduce health inequalities, and optimise investment. Aim To explore the experiences and views of service users, involved GPs, and navigators on factors influencing uptake and adherence to SP. Design & setting Qualitative interviews were conducted with stakeholders involved in an SP programme in the east of England (Luton). Method Data were collected from semi-structured face-to-face interviews with service users, navigators, and GPs. Thematic analysis was used to analyse the data. Results Factors affecting uptake and adherence to SP were related to patients’ trust in GPs, navigators' initial phone call, supportive navigators and service providers, free services, and perceived need and benefits. Reported barriers to uptake and adherence were fear of stigma of psychosocial problems, patient expectations, and the short-term nature of the programme. Conclusion This study provides an insight into factors affecting patient uptake and adherence to SP programmes. More research in this field, including patients who refused to participate in SP, is needed.
    • Patients' perception of using telehealth for type 2 diabetes management: a phenomenological study

      Lee, Puikwan; Greenfield, Geva; Pappas, Yannis (BioMed Central Ltd., 2018-07-13)
      BACKGROUND: There is a growing body of evidence that supports the uses of telehealth to monitor and manage people with diabetes at a distance. Despite this, the uptake of telehealth has been low. The objective of this study is to explore patients' perceptions of using telehealth for type 2 diabetes management. METHODS: Semi-structured interviews were undertaken with 10 patients from the NHS Newham area in London, UK. Data were collected using recorded semi-structured interviews. The interviews were transcribed verbatim and the analysis was guided by the phenomenological analysis approach. RESULTS: We identified three main themes for facilitating positive patient experience or acceptance of telehealth and these included: technology consideration, service perceptions and empowerment. All patients asserted that they were pleased with the technology and many also proclaimed that they could not see themselves being without it. Moreover, very few negative views were reported with respect to the use of telehealth. CONCLUSION: The patients' perceived telehealth as a potential to enhance their quality of life, allow them to live independently at home as well as help them take and be in more control over their own health state. The findings of this study therefore supports the use of telehealth for the routine care of people with type 2 diabetes. However, one must interpret the results with caution due to limitations identified in the sample.
    • Patients' perspectives on antiepileptic medication: relationships between beliefs about medicines and adherence among patients with epilepsy in UK primary care

      Chapman, S.C.E.; Horne, Robert; Chater, Angel M.; Hukins, D.; Smithson, W.H.; University College London School of Pharmacy; Northern General Hospital, Sheffield; St John's University, York (Elsevier, 2014-02-14)
      BACKGROUND: Nonadherence to antiepileptic drugs (AEDs) can result in suboptimal outcomes for patients. AIM: This study aimed to assess the utility of a theory-based approach to understanding patient perspectives on AEDs and adherence. METHOD: Patients with epilepsy, identified by a GP case note review, were mailed validated questionnaires assessing their perceptions of AEDs and their adherence to them. RESULTS: Most (84.9%) of the 398 AED-treated respondents accepted the necessity of AEDs, but over half expressed doubts, with 55% disagreeing or uncertain about the statement 'I would prefer to take epilepsy medication than risk a seizure'. Over a third (36.4%) expressed strong concerns about the potential negative effects of AEDs. We used self-report and medication possession ratio to classify 36.4% of patients as nonadherent. Nonadherence was related to beliefs about medicines and implicit attitudes toward AEDs (p<0.05). Adherence-related attitudes toward AEDs were correlated with general beliefs about pharmaceuticals (BMQ General: General Harm, General Overuse, and General Benefit scales) and perceptions of personal sensitivity to medicines (PSM scale). CONCLUSION: We identified salient, adherence-related beliefs about AEDs. Patient-centered interventions to support medicine optimization for people with epilepsy should take account of these beliefs.
    • Paving the way for culturally competent robots: a position paper

      Bruno, Barbara; Chong, Nak Young; Kamide, Hiroko; Kanoria, Sanjeev; Lee, Jaeryoung; Lim, Yuto; Pandey, Amit Kumar; Papadopoulos, Chris; Papadopoulos, Irena; Pecora, Federico; et al. (IEEE, 2017-08-28)
      Cultural competence is a well known requirement for an effective healthcare, widely investigated in the nursing literature. We claim that personal assistive robots should likewise be culturally competent, aware of general cultural characteristics and of the different forms they take in different individuals, and sensitive to cultural differences while perceiving, reasoning, and acting. Drawing inspiration from existing guidelines for culturally competent healthcare and the state-of-the-art in culturally competent robotics, we identify the key robot capabilities which enable culturally competent behaviours and discuss methodologies for their development and evaluation.
    • People living with facial disfigurement after having had noma disease: a systematic review of the literature

      Wali, Imamatu Muhammad; Regmi, Krishna; Noma Children Hospital Nigeria; University of Bedfordshire (SAGE, 2016-02-01)
      Noma disease often results in impairment, morbidity and severe facial disfigurement. This article reports a systematic review of literatures published between 2006 and 2015 to establish existing knowledge about social stigma associated with facial disfigurements. Five databases were searched and 114 citations were screened, of which only 15 met the relevant criteria. Titles and abstracts of the retrieved articles were independently reviewed. The research was heterogeneous; therefore, overall synthesis using meta-analysis was inappropriate. It can be seen that the review demonstrates that facial disfigurements are far more complex than was previously thought.
    • Perceived environmental factors associated with obesity in Libyan men and women

      Lemamsha, Hamdi Abdulla A.; Papadopoulos, Chris; Randhawa, Gurch; University of Omar Al-Mukhtar; University of Bedfordshire (MDPI, 2018-02-09)
      Background: There is a lack of research pertaining to the links between built environment attributes and obesity in adults in the Eastern Mediterranean Region. In the Libyan context, no previous studies have been conducted to investigate this relationship. Therefore, the aim of this study was to examine associations between perceived neighbourhood built environmental attributes and obesity among Libyan men and women. The prevalence of overweight and obesity was also assessed. Methods: A cross-sectional study design was used for the population-based survey in Benghazi, Libya. A multi-stage cluster sampling technique was used to select Libyan adults from the Benghazi electoral register. The Physical Activity Neighbourhood Environment Scale (PANES) was used to measure participants’ perception of neighbourhood environmental factors. Using the Tanita BC-601 Segmental Body Composition Monitor and a portable stadiometer, anthropometric measurements were taken at a mutually agreeable place by qualified nurses. Results: Four hundred and one Libyan adults were recruited (78% response rate). Participants were aged 20–65 years, 63% were female, and all had lived in Benghazi for over 10 years. The prevalence of obesity and overweight was 42.4% and 32.9% respectively. A significant association was found between BMI and 6 neighbourhood environment attributes, specifically: street connectivity, unsafe environment and committing crimes at night, and neighbourhood aesthetics. For men only, these were: access to public transport, access to recreational facilities, and unsafe environment and committing crimes during the day. The attribute ‘residential density zones’ was only significant for women. Conclusions: The study suggests that Libyan people are at risk of living in neighbourhoods with unsupportive environmental features of physical activity, which are likely to promote obesity of both genders. The findings of this study could inform Libyan health policies about interventions in the obesogenic environments that might slow the obesity epidemic and contain the public health crisis. This study suggests that further research is needed, within the Libyan context, to explore the impact of the neighbourhood environment attributes on contributing to increased obesity.
    • Personalised adherence support for maintenance treatment of inflammatory bowel disease: a tailored digital intervention to change adherence-related beliefs and barriers

      Chapman, Sarah; Sibelli, Alice; St-Clair Jones, Anja; Forbes, Alastair; Chater, Angel M.; Horne, Robert; UCL School of Pharmacy; University of Bath; King’s College London; Brighton and Sussex University Hospitals NHS Trust; et al. (Oxford University Press, 2020-05-07)
      Background and aims: Interventions to improve adherence to medication may be more effective if tailored to the individual, addressing adherence-related beliefs about treatment and overcoming practical barriers to daily use. We evaluated whether an algorithm tailoring support to address perceptual and practical barriers to adherence reduced barriers and was acceptable to patients with IBD. Methods: Participants with IBD, prescribed azathioprine and/or mesalazine were recruited via patient groups, social media and hospital clinics and allocated to Intervention or Control Groups. The online intervention comprised messages tailored to address beliefs about IBD and maintenance treatment and provide advice on overcoming practical difficulties with taking regular medication. The content was personalised to address specific perceptual and practical barriers identified by a pre-screening tool. Validated questionnaires assessed barriers to adherence and related secondary outcomes at baseline, one and three months of follow-up. Results: 329 participants were allocated to the Intervention (n=153) and Control (n=176) Groups; just under half (46.2%) completed follow-up. At one and three months the Intervention Group had significantly fewer concerns about IBD medication (p≤.01); and, at three months only, fewer doubts about treatment need, fewer reported practical barriers and lower nonadherence (p<.05). Relative to controls at follow-up, the Intervention Group were more satisfied with information about IBD medicines, and viewed pharmaceuticals in general more positively. Questionnaires, interviews and intervention usage indicated the intervention was acceptable. Conclusions: Personalised adherence support using a digital algorithm can help patients overcome perceptual (doubts about treatment necessity and medication concerns) and practical barriers to adherence.
    • Perspectives of general practitioners on the issues surrounding the late diagnosis of Alzheimer’s Disease

      Bature, Fidelia; Guinn, Barbara-Ann; Pang, Dong; Pappas, Yannis; Luton, Dunstable, Milton Keynes General Practise consortium; University of Bedfordshire (IOS Press, 2018-11-15)
      We set out to investigate the insights general practitioners (GPs) have into the early signs and symptoms of Alzheimer’s disease (AD), factors that may be responsible for the late diagnosis, as well as their recommendations for early diagnosis of AD. This was a semi-structured, qualitative and audio-recorded interview of seven GPs, from five GP surgeries in Milton Keynes and Luton, using the framework analysis. GPs reported challenges with the current patient’s consultation time, a lack of continuity of care, inadequate training, limited support for patients after diagnosis, and poor treatment of the UK’s aging population. The study highlights important changes that would facilitate the earlier diagnosis of AD.
    • A pilot study to detect balance impairment in older adults using an instrumented one-leg stance test

      Bassement, Jennifer; Shukla, Brajesh; Yadav, Sandeep; Vijay, Vivek; Mathur, Arvind; Hewson, David; Centre Hospitalier de Valenciennes; Indian Institute of Technology Jodhpur; Asian Centre for Medical Education, Research & Innovation, Jodhpur; University of Bedfordshire (American Society of Mechanical Engineers, 2020-03-12)
      The aim of this study was to investigate whether parameters from an instrumented one-leg stance on a force plate test could provide relevant information related to fall risk in older people. Twenty-five community dwelling older people and 25 young subjects performed a one-leg stance while standing on a force plate, with parameters related to transferring weight onto one leg and postural sway in singe-leg stance evaluated. Older participants were classified as being at risk of falling if their performance did not meet one of the previously-established cut-offs for the Five Times Sit-To-Stand and Timed-Up-and-Go tests. Eleven older participants were classified as having a risk of falls. The only significant difference between groups during the weight transfer phase was in the mediolateral displacement, with the fall risk group having less sway than the other groups, signifying a more precautionary approach. With respect to postural sway, both the younger subjects and the no fall risk group stabilised sufficiently to decrease their sway compared to initial values after four and six seconds, respectively. In contrast, the fall risk group was unable to stabilise during the one-leg stance, and continued to sway throughout the 10-sec recording period. These findings suggest that the normal one-leg stance test might not be suitable to detect fall risk. In contrast, an instrumented version of the test could provide valuable additional information that could identify risk of falling in older people.
    • A pilot study to detect human circadian rhythms using a novel thoracic temperature sensor

      Chkeir, Aly; Mourad-Chehade, Farah; Hewson, David; Duchêne, Jacques; Levi, Francis; Beau, Jacques; Maurice, Monique; Komarzynski, Sandra; University of Technology of Troyes; University of Bedfordshire; et al. (IEEE, 2016-12-31)
      Perturbations of circadian rhythms have been related to cancer progression and worsening of metabolic diseases. This paper aims at optimizing the analytical methods suited for the detection of such perturbations using skin temperature signals as a circadian biomarker. Five control subjects were evaluated in this pilot study. Skin temperature was recorded every five minutes for four days. Using a novel thoracic infrared sensor. Four different interpolation methods were compared in order to replace missing values and help subsequently prolong sensor battery life. A Cosinor model was used to characterize circadian rhythms, and compute relevant parameters, with their confidence limits. A divergence study is then proposed to detect changes in these parameters. The results support the enlargement of the sample size and warrant further assessment in cancer patients.
    • Placing care: the impact of the physical environment on experiences of providing and utilizing palliative care

      Agom, David; Sixsmith, Judith; Ominyi, Jude; Onyeka, Tonia; Agom, Joy C.; University of Bedfordshire; University of Dundee; University of Nigeria; Regent College, London (Lippincott, Williams & Wilkins, 2022-08-05)
      Environmental design in palliative and end-of-life care is known to improve care outcomes, service-user satisfaction, and the continuation of service uptake. No study in the literature has investigated the influence of the environment on palliative and end-of-life care in Nigeria or other African contexts. This study was designed to explore the impact of the physical environment (i.e., place and people) on staff and service users and how these influence the experiences of providing and using palliative and end-of-life care in a Nigerian hospital context. Ethnographic methodology was employed because this approach facilitates understanding of environmental realities. This study is part of a larger ethnographic research project developed to uncover aspects of organizational complexities related to the provision and use of palliative and end-of-life care in the Nigerian context. Three hundred fifty hours of participant observation was achieved, and semistructured interviews were used to gather data from 26 participants, including 10 patients, 11 members of a palliative care team, and five hospital managers. Informal chats and photographic capture were additional methods used in data collection. Thematic analysis was conducted to identify and analyze patterns within the collected data. Physical space, equipment, and placing staff were the three primary themes identified. The physical environment was untidy, and the ward layout prevented privacy, dignity, or comfort for patients and families. The equipment was old and inadequate, and the context of care was worsened by insufficient staffing and neglect of the environmental needs of the staff. Hospital design for palliative and end-of-life care in Nigeria is "autoinhibitory" (a negative feedback mechanism whereby hospital design detracts rather than promote quality of care), and a physical environment that supports the provision and utilization of care must be implemented to promote palliative and end-of-life care success. Urgent policy action is needed to improve environmental and staffing conditions to advance palliative and end-of-life care in Nigeria.
    • Point OutWords: protocol for a feasibility randomised controlled trial of a motor skills intervention to promote communicative development in non-verbal children with autism

      McKinney, Ailbhe; Hotson, Kathryn L.; Rybicki, Alicia; Weisblatt, Emma J.L.; Días, Claudia; Foster, Juliet; Villar, Sofia S.; Murphy, Suzanne; Belmonte, Matthew K.; Nottingham Trent University; et al. (Springer, 2020-01-23)
      Background: Point OutWords is a caregiver-delivered, iPad-assisted intervention for non-verbal or minimally verbal children with autism. It aims to develop prerequisite skills for communication such as manual and oral motor skills, sequencing, and symbolic representation. This feasibility trial aims to determine the viability of evaluating the clinical efficacy of Point OutWords. Methodology: We aim to recruit 46 non-verbal or minimally verbal children with autism and their families, approximately 23 per arm. Children in the intervention group will use Point OutWords for half an hour, five times a week, for 8 weeks. Children in the control group will have equal caregiver-led contact time with the iPad using a selection of control apps (e.g. sensory apps, drawing apps). Communication, motor, and daily living skills are assessed at baseline and post-intervention. Parents will keep diaries during the intervention period and will take part in focus groups when the intervention is completed. Discussion: Point OutWords was developed in collaboration with children with autism and their caregivers, to provide an intervention for a subgroup of autism that has been historically underserved. As autism is a heterogeneous condition, it is unlikely that one style of intervention will address all aspects of its symptomatology; the motor skills approach of Point OutWords can complement other therapies that address core autistic symptoms of social cognition and communication more directly. The current feasibility trial can inform the selection of outcome measures and design for future full-scale randomised controlled trials of Point OutWords and of other early interventions in autism. Trial registration: ISRCTN, ISRCTN12808402. Prospectively registered on 12 March 2019. Keywords: Autism spectrum disorder, Minimally verbal, Non-verbal, Motor, Language, Communication, iPad, Feasibility, Randomised controlled trial