• Ageing carers and intellectual disability: a scoping review

      Mahon, Aoife; Tilley, Elizabeth; Randhawa, Gurch; Pappas, Yannis; Vseteckova, Jitka; University of Bedfordshire; Open University (Emerald, 2019-11-28)
      Purpose: Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK. Design/methodology/approach: A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings. Findings: Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed. Originality/value: This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers.
    • Analysis of routinely collected data: determining associations of maternal risk factors and infant outcomes with gestational diabetes, in Pakistani, Indian, Bangladeshi and white British pregnant women in Luton, England

      Garcia, Rebecca; Ali, Nasreen; Guppy, Andy; Griffiths, Malcolm; Randhawa, Gurch; ; Open University; University of Bedfordshire; Luton & Dunstable University Hospital NHS Foundation Trust (Elsevier, 2020-12-15)
      This study aims to compare the prevalence of gestational diabetes in Indian, Pakistani, Bangladeshi and British women in Luton, England and further examine associations in maternal risk factors (age BMI, smoking status and birth outcome), with gestational diabetes, with maternal ethnicity. A retrospective analysis using routinely collected secondary data from Ciconia Maternity information System (CMiS), between 2008 and 2013. The ethnicity of women recorded as Indian, Pakistani, Bangladeshi and white British, residing in [removed] were included in the study. The outcomes for n=15,211 cases were analysed using adjusted standardised residuals, Pearson Chi-square, frequencies and percentages of women with gestational diabetes. = 43.1 df=4, p<0.001) and an early gestational age at delivery (24-37 weeks) (χ2= 4.084 df=1, p=0.043). There are important differences in the prevalence rates of gestational diabetes which varied by maternal ethnicity. Of the women who had GDM, 48.7% were Pakistani, compared with 28.3% Bangladeshi, 16.4% white British and 6.6% Indian. It is essential policy makers and service providers target GDM screening and associated interventions and future research seeks to understand the reasons behind these differences.
    • Barriers and facilitators to adherence to group exercise in institutionalized older people living with dementia: a systematic review

      Vseteckova, Jitka; Deepak-Gopinath, Manik; Borgstrom, Erica; Holland, Caroline; Draper, Jan; Pappas, Yannis; McKeown, Eamonn; Dadova, Klara; Gray, Steve; Open University; et al. (BioMed Central, 2018-12-28)
      Research suggests targeted exercise is important for people living with dementia, especially those living in residential care. The aim of this review was to collect and synthesize evidence on the known barriers and facilitators to adherence to group exercise of institutionalized older people living with dementia. We searched all available electronic databases. Additionally, we searched trial registries (clinicaltrial.gov, and WHO ICTRP) for ongoing studies. We searched for and included papers from January 1990 until September 2017 in any language. We included randomized, non-randomized trials. Studies were not eligible if participants were either healthy older people or people suffering from dementia but not living in an institution. Studies were also excluded if they were not focused on barriers and facilitators to adherence to group exercise. Using narrative analysis, we identified the following themes for barriers: bio-medical reasons and mental wellbeing and physical ability, relationships dynamics, and socioeconomic reasons. The facilitators were grouped under the following thematic frames: bio-medical benefits and benefits related to physical ability, feelings and emotions and confidence improvements, therapist and group relationships dynamics and activity related reasons. We conclude that institutionalized older people living with dementia, even those who are physically frail, incontinent and/or have mild dementia can demonstrate certain level of exercise adherence, and therefore can respond positively to exercise programs. Tailored, individually-adjusted and supported physical activity, led by a knowledgeable, engaging and well communicating therapist/facilitator improves the adherence to group exercise interventions of institutionalized older people living with dementia. Objectives Methods Results Conclusions
    • Computer-assisted versus oral-and-written history taking for the prevention and management of cardiovascular disease: a systematic review of the literature

      Pappas, Yannis; Všetečková, Jitka; Poduval, Shoba; Tseng, Pei-Ching; Car, Josip; University of Bedfordshire; Open University; City University London; Nanyang Technological University (Charles University, 2017-07-05)
      BACKGROUND AND OBJECTIVES: CVD is an important global healthcare issue; it is the leading cause of global mortality, with an increasing incidence identified in both developed and developing countries. It is also an extremely costly disease for healthcare systems unless managed effectively. In this review we aimed to: - Assess the effect of computer-assisted versus oral-and-written history taking on the quality of collected information for the prevention and management of CVD. - Assess the effect of computer-assisted versus oral-and-written history taking on the prevention and management of CVD. METHODS: A systematic review of randomised controlled trials that included participants of 16 years or older at the beginning of the study, who were at risk of CVD (prevention) or were either previously diagnosed with CVD (management). We searched all major databases. We assessed risk of bias using the Cochrane Collaboration tool. RESULTS: Two studies met the inclusion criteria. One comparing the two methods of history-taking for the prevention of cardiovascular disease n = 75. The study shows that generally the patients in the experimental group underwent more laboratory procedures, had more biomarker readings recorded and/or were given (or had reviewed), more dietary changes than the control group. The other study compares the two methods of history-taking for the management of cardiovascular disease (n = 479). The study showed that the computerized decision aid appears to increase the proportion of patients who responded to invitations to discuss CVD prevention with their doctor. The Computer- Assisted History Taking Systems (CAHTS) increased the proportion of patients who discussed CHD risk reduction with their doctor from 24% to 40% and increased the proportion who had a specific plan to reduce their risk from 24% to 37%. DISCUSSION: With only one study meeting the inclusion criteria, for prevention of CVD and one study for management of CVD we did not gather sufficient evidence to address all of the objectives of the review. We were unable to report on most of the secondary patient outcomes in our protocol. CONCLUSIONS: We tentatively conclude that CAHTS can provide individually-tailored information about CVD prevention. However, further primary studies are needed to confirm these findings. We cannot draw any conclusions in relation to any other clinical outcomes at this stage. There is a need to develop an evidence base to support the effective development and use of CAHTS in this area of practice. In the absence of evidence on effectiveness, the implementation of computer-assisted history taking may only rely on the clinicians' tacit knowledge, published monographs and viewpoint articles.
    • Diagnosis and decision-making in telemedicine

      Pappas, Yannis; Vseteckova, Jitka; Mastellos, Nikolas; Greenfield, Geva; Randhawa, Gurch; University of Bedfordshire; Open University; Imperial College London (SAGE, 2018-10-08)
      This article provides an analysis of the skills that health professionals and patients employ in reaching diagnosis and decision-making in telemedicine consultations. As governmental priorities continue to emphasize patient involvement in the management of their disease, there is an increasing need to accurately capture the provider-patient interactions in clinical encounters. Drawing on conversation analysis of 10 video-mediated consultations in 3 National Health Service settings in England, this study examines the interaction between patients, General Practitioner (GPs), nurses, and consultants during diagnosis and decision-making, with the aim to identify the range of skills that participants use in the process and capture the interprofessional communication and patient involvement in the diagnosis and decision-making phases of telemedicine consultations. The analysis shows that teleconsultations enhance collaborative working among professionals and enable GPs and nurses to develop their skills and actively participate in diagnosis and decision-making by contributing primary care-specific knowledge to the consultation. However, interprofessional interaction may result in limited patient involvement in decision-making. The findings of this study can be used to inform training programs in telemedicine that focus on the development of effective skills for professionals and the provision of information to patients.
    • Evaluating ‘Enhancing Pragmatic Language skills for Young children with Social communication impairments’ (E-PLAYS): a feasibility cluster-randomised controlled trial

      Murphy, Suzanne; Joffe, Victoria; Donald, Louisa; Radley, Jessica; Sunthararajah, Sailaa; Welch, Charlie; Bell, Kerry; Messer, David J.; Crafter, Sarah; Fairhurst, Caroline; et al. (Springer Nature, 2021-01-04)
      Background This article reports the results from a feasibility study of an intervention (‘E-PLAYS’) aimed at supporting children who experience difficulties with social communication. E-PLAYS is based around a dyadic computer game, which aims to develop collaborative and communication skills. A pilot study found that when E-PLAYS was delivered by researchers, improvements on communication test scores and on collaborative behaviours were observed. The aim of this study was to ascertain the feasibility of running a full-scale trial to test the effectiveness of E-PLAYS in a National Health Service (NHS) setting with delivery by speech and language therapists and teaching assistants. Methods The study was a two-arm feasibility cluster-randomised controlled trial of the E-PLAYS intervention with a treatment as usual control arm. Data relating to recruitment and retention, treatment fidelity, acceptability to participants, suitability of outcomes and feasibility of collecting health economic measures and of determining cost-effectiveness were collected. Speech and language therapists selected suitable children (ages 4–7 years old) from their caseload. E-PLAYS intervention (experimental group) was then delivered by teaching assistants overseen by speech and language therapists. The control group received usual care. Assessments included blinded language measures and observations, non-blinded teacher-reported measures of peer relations and classroom behaviour and non-blinded parent-reported use of health and education resources and quality of life. Results Planned recruitment was for 70 children, in the event, 50 children were recruited which was sufficient for feasibility purposes. E-PLAYS was very highly rated by children, teaching assistants and speech and language therapists and treatment fidelity did not pose any issues. We were able to collect health economic data which suggests that E-PLAYS would be a low-cost intervention. Conclusion Based on recruitment, retention and adherence rates and our outcome measures, a full-scale randomised controlled trial estimated appears feasible and warranted to assess the effectiveness of E-PLAYS for use by the NHS and schools. Trial registration ISRCTN 14818949 (retrospectively registered)
    • A qualitative study exploring the experiences of bereavement after stillbirth in Pakistani, Bangladeshi and White British mothers living in Luton, UK

      Garcia, Rebecca; Ali, Nasreen; Griffiths, Malcolm; Randhawa, Gurch; Open University; University of Bedfodshire; Luton & Dunstable University Hospital NHS Foundation Trust (Elsevier, 2020-08-29)
      This study aims to explore the experiences of bereavement after stillbirth of Pakistani, Bangladeshi and White British mothers in a town with multi-ethnic populations in England. A purposive sample of Pakistani, Bangladeshi and White British mothers aged over 16 (at time of infant birth), who suffered a stillbirth in the preceding 6-24 months and residing in a specified postcode area were invited to take part in the study, by an identified gatekeeper (audit midwife) from the local National Health Service Trust, in addition to local bereavement charities. Qualitative methods using face-to-face semi-structured interviews were undertaken, recorded and transcribed verbatim. Using framework analysis, several themes were identified. There were three main themes identified from the data; 1. knowledge and information of pregnancy and perinatal mortality; 2. attitudes and perceptions to pregnancy and perinatal mortality and 3. experiences with maternity care. The findings revealed mostly similarities in the bereavement experiences of the Pakistani, Bangladeshi and White British mothers. A few cultural and religious differences were identified. This study found important similarities in bereavement experiences of Pakistani, Bangladeshi and White British mothers and highlights considerations for policy makers and maternity services in how the timing of bereavement after care is provided, including advice surrounding the infant post-mortem.
    • A randomised controlled trial of a computerised intervention for children with social communication difficulties to support peer collaboration

      Murphy, Suzanne; Faulkner, Dorothy; Reynolds, Laura; University of Bedfordshire; Open University; Child and Adolescent Mental Health Services, Bedfordshire (Elsevier, 2014-08-05)
      An intervention aiming to support children with social communication difficulties was tested using a randomised controlled design.Children aged 5–6 years old (n = 32) were tested and selected for participation on the basis of their scores on the Test of Pragmatic Skills (TPS) and were then randomly assigned to the intervention arm or to the delayed intervention control group. Following previous research which suggested that computer technology may be particularly useful for this group of children, the intervention included a collaborative computer game which the children played with an adult.Subsequently, children’s performance as they played the game with a classmate was observed. Micro-analytic observational methods were used to analyse the audio-recorded interaction of the children as they played. Pre- and post intervention measures comprised the Test of Pragmatic Skills, children’s performance on the computer game and verbal communication measures that the children used during the game. This evaluation of the intervention shows promise. At post-test,the children who had received the intervention, by comparison to the control group who had not,showed significant gains in their scores on the Test of Pragmatic Skills (p = .009,effect size r = .42), a significant improvement in their performance on the computer game (p = .03, r = .32) and significantly greater use of high-quality questioning during collaboration (p < .001, r = .60).Furthermore,the children who received the intervention made significantly more positive statements about the game and about their partners (p = .02, r = .34) suggesting that the intervention increased their confidence and enjoyment.
    • Understanding the disproportionate effects of COVID-19 on nurses from ethnic minority backgrounds

      Qureshi, Irtiza; Garcia, Rebecca; Ali, Nasreen; Randhawa, Gurch; University of Bedfordshire; Open University (RCN Publishing, 2021-07-12)
      People from ethnic minority backgrounds in the UK have been disproportionately affected by coronavirus disease 2019 (COVID-19), with higher death rates and suboptimal health outcomes compared with those from white ethnic backgrounds. This trend is reflected in healthcare staff from ethnic minority backgrounds, including nurses, who are disproportionately affected by COVID-19 and have higher death rates from the disease. The theory of intersectionality contends that social categorisations such as gender, race and class can contribute to discrimination and result in disadvantages. In this article, the authors outline several intersecting factors that could be contributing to the disproportionate effects of COVID-19 among nurses from ethnic minority backgrounds, as well as making recommendations for further research in this area.