Bone health and vitamin D status in children with motor disability and adults with intellectual disability

Osteoporosis is not only a disease of the elderly, but is increasingly diagnosed in chronically ill children. Children with severe motor disabilities, such as cerebral palsy (CP), have many risk factors for osteoporosis. Adults with intellectual disability (ID) are also prone to low bone mineral density (BMD) and increased fractures. This study was carried out to identify risk factors for low BMD and osteoporosis in children with severe motor disability and in adults with ID. In this study 59 children with severe motor disability, ranging in age from 5 to 16 years were evaluated. Lumbar spine BMD was measured with dual-energy x-ray absorptiometry. BMD values were corrected for bone size by calculating bone mineral apparent density (BMAD), and for bone age. The values were transformed into Z-scores by comparison with normative data. Spinal radiographs were assessed for vertebral morphology. Blood samples were obtained for biochemical parameters. Parents were requested to keep a food diary for three days. The median daily energy and nutrient intakes were calculated. Fractures were common; 17% of the children had sustained peripheral fractures and 25% had compression fractures. BMD was low in children; the median spinal BMAD Z-score was -1.0 (range -5.0 – +2.0) and the BMAD Z-score <-2.0 in 20% of the children. Low BMAD Z-score and hypercalciuria were significant risk factors for fractures. In children with motor disability, calcium intakes were sufficient, while total energy and vitamin D intakes were not. In the vitamin D intervention studies, 44 children and adolescents with severe motor disability and 138 adults with ID were studied. After baseline blood samples, the children were divided into two groups; those in the treatment group received 1000 IU peroral vitamin D3 five days a week for 10 weeks, and subjects in the control group continued with their normal diet. Adults with ID were allocated to receive either 800 IU peroral vitamin D3 daily for six months or a single intramuscular injection of 150 000 IU D3. Blood samples were obtained at baseline and after treatment. Serum concentrations of 25-OH-vitamin D (S-25-OHD) were low in all subgroups before vitamin D intervention: in almost 60% of children and in 77% of adults the S-25-OHD concentration was below 50 nmol/L, indicating vitamin D insufficiency. After vitamin D intervention, 19% of children and 42% adults who received vitamin D perorally and 12% of adults who received vitamin D intramuscularly had optimal S-25-OHD (>80 nmol/L). This study demonstrated that low BMD and peripheral and spinal fractures are common in children with severe motor disabilities. Vitamin D status was suboptimal in the majority of children with motor disability and adults with ID. Vitamin D insufficiency can be corrected with vitamin D supplements; the peroral dose should be at least 800 IU per day.

Reengaging, reenacting and reenvisaging discourses of disaster through public space performance: Austerity, art, and the art of protest

This paper offers a mediation on disaster, recovery, resilience, and restoration of balance, in both a material and a metaphorical sense, when ‘disaster’ befalls not the body politic of the nation but the body personal. In the past few decades, of course, artists, activists and scholars have deliberately tried to avoid describing personal, physical and phenomenological experiences of the disabled body in terms of difficulty and disaster. This has been part of a political move, from a medical model, in which disability, disease and illness are positioned as personal catastrophes, to a social model, in which disability is positioned as a social construct that comes from systems, institutions and infrastructure designed to exclude different bodies. It is a move that is responsible for a certain discomfort people with disabilities, and artists with disabilities, today feel towards performances that deploy disability as a metaphor for disaster, from Hijikata, to Theatre Hora. In the past five years, though, this particular discourse has begun rising again, particularly as people with disabilities fact their own anything but natural disasters as a result of the austerity measures now widespread across the US, UK, Europe and elsewhere. Measures that threaten people’s ability to live, and take part in social and institutional life, in any meaningful way. Measures that, as artist Katherine Araniello notes, also bring additional difficulty, danger, and potential for disaster as they ripple outwards across the tides of familial ties, threatening family, friends, and careers who become bound up in the struggle to do more with less. In this paper, I consider how people with disabilities use performance, particularly public space interventionalist performance, to reengage, renact and reenvisage the discourse of national, economic, environmental or other forms of disaster, the need for austerity, the need to avoid providing people with support for desires and interests as well as basic daily needs, particularly when fraud and corruption is so right, and other such ideas that have become an all too unpleasant reality for many people. Performances, for instance, like Liz Crow’s Bedding Out, where she invited people into her bed – for people with disabilities a symbolic space, which necessarily becomes more a public living room restaurant, office and so forth than a private space when poor mobility means they spend much time it in – to talk about their lives, their difficulties, and dealing with austerity. Or, for instance, like the Bolshy Divas, who mimic public and political policy, reports and advertising paranoia to undermine their discourses about austerity. I examine the effects, politics and ethics of such interventions, including examination of the comparative effect of highly bodied interventions (like Crow’s) and highly disembodied interventions (like the Bolshy Diva’s) in discourses of difficulty, disaster and austerity on a range of target spectator communities.

A comparative phase 1 clinical trial to identify anti-infective mechanisms of vitamin D in people with HIV infection

Objectives:To determine if there is a biological mechanism that explains the association between HIV disease progression and increased mortality with low circulating vitamin D levels; specifically, to determine if restoring vitamin D levels induced T-cell functional changes important for antiviral immunity.Design:This was a pilot, open-label, three-arm prospective phase 1 study.Methods:We recruited 28 patients with low plasma vitamin D (<50nmol/l 25-hydroxyvitamin D3), comprising 17 HIV+ patients (11 on HAART, six treatment-naive) and 11 healthy controls, who received a single dose of 200000IU oral cholecalciferol. Advanced T-cell flow cytometry methods measured CD4(+) T-cell function associated with viral control in blood samples at baseline and 1-month after vitamin D supplementation.Results:One month of vitamin D supplementation restored plasma levels to sufficiency (>75nmol/l) in 27 of 28 patients, with no safety issues. The most striking change was in HIV+ HAART+ patients, where increased frequencies of antigen-specific T cells expressing macrophage inflammatory protein (MIP)-1 - an important anti-HIV blocking chemokine - were observed, with a concomitant increase in plasma MIP-1, both of which correlated significantly with vitamin D levels. In addition, plasma cathelicidin - a vitamin D response gene with broad antimicrobial activity - was enhanced.Conclusion:Vitamin D supplementation modulates disease-relevant T-cell functions in HIV-infected patients, and may represent a useful adjunct to HAART therapy. Copyright (C) 2015 Wolters Kluwer Health, Inc. All rights reserved.

Good practice guidance for library and information professionals - moving towards accessible e-book platforms

Good practice guidance for publishers and procurers of e-book platforms based on the benefits and barriers identified by robust testing using real people with disabilities

Building more sustainable solutions in production-consumption systems: the case of food for people with reduced access

In new product development, the ability to integrate different dimensions of sustainability at a value chain level is still a complex, problematic goal. As product-service approaches are increasingly enabling the introduction of more sustainable paths, this paper describes the authors' experience thus far when building insights into conditions for the implementation of integrated solutions in a process of co-development and testing in real life conditions, which are driven by a social need focusing on food for people with reduced access. Throughout this process, which brought together producers, consumers and other stakeholders to design and test industrialised, sustainable solutions, empirical evidence demonstrates feasibility and usefulness of the approach and insight into the conditions for implementing interactive, comprehensive multi-stakeholder processes in real life situations. In addition, results show that the delivery of innovative solutions enabled to offer social added value, economic profits and environmental improvements under specific experimental conditions. © 2006 Elsevier Ltd. All rights reserved.

Influence of depression in a sample of people with hallux valgus

Hallux valgus (HV) is a highly-prevalent forefoot deformity associated with progressive subluxation and osteoarthritis of the first metatarsophalangeal joint; it is believed to be associated with depression. The aim of the present study was to determine the association of patients with varying degrees of HV involvement to depression using the Beck Depression Inventory (BDI). The sample consisted of 102 participants (mean age: 45.1±1.6), who attended an outpatient centre where self-report data were recorded. The degree of HV deformity was determined in both feet, and the scores on the BDI were compared. A total of 38.24% of the sample had depression, with an average BDI score of 10.55±12.36 points. There was a statistically-significant association between the degree and presence of HV in both feet (P=0.0001). People with a greater degree of HV deformity in any foot also have a significant increase in depression based on BDI scores, regardless of sex.

The meaning of environmental control systems (ECS) for people with spinal cord injury: An occupational therapist explores an intervention

Environmental Control Systems (ECS), enable people with high cervical Spinal Cord Injury (high SCI) to control and access everyday electronic devices. In Ireland, however, access for those who might benefit from ECS is limited. This study used a qualitative approach to explore the insider experience of an ECS starter-pack developed by the author, an occupational therapist. The primary research questions: what is it really like to live with ECS, and what does it mean to live with ECS, were explored using a phenomenological methodology conducted in three phases. In Phase 1 fifteen people with high SCI met twice in four focus groups to discuss experiences and expectations of ECS. Thematic analysis (Krueger & Casey, 2000), influenced by the psychological phenomenological approach (Creswell, 1998), yielded three categories of rich, practical, phenomenological findings: ECS Usage and utility; ECS Expectations and The meaning of living with ECS. Phase 1 findings informed Phase 2 which consisted of the development of a generic electronic assistive technology pack (GrEAT) that included commercially available constituents as well as short instructional videos and an information booklet. This second phase culminated in a one-person, three-week pilot trial. Phase 3 involved a six person, 8-week trial of the GrEAT, followed by individual in-depth interviews. Interpretative Phenomenological Analysis IPA (Smith, Larkin & Flowers, 2009), aided by computer software ATLAS.ti and iMindmap, guided data analysis and identification of themes. Getting used to ECS, experienced as both a hassle and engaging, resulted in participants being able to Take back a little of what you have lost, which involved both feeling enabled and reclaiming a little doing. The findings of this study provide substantial insights into what it is like to live with ECS and the meanings attributed to that experience. Several practical, real world implications are discussed.

Accommodating interruptions: a grounded theory of young people with asthma

Background: Accommodating Interruptions is a theory that emerged in the context of young people who have asthma. A background to the prevalence and management of asthma in Ireland is given to situate the theory. Ireland has the fourth highest incidence of asthma in the world, with almost one in five Irish young people having asthma. Although national and international asthma management guidelines exist it is accepted that the symptom control of asthma among the young people population is poor. Aim: The aim of this research is to investigate the lives of young people who have asthma, to allow for a deeper understanding of the issues affecting them. Methods: This research was undertaken using a Classic Grounded Theory approach. It is a systematic approach to allowing conceptual emergence from data in generating a theory that explains behaviour in resolving the participant’s main concern. The data were collected through in-depth interviews with young people aged 11-16 years who had asthma for over one year. Data were also collected from participant diaries. Constant comparative analysis, theoretical coding and memo writing were used to develop the theory. Results: The theory explains how young people resolve their main concern of being restricted, by maximizing their participation and inclusion in activities, events and relationships in spite of their asthma. They achieve this by accommodating interruptions in their lives in minimizing the effects of asthma on their everyday lives. Conclusion: The theory of accommodating interruptions explains young people’s asthma management behaviours in a new way. It allows us to understand how and why young people behave the way they do in order minimise the effect of asthma on their lives. The theory adds to the body of knowledge on young people with asthma and challenges some viewpoints regarding their behaviours.

Measuring the health-related quality of life of people with ischaemic heart disease.

Objectives—To inform researchers and clinicians about the most appropriate generic and disease specific measures of health related quality of life for use among people with ischaemic heart disease. Methods—MEDLINE and BIDS were searched for research papers which contained a report of at least one of the three most common generic instruments or at least one of the five disease specific instruments used with ischaemic heart disease patients. Evidence for the validity, reliability, and sensitivity of these instruments was critically appraised. Results—Of the three generic measures—the Nottingham health profile, sickness impact profile, and short form 36 (SF-36)—the SF-36 appears to offer the most reliable, valid, and sensitive assessment of quality of life. However, a few of the SF-36 subscales lack a sufficient degree of sensitivity to detect change in a patient’s clinical condition. According to the best available evidence, the quality of life after myocardial infarction questionnaire should be preferred to the Seattle angina questionnaire, the quality of life index cardiac version, the angina pectoris quality of life questionnaire, and the summary index. Overall, research on disease specific measures is sparse compared to the number of studies which have investigated generic measures. Conclusions—An assessment of the quality of life of people with ischaemic heart disease should comprise a disease specific measure in addition to a generic measure. The SF-36 and the quality of life after myocardial infarction questionnaire (version 2) are the most appropriate currently available generic and disease specific measures of health related quality of life, respectively. Further research into the measurement of health related quality of life of people with ischaemic heart disease is required in order to address the problems (such as lack of sensitivity to detect change) identified by the review.

Do people with diabetes who need to talk want to talk?

Aim. To examine whether the people with diabetes who ask for psychological support are those who are experiencing clinically significant levels of psychological distress.
Method. In total 300 people with diabetes were asked to complete psychometrically validated questionnaires that assessed subjective need and objective psychological distress.
Results. High levels of psychological distress were reported: 25% of the sample reported depressive symptomatology, 41% reported clinically significant levels if anxiety and 51% reported a degree of binge eating behaviour. Participants also indicated a desire to talk to diabetes professionals about various problem areas in diabetes. Chi-square analysis demonstrated that those reporting psychological distress, especially depression, were most likely to indicate a desire to talk to somebody about living with diabetes.
Conclusions. Those who want to talk are those who need to talk. Future service development issues should acknowledge the needs and expressed wishes of service users.

Providing psychological services for people with diabetes

Previous research and service development guidelines have highlighted the importance of psychological issues in diabetes care, and both people with diabetes and diabetes professionals recognise the need for specialist psychological input. This article outlines the development of a service delivery model for psychological services in diabetes care, based on a patient needs assessment and the advice of diabetes professionals. This involved an assessment of the psychological needs of people with diabetes within an urban Health Trust in Northern Ireland, and the collation of the views of local diabetes professionals. Questionnaires to assess for depression, anxiety, binge eating behaviour and diabetes-specific worries were completed by 300 people with diabetes. The participants were accessed through both primary and secondary care diabetes teams. As expected, a high level of psychological distress relative to population norms was illustrated by the patient needs assessment. Particularly high levels of binge eating behaviour were reported, and levels of distress were higher for community-managed patients than for hospital-managed patients. The diabetes professionals unanimously agreed that there is a need for specialist psychological input and contributed to the service delivery model which is outlined in this article.