People with intellectual disabilities: promoting quality end of life care

Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services. 

Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities. 

Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework. 

Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent. 

Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme

Intersectionality and the Notion of Disability in EU discrimination law

Defining the characteristics targeted by banning discrimination constitutes a central challenge for EU discrimination law, and defining disability is particular-ly challenging due to the dispute around the very concept of disability. From 2006, the Court of Justice has wrestled with this definition in six judgments, five of which were delivered from 2013. Instead of classifying the case law definition as conforming to a medical or social model of disability, this article analyses the case law with a view to illustrate challenges of defining discrimination grounds generally, demanding that a sufficiently precise and non-exclusive definition of each discrimination ground can be achieved by re-focusing EU discrimination law around the nodes of sex, race and disability. The analysis exposes that the ECJ definition of disability neither complies with the UN CRPD nor adequately responds to intersectionality theory, for example because the definition is exclu-sionary in relation to female experience of disability.

Correction of moderate myopia is associated with improvement in self-reported visual functioning among Mexican school-aged children.

PURPOSE: To quantify the impact on self-reported visual functioning of spectacle provision for school-aged children in Oaxaca, Mexico. METHODS: The Refractive Status Vision Profile (RSVP), a previously validated tool to measure the impact of refractive correction on visual functioning, was adapted for use in rural children and administered at baseline and 4 weeks (27.3 +/- 4.4 days) after the provision of free spectacles. Visual acuity with and without correction, age, sex, and spherical equivalent refraction were recorded at the time of follow-up. RESULTS: Among 88 children (mean age, 12 years; 55.7% girls), the median presenting acuity (uncorrected or with original spectacles), tested 4 weeks after the provision of free spectacles, was 6/9 (range, 6/6-6/120). Significant improvements in the following subscales of the RSVP were seen for the group as a whole after the provision of free spectacles: function, 11.2 points (P = 0.0001); symptoms, 14.3 points (P < 0.0001); total score, 10.3 points (P = 0.0001). After stratification by presenting vision in the better-seeing eye, children with 6/6 acuity (n = 22) did not have significant improvement in any subscale; those with acuity of 6/7.5 to 6/9 (n = 34) improved only on function (P = 0.02), symptoms (P = 0.005), and total score (P = 0.003); and those with acuity of 6/12 or worse improved on total score (P < 0.0001) and all subscales. Subjects (n = 31) with uncorrected myopia of -1.25 D or more had a mean improvement in total score of 15.9 points (P < 0.0001), whereas those with uncorrected myopia between -0.50 and -1.00 D inclusive (n = 53) had a mean improvement of 8 points (P = 0.01). CONCLUSIONS: Provision of spectacles to children in this setting had a significant impact on self-reported function, even at modest levels of baseline visual disability. The correlation between presenting vision/refraction and improvement and the failure of children 6/6 at baseline to improve offer evidence for a real effect.

Visual disability, visual function, and myopia among rural chinese secondary school children: the Xichang Pediatric Refractive Error Study (X-PRES)--report 1.

PURPOSE: To evaluate visual acuity, visual function, and prevalence of refractive error among Chinese secondary-school children in a cross-sectional school-based study. METHODS: Uncorrected, presenting, and best corrected visual acuity, cycloplegic autorefraction with refinement, and self-reported visual function were assessed in a random, cluster sample of rural secondary school students in Xichang, China. RESULTS: Among the 1892 subjects (97.3% of the consenting children, 84.7% of the total sample), mean age was 14.7 +/- 0.8 years, 51.2% were female, and 26.4% were wearing glasses. The proportion of children with uncorrected, presenting, and corrected visual disability (< or = 6/12 in the better eye) was 41.2%, 19.3%, and 0.5%, respectively. Myopia < -0.5, < -2.0, and < -6.0 D in both eyes was present in 62.3%, 31.1%, and 1.9% of the subjects, respectively. Among the children with visual disability when tested without correction, 98.7% was due to refractive error, while only 53.8% (414/770) of these children had appropriate correction. The girls had significantly (P < 0.001) more presenting visual disability and myopia < -2.0 D than did the boys. More myopic refractive error was associated with worse self-reported visual function (ANOVA trend test, P < 0.001). CONCLUSIONS: Visual disability in this population was common, highly correctable, and frequently uncorrected. The impact of refractive error on self-reported visual function was significant. Strategies and studies to understand and remove barriers to spectacle wear are needed.

Distribution of Childhood Health Indices: Associations with Moves along the "Property Ladder"

Background
Childhood deprivation is a major risk to public health. Poor health in the early years accumulates and is expressed in adult health inequalities. The importance of social mobility - moves into and out of poverty or, indeed, change in relative affluence - for child wellbeing is less well understood. Home ownership and house value may serve as a useful measure of relative affluence and deprivation.
Method
Analysis of the Northern Ireland Longitudinal Study dataset focused on cohort members aged 18 and under at the 2001 census and their families. Using housing tenure and house value reported in 2001 and 2011, moves along the “housing ladder” over ten years were identified. Outcome measures were physical disability and mental health status as reported in 2011. Logistic regression models tested if health outcomes varied by upward and downward changes in house value.
Results
After controlling for variations in age, sex, general health and social class, mental health is worse among those who moved to a lower value house. Compared to ‘no change’, those moving from the upper quintile of house value into social renting accommodation were almost six times more likely to report poor mental health (OR 5.90 95% CI 4.52, 7.70). Conversely, those experiencing the greatest upward movement were half as likely to report poor mental health (OR 0.46 95% CI 0.31, 0.68). There were smaller associations between physical health and downward (OR 2.66 95% CI 2.16, 3.27), and upward (OR 0.75 95% CI 0.61, 0.92) moves.
Conclusion
Poor mental health is more strongly associated with declines in living standards than with improvements. The gradient appears at multiple points along this proxy affluence-deprivation spectrum, not only at the extremes. Further research should explore whether circumstances surrounding moves, or change in social position explains the differential association between the health correlates of upward versus downward mobility.

Improving allied health professionals' research implementation behaviours for children with cerebral palsy: protocol for a before-after study

BACKGROUND: Cerebral palsy is a permanent disorder of posture and movement caused by disturbances in the developing brain. It affects approximately 1 in every 500 children in developed countries and is the most common form of childhood physical disability. People with cerebral palsy may also have problems with speech, vision and hearing, intellectual difficulties and epilepsy. Health and therapy services are frequently required throughout life, and this care should be effective and evidence informed; however, accessing and adopting new research findings into day-to-day clinical practice is often delayed.

METHODS/DESIGN: This 3-year study employs a before and after design to evaluate if a multi-strategy intervention can improve research implementation among allied health professionals (AHPs) who work with children and young people with cerebral palsy and to establish if children's health outcomes can be improved by routine clinical assessment. The intervention comprises (1) knowledge brokering with AHPs, (2) access to an online research evidence library, (3) provision of negotiated evidence-based training and education, and (4) routine use of evidence-based measures with children and young people aged 3-18 years with cerebral palsy. The study is being implemented in four organisations, with a fifth organisation acting as a comparison site, across four Australian states. Effectiveness will be assessed using questionnaires completed by AHPs at baseline, 6, 12 and 24 months, and by monitoring the extent of use of evidence-based measures. Children's health outcomes will be evaluated by longitudinal analyses.

DISCUSSION: Government, policy makers and service providers all seek evidence-based information to support decision-making about how to distribute scarce resources, and families are seeking information to support intervention choices. This study will provide knowledge about what constitutes an efficient, evidence-informed service and which allied health interventions are implemented for children with cerebral palsy.

TRIAL REGISTRATION: Trial is not a controlled healthcare intervention and is not registered.

Systematic review of tools to measure outcomes for young children with autism spectrum disorder

BACKGROUND: The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children's progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.

OBJECTIVES: To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.

METHODS: The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.

RESULTS: The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains 'Impairments', 'Activity Level Indicators', 'Participation', and 'Family Measures'. In review 1, 10,154 papers were sifted - 3091 by full text - and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a 'recommended battery' for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).

CONCLUSIONS: This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.

FUTURE WORK: Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.

STUDY REGISTRATION: This study is registered as PROSPERO CRD42012002223.

FUNDING: The National Institute for Health Research Health Technology Assessment programme.

‘Disability and HIV in Africa: Breaking the barriers to sexual health care’

Three decades in to the HIV pandemic, the issues affecting people with disabilities remains less known. Increasing attention has been given to this overlooked population when it comes to HIV prevention, treatment and care. This is related to the significant unmet sexual and reproductive health care needs facing people with disabilities worldwide. This article discusses the barriers to sexual health for people with disabilities in Africa, and presents an argument about how mainstream HIV prevention work and research does not adequately attend to the sorts of systemic barriers that exclude people with disabilities, which a more targeted, and critical approach could.

AB1258­HPR pilot study: does a mediterranean diet­based weight loss programme improve health outcomes in overweight older women with knee osteoarthritis?

Osteoarthritis (OA) is one of the leading causes of pain and disability among older adults, particularly women. Pain and mobility disability are major consequences of knee OA which and can interfere with the functional autonomy of elderly and thus, making it difficult to perform activities of daily living. Evidence suggests that obesity is strongly linked to knee OA and that non­pharmacological therapy should be based on physical activity and weight loss in case of overweight and obesity. A positive relationship between adherence to the Mediterranean diet and health outcomes has been widely discussed in scientific literature, including its potential benefits in weight loss.

‘Sport for Yes’? The Precarious Positioning of Scottish Athletes in the Scottish Independence Referendum Campaign.

This paper will critically consider the implications for Scottish athletes who have publicly stated their personal opinion on the Scottish independence referendum. Developments such as the inclusion of sport within the Scottish Government’s White Paper on Scottish independence, the establishment of the ‘Working Group on Scottish Sport’ and the establishment of the ‘Sport for Yes’ campaign group demonstrate the harnessing of sporting issues as an additional, if somewhat peripheral, debate point in the referendum campaigns (Lafferty, 2014; Scottish Government, 2013; Working Group on Scottish Sport, 2013, 2014). The latter of these developments, the establishment of the ‘Sport for Yes’ campaign group, is of particular interest, offering evidence of the explicit political mobilisation of past and present athletes in support of the ‘Yes Scotland’ pro-independence campaign. Whilst the pro-union ‘Better Together’ campaign does not possess a comparable group to the ‘Sport for Yes’ example, examples of athletes discussing the potential negative impact of Scottish independence on the funding and organisation of Scottish sport have been capitalised upon by pro-union campaigners, as exemplified in the comments of Sir Chris Hoy (BBC, 2013; Daily Record, 2013a). Given the negative reaction to Hoy’s comments from certain pro-independence campaigners (Daily Record, 2013b; Swanson, 2013), other Scottish athletes have understandably attempted to avoid controversy by refusing to align with either side of the referendum debate. This paper will therefore consider the potential pitfalls for athletes who publicly announce their political positions, whilst also scrutinising the extent to which such pronouncements are of political significance, drawing upon past academic analyses of the interrelationship between sport and politics (e.g. Coghlan, 1990; Houlihan, 1994; Jeffreys, 2012; Macfarlane, 1986; Whannel, 2008).

Using Workload Measurement Tools in Diverse Care Contexts: the Experience of Staff in Mental Health and Learning Disability Inpatient Settings

Introduction The critical challenge of determining the correct level and skill-mix of nursing staff required to deliver safe and effective healthcare has become an international concern. It is recommended that evidence-based staffing decisions are central to the development of future workforce plans. Workforce planning in mental health and learning disability nursing is largely under-researched with few tools available to aid the development of evidence-based staffing levels in these environments. Aim It was the aim of this study to explore the experience of staff using the Safer Nursing Care Tool (SNCT) and the Mental Health and Learning Disability Workload Tool (MHLDWT) in mental health and learning disability environments. Method Following a 4-week trial period of both tools a survey was distributed via Qualtrics on-line survey software to staff members who used the tools during this time. Results The results of the survey revealed that the tools were considered a useful resource to aid staffing decisions; however specific criticisms were highlighted regarding their suitability to psychiatric intensive care units (PICU) and learning disability wards. Discussion This study highlights that further development of workload measurement tools is required to support the implementation of effective workforce planning strategies within mental health and learning disability services. Implications for Practice With increasing fiscal pressures the need to provide cost-effective care is paramount within NHS services. Evidence-based workforce planning is therefore necessary to ensure that appropriate levels of staff are determined. This is of particular importance within mental health and learning disability services due to the reduction in the number of available beds and an increasing focus on purposeful admission and discharge.

Is childhood a 'disability'? Exploring the exclusion of children from age discrimination provisions in the Equality Act 2010

The Equality Act 2010 was enacted with the aim of simplifying existing equality legislation and included extending age discrimination protection beyond the workplace to cover the provision of goods, facilities and services. Under-18s, however, were omitted from such provisions, despite lobbying from a number of different organisations and parliamentarians. This article considers the significance of this exclusion. It both challenges the legitimacy of the decision to exclude children, and considers the difficulties that arise from including under-18s within age discrimination provisions, namely those relating to children’s autonomy, capacity and right to equal treatment. In particular, it asks whether the question of children’s capacity to make decisions, the main ground on which children are denied all the human rights enjoyed by adults, should be revisited in light of the adoption of the Convention on the Rights of Persons with Disabilities, under which a finding of incapacity on the basis of disability constitutes discrimination. It goes on to explore other areas of convergence between childhood and disability studies, and particularly the benefits, and shortcomings, of a ‘social model’ approach to childhood.

Appropriateness criteria for surgery improve clinical outcomes in patients with low back pain and/or sciatica.

STUDY DESIGN: Prospective, controlled, observational outcome study using clinical, radiographic, and patient/physician-based questionnaire data, with patient outcomes at 12 months follow-up. OBJECTIVE: To validate appropriateness criteria for low back surgery. SUMMARY OF BACKGROUND DATA: Most surgical treatment failures are attributed to poor patient selection, but no widely accepted consensus exists on detailed indications for appropriate surgery. METHODS: Appropriateness criteria for low back surgery have been developed by a multispecialty panel using the RAND appropriateness method. Based on panel criteria, a prospective study compared outcomes of patients appropriately and inappropriately treated at a single institution with 12 months follow-up assessment. Included were patients with low back pain and/or sciatica referred to the neurosurgical department. Information about symptoms, neurologic signs, the health-related quality of life (SF-36), disability status (Roland-Morris), and pain intensity (VAS) was assessed at baseline, at 6 months, and at 12 months follow-up. The appropriateness criteria were administered prospectively to each clinical situation and outside of the clinical setting, with the surgeon and patients blinded to the results of the panel decision. The patients were further stratified into 2 groups: appropriate treatment group (ATG) and inappropriate treatment group (ITG). RESULTS: Overall, 398 patients completed all forms at 12 months. Treatment was considered appropriate for 365 participants and inappropriate for 33 participants. The mean improvement in the SF-36 physical component score at 12 months was significantly higher in the ATG (mean: 12.3 points) than in the ITG (mean: 6.8 points) (P = 0.01), as well as the mean improvement in the SF-36 mental component score (ATG mean: 5.0 points; ITG mean: -0.5 points) (P = 0.02). Improvement was also significantly higher in the ATG for the mean VAS back pain (ATG mean: 2.3 points; ITG mean: 0.8 points; P = 0.02) and Roland-Morris disability score (ATG mean: 7.7 points; ITG mean: 4.2 points; P = 0.004). The ATG also had a higher improvement in mean VAS for sciatica (4.0 points) than the ITG (2.8 points), but the difference was not significant (P = 0.08). The SF-36 General Health score declined in both groups after 12 months, however, the decline was worse in the ITG (mean decline: 8.2 points) than in the ATG (mean decline: 1.2 points) (P = 0.04). Overall, in comparison to ITG patients, ATG patients had significantly higher improvement at 12 months, both statistically and clinically. CONCLUSION: In comparison to previously reported literature, our study is the first to assess the utility of appropriateness criteria for low back surgery at 1-year follow-up with multiple outcome dimensions. Our results confirm the hypothesis that application of appropriateness criteria can significantly improve patient outcomes.

Automatic measurement of key ski jumping phases and temporal events with a wearable system.

We propose a new method, based on inertial sensors, to automatically measure at high frequency the durations of the main phases of ski jumping (i.e. take-off release, take-off, and early flight). The kinematics of the ski jumping movement were recorded by four inertial sensors, attached to the thigh and shank of junior athletes, for 40 jumps performed during indoor conditions and 36 jumps in field conditions. An algorithm was designed to detect temporal events from the recorded signals and to estimate the duration of each phase. These durations were evaluated against a reference camera-based motion capture system and by trainers conducting video observations. The precision for the take-off release and take-off durations (indoor < 39 ms, outdoor = 27 ms) can be considered technically valid for performance assessment. The errors for early flight duration (indoor = 22 ms, outdoor = 119 ms) were comparable to the trainers' variability and should be interpreted with caution. No significant changes in the error were noted between indoor and outdoor conditions, and individual jumping technique did not influence the error of take-off release and take-off. Therefore, the proposed system can provide valuable information for performance evaluation of ski jumpers during training sessions.

Iowans with Disabilities, July 2016

Demographic snapshot of Census statistics about the Iowa population with disabilities.