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Purpose: 

Hip fractures are an important public health issue. Ninety-five percent of hip fractures are caused by falls, with those at greatest risk including residents of long-term care facilities. Hip protectors can be effective in preventing hip fractures, but levels of acceptance and adherence may be low. We report on work to develop research into a new hip protector that aims to overcome some of the acceptance and adherence challenges.

Methods: 

We held five patient and public consultation events involving 147 older adults and 10 long-term care sector staff in the Midlands and North West of England. At each event, participants were shown the Fall-Safe Assist hip protector, which includes built-in mobile technology to record information about falls and summon help from caregivers.

Results: 

Participants were positive about the product’s potential utility and impact upon confidence in moving around. However, many participants held highly personal perceptions of their vulnerability and need, and expressed concerns about the esthetics and practicality of the accompanying underwear. Participants highlighted potential challenges from poor mobile connectivity, and expressed concerns about product cost.

Conclusions:

 Future research will need to ensure flexible and sensitive approaches to recruitment. Further refinement to the product design may be useful. Individual interviews and questionnaires would help capture participants’ perceptions on personal topics, and measures of changes in confidence. Research sites will need to be compatible with technological functionality. It will be necessary to have a robust protocol in place for withdrawal of the product at the end of any clinical research.

Assistive technology (AT) is an essential facilitator of independence and participation, both for people living with the effects of disability and/or non-communicable disease, as well as people aging with resultant functional decline. The World Health Organization (WHO) recognizes the substantial gap between the need for and provision of AT and is leading change through the Global Cooperation on Assistive Technology (GATE) initiative. Showcasing innovations gathered from 92 global researchers, innovators, users and educators of AT through the WHO GREAT Summit, this article provides an analysis of ideas and actions on a range of dimensions in order to provide a global overview of AT innovation. The accessible method used to capture and showcase this data is presented and critiqued, concluding that “innovation snapshots” are a rapid and concise strategy to capture and showcase AT innovation and to foster global collaboration.

The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.

The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.

CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

Momentum is continuing to grow in the circulation of neuroscientific discourse, informing aspects of how we live but affecting too how we think about education and learning. Neurologically informed intrusions into education frequently align with psychology which has until now largely adopted a ‘medical model’, supporting policies and practices which ultimately invoke psychopathology and arguably render individual young people more vulnerable to various forms of social and educational exclusion. This paper urges caution in respect of understandings of educational neuroscience that focus on individual deficits and diagnoses. Rather it holds in mind the broader historical context for neuroscience and its implications for our understandings of what it is to be human in the twenty first century and thereafter for education and learning. Theoretical resources from critical and affective neuroscience but also critical educational psychology are brought together specifically to support the principles of inclusionist policies and practices in education.

Background. A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature.

Objectives. The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these.

Methods. The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). Findings and discussion. The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability.

Conclusion. The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.

Purpose: This research aims to identify a core set of clinical skills for working in a Community Based Rehabilitation (CBR) setting, and to discuss whether they are appropriate for task shifting to a new or an alternative cadre of rehabilitation workers.

Methods: The study focussed on work activities relating to the health component of the CBR Matrix. 40 health professionals working in CBR in Low and Middle Income Countries (LMIC) were surveyed to discover the clinical skills that were used most frequently during the past 3 months and to determine which of these skills were deemed most important in a CBR setting.

Results: A core set of clinical skills for health-related CBR work in LMIC were identified: advocacy and sensitisation; assessment, monitoring and reporting; behavioural and cognitive interventions; collaboration and referral; communication; continuing professional development; education; gait training; group work; home-based rehabilitation; manual therapy; neurofacilitation techniques; positioning; prescription of strengthening exercises; prescription of stretching programmes; provision of aids, assistive devices and technologies; psychosocial support; recreational therapy; self-care; sensory interventions; supervision; upper body rehabilitation; vocational rehabilitation and working with families.

Conclusions: It is possible to identify a core set of health-related CBR skills. These may be considered in the development of training programmes for new or alternative cadres of CBR workers, using a task-shifting model including appropriate support, supervision and referral mechanisms.

Implications: Further research is required to establish the generalisability of the skills sets identified here, both across contexts and different client groups and their needs. The identification of core sets of skills for other areas of the CBR Matrix - livelihood, social, empowerment and education – could similarly facilitate access to these domains for people with disabilities.

Purpose: This pilot study explored the use of virtual reality-based games as an enjoyable yet effective intervention to improve skills in children with developmental disabilities. Although the intervention was primarily targeted at the enhancement of motor skills, the children’s communication, cognitive and social/emotional skills were also monitored and changes, if any, were tracked during this period.

Methods: Therapists guided 5 children (4 boys with Autism Spectrum Disorder and 1 girl with Learning Disability) while they played carefully chosen games on the Xbox-Kinect, in individual sessions. Each child attended between 4 and 6 sessions over a span of one month. Therapists used a 4-point rating scale to evaluate specific skills in each of the four domains (motor, communication, cognitive and social/emotional) at the beginning of the intervention, and again at the end.

Results: Pre-and post-intervention scores revealed that the children made significant progress, not only in certain motor skills but also in skills from the cognitive and social/emotional domains. None of the children regressed in any of the skills monitored from the different domains.

Conclusions: Initial findings indicate that virtual reality games provide a useful platform for building interventions for children with developmental disabilities. There is much scope for future research in this area. The results of the study provide insights into the skills which might require prolonged, consistent inputs during the intervention, and the ones which might be acquired quickly through leaps in learning. The different ways in which children with varied developmental profiles might benefit from virtual reality-based interventions were also highlighted.

Purpose: To study the knowledge and beliefs about ear and hearing healthcare among mothers from a rural community.

Method: In 1 week, 6 focus group discussions were conducted across 6 villages of a district in Tamil Nadu in southern India. The participants were 60 mothers who had children below 5 years of age.

Results: Mothers in this rural community had information about some aspects of ear and hearing healthcare. They were aware that use of hairpins and safety- pins to clean ears was harmful; they were knowledgeable about ways to identify hearing ability (child responds to name call, verbal instructions, and startles at loud sounds); and, conditions like consanguinity and malnutrition of expectant mothers were recognised as risk factors for hearing loss. However, misconceptions also existed. The practice of pouring herbal juices to remove insects in the ear continued; there was the perception that all children with a hearing problem were “deaf”, and a lack of awareness about the possibility of partial/unilateral hearing loss. Regarding the age of identification, mothers believed that a child’s ability to speak and the ability to hear was pertinent to assess hearing. None of the mothers related normal speech development to normal hearing.

Conclusion: For the success of a community-based hearing screening programme, it is important to utilise the existing knowledge of the mothers, and simultaneously attempt to fill in gaps in knowledge and clarify misconceptions. These measures will facilitate greater compliance from the community in achieving the goals of early identification and early intervention for problems of hearing loss.

Purpose: Post-polio Syndrome (PPS) affects polio survivors many years after the initial attack, and causes new musculoskeletal symptoms and decline in physical function. This study aims to compare the effect of exercise and lifestyle modification versus lifestyle modification alone, on fatigue and functional capacity in persons with PPS.

Method: An experimental study was conducted at the physiotherapy department of VS Hospital in Ahmedabad. As per the criteria of Halstead (1985), 21 PPS subjects who were between 18 and 65 years of age, and able to walk indoors and outdoors, with or without assistive aids, were included. They were randomly allocated into 3 groups using the envelope method. Those with physician- diagnosed respiratory or cardiac insufficiency, disabling co-morbidity which interfered with the intervention programme or influenced the outcome, and those unable to cooperate due to cognitive impairment or use of any psychotropic drugs, were excluded. Fatigue and functional capacity were measured using Fatigue Severity Scale (FSS) and 2-minute walk distance, respectively. Physical and psychological functions were assessed using Patient Reported Outcome Measurement Information System (PROMIS) questionnaire and Patient Health Questionnaire (PHQ-9) respectively. Intervention was given for 5 days a week, over 4 weeks. Group A received exercise and lifestyle modification, group B received lifestyle modification alone and group C continued their usual routine for 1 month.

Results: There was a significant difference in fatigue and functional capacity within groups A and B, with group A showing better reduction in fatigue than groups B or C. Physical function improved only within group A, and a significant difference was seen compared to groups B and C. Psychological function showed no difference within or between the groups.

Conclusion: There was improvement in fatigue, functional capacity and physical function in PPS subjects after 4 weeks of exercise and lifestyle modification. Lifestyle modifications alone for 4 weeks improved fatigue and functional capacity in PPS subjects. There is significant reduction in fatigue and improvement in functional capacity when lifestyle modification advice is given along with exercise.