The contribution of building research to the independence and quality of life of older people

Many nations are experiencing rapid rises in the life expectancy of their citizens. The implications of this major demographic shift are considerable offering opportunities as well as challenges to reconsider how people should spend their later years. A key task is enhancing the quality of life of older people through enabling them to continue to live independently even though illness, accident or frailty may have severely reduced their physical and sensory abilities and, possibly, mental health. Yet the needs of older people and disabled people have been largely ignored in the design of everyday consumer products, the home, transport systems and the built environment in general. Whilst the need for designers, engineers and technologists to provide products, environments and systems which are inclusive of all members of society is widely accepted, there is little understanding of how this can be achieved. In 1998 the UK Engineering and Physical Sciences Research Council established its EQUAL Initiative. This has encouraged design, engineering and technology researchers in universities to join with their colleagues from the social, medical and health sciences to investigate a wide range of issues experienced by older and disabled people and to propose solutions. Their research, which directly involves older and disabled people and, for example, social housing providers, social services departments, charities, engineering and architectural consultants, and transport firms, has been extremely successful. In a very short time it has influenced government policy on housing, long-term care, and building standards, and findings have been taken up by architects, designers, health-care professionals and bodies which represent older and disabled people.

The children that time forgot: Reframing housing standards to incorporate children's needs

This paper presents the findings from a recent study funded by the Joseph Rowntree Foundation examining the housing and neighbourhood needs of 44 visually impaired children. Our research found that disabled people’s needs have been too narrowly based on ‘accessibility’ criteria, which do not take into account the health and safety issues so important for children. Indeed, the home environment is the main site of accidental death or injury for young children under 4 years, and children from low income families are particularly susceptible to burns, scalds, falls, swallowing foreign objects or poisonous substances within it (CRDU 1994). As disabled children are statistically more likely to be in low income families, this places them at high risk. If ‘accessibility’ is to be reconceived as design for usability throughout the lifecourse, this challenges us to move beyond the pragmatic but limited application of design prescriptions for disabled people as a separate and adult group, and to re-think all of the dimensions of the housing quality framework in the light of this expanded approach.

Regulation and innovation: Rethinking 'inclusive' housing design

The Lifetime Homes (LTH) concept initiated in 1989 by the Helen Hamlyn Trust, and subsequently promoted by the Joseph Rowntree Foundation, emerged at a point when there was growing awareness of the decline of both private and public sector housing quality, especially in relation to floorspace standards (Karn & Sheridan, 1994). LTH were intended to offset the concerns of first, the house buying public of the appearance and affordability of homes suitable for successive generations, second, the private house building industry of the cost and marketability of incorporating 'inclusive' design features, and third, Registered Social Landlords (RSLs), who had to balance cost constraints with addressing the needs of a growing number of households with older and/or disabled people. Approved Document Part M of the building regulations was extended in 1999, from public buildings to private dwellings, and currently requires that all new housing meet minimal 'visitability' criteria. Indeed, although the signs are that Part M will be incrementally extended to comprise LTH principles, the paper argues that in their existing form they are insufficient to act as a key component of the government's 'new agenda for British housing'. This paper therefore explores how they might usefully be expanded from an approach, largely based on compromise, to one that inspires innovative, flexible and inclusive house forms, which also challenge design conventions.

Young people with intellectual disabilities attending mainstream and segregated schooling: perceived stigma, social comparison and future aspirations

Mainstream schooling is a key policy in the promotion of social inclusion of young people with learning disabilities. Yet there is limited evidence about the school experience of young people about to leave mainstream as compared with segregated education, and how it impacts on their relative view of self and future aspirations. Sixty young people with mild to moderate intellectual disabilities in their final year of secondary school participated in this study. Twenty-eight individuals came from mainstream schools and 32 attended segregated school. They completed a series of self-report measures on perceptions of stigma, social comparison to a more disabled and non-disabled peer and the likelihood involved in attaining their future goals. The majority of participants from both groups reported experiencing stigmatized treatment in the local area where they lived. The mainstream group reported significant additional stigma at school. In terms of social comparisons, both groups compared themselves positively with a more disabled peer and with a non-disabled peer. While the mainstream pupils had more ambitious work-related aspirations, both groups felt it equally likely that they would attain their future goals. Although the participants from segregated schools came from significantly more deprived areas and had lower scores on tests of cognitive functioning, neither of these factors appeared to have an impact on their experience of stigma, social comparisons or future aspirations. Irrespective of schooling environment, the young people appeared to be able to cope with the threats to their identities and retained a sense of optimism about their future. Nevertheless, negative treatment reported by the children was a serious source of concern and there is a need for schools to promote the emotional well-being of pupils with intellectual disabilities.

Who knows best? Awareness of divided attention difficulty in a neurological rehabilitation setting

Objective: To explore whether patients relearning to walk after acquired brain injury and showing cognitive-motor interference were aware of divided attention difficulty; whether their perceptions concurred with those of treating staff. Design: Patients and neurophysiotherapists (from rehabilitation and disabled wards) completed questionnaires. Factor analyses were applied to responses. Correlations between responses, clinical measures and experimental decrements were examined. Results: Patient/staff responses showed some agreement; staff reported higher levels of perceived difficulty; responses conformed to two factors. One factor (staff/patients alike) reflected expectations about functional/motor status and did not correlate with decrements. The other factor (patients) correlated significantly with dual-task motor decrement, suggesting some genuine awareness of difficulty (cognitive performance prioritized over motor control). The other factor (staff) correlated significantly with cognitive decrement (gait prioritized over sustained attention). Conclusions: Despite some inaccurate estimation of susceptibility; patients and staff do exhibit awareness of divided attention difficulty, but with a limited degree of concurrence. In fact, our results suggest that patients and staff may be sensitive to different aspects of the deficit. Rather than 'Who knows best?', it is a question of 'Who knows what?.

Virtual reality Post Traumatic Stress Disorder (PTSD) exposure therapy results with active duty Iraq war combatants

Post Traumatic Stress Disorder (PTSD) is reported to be caused by traumatic events that are outside the range of usual human experience including (but not limited to) military combat, violent personal assault, being kidnapped or taken hostage and terrorist attacks. Initial data suggests that at least 1 out of 6 Iraq War veterans are exhibiting symptoms of depression, anxiety and PTSD. Virtual Reality (VR) delivered exposure therapy for PTSD has been used with reports of positive outcomes. The aim of the current paper is to present the rationale and brief description of a Virtual Iraq PTSD VR therapy application and present initial findings from its use with PTSD patients. Thus far, Virtual Iraq consists of a series of customizable virtual scenarios designed to represent relevant Middle Eastern VR contexts for exposure therapy, including a city and desert road convoy environment. User-centered design feedback needed to iteratively evolve the system was gathered from returning Iraq War veterans in the USA and from a system deployed in Iraq and tested by an Army Combat Stress Control Team. Results from an open clinical trial at San Diego Naval Medical Center of the first 18 treatment completers indicate that 14 no longer meet PTSD diagnostic criteria at post-treatment, with only one not maintaining treatment gains at 3 month follow-up. Clinical tests are also currently underway at Ft. Lewis, Emory University, Weill Cornell Medical College, Walter Reed Army Medical Center and 10 other sites. Other sites are preparing to use the application for a variety of PTSD and VR research purposes.

Iron and zinc status in multiple sclerosis patients with pressure sores

Measurements of weighted dietary intakes and plasma determinations of albumin, iron, zinc, ascorbic acid and TIBC were carried out on twenty female multiple sclerosis patients in a long-stay hospital for disabled people. The group included ten patients with a recent history of pressure sores, closely matched with ten patients without pressure sores. Mean daily intake of carbohydrate was found to be higher in the non-pressure sore group whilst intake of zinc was lower in this group. Intakes of all other nutrients were comparable between the two groups. For both groups, intakes of energy, folate, vitamin D, iron and zinc were less than recommended values. Mean plasma levels of albumin and iron were towards the lower limit of the normal range, whilst that for zinc was considerably less than the normal range. Plasma TIBC was slightly above the normal range. Levels of plasma iron and zinc were significantly lower in the pressure sore group. The data indicate that severely disabled hospitalized patients with multiple sclerosis may be at risk of poor nutritional status. The results suggest that in the presence of pressure sores, there are increased requirements for specific nutrients, notably zinc and iron. Consideration is given to the possible value of supplementation of these individuals.

Virtual reality Post Traumatic Stress Disorder (PTSD) exposure therapy results with active duty OIF/OEF service members

Posttraumatic stress disorder (PTSD) is reported to be caused by exposure to traumatic events including (but not limited to) military combat, violent personal assault, being kidnapped or taken hostage and terrorist attacks. Initial data suggest that at least 1 out of 6 Iraq War veterans are exhibiting symptoms of depression, anxiety and PTSD. Virtual reality (VR) delivered exposure therapy for PTSD has been used with reports of positive outcomes. The aim of the current paper, is to present the rationale and brief description of a Virtual Iraq/Afghanistan PTSD VR therapy application and present initial findings from its use with PTSD patients. Thus far, Virtual Iraq/Afghanistan consists of a series of customizable virtual scenarios designed to represent relevant Middle Eastern VR contexts for exposure therapy, including a city and desert road convoy environment. User-centered design feedback, needed to iteratively evolve the system, was gathered from returning Iraq War veterans in the USA and from a system deployed in Iraq and tested by an Army Combat Stress Control Team. Results from an open clinical trial at San Diego Naval Medical Center of the first 20 treatment completers indicate that 16 no longer met PTSD screening criteria at post-treatment, with only one not maintaining treatment gains at 3 month follow-up.

Drama, disability and education

This book explores the question, what can society learn about disability through the way it is portrayed in TV, films and plays? The text examines and analyses the way disability is portrayed in drama, and how that portrayal may be interpreted by young audiences. Investigating how disabilities have been represented on stage in the past, this book discusses what may be inferred from plays which feature disabled characters through a variety of critical approaches. The book provides an annotated chronology that traces the history of plays that have featured disabled characters. It analyses how disability is used as a dramatic metaphor and considers the ethics of dramatising a disabled character. Critical accounts of units of work in mainstream school seeking to raise disability awareness through engagement with practical drama and dramatic texts are given along with detailed discussions of the issues underpinning two previously unpublished playscripts written for young audiences and description and evaluation of a drama project in a special school. In tackling questions and issues that have not, hitherto, been well covered, Drama, Disability and Education will be of enormous interest to drama students, teachers, researchers and pedagogues who work with disabled people or are concerned with raising awareness and understanding of disability.

Serving two masters: a reflective narrative of reconciling the tensions faced in designing doctoral research

This paper presents a reflective narrative of the process of designing a PhD project. Using the analogy of the play 'One Man, Two Guvnors' , this paper discusses the tensions a beginning researcher faces in reconciling her own vision for a project with the academic demands of doctoral-level study. Focusing on an ethnographic study of a reading group for visually-impaired people, the paper explores how the researcher's developing understanding of the considerations necessary when working with disabled people impacted on the research design. In particular, it focuses on the conflict faced by doctoral students when working in a paradigm that requires actively involving research participants, thereby relinquishing some control over the project. The aim of the paper is to provide an honest narrative that will resonate with other beginning researchers.

Deviant disabilities: the exclusion of drug and alcohol addiction from the Equality Act 2010

The Equality Act 2010, in keeping with the Disability Discrimination Act 1995, excludes those identified as drug and alcohol ‘addicted’ from the scope of provisions prohibiting discrimination against disabled people. This article addresses the significance of, and justification for, this exclusion. It begins with a legislative background to the relevant limitation and subsequently examines its rationale according to prevailing legal, medical and sociological discourses. The article then considers the relevance of the discussion for disability rights. Although ‘addiction’, or the preferred term, ‘substance dependence’, is classified as a disability for international systems of disease classification, the relevance of substance dependence for discussion on disability rights, and of disability for discussion on substance dependence, has largely escaped critical comment.

Factors contributing to fecal incontinence in older people and outcome of routine management in home, hospital and nursing home settings

Objective: Fecal loading, cognitive impairment, loose stools, functional disability, comorbidity and anorectal incontinence are recognized as factors contributing to loss of fecal continence in older adults. The objective of this project was to assess the relative distribution of these factors in a variety of settings along with the outcome of usual management. Methods: One hundred and twenty adults aged 65 years and over with fecal incontinence recruited by convenience sampling from four different settings were studied. They were either living at home or in a nursing home or receiving care on an acute or rehabilitation elderly care ward. A structured questionnaire was used to elicit which factors associated with fecal incontinence were present from subjects who had given written informed consent or for whom assent for inclusion in the study had been obtained. Results: Fecal loading (Homes 6 [20%]; Acute care wards 17 [57%]; Rehabilitation wards 19 [63%]; Nursing homes 21 [70%]) and functional disability (Homes 5 [17%]; Acute care wards 25 [83%]; Rehabilitation wards 25 [83%]; Nursing homes 20 [67%]) were significantly more prevalent in the hospital and nursing home settings than in those living at home (P < 0.01). Loose stools were more prevalent in the hospital setting than in the other settings (Homes 11 [37%]; Acute care wards 20 [67%]; Rehabilitation wards 17 [57%]; Nursing homes 6 [20%]) (P < 0.01). Cognitive impairment was significantly more common in the nursing home than in the other settings (Nursing homes 26 [87%], Homes 5 [17%], Acute care wards 13 [43%], Rehabilitation wards 14 [47%]) (P < 0.01). Loose stools were the most prevalent factor present at baseline in 13 of the 19 (68%) subjects whose fecal incontinence had resolved at 3 months. Conclusion: The distribution of the factors contributing to fecal incontinence in older people living at home differs from those cared for in nursing home and hospital wards settings. These differences need to be borne in mind when assessing people in different settings. Management appears to result in a cure for those who are not significantly disabled with loose stools as a cause for their fecal incontinence, but this would need to be confirmed by further research.

iPad use in fieldwork: formal and informal use to enhance pedagogical practice in a bring your own technology world

We report on use of iPads (and other IOS devices) for student fieldwork use and as electronic field notebooks and to promote active. We have used questionnaires and interviews of tutors and students to elicit their views and technology and iPad use for fieldwork. There is some reluctance for academic staff to relinquish paper notebooks for iPad use, whether in the classroom or on fieldwork, as well as use them for observational and measurement purposes. Students too are largely unaware of the potential of iPads for enhancing fieldwork. Apps can be configured for a wide variety of specific uses that make iPads useful for educational as well as social uses. Such abilities should be used to enhance existing practice as well as make new functionality. For example, for disabled students who find it difficult to use conventional note taking. iPads can be used to develop student self-directed learning and for group contributions. The technology becomes part of the students’ personal learning environments as well as at the heart of their knowledge spaces – academic and social. This blurring of boundaries is due to iPads’ usability to cultivate field use, instruction, assessment and feedback processes. iPads can become field microscopes and entries to citizen science and we see the iPad as the main ‘computing’ device for students in the near future. As part of the Bring Your Own Technology/Device (BYOD) the iPad has much to offer although, both staff and students need to be guided in the most effective use for self-directed education via development of Personal Learning Environments. A more student-oriented pedagogy is suggested to correspond to the increasing use of tablet technologies by students

Reading together: an ethnographic study of a reading group for visually-impaired people

Because reading groups historically have been under-researched (Long, 2003), the literature in this field is limited, presenting this as an interesting area for researchers. A need for further research is also explained by the fact that the traditional model of a reading group has been expanded through recent library policies leading to the development of specific group types such as groups for visually-impaired people (VIPs). To date, there have been no long-term empirical studies of these groups. This thesis, therefore, makes a significant contribution to the literature in this field by providing an in-depth exploration of a VIP reading group. The thesis is an ethnographic study which follows a library-run reading group for visually-impaired people from its formation in September 2007 and concentrates on five of the group members. The methodology for the study is influenced by participatory approaches to research involving disabled people by inviting the participants to participate in the co-creation of knowledge about themselves (French & Swain, 2000, p. 1). It is also influenced by new ethnography’s preference for multi-layered texts by exploring both the individual and collective experiences of the participants. While the participants are defined throughout as readers, visual-impairment plays a role in their experiences. I show that visually-impaired readers and reading groups sit within a complex web of factors which impact on their experiences both as individual readers and as a group. The study also shows that VIP reading groups challenge traditional definitions of reading as a visual activity. The study explores issues of power and concludes that, because ownership of the group lies with the library, this challenges the idea of reading groups empowering their members. Furthermore, offering discrete groups for visually-impaired readers means that the role these groups play in contributing to agendas for social inclusion is problematic. The study concludes by making suggestions as to how these groups might develop to be more inclusive and empowering.

Caring responsibilities, change and transitions in young people's family lives in Zambia

Despite diversity in family dynamics within and between societies, globally, it is adults who are usually relied upon to care for family members who are sick, disabled or have other care needs. Young people in Zambia and other African countries affected by the HIV epidemic are under increasing pressure to obtain a good education and employment to support their families, whilst some also have to cope with the loss of parents and care for relatives with little external support. This article discusses the findings of qualitative research that explored the experiences of young people (aged 14-30) who had significant family caring responsibilities and those without such responsibilities in Zambia. Interviews and life-mapping methods were conducted with a total of 35 young people living in rural and urban areas, 12 parents and relatives and 12 professionals. We analyse young people's experiences and perceptions of socially expected transitions, such as completing education and earning an income to support themselves and their families, in addition to more unpredictable changes in young people's family lives. ‘Critical moments’ (Thomson et al, 2002), such as bereavement and loss of parents and other family members, disinheritance of assets and property grabbing, migration and mobility between different relatives homes, parental divorce and separation, often had significant impacts on young people’s ability to navigate their pathways to adulthood according to wider social norms and expectations. A more relational conceptualisation of youth transitions is needed that takes account of young people's caring responsibilities and changing family dynamics.