Promoting and maintaining health of people with sight loss: A scoping study

This study was undertaken in response to a request by the Thomas Pocklington Trust to identify and explore the following issues: • The needs and concerns regarding immediate risks to health and safety related to sight loss; • Additional risks arising from sight loss for those who are also managing a long term disease; • The difficulties in maintaining and promoting health; • Whether or not health promotion activities and policies sufficiently address perceived needs. Findings pertaining to these objectives have been generated from data collected in Leeds, UK, a city where innovative programming for sight loss has either been planned or is being incorporated into health planning and a review of the literature. Findings related to the last two issues indicate that gaps exist in service provision for maintaining health and emphasise the need for more explicitly targeted health promotion initiatives that could address current weaknesses. - A review of the literature; - Focus group discussions with a range of people who had experienced sight loss; - Interviews with professional practitioners engaged in service provision to this population; - An expert hearing with four professional practitioners, one of whom had sight loss, and two service users with sight loss. Most participants were from the West Yorkshire region and the services described in the study are largely located in Leeds. Evidence from the literature review suggests that people with visual impairment have increased risk of accidents within the home and that ensuing consequences include injuries incurred and decreased confidence. Rates of depression among people who are blind or partially sighted are far higher than in the wider population and the likelihood of depression increases with age, although psycho-social interventions and technological assistance can be successfully implemented to improve quality of life. Sight loss together with other long term health conditions exacerbates the impact of other health conditions and has particularly severe impact on the wellbeing of older people insofar as it may affect their mobility, which in turn increases their risk of falls and depression. The nature and level of support available to people is variable but it is clear that access both to the right information at the right time and to appropriate services is a critical issue. Focus group discussions, interviews and the expert hearing corroborated and extended the themes noted in the literature and discuss the differential impact of different risks to health and the difficulties of coping with these at different times in a person’s life. A simple typology was defined using two dimensions of experience (‘stage of life’ and ‘early/late onset of sight loss’) as a means of organizing findings and providing a means of making further distinctions in interpreting the data. Potentially, this scheme can allow health promotion initiatives to be targeted more effectively to stages at which people with sight loss are more likely to encounter specific difficulties in managing and maintaining their health. There was a clear consensus throughout the study that interventions to meet the needs of people with sight loss must be tailored to meet the specific needs of individuals: people with sight loss are not a homogeneous group and the way in which each person experiences the challenges of sight loss and of managing their health will inevitably vary from person to person. Recommendations generated by this study include: • The scope for more pro-active services and need for closer collaboration between service providers; • The need for provision and promotion of targeted information; • The need for greater awareness of the needs of people with visual impairments among generic service providers; and • Further research that explores the usefulness of the typology with a larger sample more representative of population demographics such as BME communities that are more likely to slip through the cracks of service provision

Include 2011 : The role of inclusive design in making social innovation happen.

Include is the biennial conference held at the RCA and hosted by the Helen Hamlyn Centre for Design. The event is directed by Jo-Anne Bichard and attracts an international delegation

Neuro-electronic technology in medicine and beyond

This dissertation looks at the technology and social issues involved with interfacing electronics directly to the human nervous system, in particular the methods for both reading and stimulating nerves. The development and use of cochlea implants is discussed, and is compared with recent developments in artificial vision. The final sections consider a future for non-medicinal applications of neuro-electronic technology. Social attitudes towards use for both medicinal and non-medicinal purposes are discussed, and the viability of use in the latter case assessed

Restoring sight: how cataract surgery improves the lives of older adults.

The fundamental aim of most ophthalmic interventions in later life is to improve the quality of patients' lives, whether through sight-restoring cataract surgery or the provision of visual aids. Amidst the pressures of targets, outputs, and backlogs, this may be all too easily forgotten. It is therefore important to step back and remember just how important good vision is in the lives of older adults.Vision loss has a major negative impact on the quality of older people's lives. Sight remains as valued and important in later life as at any other age and its loss is one of the things older people fear most. Improving access to eye care services for this age group, as well as older people's uptake of such services, is therefore very important.This article takes a closer look at some of the ways in which vision loss and blindness can affect the lives of older adults; it also highlights the positive impact sight-restoring cataract surgery has on older people's lives

Exploring young people's and youth workers' experiences of spaces for ‘youth development’: creating cultures of participation

The paper focuses on the emergence of ‘positive youth development’ and its impact on older, more established practices of working with young people, such as youth work. Drawing on ethnographic fieldwork in England between 2004 and 2006, in particular young people's and youth workers' accounts of participating in youth work, the analysis engages with the social spaces in which youth work takes place and asks key questions about why young people might participate in youth spaces, what they get out of participating and how such spaces can promote cultures of participation. The analysis shows that such spaces provide young people and their communities with biographical continuity and time becomes a key component for sustaining such spaces. The argument is made for a more nuanced understanding of what young people get out of their participation in youth spaces, and for an epistemological approach to youth praxis that embraces the messiness and inequalities of lived experience

The accessibility of administrative processes: Assessing the impacts on students in higher education

Administrative processes that need to be completed to maintain a basic standard of living, to study, or to attain employment, are perceived to create burdens for disabled people. The navigation of information, forms, communications, and assessments to achieve a particular goal raises diverse accessibility issues. In this paper we explore the different types of impacts these processes have on disabled university students. We begin by surveying literature that highlights the systemic characteristics of administrative burdens and barriers for disabled people. We then describe how a participatory research exercise with students led to the development of a survey on these issues. This was completed by 104 respondents with a diverse range of declared disabilities. This provides evidence for a range of impacts, and understanding of the perceived level of challenge of commonly experienced processes. The most common negative impact reported was on stress levels. Other commonly reported impacts include exacerbation of existing conditions, time lost from study, and instances where support was not available in a timely fashion. Processes to apply for disability-related support were more commonly challenging than other types of processes. We use this research to suggest directions for improving accessibility and empowerment in this space

Designing assisted living technologies 'in the wild' : preliminary experiences with cultural probe methodology

Background There is growing interest in assisted living technologies to support independence at home. Such technologies should ideally be designed ‘in the wild’ i.e. taking account of how real people live in real homes and communities. The ATHENE (Assistive Technologies for Healthy Living in Elders: Needs Assessment by Ethnography) project seeks to illuminate the living needs of older people and facilitate the co-production with older people of technologies and services. This paper describes the development of a cultural probe tool produced as part of the ATHENE project and how it was used to support home visit interviews with elders with a range of ethnic and social backgrounds, family circumstances, health conditions and assisted living needs. Method Thirty one people aged 60 to 98 were visited in their homes on three occasions. Following an initial interview, participants were given a set of cultural probe materials, including a digital camera and the ‘Home and Life Scrapbook’ to complete in their own time for one week. Activities within the Home and Life Scrapbook included maps (indicating their relationships to people, places and objects), lists (e.g. likes, dislikes, things they were concerned about, things they were comfortable with), wishes (things they wanted to change or improve), body outline (indicating symptoms or impairments), home plan (room layouts of their homes to indicate spaces and objects used) and a diary. After one week, the researcher and participant reviewed any digital photos taken and the content of the Home and Life Scrapbook as part of the home visit interview. Findings The cultural probe facilitated collection of visual, narrative and material data by older people, and appeared to generate high levels of engagement from some participants. However, others used the probe minimally or not at all for various reasons including limited literacy, physical problems (e.g. holding a pen), lack of time or energy, limited emotional or psychological resources, life events, and acute illness. Discussions between researchers and participants about the materials collected (and sometimes about what had prevented them completing the tasks) helped elicit further information relevant to assisted living technology design. The probe materials were particularly helpful when having conversations with non-English speaking participants through an interpreter. Conclusions Cultural probe methods can help build a rich picture of the lives and experiences of older people to facilitate the co-production of assisted living technologies. But their application may be constrained by the participant’s physical, mental and emotional capacity. They are most effective when used as a tool to facilitate communication and development of a deeper understanding of older people’s needs