Academic journal article International Public Health Journal

Emerging Quality of Life in the Wider World

Academic journal article International Public Health Journal

Emerging Quality of Life in the Wider World

Article excerpt

Introduction

One of the exciting developments in quality of life in the field of intellectual and developmental disabilities is research and application, which has been clearly documented and is being applied in a wide range of countries, sometimes through service development and government policy. Not that the idea of quality of life is new, for it has been discussed in different guises over the centuries, and was also raised in the field of psychology at least one hundred years ago. Everyone desires a life of quality, and human rights increasingly demand everyone is also entitled to this desire and its fulfilment. But an humanitarian concept such as this can be misunderstood and misapplied unless set within clear value systems, concepts and principles and based on research, application and feedback. Humanitarian issues in any society need to be backed by scientific study and this within a multidisciplinary framework.

Yet, what is 'quality of life'? As a term it has gained such widespread use in common language, even advertising, that it has lost some of the rigorous intellectual analysis that has been a characteristic of quality of life in the scientific field for nearly half a century. As an approach in the social sciences, it has had an increasing effect on the lives of people around the world - including individuals, families and communities. Yet it is often misunderstood within the policy and political arena.

In this special issue we hope to clarify a particular scientific and social view of quality of life as developed in the field of intellectual and developmental disabilities over the past 30 years, and explore its potential value for the wider activities in human life across the lifespan. It will draw on the writing and research of colleagues in the field of intellectual and developmental disabilities (IDD), examine the application in those fields and then raise issues and concerns relating to the wider human population. The various papers are based particularly on social scientific endeavours as well as clinical experience. They also take a leap to more general circumstances to raise further debate, and hopefully practice, on a wider platform.

Historical context

From an historical point of view, the field of intellectual and developmental disabilities has moved over the past 60 or so years from institutional care through to inclusion and supportive measures. At its best, it is increasingly moving to the individual with intellectual and developmental disabilities and helping to ensure such individuals belong to society. A challenging development is that more people with multiple and profound disabilities are surviving at birth and living considerably longer than previously. Many require a great amount of support and care, and this remains a major challenge for society.

Further, over the past 50 or so years, particularly in economically developed countries, the nature and our understanding of disability has changed greatly. But so has the outcome in terms of expectations about people with specific disabilities. For example, the life expectancy of people with Down syndrome in 1900 in the United Kingdom was about 11 years. Today it is above 55 plus years on average with one in ten living to 70 (1). Such expansion seems also to be occurring with other conditions. Although the data are sparse it is considered that people with Prader-Willi syndrome are now adjusting in adult life and living longer than previously (2). In fact the whole area of ageing and intellectual and developmental disabilities is one that is causing considerable concern and is fraught with challenge. Yet many of the aspects of ageing, for example, are not dissimilar to some of the challenges that occur in the rest of society. Therefore the development of work in this area is of great relevance to each of us, not just people with intellectual and developmental disabilities.

As indicated earlier there has been a major change from institutional care, and medical and nursing intervention to a much more supportive and individualized approach involving a wide range of health and educational professionals and this is true of society as a whole. …

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