Quality of life and participation

Quality of life (QoL) and well-being can be described in broad, multidimensional ways that incorporate objective and subjective accounts of personal feelings, social relationships, local environment, societal values, political institutions, economic conditions, and international relations. A Nordic group has recommended the classification in Table I to describe the QoL of an individual;1Table II shows indicators of child well-being reported at a national level.2 In practice, such approaches are too wide-ranging for meaningful quantitative analysis. Recent years have seen the development of ideas about QoL which concern an individual’s personal perception of their place in the world and society. It is a person’s self-reported view and therefore subjective. This modern meaning of QoL may be confused with other outcomes which could be equally important but different. This paper tries to identify and unravel these varied elements. It is also important to appreciate that various definitions are used to reflect the different stages in the evolution of the concepts and that these operational definitions are likely to change in future. Two important and relatively recent developments in the social sciences are the social model of disability and a new approach to the sociology of childhood. Their implications emphasize the relevance of the environment to participation and the importance of QoL respectively. The ‘social model of disability’3 regards disability as resulting from the interaction between individuals and their respective environments, rather than as something within the individual. This model was developed in the United Kingdom and has been central in the development of disability studies.3–5 Originally, the social model took an uncompromising position that all disability is caused by societal and structural barriers – whether they be environmental such as inaccessible buildings, institutional such as segregated schooling, or attitudinal; any failure of society to ensure sufficient environmental adjustment represented discrimination against a minority group and a denial of their human rights. Since then, the model has been modified to indicate that much but not all disability is attributable to the environment. There are two reasons for this. First, physically disabled people themselves say their impairments are relevant to their lives and to their interaction with their environment;6 second, there are some aspects of participation which a person with severe intellectual impairment could never accomplish however much their environment was modified. In another recent development in sociology, childhood is now regarded as a legitimate construct for social analysis, along with categories such as class, sex, ethnicity, and disability. ‘A child’s immaturity is a biological fact: but how this immaturity is understood and how it is made meaningful is a cultural one’.7 Children are seen not as passive objects owned by their parents but rather as social actors in their own right, contributing in various ways to their families and their communities. In the 1990s, this new sociology of childhood criticized past theories of child development as setting up false ‘criterion standards’ of adulthood and developmental norms. The new approach is encapsulated by the notion: ‘Children should be seen as “human beings”, not “human becomings”’.8 In 1980, the World Health Organization (WHO) published the International Classification of Impairments, Disabilities, and Handicaps,9 which was succeeded in 2001 by the WHO International Classification of Functioning, Disability and Health (ICF).10 The conceptual components of the ICF and their proposed relationships are shown in Figure 1. Participation is defined as involvement in life situations, typical examples for children being responsibilities, maintaining relationships, community life, education, and recreation. Participation is about what a person does in real life and is therefore strongly influenced by their environment, in accordance with the social model of disability. ‘Participation’ is different from ‘handicap’ in at least three important respects: the concept applies to all people, not just those who are disabled; it has positive rather than negative connotations; and reduced participation results from the interaction between the individual and their environment, not from a problem residing in or intrinsic to the individual. International Classification of Functioning, Disability and Health–WHO 2001.10 The ICF considers the individual to live in a ‘context’ consisting of environmental and personal factors. Environmental factors are the ‘physical, social and attitudinal environment in which people live and conduct their lives’ and examples are shown in Table III. Personal factors include preferences, personal choice, past experience, and social background. In the early literature on QoL, there was great overlap with terms such as handicap, function, and activities of daily living, depending on authors’ philosophies and backgrounds. However, the literature is now clearer and, although a number of definitions of QoL exist, the subjective, self-reported element is now common to all. WHO define QoL as ‘the individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns’.11 Most instruments identify a number of crucial dimensions,12 as shown in Table IV. Modern QoL instruments are generated de novo from what young people say, rather than being modified adult instruments or instruments with items that professionals think are relevant to children and young people. Further, the meaning derives from what the young person says about their perception of the world and is therefore in accordance with the United Nations Convention on Rights of the Child 1989, article 12 which states that ‘Children’s views must be taken into account in all matters concerning them’; and the United Nations Convention on Rights of Persons with Disabilities 2006, article 7 which states that ‘Disabled children have the right to express their views’. Quality of life cannot be measured directly; it is captured by calculating from a group of questions the value of an underlying latent variable. All instruments which capture latent variables need their psychometric properties to be carefully evaluated; but this is especially important when the questions ask about subjective states, rather than objective ones. Item response theory ensures the latent variable is captured on a unidimensional, ratio scale by questions which behave in the same way in different settings and with different children. The KIDSCREEN instrument has recently been developed with these properties and validated across twelve European countries.13 Health-related quality of life (HRQoL) is a concept with a number of interpretations, including: An individual’s perception of various aspects of his or her life that are affected by a particular medical condition and its treatment; the parts of a person’s QoL he or she personally attributes to a health problem or impairment. What a person thinks about his or her health or impairment. The consequences of an impairment, such as functional limitation or pain. Aspects of QoL that those working in health services can influence. Lach et al. define HRQoL as ‘An individual’s perceptions of various aspects of their lives that they think are affected by a particular medical condition and its treatment’.14 This is readily understood in relation with issues such as the stigma or secrecy of epilepsy, or embarrassment about a limp in cerebral palsy; but how an individual assesses whether such aspects affect other domains (such as their relationships with family) is more difficult to understand. In other words, if an aspect of life is considered that is unique to the condition, the concept is readily understood; but if the aspect considered is experienced by all children, the concept is more difficult to grasp. Ronen et al.15 and Waters et al.16 have developed condition-specific QoL instruments for epilepsy and cerebral palsy, respectively. Both developed the items for the questionnaire from focus group work with children, using the children’s words, and both capture some concepts associated with generic measures of HRQoL and some that are specific to the condition. Whether condition specific instruments capture QoL is debatable, but they certainly capture useful information, especially about how health services can respond to concerns young people have about their condition and its management. People with severe learning disability* cannot self-report, but estimating and improving their QoL is no less important. We cannot know their QoL directly so we need to consider how it can best be estimated from objective observations of sounds and facial expressions or the subjective impressions of others such as relatives, friends, and professionals. Some other concepts, important to mention because they are distinct from quality of life and participation, include: Physical function, e.g. can you walk, and if so, how far? The purpose is to assess bodily function, not the walking per se. Activities of daily living, e.g. can you feed yourself? Can you walk by yourself and if so how far? These are physical tasks which depend upon function. Inclusion. This is involvement in and access to social interactions and settings used by all people. It is necessary for some aspects of participation. Health utility. This refers to a ‘value’ assigned by society to a particular health state. It is not an intrinsic outcome for the individual; rather it is a calculation based on value assigned by citizens to a health state. These values may be important when considering how to allocate resources. Participation and QoL should be regarded as the key outcomes for disabled people in epidemiological studies and assessment of interventions (Fig. 2). Participation is an objective measure, QoL subjective. The former derives from the social model of disability and the ICF; the latter from the new sociology of childhood and the status we should give to the lives of children and young people ‘here and now’ rather than valuing childhood simply as a transitional phase to adulthood. These two concepts apply to all children. There is a third concept, HRQoL, about which there is less agreement. If HRQoL is about aspects of QoL which are particular to children with a specific condition, then it cannot apply to all children. Alternatively, if HRQoL relates just to aspects of health, it has limited scope because such elements may not relate to more general well-being or may have been specifically chosen to be aspects of QoL which could be improved by health service intervention. Social model of disability.