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A positive approach to chronic illness and disability

05 Jul 2011 | Antonella Delle Fave

Chronic illnesses and disabilities have a dramatic impact on individuals and their families. In the short term they can reduce autonomy and levels of interaction, causing isolation and a reduction in daily activities. In the longer term they can lead to loss of motivation, fatigue and depression. Caregivers and wider families can also face increasing levels of distress and exhaustion. Most research studies and interventions in this area have traditionally focused on treating these negative aspects of illness and disability.

In recent years, researchers and professionals in the fields of psychology, health and social sciences have increasingly focused on understanding what causes healthy behaviour and good quality of life. This approach entails a substantial shift, from the treatment of problems to the development of strategies aimed at increasing well-being. It focuses on people's resources, strengths and potentials instead of just their weaknesses and deficits. And this same approach can also be used to help people who have to cope with very difficult circumstances, such as chronic illnesses and disabilities.

The percentage of people who face long-term health challenges is increasing every year. Road accidents, warfare and the consequences of environmental pollution are frequent causes of disablement. In Western countries, poor nutrition habits and sedentary lifestyles increase the risk of disabling cardiovascular problems. People also enjoy a longer life expectancy than in the past and are therefore more exposed to impairments related to aging. Technological advancements also allow people with life-threatening diseases to survive or to live longer.

International agencies are devoting growing attention to this issue. The promotion of well-being and social integration of people with disabilities is among the prominent goals of UN and European Community initiatives. Their main aim is the development of integrated policies allowing disabled people to achieve the status of full citizens through the removal of architectural, occupational, educational and social barriers. The recent International Classification of Functioning (ICF, WHO 2001) described chronic illness and disablement as variations of human functioning, rather than conditions of impairment and deficit. It also highlighted that two people with the same degree of physical health can have different levels of functioning. This depends on variables that differ from physical conditions, such as individual psychological features, family and social support, material and economic resources, educational background, cultural values and social policies.

At the moment, interventions aimed at people with disabling diseases focus on the attainment of "objective" goals, such as housing facilities, adequate school and job opportunities, and easy access to health services. These are indeed crucial factors for promoting well-being. However, it is equally crucial to assess well-being from the subjective perspective, taking into account people's own evaluations of their life, their achievements and expectations, their positive experiences, interests and passions. Researchers have found that life satisfaction is compatible with chronic disease, and that the majority of people with serious disablement rate their quality of life as excellent or good. People currently sick or recovering from severe disease also identify positive consequences of their illness, such as improved interpersonal relationships, positive personality changes, reappraisal and restructuring of life.

Some of the constructs recently developed in psychology appear to be especially useful for health-related intervention. These include self-efficacy, self-determination, resilience, optimism, hope, meaning making, spirituality and religiousness. The investigation of the daily sources and opportunities for well-being reported by people with disabilities and chronic illnesses can shed light on personal resources, strengths and potentials that can be developed as ways to promote psychophysical health and happiness. For example, a key resource in the process of adapting to a chronic disease is the perception of the illness as a challenging opportunity to put one's own competences and abilities to the test, rather than a threat and an overwhelming obstacle.

Our research group has explored the quality of experience reported by people with disabilities and chronic illnesses during their daily life, focusing on the activities they associate with optimal experience, or 'flow'. This positive and complex state is characterized by the perception of high challenges, high personal skills, concentration, involvement, enjoyment and control. People widely differing in age, socioeconomic conditions, education level, and culture were interviewed. The findings showed unequivocally that people with disabilities can successfully achieve developmental goals, social integration and a good quality of life despite severe constraints. This proved to be true both of people with congenital disabilities and people with impairments acquired later in life. In particular, results highlighted the role of optimal experience in supporting physical and social functioning. These studies also showed that each individual develops a personal approach to disability, related challenges and associated experience.

People with physical disabilities are often considered a disadvantaged group. However, this depends on the cultural attitude towards such limitations, since people are only disadvantaged in an environment in which their condition brings about disadvantageous consequences. From a more correct, purpose-driven and practically useful perspective, people with disabilities are ordinary people coping with extraordinary circumstances. They must therefore be supported in their pursuit of autonomy, resource development, and personal growth.

Today's consumer culture tends to emphasise physical fitness, performance and easily attainable pleasures. By contrast, well-being derives from the cultivation of personal resources and strengths and from the pursuit of collective values. It is based on engagement and commitment, rather than just on positive sensations and pleasure. Even in difficult circumstances people can pursue complex goals and successfully cultivate enjoyable activities and gratifying social relations. We need an approach to chronic illness focused on understanding people's patterns of coping and adjustment to disease, and with interventions that really support their well-being and participation in society.

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Antonella Delle Fave is president of the International Positive Psychology Association (IPPA) and professor of psychology at the Faculty of Medicine of the University of Milan.

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