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.
Tags:
Do things for others, Take care of your body, Find ways to bounce back, Look for what's good, Family & friends, Local community