Chapter 10
Chronic illness, disability and rehabilitation
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illness takes time, requires a quality partnership with the
healthcare provider, requires knowledge and planning,
and can be uncomfortable and inconvenient. It is not
unusual for patients to stop taking medications or alter
dosages because of side effects that are more disturbing or
disruptive than symptoms of the illness, or to cut back on
regimens they consider overly time consuming, fatiguing
or costly (Williams, Manias & Walker, 2008).
•
One chronic illness can lead to the development of other
chronic conditions. Diabetes, for example, can eventually
lead to neurological and vascular changes that may
result in visual, cardiac and kidney disease, and erectile
dysfunction. Diabetes is now the most common cause of
kidney failure in Australia and New Zealand (McDonald,
Excell & Dent, 2008).
•
Chronic illness affects the entire family. Family life
can be dramatically altered as a result of role reversals,
unfilled roles, loss of income, time required to manage the
illness, decreases in family socialisation activities, and the
costs of treatment. Stress and carer fatigue are common
with severe chronic conditions, and the entire family
rather than just the patient may need care (Ray & Street,
2007). However, some families are able to master the
treatment regimen and changes that accompany chronic
illness as well as make the treatment regimen a routine
part of life. The day-to-day management of illness is
largely the responsibility of people with chronic disorders
and their families. As a result, the home, rather than
the hospital, is the centre of care in chronic conditions.
Hospitals, clinics, doctors’ offices, nursing homes, nursing
centres and community agencies (home care services,
social services and illness-specific associations and
societies) are considered adjuncts or backup services to
daily home management.
•
The management of chronic conditions is a process of
discovery. People can be taught how to manage their
conditions. However, each person must discover how his
or her own body reacts under varying circumstances—
for example, what it is like to be hypoglycaemic, what
activities are likely to bring on angina, and how these
or other conditions can best be prevented and managed.
•
Managing chronic conditions must be a collaborative
process that involves many different healthcare
professionals working together with patients and their
families to provide the full range of services often
needed for management at home. The medical, social
and psychological aspects of chronic health problems
are often complex, especially in severe conditions. The
management of chronic conditions is expensive. Many
of the expenses incurred by an individual patient (Jeon
et al., 2009) (e.g. costs for hospital stays, diagnostic tests,
equipment, medications and supportive services) may
be covered by health insurance and by governmental
agencies. However, the cost increases affect society as
a whole because cost increases at the government level
decrease resources that might otherwise benefit society. In
addition, many out-of-pocket expenses are not reimbursed.
•
Access to health and community support services is
problematic because of a lack of services and workforce
supply, particularly in regional and remote areas of
Australia (NHPAC, 2006). Working with a chronic
illness may risk safety and, contrarily, absence from work
because of chronic disorders may jeopardise job security
and income.
•
Chronic conditions raise difficult ethical issues for
patients, families, healthcare professionals and society.
Problematic questions include how to establish cost
controls, how to allocate scarce resources (e.g. organs for
transplantation), pill burden, what constitutes quality of
life and when life support should be withdrawn.
•
Living with chronic illness means living with uncertainty.
Although healthcare providers may be aware of the
usual progression of a chronic illness such as Parkinson’s
disease or multiple sclerosis, no one can predict with
certainty a person’s illness course because of individual
variation. Even when a patient is in remission or symptom
free, he or she often fears that the illness will reappear.
Chart 10-1 illustrates the most commonly reported
features of chronic illness that, although sourced from
the U.S., remains a reflection of the current Australian
healthcare landscape.
The challenges of living with chronic conditions can be
summarised as follows:
•
Alleviating and managing symptoms
•
Psychologically adjusting to and physically
accommodating disabilities
•
Preventing and managing crises and complications
•
Carrying out regimens as prescribed
•
Recognising the impact of comorbidities on the chronic
condition
•
Validating individual self-worth and family functioning
•
Managing threats to identity
Figure 10-4
Many people with disabilities lead full, productive
lives. A woman attends university classes.
