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Chapter 10

Chronic illness, disability and rehabilitation

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(e.g. organs for transplantation), pill burden, what constitutes quality of life and when life support should be withdrawn.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.

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,