Rachel Leaver, BSc (Hons) Health Studies, RN.
Clinical Nurse Specialist, Middlesex Hospital, LondonHealth-care delivery has undergone a major overhaul over the past few decades, with calls for greater participation by the recipients of care and individual responsibility for health and health care.
Health-care delivery has undergone a major overhaul over the past few decades, with calls for greater participation by the recipients of care and individual responsibility for health and health care.
There is a general assumption that this increase in 'lay participation' will be associated with greater power for the patient. Allen (2000) argues this is an over-simplistic view and possibly an erroneous one, and we need to clarify what we mean by 'empowerment' and 'self-care'. More importantly, we need to clarify what the individual patient understands this to be and what participating in his or her own care means to the patient and his or her carers (Skelton, 1994). Anderson (1996) also warns that assuming everyone can participate in self-care means we may not address the issues which perpetuate social inequalities. These may prevent patients from embracing empowerment, especially if they are marginalised and disadvantaged, as in the case of some patients with a chronic illness.
Empowering patients to be able to care for themselves does not mean that health-care professionals abdicate all responsibility and decision making. It means ensuring that the patient is involved in care planning and has a say in treatment options. In order to do this, the patient must have access to information and knowledge to make informed decisions. In the case of a chronic illness, treatment options may be limited. The focus shifts away from treatment, and is on empowering the patient by giving the information and support needed to live with the condition and to recognise and treat symptoms in order to minimise the chance of these escalating into acute episodes. Thus the patient has some control of his or her situation.
Having a chronic illness means being different from the general population and having to cope with the stigma illness brings. In order to encourage self-care, nurses need to understand what chronic illness means and how people respond to it. When considering chronic illness there is a tendency to look at either the stigma of illness or the way individuals achieve a normal lifestyle despite being chronically ill. Joachim and Acorn (2000) argue that these two aspects interact over time, and considering them in this way will give a broader understanding of the experience of living with a chronic disease.
For the patient with a chronic illness, symptom control is all-important and becomes a part of daily life. A change in symptom signals a change in body function and triggers health-related action (O'Neill and Morrow, 2001). However, the effects of chronic illness go beyond symptoms. Chronic illness alters the dimensions in relationships. The individual's role in the family may change and the person may feel a loss of independence. The stress of illness may result in the breakdown of relationships. Cultural interpretation and response to illness may also impede the individual's ability to cope and adapt to chronic illness. This may result in loss of social or familial support for the patient and cause social isolation from others. Besides this, the individual's gender and social, cultural and economic status all have an impact on how illness is perceived and the ability to adapt (O'Neill and Morrow, 2001).
In their study on the effects of chronic illness on work, Kessler et al (2001) found a monthly average of 6.7 working days lost. Individuals may find their employer is unwilling to accommodate their specific needs or tolerate such a high level of sickness. Lack of or reduced employment will result in economic problems. These could trigger feelings of loss of control, increasing stress and depression, which in turn may accentuate the symptoms or precipitate acute episodes of the illness. Restrictions on social, work and family life and the accompanying identity loss are as debilitating as the illness itself (Asbring, 2001).
Chronic urinary infection
The majority of urinary infections do not progress to the chronic stage. Most urinary tract infections are due to a minor epithelial cell defect. This results in a weakness in the host's defences that predisposes the patient to excessive peri-urethral colonisation by bacteria. There is also evidence to show that patients who experience recurrent infection have a higher degree of adherence of pathogens to the bladder mucosa (Leiner, 1995; 1997). Clinicians unfamiliar with the condition may order unnecessary, expensive tests, prescribe ineffectual treatment and give unsubstantiated advice to patients. In chronic urinary tract infection, repeated and inappropriate use of antibiotics may aggravate the condition, making treatment of acute re-infection episodes with ordinary antibiotics increasingly difficult (Hassey, 1995). There is therefore a need to differentiate between persistent symptoms rather then recurrent symptoms, that is relapses rather than re-infections.
Although not exclusively a female phenomenon, urinary infection is more common in women. It is most prevalent in white females between the ages of 20 and 60 (Hassey, 1995). Fifty per cent of all women have at least one urinary tract infection during their lifetime (Uphold and Graham, 1994). Some may suffer up to seven urinary tract infections a year (Stamm et al, 1991)
Chronic urinary infection may affect more than the patient's bladder. Common symptoms are listed in Box 1. The condition may also effect the kidneys. The individual may suffer additional symptoms such as those listed in Box 2.
Long-term antibiotic use and the resulting resistance to antibiotic treatment may make treating flare-ups difficult. Changing body image, inability to have intercourse or pain on intercourse, and difficulty in communicating sexually may also occur (Kralik et al, 2001). Although not all patients have all these symptoms, many have enough of them for these to seriously impinge on normal life.
O'Neill and Morrow (2001) identify five main areas where nursing intervention is needed: physical functioning, coping, self-care, roles and relationships and socio-cultural issues. In order to address these areas, and especially the last three, the nurse needs to make a thorough assessment. The emphasis must not only be on symptom management but must involve all aspects of the individual's life (Box 3).
Assessing how individuals cope
There have been several studies on how individuals with chronic illnesses cope. Coping methods included physical adaptation, fostering a sense of hope or personal control, having positive social supports and meaningful engagement in life (Bury, 1991). Some individuals may find a spiritual approach helpful (Landis, 1996).
Coping can be defined as learning to tolerate the effects of illness (Bury, 1991). Coping can be divided into active (confrontational) and passive (avoidance) strategies. Adopting an active or confrontational approach means facing up to the problem and finding ways to handle it constructively. Being passive means attempting to reduce the stress by avoiding dealing with the reality of the situation.
While some chronic illnesses are visible to all, such as paraplegia, chronic urinary infection belongs to the group of chronic conditions that are invisible to other people. This influences the individual's decision whether to disclose information about the illness or to conceal it and try to maintain as normal an outward appearance as possible. Nurses should be aware of this coping mechanism when prescribing individualised care (Joachim and Acorn, 2000). It may add to the strain on patients as they try to carry on with their everyday lives without compromising their family or working life. For some patients the stress is too much and they may resort to adopting the sick/disabled role. Fostering self-care in these circumstances becomes increasingly difficult.
Adaptation and strategies
The desired outcomes of coping are identified as physical health, psychological well-being and quality of life. Increased use of avoidance coping has negative effects on all these (O'Neill and Morrow, 2001; Murrow and Oglesby, 1996).
Individuals adopt strategies to deal with the problems of illness. These actions are aimed mainly at reducing symptoms, coping with living with the disease, and adopting health-related behaviour to prevent deterioration of the problem or acute episodes occurring. Some of this behaviour is learnt through information gained from health-care workers, some through experience and some through information gleaned from others. Patients must also learn how to access resources and how to minimise impact on relationships, family life and work.
Symptom management in chronic UTI
Lifestyle modification and behavioural changes, though not guaranteed to stop active episodes of the illness, may significantly reduce them in number (Leiner, 1995). The individual must be given accurate information about symptoms. The nurse should help identify the unique symptom pattern for that patient and help the individual distinguish between ongoing symptoms, the signs of an acute flare up and the trigger factors for flare ups. Together they can determine a programme of self-care that is compatible with the life and abilities of the individual (Box 4). With time and experience, the patient may develop more strategies that are equally or more effective in his or her particular case.
When faced with a patient with a long-term condition such as chronic urinary tract infection, treatment of symptoms is not enough. Behavioural or lifestyle changes may be indicated. The nurse should identify how the patient copes with his or her problems and what strategies are in place to help manage the changes which may occur as a consequence of the illness. It is a combination of all these factors that will enable the patient to be empowered to make decisions and participate in his or her own care.
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