Aspects and Implications of Lupus
article syndicated from NIAMS
updated about 1 year ago
Systemic lupus erythematosus (SLE, or lupus) is a chronic, inflammatory, multisystem disorder of the immune system. Lupus: A Patient Care Guide for Nurses and Other Health Professionals is concerned primarily with this form of lupus.
Psychosocial Aspects
For the lupus patient, the emotional aspects of dealing with a chronic disease can be overwhelming. They can also make a patient feel isolated from friends, family, and coworkers. Grief, depression, and anger are common reactions of patients about their lupus.
Lupus patients and their families deal with the disease in strikingly different ways. Managing the ups and downs of the disease may put strains on relationships and marriages. Younger patients may fail to assert their independence or develop a life away from home if they feel they cannot cope with their disease on their own. Family members are often confused and frightened over the changes they see and need guidance and constructive suggestions on helping the patient. Children of lupus patients, particularly those too young to really understand the disease, may need special help in coping with their parent's illness. It is in these areas that the patient, family, and support systems need to be assessed, encouraged, and guided so that they work together as a team. Allowing the patient and her or his family time and freedom to move through different emotional phases without criticism and unrealistic expectations will facilitate acceptance of the disease. The health professional can have a major role in helping a patient adjust and can help with referrals to a social worker, counselor, or community resource, if needed. Chapter 6, Psychosocial Aspects of Lupus, discusses these issues in more detail.
Health Care Implications
How lupus is defined, diagnosed, and treated and the psychosocial issues involved have implications for the way that the nurse or other health professional works with a patient who has lupus. For example, a newly diagnosed lupus patient needs help in getting current, accurate information about the disease and in defining realistic expectations and goals. The Patient Information Sheets in Chapter 7, can help. The health professional can clarify information with the patient's doctor, make rounds with the doctor, and act as a liaison between the patient and the doctor, if needed. Frequently, many doctors are involved in caring for a lupus patient at one time. This may increase the patient's confusion and leave gaps in information. Emotional support to the patient is essential. Being available for questions, providing reassurance, and encouraging discussion of fears and anxieties are all crucial roles that the nurse can play.
The lupus patient hospitalized during a flare requires symptomatic nursing care. It is important to note that objective data, such as anemia or sedimentation rate, may not support subjective complaints of fatigue or pain. Careful head-to-toe assessment and documentation of all symptoms and complaints are important. Symptomatology changes constantly, so frequent reassessment is necessary. Reevaluations validate a patient's concerns and alert the doctor to changes that may be transient yet significant.
The patient's tolerance for physical activity and need to control what she or he can do should be respected. The patient should be involved in developing a care plan and daily schedule of activities.
The best way to treat lupus is to listen to the patient, whether that patient was diagnosed today or years ago. The patient's support systems can be expanded to include pamphlets and books, physical or occupational therapy, vocational rehabilitation, homemaker services, the Visiting Nurses Association (VNA), the Lupus Foundation of America (LFA), and the Arthritis Foundation (AF).
Lupus is a challenge to everyone concerned. The health professional has a key role in its management. Accurate documentation, supportive care, emotional support, patient education, and access to community resources will provide the patient and her or his family with the tools they need to cope effectively
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