Self Management In Nursing for Patient Education in Orphan Disease COPD Bipolar Disorder
What Is Orphan Diseases for Sum Preparation In Nursing Education for Patient
The assumption that SM preparation should be limited to diseases and symptoms for which there is a recognized moderately efficacious medical treatment leaves many individuals suffering psychologically, socially, and economically frequently seen as an add on to routine medical management including use of pharmaceuticals, the drugs are reimbursed while the SM preparation is not, even if they show equal positive effects.
Philosophically, the strong focus on patient compliance with the medical regimen prescribed for them has diverted attention from attempting to understand a person's SM strategies and helping to develop them rather than judging them.
A story of the difficulties a group of patients had with self-management of heart failure provides detail of the challenge before us. Although too small a sample size to be widely generalizable, the learning difficulties these patients depict ring true (Horowitz, Rein, & Leventhal, 2004).
These patients did not connect heart failure to their symptoms and did not have a clear understanding of acute and chronic heart failure related symptoms. Many patients isolated symptoms and attributed them to other illnesses such as dyspnea caused by asthma, unaware they were also related to a weak heart. They didn't understand that they could detect fluid buildup at early stages by regularly assessing their weight and symptoms, and very few believed they could control their symptoms.
Most thought diuretics were needed only when their symptoms (such as leg swelling) were severe. Despite strong interest in learning, most had inadequate information about heart failure and were not given the tools to prevent, thwart, or recognize mild or moderate exacerbation.
Orphan Diseases for Sum Preparation In Nursing Education
The assumption that SM preparation should be limited to diseases and symptoms for which there is a recognized moderately efficacious medical treatment leaves many individuals suffering psychologically, socially, and economically. Mayou, Sprigging's, Birkhead, and Price (2002) describe a randomized controlled trial of a brief, inexpensive intervention that yielded statistically and clinically significant benefit for 78% of patients in the intervention group as opposed to 43% in the control group.
Most treated patients returned to what they saw as normal daily activities including involvement in more vigorous exercise. The intervention consisted of a cardiac nurse discussing likely causes of the symptoms and participants' beliefs, brief training in relaxation, and preparation of plans to return to full activities.
Patients were confident they could now cope with the symptoms, clear about the implications, and were given the option to contact the nurse by phone if required. Exercise advice, anxiety management, and breathing management were to be undertaken as required.
What Is Meniere's Disease
Another disease without a clear pathophysiology, an ill defined clinical course, and uncertainty about the efficacy of many approaches to treatment is Ménière's disease. Its early stages are characterized by unpredictable attacks of violent vertigo, nausea, vomiting, visual disturbances, hearing loss, and tinnitus followed by relatively symptomatic periods of remission.
If the disease becomes stable, vestibular rehabilitation
programs (which use specific exercises to improve adaptation or habituation) may
be available, but in the mean time patients are left with an extremely
disabling disease and no means to SM. Education at early stages of the disease
should focus on knowledge of the disease and available treatments, and
preparedness for an attack and management of the sequelae (Dowdal Osborn,
2002).
As many as half of people with Ménière's disease experience some kind of warning symptom. Individuals can be helped to. identify (through a diary or journal) a predictive symptom that indicates an attack is imminent. During a vertiginous attack, patients should be taught how to use a visual target to help suppress nystagmus and stabilize their orientation.
They also need to learn how to deal with the fatigue, disequilibrium, sensitivity, and nausea that frequently immediately follow an attack. Patients are frequently unaware of strategies to improve their safety and function and become socially isolated. Even though answers about cause, progression, and treatment are lacking, patients can still develop confidence and skill to take control of this disease through validation, realistic reassurance, and pertinent education (Dowdal Osborn, 2002).
Self Management Chronic Obstructive Pulmonary Disease
SM preparation for chronic obstructive pulmonary disease (COPD) has not been established. Forty to fifty percent of patients with COPD discharged from the hospital are readmitted during the following year, frequently with an acute exacerbation.
A randomized controlled trial of SM preparation showed hospital admissions for exacerbations of COPD decreased 40% more in the intervention group as compared with the usual care group; Admissions for other health problems decreased by 57%, emergency room visits by 41% (32% in intervention group and 44% in the usual care group) and unscheduled physician visits by 59%.
The intervention used a SM workbook and a plan of action to develop skills in: breathing and coughing techniques, employing energy conservation and relaxation, preventing and controlling symptoms through inhalation techniques, using a plan of action for acute exacerbations, living a healthy lifestyle , and carrying out a home exercise program (Bourbeau, 2003).
Bipolar Disorder and Patient Self Education In Nursing
Bipolar disorder (manic-depressive psychosis) is a common mental illness characterized by two types of relapse-mania and depression. Five studies have shown identifiable and consistent prodromal symptoms of manic or depressive relapse at 2-4 weeks before full relapse in most patients with bipolar disorder. These prodromal symptoms are idiosyncratic to both the patient and to type of relapse (mania or depression).
In a randomized controlled trial, teaching patients to recognize early symptoms of manic relapse and seeking early treatment is associated with clinical improvements in time to first manic relapse, social functioning, and employment. The intervention had no effect on time to first relapse or the number of relapses with depression.
Producing and rehearsing an action plan to use once these prodromes have been recognized by the patient was central, as was recording them on a card in laminated plastic, carried by the patient (Perry, Tarrier, Morriss, McCarthy, & Limb, 1999 ). Colom et al. (2003) showed these effects could be created in a group (8-10 patients) psychoeducation format.
Chronic Pain Management in the Community
The prevalence of chronic pain problems among community dwelling elderly persons is 58-70% and among older persons living in nursing homes 45-80%. Wellness oriented pain management preparation in these communities is rare. One study (Ersek, Turner, McCurry, Gibbons, & Kraybill, 2003) describes delivery of a 7-week pain management preparation program in group format versus an educational booklet control condition.
A no attention control group was not used. Subjects had had pain that interfered with regular activities for more than 3 months. The experimental intervention provided basic education in pain mechanisms, pain self management, and pharmacologic and non pharmacologic therapies with a strong focus on regular practice of pain management skills, setting and working toward individualized pain management goals, and repeated practice of relaxation and pain coping skills .
The self management group showed significantly greater pre- to post treatment improvement in pain intensity and physical role function than did the educational booklet control group. By 3 months similar proportions in each group had clinically significant improvement in pain, suggesting need for relapse prevention booster sessions. These individuals were highly motivated to participate in self-management approaches.
Highly Active Antiretroviral Therapy (HAART) for HIV Infected Patients
Current data suggest patients must take 95% or more of HAART doses to maintain suppression of viral replication, that failure rates increase as adherence levels decrease, and that lack of strict adherence is a cofactor in clinical progression to AIDS. Because doctors have various ways of communicating with patients about adherence, a formalized psychosocial and behavioral intervention to improve patient's adherence to HAART has been highly recommended.
A randomized controlled trial of an education/counseling intervention versus standard care yielded higher adherence in this group. A standardized intervention delivered by specially trained nurses through a session right after enrollment and then every 2 months included enhancement of patient self efficacy skills; improvement in knowledge and personal beliefs about the disease and medications, and identification of fears, anxieties, uncertainty, and depressed mood (Pradier et al., 2003).
Next Steps In Patient Education In Nursing and Health Care
Self management preparation for chronic disease is one of the most well-defined purposes of patient education and probably the one with the highest potential for benefit. Yet, it remains underdeveloped with inadequate investment. Self management preparation is distinctive in always incorporating problem solving and skill development with significant practice in real life contexts, to the point of mastery and generalization to all areas of life functioning, and development of self efficacy.
In some instances, alteration of
beliefs and attitudes is included. Video assisted modeling, guided practice,
role-playing, home-work assignments, and assistance of family members in
reinforcing the skills are important teaching methods. Relapse prevention and
continued education at various intervals are required elements of such
preparation, in part to adapt to changes in the chronic disease, the person,
and the environment.
Most programs do not adequately address the impact of commodities
on self management, especially when the regimens for these various diseases
make seemingly incompatible self-management demands,
It is also important to check to see whether preparation for
intensive management of chronic disease leads to increased feelings of burden
and negative well being or quality of life. One study found that among
diabetics, detrimental effects on adjustment and quality of life, depression,
and anxiety did not accompany self-management preparation (Steed, Cooke, &
Newman, 2003).
Since proven models for self management preparation now exist for many chronic diseases, they provide a “gold standard.” Unevaluated and inadequate programs should be replaced (Clark, 2003).
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