Student Author Award Submission— Self-Esteem Disturbance in Patients with Urinary Diversions: Assessing the Void

    Patients, whether continent or incontinent, with urinary diversions may experience self-esteem problems. Living a life with “abnormal” urinary function, life-long catheterization, stoma care, incontinence, and urine leakage issues can lead to feelings of shame and decreased self-worth.

     Patients who receive a neobladder, for example, have to adapt to permanent body function alterations.¹ Much of the literature on related topics addresses body image and quality-of-life concerns in patients who have had a cystectomy and a urinary diversion; self-esteem, specifically, has not received the same attention. Although self-esteem is related to body image, sexuality, and quality-of-life issues, self-esteem disturbance is a specific nursing diagnosis² and, therefore, should be treated independently as the focus of research. The purpose of this paper is to discuss self-esteem changes in patients who undergo urinary diversions and to present a nursing plan of care for these patients.

The Concept of Self-Esteem

    Self-esteem is one’s personal judgment regarding his or her own self worth.³ It is a sociopsychological construct of an individual’s perception of self⁴ formed all throughout childhood, adolescence, and adulthood. Self-esteem develops from within the self and through others. The development of self-esteem comes, in part, from the love and acceptance of others and is directly related to self-ideal, a carefully constructed image of the type of person one would like to be depending on aspirations, goals, and values.³ Self-concept is the way in which an individual sees him or herself.

    The closer one’s self-concept is to one’s self-ideal, the higher one’s self-esteem (see Figure 1). High self-esteem also is attributed to the acceptance of self, despite mistakes, defeats, and failure.³ When people do not attain goals and feel unloved by others, they will feel inferior and have lower self-esteem. People also tend to see themselves as others believe them to be. ⁴

    Body image, sexuality, and other personality traits can be affected by altered health status, such as a urinary diversion, and can result in a change in self-esteem. McMullin and Cairney⁴ state, “The relative salience of body image to identity formation acts as a mechanism through which self-esteem is made manifest in individuals.” People who accept their bodies are more likely to have a higher self-esteem.³ The origins of self-esteem can be traced back to childhood and are related to acceptance, warmth, involvement, consistency, praise, and respect.³ Early ideas and behaviors of continence and bladder/bowel function are also developed during childhood and can affect self-esteem.

Childhood and Bladder Control

    Toilet learning usually takes place when the child is 2½ to 4 years old. Bowel control is usually achieved first and then bladder control, first during the daytime and then during the night.⁵ As children grow and develop, their neurological abilities and large motor skills improve, allowing them to walk, think more complexly and therefore, grasp the idea of bowel and bladder control. Verbal skills begin to evolve further. As neurological function improves, the child develops the conscious ability to control the sphincter muscle involved in urination and defecation.⁶ Soon the child is able to have bladder control and become socialized into the world of continence. Healthy attitudes toward the human body and elimination issues are developed early with positive and supportive behaviors from the parents and other adults assisting in toilet learning.⁶ Puckett and Black⁶ affirm that toilet learning is important in the child’s development of autonomy or feelings of shame and doubt and that it has an effect on psychosocial development. Children who do not achieve continence can develop poor self-esteem and their inability to toilet properly may affect the way they interact with other children. Similar feelings of self-image and self-esteem regarding bladder function may develop in adults who are faced with changing and unusual bladder habits. They may develop poor self-image and subsequently may have decreased social interactions that will, subsequently, lower self-esteem.

Urinary Diversions

    People diagnosed with bladder cancer or other pelvic cancers, fistulae, radiation damage, or other urological complications may undergo a urinary diversion and/or a cystectomy. Internationally, 55,000 new cases of bladder cancer were diagnosed in 2003; it is the fourth most common cancer among men and tenth among women.⁷ If the bladder cancer invades the muscle, the recommended treatment is a cystectomy (removal of the bladder). In many cases, removal of the near organs (in men the prostate and in women a hysterectomy)⁷ also may be necessary. The surgery can lead to an incontinent diversion, catheterizable diversion, or orthotopic bladder.

    Incontinent diversions include a nephrostomy tube, suprapubic tube, or cutaneous diversions. A nephrostomy tube is a hollow device placed in the kidneys and brought through the skin to collect urine and bypass the lower portions of the urinary system. A suprapubic tube is placed directly in the bladder.⁸ Patients with an incontinent cutaneous diversion can have an ileal conduit or colon conduit that uses a portion of bowel to make an internal tube; a stoma is created on the abdomen to drain urine, requiring an appliance for urine collection. A ureterostomy employs the same concept except the ureters are mobilized to the skin directly without an internal collection area.⁸ This procedure is less common now because a conduit provides a lower risk of stenosis at the level of the skin⁹ and less skin irritation from exposure to urine.

    Continent catheterizable reservoirs include the Indiana (also Florida, Miami, or Mainz) pouch.⁸ The Indiana pouch is created using the large and small intestine to create an interior reservoir. The ureters are connected to the inside of the reservoir in a manner that prevents reflux and a piece of small intestine from the reservoir is brought out to the skin to create a stoma. A one-way valve mechanism is created at the stoma site.¹⁰ The patient must catheterize the stoma every 3 to 4 hours to empty the reservoir and may wear a small bandage on the stoma to collect any mucous or excess drainage. The stoma should remain continent. The Koch pouch uses the small bowel to create the reservoir. A nipple valve is fashioned at the proximal and distal areas of the reservoir⁸; the valve is attached to the abdominal wall via a stoma and catheterized for urinary drainage.⁸

    Orthotopic bladders or neobladders offer continent diversion without a stoma. Instead, the new bladder is attached to the person’s native urethra. Either the small intestine or both the small and large intestine are used to create a low-pressure reservoir that attaches to the urinary sphincter.¹ Only bladder cancer patients with good renal function, a longer than 1- to 2-year life expectancy, good fine motor skills, normal liver function, intact cognitive status, and no history of any inflammatory bowel disease are candidates for this procedure.¹¹ In addition, urethral and bladder neck biopsies should be negative for cancer.¹² During the surgery, extra caution is taken to preserve the sphincter mechanism as well as maintain maximum functioning urethra length. These measures will help ensure satisfactory urination.^13,14

So Where is the Void?

    For people who undergo urinary diversions, many factors contribute to the gap or void between self-ideal and self-concept. Society views body waste, including urine and feces, as “dirty”¹⁵ and disgusting when compared to other naturally occurring body compositions such as saliva or semen. Many people facing a fecal or urinary diversion may feel unclean and experience decreasing self-worth. Patients may grieve over their lost body function — the sudden change in body image may be associated with that grief.¹⁶ Some people may hide their feelings.¹⁶ Some people may have lived with illness for many years but the urinary diversion suddenly changes their physical body, presenting something new with which to cope. Their “self” has changed and no longer coincides with their previous self-concept.

    Much of the literature indicates that patients with an incontinent urinary diversion, such as an ileal conduit, have poor quality of life compared to patients with a continent urinary diversion, primarily due to the burden, anxiety, and unhappiness of having an external appliance.^9,13 Continent catheterizable reservoirs and orthotopic bladder surgeries may have been developed to offset the psychosocial disadvantages of conduits and tubes.⁹ These diversions free the patient of any external device; therefore, they are associated with better self-image than the traditional incontinent diversions. In the case report by Benezra et al,¹⁷ the surgical conversion of a urinary diversion to a continent catheterizable diversion improved the lifestyle of a 66-year-old woman. In a study conducted by Moreno et al¹⁸ of three women with quadriplegia resulting from spinal cord injury who switched from indwelling catheters to continent reservoirs, self-esteem increased.

    Although current available literature indicates that patients with an orthotopic bladder and a continent urinary diversion may have a better overall quality of life compared to patients with an incontinent diversion, many life adjustments need to be made in all circumstances. According to a review of the literature, patients with orthotopic bladders have to adapt to urinating by using pelvic floor relaxation techniques combined with abdominal straining⁹ and may have to void more frequently than the general population because the neobladder has a smaller capacity than a normal bladder. In the qualitative study by Beitz and Zuzelo,¹ 10 men and four women were questioned regarding their neobladders. The authors note that some patients felt frustrated by nighttime incontinence and some had to make lifestyle changes, including using protective pads and underwear to accommodate their condition. In the fluorourodynamic and survey study conducted by Grossfeld et al¹⁹ from 1990 to 1995 involving 17 women undergoing lower urinary tract reconstruction and Koch ileal reservoir construction, four patients required some kind of intermittent catheterization to empty out the new reservoirs. Such patients may experience self-esteem disturbances regarding the changed voiding habits described.

Self-Esteem Disturbance and Nursing Care

    Nurses care for the entire body, mind, and spirit of the patient — they do not have specialized or extensive psychiatric training to care for patient’s social or emotional disturbances. McHugh¹⁵ states that many times surgeons do not recognize the negative impact certain surgeries can have on patient self-esteem. Therefore, the nurse, who is in more frequent contact with patients than surgeons, may be more likely to assess feelings that indicate the patient is experiencing self-esteem problems.

    Not all patients who undergo urinary diversions will experience disturbed self-esteem and no presurgical screening instrument exists to determine who is at risk and who is not. However, preoperative feelings and thoughts regarding the patient’s urinary diversion surgery can be a distinguishing factor and listening carefully to patients is important. Patients may directly or indirectly demonstrate a change in their self-esteem and/or may express feelings of shame or guilt.²¹ A change in behavior such as decreased involvement in a previous interest, decreased interest in care,²¹ and decreased involvement in social activities may occur. Some patients will no longer be interested in grooming and may exhibit prolonged or severe denial of their feelings.²¹ In patients with a stoma, the desire to pass as normal can be a significant phase in their transition — denial provides a way to avoid facing the reality of having a stoma.²² Patients may experience a decreased interest in sex due to poor body image. They may reject positive feedback and be unable make decisions. They may feel angry, irritable, and/or sad.²¹ All of these characteristics may be associated with a self-esteem disturbance.

A Self-Esteem Care Plan

    The following nursing plan, based on Gulanick et al’s²¹ care plan related to urinary diversions, incorporates assessment, intervention, and expected goals for patients with self-esteem disturbances.

    Assessment. Four major points directly relate to the description and definition of self-esteem and are importance to address. First, listen and/or document how patients describe themselves — ie, have patients describe and assess their self-concept. Who do they feel they are right now? This assessment will yield crucial information about the difference between the patient self-concept and self-ideal.

    Assess any unsolved grief. A certain amount of grief is expected after a loss or change in a body part or body system¹⁶ such as an ileal conduit or even the adjustment of a neobladder. Unresolved grief may “inhibit the patient’s ability to move behind the loss and accept him/herself as he/she is now.”²¹

    Assess the degree to which patients feel loved and accepted by others.⁴ For example, does the spouse have a hard time initiating sexual activity because of the patient’s new urinary stoma? Remember, others’ views affect self-esteem.⁴

    Finally, assess how competent patients feel about their ability to carry out their own and others’ expectations.²¹ More specifically, are patients still capable of autonomy and carrying out tasks of responsibility? Are they withdrawn? If the patient is still able to function independently, a future improvement of self-esteem may be more likely.

    During the assessment phase, remember that a previous psychiatric history of problems is known to be associated with increased symptoms postoperatively.²³ Any patient who expresses an inability to control his/her feelings, behaviors, or thoughts may have a significant psychological problem²³ and should be referred to an appropriate healthcare provider, such as a psychiatrist or psychologist. Patients with a prolonged course of self-esteem disturbance unresolved by nursing intervention should be referred to an appropriate healthcare provider.

    Interventions. Communicating with patients is crucial. The nurse should allow patients to freely voice their opinions, feelings, and thoughts and ensure active listening. The nurse should discuss normal impact of a urinary diversion with patients and provide opportunities for questions. Remember to give constructive feedback at efforts to improve feelings.²¹ Also, giving basic information and clearing up any misconceptions may be helpful to the patient.²⁴ A wound, ostomy, and continence nurse will be able to provide the best information and possibly the most support — these nurses have the specific knowledge and training to help this particular population of patients.

    The patient should be encouraged to resume normal activities, especially those likely to improve self-esteem.²¹ If patients have a stoma, they need to be reassured that the stoma will not prevent participation in daily activities.²⁴ If they must wear a pouch for urine collection, they need to know the pouch will not interfere with normal activities such as sitting, running, bike riding, and bending.²⁴ The nurse should help patients realize that sexual function may be altered but their sexuality has not been destroyed.¹⁶ Patients should be informed that special clothing that hides and stabilizes stomas is available.¹⁶ Nurses should help patients realize that although the way they eliminate waste has changed, their personality (how funny, how caring, and how interesting) has not changed.¹⁵

    The nurse should ensure that patients know that self-esteem disturbances are common during a time of grief.²¹ Assisting the patient to work through these thoughts and feelings of loss is important.

    Autonomy should be encouraged. Much of what nurses do is rebuild confidence in patients and help them regain their ability to care for themselves and be independent. Wound, ostomy, and continence nurses teach patients new to a stoma or continent diversion how to care for their new approach to evacuation, offering important self-care measures while reinforcing positive self-esteem.²¹ Patients who have a stoma and are taught stoma care will have an improved self-awareness.²³ This self-awareness can help combat negative thoughts, which, in turn, improves self-esteem. Patients who are independent in activities of daily living are likely to have an increased self-esteem.¹⁸ In Beitz and Zuzelo’s¹ study of neobladder patients, some patients “were amazed that they were able to learn self-catheterizing techniques.” This surprise in one’s ability to deal with difficult situations helps patients realize their own resilience, strength, and ability to cope, helping to build confidence along with self-esteem.

    Goals. The nurse and patient should build goals regarding feelings, behaviors, and actions that improve self-esteem. Goals should be specific to each patient. The areas in the patient’s life that affect self-esteem should be determined and become the areas of primary focus. Goals need to re-assessed periodically to determine improvement.

Conclusion

    Patients who undergo a urinary diversion may develop self-esteem problems. Several factors contribute to the patient’s view of self. Many of these are constant and cannot be changed, such as society’s view of elimination and waste and “normal” urination. But consideration of the patient’s feelings and the response to these external factors can help patients with self-esteem disturbance improve their own self-concept.
It is important to note that some patients with a new urinary diversion such as a continent catheterizable reservoir may have increased self-esteem depending on their previous medial history. The classification of self-esteem disturbance in urinary diversion patients in no way suggests that all patients with a new urinary diversion will experience decreased self-esteem. However, clinicians should be aware of the altered feelings and low self-esteem attributed to the loss of previously normal urinating ability and the effects of that loss of function.

    Finding current literature (less than 5 years old) that discussed self-esteem in the urinary diversion population was difficult. Body image is frequently discussed but studies involving urinary diversion patients and their body image changes were scarce. Self-esteem and self concept needs to be examined and described in order to fully understand the relationship between the various urinary diversions and the patient’s self-esteem. This complex topic cannot be fully understood due to the current gap in knowledge and research. Nevertheless, if patients meet criteria relevant to self-esteem issues, existing literature may offer ways to assess and help the patients improve their self-esteem. Identifying the void in patients’ self-concept and self-ideal allows nurses to assist their patients in minimizing this gap and help increase self-esteem.

    Future studies of urinary diversions and their affect on self-esteem must be conducted in order to fully understand the effects of incontinent, continent, and orthotopic bladder urinary diversions on patients. Studies regarding lived experiences pre- and post-urinary diversion would contribute greatly to the understanding of self-concept and self-image in this population.