The Adjustments Experienced by Persons With an Ostomy: An Integrative Review of the Literature
The person with an ostomy may focus on the negative aspects of the stoma rather than its function to the detriment of self-image, acceptance of a new lifestyle, and ability to self-care. The purpose of this integrative literature review was to explore factors involved in the adaption process of persons with a gastrointestinal stoma with a focus on the role of nonspecialist professional nurses in the process.
The authors searched the databases of the Virtual Health Library, the Latin American and Caribbean of Health Sciences Information System, the Scientific Electronic Library Online, the Spanish Bibliographic Index of Health Sciences, International Literature on Health Sciences (MEDLINE), and the Cochrane Library using the keywords ostomy, adaption, and nursing for full text articles in all languages published between 2008 and 2013. Of the 612 articles identified, 21 were not duplicates and met the inclusion criteria of availability of full text, published in the past 5 years, indexed, and covering the topic of stoma adaption; this literature was analyzed using Bardin’s thematic analysis. Three categories emerged: experiences and adaption strategies employed by the person with a stoma, the role of the care provider, and education as a tool in healthcare. Persons with a stoma need time and support from caregivers, family, and friends to adjust to the changes and adapt to having a stoma. This includes the ability to overcome the stigma of appearance and activities involving social interaction. Caregivers and health professionals need to serve as information resources while encouraging care autonomy. The more informed the patient, the smoother the adaption process. The literature also suggests nursing education may affect caregiving. Further research to elucidate the adaption experienced by each person with an ostomy is needed to help the multidisciplinary team plan care appropriately.
Potential Conflicts of Interest: none disclosed
Indications for the surgical creation of a gastrointestinal stoma include diverticulitis, colorectal cancer, and inflammatory disorders of the gastrointestinal tract. The stoma is the artificial opening between two hollow organs or between one hollow organ and the outside of the body, constructed to permit the passage of body fluids or waste products. Ostomy surgeries can be classified as temporary or permanent and are described according to the organ in which they are created. When the stoma is created in the colon for elimination of feces or secretions, it is called colostomy; an ileostomy is an opening in the ileum; a gastrostomy is created in the stomach for food and nutrition; and when at the level of the jejunum, it is a jejunostomy.1
The presence of a stoma leads to many changes in the life of the patient. These changes start the moment the disease or condition is discovered, triggering different patient coping behaviors. The person with a new ostomy generally focuses on the negative aspects of the stoma and its effect on his/her body image, responses that evolve as the person goes through the process of adjustment and returns to familiar life activities.2,3
Considering the benefits, for most patients with an ostomy and the desire to improve their quality of life, it becomes imperative for clinicians to be knowledgeable about the reasons for and the possible complications and challenges of ostomy surgery.4 It is believed nurses are professionally closest to the patient and his/her family because they spend more time with them than most other healthcare professionals and can serve as the link between the patient and the multiprofessional team; as such, it is especially important for nurses to be familiar with ostomy care.
The purpose of this integrative review of the literature was to explore factors involved in the adaption process of persons with a gastrointestinal stoma with a focus on the role of nonspecialist professional nurses in the process.
Integrative literature review (ILR) is a comprehensive approach that facilitates the inclusion of theoretical and empirical literature, as well as other studies, with quantitative and/or qualitative approaches. In other words, this methodology updates information related to a specific topic, taking into account studies already published.5
This type of integrative investigation6 was performed according to research stages suggested by the current literature. The guiding question was: What are the factors involved in the adaption process of the person with a gastrointestinal stoma?
The authors conducted a literature search between December 2012 and March 2013. Indices searched included the Virtual Health Library (VHL), the Latin American and Caribbean of Health Sciences Information System (LILACS), the Scientific Electronic Library Online (Sci-ELO), the Spanish Bibliographic Index of Health Sciences (IBECS), International Literature on Health Sciences (MEDLINE), and the Cochrane Library.
The search terms used were ostomy, adaption, and nursing. The criteria for selecting these words was their inclusion in the Health Science Descriptor (DeCS) and that they represent, at least in part, the subject of the study. In order to have more articles related to the topic proposed, a cross-search with the keywords was performed using the Boolean connector “AND.”
The criteria for including the articles were full text, published in the last 5 years (from 2008 to 2013), indexed in the databases previously mentioned, and addressing the adaption experienced by the person with a stoma. No language restrictions were applied.
Exclusion criteria were articles that may not be related to the proposed topic, theses or review studies, and publications that did not meet the study objective.
Content analysis. Article content was grouped in thematic categories in three stages5-8:
Stage I. Articles selected were read for context and to abstract important impressions relevant to Stage II.
Stage II. Units of analysis were selected. After studying the material, researchers highlighted sentences, clauses, and paragraphs that discussed the topics frequently mentioned in order to construct thematic units.
Stage III. Through careful reading, relevant meanings and interpretations were abstracted in order to scaffold the new knowledge.7,8
The studies were categorized based on Bardin’s thematic analysis,7 which consists of three basic stages: preanalysis, analytical description, and inferential interpretation. In preanalysis, the research material is organized to determine what documents will be submitted for analysis and to formulate hypotheses for the development of indicators for the final interpretation. During the analytical stage, articles are subjected to thorough study where the raw text data are aggregated into categories of similar meaning. The inferential phase of interpretation involves reflection and intuition to establish relationships and expand forthcoming ideas.
Through data analysis, three thematic categories emerged: experiences and strategies facing the person adjusting to the ostomy, the role of the caregiver in adaption, and education and health as a tool in caring.
Publications. Six hundred, twelve articles (612) were identified; 184 were published from 2008 to 2013, and 114 were full texts. Of these 114 articles, 58 were excluded after careful review by the researcher and her advisor as not related to the topic proposed, 28 were duplicated in the databases, and two were theses and reviews, leaving 26 articles for further consideration. Five additional studies were excluded because they did not fit with the objective of this work. Ultimately, this integrative review was performed with 21 articles (11 qualitative and 10 quantitative; see Table 1), distributed as depicted in Figure 1, adapted from Bellucci and Matsuda.9
The 21 articles were published in 16 different journals, including 19 specific to nursing and two to public health (women’s health and quality of life related to health). Publication languages included Portuguese (13), English (four), and Spanish (four). Thirteen (13) were published in Brazil, four in the United States, three in Spain, and one in England. Studies involved coping adaptions of ostomates, social and psychological difficulties, feelings, quality of life, sexuality, eating habits, knowledge about self-care, and nursing and multiprofessional assistance.
Experience and strategies regarding the adaptions to having a stoma. The literature in this category refers to the way individuals live and the strategies they use to cope with an ostomy. Publications addressed changes experienced during the process, the way the brain recognizes and uses the body as a relational tool with the world, self-care, survival strategies, the ostomate’s feelings, and professional assistance offered during the adaption process.
The individual whose medical condition requires an ostomy, considered a mutilating surgery, not only loses a part of the body, but also experiences changes regarding his/her aesthetic conformation. The adaption process becomes internalized because the person with a stoma loses the capability or ability to control bowel movements or expulsion of flatulence. In addition, he/she always has to use an ostomy device.2,10-14
During adaption, the person with a stoma has multiple feelings — reactions that go beyond the factors of age, color, race, gender, religion, and culture. Negative feelings such as fear, insecurity, denial, shame, pain, and anger are described as being the most frequent; as a result, the person feels socially stigmatized. Over time, the new condition is usually accepted and feelings gradually change. In addition, positive perceptions such as security, well-being, love, self-efficacy, support, and confidence also appear.2,10-17
A return to productive and social activities is hampered by an increased perception of incapability to perform tasks. Persons with a stoma report they stopped certain activities because they felt differently about their bodies. Insecurity and loss of self-esteem also led them to withdraw from social and familiar contexts.12,16,17
Acceptance of an ostomy means changes in daily life, mostly in relation to the difficulties in adapting to work, social, and family contexts; leisure; sexuality; nutrition; and physical activities. However, when the adjustment period — which can take days, weeks, or months depending on the person and the type of surgery and body adjustments — is over, the individual begins to accept his/her limitations and starts to gain confidence in the ostomy device technology. He/she then considers him/herself able to work, travel, swim, hike, leave home, go to church, embrace his/her sexuality, talk about the ostomy, and perform activities that were enjoyed before surgery, and thus reinsert himself/herself socially with family and friends.4,11-18
The literature13 suggests that teens, due to their natural curiosity, cope with the presence of the ostomy better than adults; they accept the device more easily, explore strategies for dealing with their situation, and feel the stoma saved their lives. However, the same study shows several adaption aspects are aimed at parents, who, moved by fear, start a cycle of overprotection of their child, not letting him/her learn and practice self-care as performed previously. The child loses control of the adaption, making the coping process harder.
Identifying coping strategies aimed at solving ostomy-related problems makes persons with an ostomy feel more confident with their new perspective on life. This aspect is evident when a patient embraces behaviors for living well with an ostomy, such as avoiding food that causes flatulencein excess or more fetid feces, going out with an extra ostomy device, wearing loose comfortable clothes to hide the ostomy device, carrying a hygiene kit, avoiding eating out, sitting close to noisy places to cover involuntary flatulence noise and odor, accepting the ostomy, telling friends, and changing the way he/she deals with sexuality. These aspects are applicable to psychological, physical, and social arenas and offer strategies to alleviate the pressures encountered in the adaptive process and in developing autonomy in ostomy care.2,13-16
Intimacy. Sexual activity usually does not occur without the ostomy device to avoid the fear of accidents and leaks. For some persons, it is important to cover the device in different ways by using towels, sweaters, lingerie, long tops, and dresses/gowns. Hiding the device from the view of the partner is, in essence, a way to minimize a person’s own discomfort with his/her appearance. According to ostomy patients, the device with feces represents the antithesis of sexual arousal and desire. Adaption problems occur both for the patients and the people they live with. A healthy sex life is only possible when the ostomate accepts his/her physical limitations, mostly by overcoming the social stigma and accepting his/her own situation.14,16
For single persons with an ostomy, problems extend beyond the biological aspect into the psychosocial arena, because the person feels ashamed with a new sexual partner. Everything has to be carefully planned after the surgery — eg, going to a club or wearing a bathing suit. The process is easier for married people because they already have a relationship presurgery and understand that sexuality also involves fellowship in daily life.12,14,16
The role of the caregiver in adaption. The search for guidance and care goes beyond knowledge to include the ability to cope with sometimes challenging situations. In order for patients to be able to perform effective and appropriate self-care, it is imperative that physicians, nursing staff, and multidisciplinary professionals provide as much information as possible to ostomates and their families.2,10,11,15
Studies2,10-15,17 revealed differences between healthcare teams: some team members value giving explanations to the family and the patient, while others do not feel comfortable with this process. When these professionals do not act according to patient expectations (ie, do not provide the information or provide incomplete information when asked by the patient) there are negative consequences for both the family and the patients. Often ostomates who were not provided information presurgery denied their situation and did not attend scheduled nursing appointments. In the adaption process, the patient also needs help with regard to interpersonal relationship changes; the nursing staff — persons closest to the patient — offers a sense of acceptance and understanding of the changes, facilitating effective self-care as well as support for the new concerns that appear.
The professionals interviewed in studies19,20 reported ostomates should be clear about all procedures from presurgery until hospital discharge. Easing the patient’s adaption and helping him/her create a positive attitude toward his/her new conditions requires providing educational support about the situation, including the family as a care unit, encouraging the patient to increase the network of support, encouraging the patient to achieve self-care, and assisting the patient in coping with the new lifestyle.19,20
Therefore, the healthcare staff must exhibit a caring attitude toward the patient. This professional-patient interaction should be inspired early in their professional training, where students learn to care for patients as part of their studies. The nurse educator, experienced in care assistance, must be attentive to the needs of the students in order to help them develop their perception skills and help them meet the needs of the persons with a stoma. Reports show educational practices that encourage students to observe and experience reality beyond what is found in books help them develop perspectives that make them sensitive to the needs of their patients in their adaption to having a stoma.21-23 One study23 that allowed clinicians to gain a better idea of patient challenges involved nursing students who simulated the experience of having a stoma by wearing an ostomy device on their bodies for 24 hours. Results showed that experiencing this condition, even in a fictitious way, led students to develop a better appreciation for the situation. Living the reality generated many positive and negative feelings related to device adaption, the reactions of the other people, and the telling details of daily life as a person with a stoma.
Throughout the adaption process, the role of the caregiver is of utmost importance as to how well the person with an ostomy accepts the new condition. The family, as a constructive element of a sympathetic relationship, becomes the support for strengthening the patient’s self-esteem and self-image and can diminish his/her suffering. Furthermore, the family, being a care unit, makes the patient feel safer when performing self-care, not only with regard to the stoma itself, but also by providing support for physical, psychological, and emotional concerns.24
In the studies examined, persons with an ostomy, some apprehensive about the stoma and using related devices, were helped by professionals and family members to take care of themselves. In due course, the majority began to be independent. The literature suggests the effectiveness of self-care was related to the information studied or addressed, the knowledge in relation to hygiene techniques acquired, the protection of the peristomal skin, and the comfort changing the ostomy device. Performing self-care is of great importance, because it is from this activity the patient can rehabilitate and adapt to the new situation and gain independence, comfort, and security.4,10,13,16,17 Self-education about the stoma, gained by talking to health professionals and/or reading books, pamphlets, or using Internet resources, also helped persons with a stoma become informed and involved in their own care.2,14,17
Education and health as tools in caring. The publications assessed refer to education and health from the caregivers’ perspective as shown by the knowledge and practices of the person with a stoma and what is formally taught.
Health education assists individuals and groups understand the uniqueness of their environment, provides opportunities to consolidate ideas and develop actions from their own experiences, and seeks to guide and encourage the socialization of individuals in activities in order to improve their life and health conditions, including their ability to modify their habits.25-28
Providing care is a multifaceted process that varies according to sociocultural and personal experiences. In some studies reviewed, the themes that evolved in developing educational programs for the person with a stoma included the adaptive period, the information received during hospitalization, family life, social connections, work productivity, religion, individual rights, ostomy care, sexuality, exercise and sports, leisure activities, clothing, and diet.25-28
Studies26,27 show the dialogue between the healthcare team and the patient is the main tool for an easy adaption, as all parties outline the goals and opportunities to transform the reality experienced. In addition, the healthcare team should know the perspectives and the phenomena surrounding the ostomy, as well as the relevant information that should be shared with the patient and the family to strengthen the biopsychosocial interaction and, ultimately, stoma acceptance.
Knowing the understanding, beliefs, and everyday life practices of the patient, the healthcare team can facilitate more effective healthcare plans. Team members also can form thematic educational groups in order to exchange scientific and popular experiences, breaking the paradigm that the healthcare team is the only entity to hold knowledge and give care. Acquaintanceship circles stimulate participants to minimize their anxieties — the key to living successfully with an ostomy.25,28
The causative disease and stoma adaption processes are difficult realities the patient, the family, and the healthcare professionals who participate in ostomy management must accept.
In order to promote an efficient adaption for the person with a stoma, the literature suggests considering all the changes the ostomate has undergone in the disease process: elimination patterns, eating habits and hygiene, adapting to the use of the equipment, sexual activity, sleeping patterns, and body image — paradigm breaks experienced with this new condition that require relearning daily activities, gaining experience with new demands, and accepting life as an ostomate. The key components to accepting life with a stoma include social life, family, and helpful professionals.
Social life. Social life reintegration was the factor that most affected the patient’s new life situation. Patients expressed feelings of fear, anguish, denial, lack of body change acceptance, and low self-esteem. However, evidence of positive feelings related to support networks and personal well-being also were described and encouraged fostering hope in relation to the new condition.2
Family. The presence of the family in the adaptive period is fundamental to the patient; family members help with explanations, dialogue, advice, and, most importantly, convey comfort and safety and provide ways to accept being a person with a stoma.24
A helpful professional. Another important aspect of adaption is the role of the healthcare professional in assisting the person with an ostomy from presurgery to hospital discharge to family and community environments.3 Thus, it seems necessary for nonspecialist nurses caring for persons with an ostomy to provide educational activities using pedagogical resources, interactive dynamics, and practical examples during various encounters with patients to motivate them to attend the appointments and facilitate the exchange of experiences. Information provided by healthcare professionals can assist in the adaption process.17
The review findings suggest it is imperative to take action in academic settings to reinforce theoretical foundations and update nursing student knowledge to better appreciate the experiences of those for whom they care. It is also important to encourage students to develop affective skills so they are prepared and responsible professionals, ready to assist the person with a stoma, as well as to actively participate in education and research.29
An integrative literature review was conducted to analyze scientific publications addressing the adaption of the person to a stoma. The studies assessed in this review describe the need for and methods to help the person with an ostomy redefine his/her identity, improve his/her life quality, and fully participate in society. The family was found to provide emotional and social support, bonding with the patient to cope with problems when facing this new situation.
Nurses and other healthcare team members who engage in the care of persons with an ostomy should expand their knowledge and increase their understanding of the feelings that emerge during the ostomy adaption process, as well as the consequences and possible ways to help patients restructure their lives.
It is very important to provide individualized assistance that takes into consideration the patient’s attitudes, family knowledge base, and ability to learn and become comfortable manipulating the stoma and the collection device, strengthening the patient’s determination to prevail over the changes in ostomy management he/she will face throughout life.
Therefore, nursing students must be empowered to provide thoughtful care and share knowledge in order to achieve caring excellence. It is imperative that curriculums include education specific to assistance procedures. Developing educational interventions that allow students to apply this theory is also important.
Ms. Torquato Lopes is a Masters degree candidate and Dr. Decesaro is a professor, Post-Graduate Program in Nursing, State University of Maringa, Parana, Brazil. Please address correspondence to: Ana Patricia A. Torquato Lopes, MSc, 724, Avenida Dr. Mario Clapier Urbinat – Zona 7, Apartment J02. Maringá, PR 87020-260, Brazil; email: firstname.lastname@example.org.
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