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Siew Hoon Lim, PhD(c), BSc (Nurs)(Honours), RN Sally Wai Chi Chan, PhD, RN Hong-Gu He, PhD, MD, RN
Patients’ Experiences of Performing Self-care of Stomas in the Initial Postoperative Period K E Y
W O R D S
Background: With the loss of an important bodily function and the distortion in body
Colorectal
image, a stoma patient experiences physical, psychological, and social changes.
Experience
With limited current studies exploring experiences of patients in the management of
Postoperative
their stoma, there is a need to explore their experiences, their needs, and factors that
Self-care
influence their self-management. Objective: The aim of this study was to investigate
Stoma
patients’ experiences of performing self-care of stomas in the initial postoperative period. Methods: This study adopted a descriptive qualitative approach from the interpretive paradigm. Semistructured interviews were conducted with 12 patients 1 month postoperatively in a colorectal ward in a hospital in Singapore. Thematic analysis was applied to the interview data. Results: Five themes were identified: process of acceptance and self-management of stoma, physical limitations, psychological reactions, social support, and need for timely and sufficient stoma preparation and education. Conclusions: This study highlights the importance of health professionals’ role in helping patients adjust preoperatively and postoperatively and accept the presence of a stoma. Health professionals need to be aware of the physical, psychological, and social impact of stoma on patients in the initial 30-day postoperative period. Implications for Practice: Research findings informed the type and level of assistance and support to be offered to patients by nurses and the importance of encouraging patients to be involved in stoma care at an early stage, which will ultimately contribute to effective and independent self-management. Patients can be prepared preoperatively to reduce the psychological and social impact of stoma after creation of their stoma.
Author Affiliations: Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore (Ms Lim and Drs Chan and He); and Division of Nursing, Singapore General Hospital (Ms Lim). The authors have no funding or conflicts of interest to disclose.
Experiences of Self-Care of Stomas
Correspondence: Hong-Gu He, PhD, MD, RN, Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Level 2, Clinical Research Centre, Block MD11, 10 Medical Drive, Singapore 117597 ([email protected]). Accepted for publication March 8, 2014. DOI: 10.1097/NCC.0000000000000158
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C
olorectal cancer is 1 of the top 3 leading causes of cancerrelated deaths worldwide, with estimates of 1 023 256 newly diagnosed cancer cases and 529 020 deaths annually.1 According to the Singapore Cancer Registry, colorectal cancer was the most prevalent form of cancer in men and the second most prevalent form of cancer in women in Singapore between 2008 and 2012. Surgical formation of stoma is a common outcome in the process of treatment, which can be temporary or permanent. In Singapore, 1 in 10 patients undergoing colorectal surgery has a stoma formed. According to the statistics from the Singapore Cancer Registry, survival rates for colorectal cancers are increasing, with more people living long-term with a stoma. With the loss of an important bodily function and the distortion in body image, a stoma patient experiences physical, psychological, and social changes.2Y4 Without fail, all stoma patients have to adapt to major ongoing postoperative physical and psychological changes that have an impact on life.3,5,6 Patients with a stoma experience significant impact on physical, emotional, cognitive, and social functioning, which may contribute negatively to their quality of life,7Y9 especially during the preoperative and postoperative period.10 Quality of life in most patients has been found to decline in the first month postoperatively and starts to improve only from 6 months onward.7
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Literature Review
Many studies have revealed how patients’ lives are affected by their stoma in various ways, including changes to their quality of life, body image, sexuality, psychology, and social life, requiring coping and practical adjustments.8Y10 For example, Nugent and colleagues11 investigated the impact of stoma on patients’ lifestyle in the United Kingdom. They found that more than 35% of participants reported a need to change job and 10% of them had serious issues with diet and clothing. Impotence was a major problem, which affected the sexual lives of 43% and 45% of the patients with colostomy and ileostomy, respectively11 Psychosocial reactions to a colostomy and perceived lifestyle changes secondary to living with a stoma were examined in 60 Chilean patients with permanent colostomies8; these participants reported low satisfaction with their body image. Some participants reported receiving minimal social support from family and friends in the process of adaption. More than 50% of participants reported marital issues. Psychosocial factors affecting adjustment included satisfaction with body image, perceived social support, and impact on social life, work, and family that the participants attributed to their stoma. Interpretive phenomenological analysis was used to explore the meaning of having a stoma and how it affected Swedish women’s life situation.10 Three findings were derived from this study: (a) ‘‘Bodily restraints’’ describe how women experienced their stomas, bodies, and the limitations posed by their stomas in various activities; (b) ‘‘I as a woman’’ revealed the experiences of women and their experiences of having stomas in terms of being a woman and the various roles that accompany womanhood; and (c) ‘‘Adaptation to daily life’’ showed the different management strategies that these women
used to manage daily life with a stoma. Notter and Chalmers3 conducted a study in the United Kingdom, implementing a postal survey to explore issues having an impact on quality of life of 369 patients living with a permanent colostomy. Almost 30% of respondents reported complications that required further admissions, and some needed further surgery. Restrictions on activities of daily living and social activities were issues encountered by 40% of the participants; 50% reported issues of leakage and 33% of them found disposal of stoma problematic. The above studies highlighted the various ways a stoma has affected patients internationally. Studies have shown that patients with colorectal cancer have low levels of acceptance of the chronic condition of stomas.12,13 Poor acceptance of a stoma can potentially lead to poor physical and psychological adaptations, affecting time to stoma proficiency postoperatively and length of hospital stay.13,14 Self-efficacy in stoma care is an important factor in patients’ acceptance of stoma and quality of life among patients with colorectal cancer.13,15,16 Self-care is defined as the ability of an individual to care for himself/herself and to carry out activities essential to achieve, maintain, or promote maximal health.17 Self-management is the ability of an individual, together with his/her family, community, and health professionals, to manage illness symptoms, treatment processes, lifestyle adjustments, and psychosocial, cultural, and spiritual impacts of health conditions. It is important to promote stoma self-care and self-management during the psychological adaptation process.18 A literature review was conducted to explore common psychosocial interventions for colorectal patients that can improve their outcomes, including length of hospital stay, days to stoma proficiency, hospital anxiety and depression, and quality of life.19 The common psychosocial interventions include educational interventions, cognitive-behavioral therapy, relaxation training, and supportive expressive group therapy. Home visits, telephone contact, individual teaching, and group therapy are common components of the psychosocial interventional programs. Only 2 studies carried out interventions preoperatively,14,20 and in these, preoperative verbal and written information was given to the patients, together with a demonstration during the home visits. At the same time, teaching materials including DVDs and information booklets were given preoperatively to the patients. Self-efficacy and stoma management skills may be improved by learning these knowledge and skills in both preoperative and postoperative periods. Williams21 highlighted the different stoma care skills to be developed in patients during the preoperative and postoperative period. Studies revealed that patients were most receptive to information during the period between learning the need for stoma formation surgery and just before surgery.22 To date, there is a lack of research exploring patients’ experiences in the management of their stoma and factors that influence their self-management, especially in Asian countries. It is essential to tailor an individualized teaching plan for each patient according to his/her needs.23 With comprehensive information on the different factors that influence the self-management of patients with a stoma, healthcare professionals can design appropriate psychosocial interventions to help empower patients to assist them in better management of their stoma.
186 n Cancer NursingTM, Vol. 38, No. 3, 2015 Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
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The purpose of this study was to investigate patients’ experiences in the care of their stoma during the initial postoperative period, namely, the first month after the creation of a stoma. The research question was ‘‘What are the experiences of patients in the care of their stoma during the initial 1-month postoperative period?’’
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Methods
Design A qualitative descriptive design was used as derived from the interpretive paradigm.8
Participants The inclusion criteria were patients who (a) had undergone elective colorectal resections, including both laparoscopic and open procedures, that resulted in the formation of a stoma and were hospitalized in the colorectal surgical ward in a tertiary hospital; (b) were able to read and speak either English or Mandarin; and (c) were 21 years or older. Convenience sampling was used to recruit 16 patients who were admitted for elective colorectal surgery and met the selection criteria, with the consent and assistance from the ward staff. Four patients were subsequently excluded: 3 withdrew, giving the reason of inconvenience, and 1 had postoperative complications leading to delayed stoma proficiency for a month. The final sample size of 12 participants allowed the study to reach data saturation. Seven participants were men and 5 were women, aged 40 to 72 years.
Ethical Considerations Ethical approval was obtained from the institutional review board of the participating hospital. The principal investigator (PI) of the study contacted the director of nursing of the hospital, and with her approval, the nurse managers and nurse clinicians of the colorectal ward were approached for their approval and cooperation to access their patients. Before the study was conducted, participants were informed (both verbally and in writing) about the purpose of the study, and written informed consent was obtained. All participants were recruited on a voluntary basis. They were assured that their refusal to participate would not affect the care they would receive from the hospital. Permission to audiotape the interview session was also sought from each participant; confidentiality and anonymity were guaranteed.
Data Collection This study was undertaken in the inpatient wards. Data were collected by the PI from September to December 2012. The patient information form, the Demographic and Operative Information Summary, was used to collect patients’ demographic details, including age, gender, marital status, ethnicity, education, employment status, medical history, types of stoma, and types of
Experiences of Self-Care of Stomas
operations (Table 1). Data were collected using semistructured interviews with the help of an interview guide. The interview guide was developed after an extensive review of relevant literature on patients’ experience in management and care of their stoma during hospitalization. The questions were broad, open ended, and general (Table 2). The opinion of a qualitative researcher with interest in colorectal nursing was sought on the appropriateness, completeness, and applicability of the questions in the interview guide. Following the researcher’s feedback, the questions in the interview guide were amended. Eligible patients were identified and approached on the day of discharge from hospitalization. Patients who were interested in the study and had provided written consent were interviewed when they came back for their follow-up appointment with their appointed physicians, which was usually about 3 weeks upon discharge. This timing allowed participants to have sufficient time to acquire some experience of stoma care and to resume their routine activities. To reduce the potential response bias, all participants, except for 1 female participant, were not under direct care of the PI. The interviews were arranged at a location convenient to the participants. All interviews were conducted in either English or Mandarin by the PI and were tape recorded to enhance the accuracy of the data. Ten participants chose to be interviewed at
Table 1 & Demographic and Health Characteristics of Sample Study (n = 12)
Demographic and Health Characteristics Age Mean (SD) Range (minimum-maximum) Gender Male Female Marital status Married Single Education, y Mean (SD) Range (minimum-maximum) Employment status Employed Retired Medical conditions Yes No Caregiver Spouse Own Types of stoma Ileostomy Colostomy Types of operation Anterior resection Hartmann procedure Trephine loop transverse colostomy
n (%) 58.2 (9) 40Y72 7 (58) 5 (42) 11 (91) 1 (9) 7.6 (2.5) 6Y13 5 (42) 7 (58) 9 (75) 3 (25) 11(91) 1 (9) 6 (50) 6 (50) 7 (58) 2 (17) 3 (25)
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Table 2 & Interview Guide No. 1. 2. 3. 4.
Possible Questions to Guide the Participants How do you feel about the stoma education provided in the hospital? As a patient with stoma, what does it mean when caring for your own stoma? What have been your biggest issues/concerns with your stoma and how did you cope with them? What would you need to help you better care for your stoma?
their house and the other 2 were interviewed in an unoccupied room at the colorectal unit of the participating hospital. The interviews lasted for 15 to 60 minutes. Field notes were also taken to enrich and clarify the interview data. Data collection stopped after 12 patients had been interviewed, the point when inclusion of new participants no longer provided any new information but rather confirmed the previously collected data, indicating a saturation of data is reached.24
occur throughout the analytic process. It is essential for the analytic process to be audited to enhance dependability. After coding by the PI, the entire set of transcribed interviews and findings were validated by 1 Co-I. Conducting this inquiry audit demonstrated that another researcher was able to follow the decision trail used by the PI. The Co-I was able to derive comparable conclusions, maintaining accuracy of data. All entries were properly documented. Lincoln and Guba26 claimed that transferability was achieved through a high degree of similarity between 2 contexts. The PI attempted to provide sufficient information related to the Singaporean context while highlighting similar contextual information to increase the level of transferability. According to Lincoln and Guba,27 confirmability is an inquiry audit process that shows how the interpretation of data took place and how the interpretations were achieved; this criterion is established when credibility, transferability, and dependability are achieved in a study. A clear and adequate ‘‘decision trail’’ was marked out in this study to achieve confirmability. The PI and Co-I attempted to provide audit trail linkages to explain clearly regarding the decisions made about the theoretical, methodological, and analytic choices throughout the study.
Data Analysis The interviews conducted in Mandarin were transcribed verbatim into Chinese and then translated into English directly by the PI. The translated data were reviewed independently by a coinvestigator (Co-I) who was fluent in Mandarin to ensure accuracy of the translation. No discrepancies were found by the PI and Co-I regarding the translated versions of the interviews. The translated version of transcripts was followed by yet another review by the other bilingual Co-I to achieve the most accurate translated data. The interview data in English were transcribed verbatim by the PI. Expressions, such as exclamations, laughter, and expletives, were included in the text and separated from the verbal text with square brackets, whereas pauses were indicated using dashes.25 All transcripts were checked against the audio-taped data for accuracy by the PI and the Co-I, thus preserving the original meaning and intent of the data. The transcripts were read several times by the PI and 2 Co-Is while the audiotapes were playing, to pick up any subtle distinctions in expression, responses, and tone of voice that might not have been easily detected in the transcripts. The transcribed data were analyzed using thematic analysis, a technique that relies on the interpretation of descriptive data to explicate the significant meanings of the participants’ experiences.25
Rigor The criteria for establishing the rigor of qualitative data outlined by Lincoln and Guba26 were applied: credibility, dependability, transferability, and confirmability. Credibility can be enhanced through the description and interpretation of experiences by researchers. During the interview, the PI attempted to restate or summarize information and then question the participants to determine and improve accuracy. The PI attempted to increase selfawareness by keeping a field note to record content and process of interactions with participants, enabling constant reflection to
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Results
Five themes emerged from the analysis: (1) process of acceptance and self-management of stoma, (2) physical limitations, (3) psychological reactions, (4) social support, and (5) need for timely and sufficient stoma preparation and education.
Theme 1: Process of Acceptance and Self-management of Stoma In the process of undergoing the stoma surgical procedure and its recovery, patients verbalized feelings of unpreparedness rlated to limited knowledge of stomas. As a result, they were not ready to assume stoma self-care upon discharge or to cope emotionally with stoma-related issues especially during the first few weeks. SUBTHEME 1: UNEXPECTEDNESS
Many patients felt that the information provided before the operation was deemed insufficient. They would prefer to have more information on stoma, including how a stoma looks, the different stoma bags, as well as the care of stoma, before they went for the operation. They reported believing that they would be better prepared physically and mentally and know what to expect had they had more knowledge before the operation. Instead, they were overwhelmed when information on stoma and stoma care was provided after the operation. I was actually knocked down by so many bags, and pain, and with all the drugs and everything, I don’t have the time to analyze which is the best. So I can only use what I know bestVmost expensive means good (laughed)V because at that point of time, your mental thinking is not there, your method of reasoning, analyzing, and thinking is not there. You are suffering from the major operation,
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pain, the wound bag, urine bag, stoma bag, the dripsI. And you are on drugs and injections, antibiotics. I think that is a good timing. The education should come in earlier, so when you go into the real situation, you can better make the decisionI (Patient 9)
mobility will slow down; your efficiency will drop. When you go out to the public place for dinner like restaurants, it is difficult to find a toilet with tap where you can do the draining. [Furthermore], the bag gets filled up very frequently; so we have to avoid going for buffets or lunch appointments. (Patient 9)
SUBTHEME 2: UNPREPAREDNESS FOR STOMA SELF-CARE AFTER DISCHARGE
SUBTHEME 2: PERSONAL HYGIENE
Some patients considered that the problems and concerns about their stoma started only after they were discharged from the hospital because nurses were always available to provide prompt assistance when the patients are in the hospital.
Some patients were uncomfortable when handling their stoma during the initial postoperative period. They have to adjust to seeing the feces in their stoma bags at close proximity, as well as the smell during cleaning.
In (the) hospital, I did not have such issues. Only when I (was) discharged then everything [all problems related to stoma] came. (Patient 8)
SUBTHEME 3: COPING ISSUES WITH A STOMA
I always feel that the bag has a type of smell. They say it’s not because I didn’t clean it properly, it is the natural smell of the bagI. Initially, I will keep thinking about itII was afraid that others are able to smell it, but it is actually not the stool smell. At the beginning, I am not used to the smell of the bag. When my relatives come, I will ask if they can smell it, they say they did not smell it. It seems like only I have been smelling, then I don’t feel comfortable. (Patient 4)
Patients said that they took approximately 2 to 4 weeks to adjust and adapt to the stoma after they returned home. It took some time for them to get used to the appearance of the stoma, as well as caring for the stoma. After the adjustment period, they returned to their activities of daily living and work if they were employed before the operation.
The feces are coming out from the stomaIthen there was this leaking problem: the whole thing leaking and it made a mess. At the beginning, I wanted to pour the feces into the toilet bowl but instead I poured it on the floor accidentally. So it was quite a messy experience. (Patient 9)
Iduring the 2 to 3 weeks (after discharge), we have a lot of questions which only come up when we start to do [stoma care on our own], questions that we need to ask. (Patient 9)
I went to work about 1 month after discharge. I took about 3 to 4 weeks to adapt to the stoma. With this stoma bag, I can’t really bend down, so when something drop on the floor, I just use my toes to pick them upI(laugh out loud)I. Then I can’t really carry heavy thingsI (Patient 8)
Theme 2: Physical Limitations Many patients highlighted the physical limitations of stoma on their activities of daily living, personal hygiene, and even their sleep quality.
SUBTHEME 3: POOR SLEEP QUALITY
Many patients revealed that they were not able to sleep properly. They had to wake up several times nightly to drain the stoma bag as they were worried that the bag would be too full and start leaking. Some felt restricted while asleep as they were afraid of changing sleeping position. This is really troublesome. It is troublesome when sleeping as well. Sometimes, at night, while sleeping, I have to wake up 3 to 4 times. I don’t get sufficient sleep. At night, you have to wash it clean, then sleep, then it will still come out, and gets full after a while. (Patient 3)
SUBTHEME 1: ACTIVITIES OF DAILY LIVING
Patients emphasized the impact of having a stoma on their activities of daily living, including basic movement, showering, daily household chores, marketing, working, and exercising. They felt very restricted by the stoma and were not able to continue their usual activities of daily living. It means to me that, physically, I’m immobilized. In a way, I cannot do running; I cannot do swimming; I cannot do cyclingVwhich is part of my daily routine. My work is also affected: I cannot move about that smoothly; I cannot climbI. My movement: I cannot squat down or walk faster. Then when I drive, I have to put the seat belt under the stomaI. The seat belt is very near to the stoma, I cannot go over it, I have to go under it. It becomes a problem and sometimes I never wear it [the seat belt]; so I have to drive slower. Your
Experiences of Self-Care of Stomas
Theme 3: Psychological Reactions Patients were overwhelmed and feeling frustrated and helpless because of their stoma during the initial postoperative period. However, they were afraid of expressing these feelings to their family members because of fear of being a burden to them. SUBTHEME 1: FRUSTRATIONS
Many patients expressed their frustrations over the presence of a stoma. The inconvenience and discomfort that resulted from the stoma, including the process of caring for the stoma, affected the patients in many ways. Why, at this age, I have to do this operation to create this stoma (tearing)Ithis stoma made me so busy these Cancer NursingTM, Vol. 38, No. 3, 2015
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few months until I am so frustratedI. Sometimes, I will really throw tantrums. Without this stoma, I [could] go anywhere I [wanted]. Now with this stoma, I do not feel like going anywhere. I will scold my husband, saying, ‘‘You all ask me to go for the operation, now with this stoma, it cause me to be so frustrated.’’ IWith this, whatever I do is not convenientI. When shopping outside, it is [simply] troublesome. When there [are] many people, [having a stoma is] also embarrassing; [having] no water to wash [up is] also very troublesomeI. Worrying about this and that. In this way, isn’t staying home better and not go out? (Patient 2) (Shaking head) IIt really makes you frustratedI. You go out to walk for a while, drink a cup of coffee, it will just come out. It will just produce the coffee smellI. There is no way to conquer this. There is no control over thisI (Patient 3) SUBTHEME 2: HELPLESSNESS
Patients felt a sense of helplessness when they mentioned their experiences of having the stoma created. They understood there was no other choice and they had to undergo the operation to create the stoma; nevertheless, they felt that they had no control over their lives. We [needed] to be operated in the hospital; there [was] no choiceI. There is no choiceI. Then the doctor had to create the stoma for you. Because the tumor is big, then the stool is impactedVthere are all sorts of problem. The doctor also told me there [was] no choice; that was why the stoma was createdI. But I do not have any family; I just take care of myselfI. At that time, I was thinking why [had] to create this stoma. (Patient 1) SUBTHEME 3: AFRAID OF BEING A BURDEN TO FAMILY
Some patients were afraid to open up to their family members as they feared that they were a burden to them. They were apprehensive in confiding to their spouse and children, thus keeping everything to themselves. Just sometimes, I will tell my husband. I am afraid that my children will be worried, so I do not tell them much. They have to go out and work, then if they have to worried about me, they might not have the mood to work, so I did not tell my children (tearing). Most of the time, I am only thinking about it myselfI. Sometimes, I just feel that after they [family] listened, it is not that they are irritatedVjust a little uncomfortable. So I don’t talk about it every time I feel a little terrible; I don’t say [how I feel] every time. Only at times then I will talk about it. I didVsometimes I will talk to my husband. At night, sometimes I will feel troubledVI don’t sleep that comfortablyVbut I don’t dare to tell him too much; or else, after listening, he will not feel very comfortableIafter my husband hears about such things, he is more scared. I feel that he is more nervous than me. That time, after the operationIwhen I saw [my family] standing there, they seemed to be so afraid, so I don’t really tell them much. (Patient 4)
SUBTHEME 4: OTHER NEGATIVE FEELINGS
During the initial postoperative period, patients experienced a range of feelings. They were traumatized and fearful at the sight of the stoma. Some felt nervous and were worried about caring for the stoma; some were even afraid that they were doing it wrong. These negative feelings were experienced more frequently during the first 2 to 3 weeks after the operation. I just feel a little sad thinking of it. Thinking of the stoma made me sad. We are one whole person, why they have to create the stoma for us? (Patient 1) I am afraid of inflammation, skin tearII was afraid that I do not how to cut [the stoma bag]. After [the operation, I] still [managed] to learn [to do so]. [I] have to care for the skin and [I] need to be very cleanI. Initially, I was scared when I [saw] it; after that, the stoma got smaller. (Patient 7)
Theme 4: Social Support Patients highlighted the importance of the physical support given to them during the initial process of learning to care for the stoma as a form of social support. Support from spouses and children was essential in helping them manage their stoma. Their spouses and children made time to learn about stoma care in the hospital. After being discharged from hospital, they assisted the patients in managing the stoma at home, which included draining and changing the stoma bag. My husband helps me to change it, once every 4 dayI it is very difficult to change [the stoma bag on] while standing, [because] the skin at the side will be uncomfortable as it is very tightI (Patient 7) At first, my daughter [drained the stoma bag] for me in the morning and my wife [drained it] for me in the evening when I [came] home from the hospital. After that, I had to do [the draining] myself. Doing this is a task. I can’t change the stoma bag myself because I have to lie down. So my wife does the changing for me. (Patient 10)
Theme 5: Need for Timely and Sufficient Stoma Preparation and Education Patients expressed inadequate education received from the healthcare professionals, leading to insufficient preparation for their stoma. Some recommendations for improvement were made. SUBTHEME 1: INSUFFICIENT EDUCATION RECEIVED
Some patients mentioned that education provided by the hospital was limited. The education provided by the hospital is quite limitedI. I don’t think during this 5 days you can learn a lotI. It is more of a self-discovery. How is more effective [in carrying out stoma care], and to analyze when is the feces coming out? I also observe the time how long
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the feces come out after the food and how long to stay in the toilet, instead of going in and out of the toilet a few times. (Patient 9) Because [the nurse] did not tell us these things, we did not ask her. We also do not understandI. Because over [at the hospital during the postoperative hospitalization], we did not change it, so we [did] not know, [did] not understand the situation. We [discovered], it cannot be like this, it cannot be like that. We absorb [information] slower, whether it is possible to come [into] contact with water, we also [didn’t] know. They also did not tell us not to change after we have eaten; we only [knew] this after that [after discharge from hospitalization]I (Patient 12) SUBTHEME 2: RECOMMENDATIONS ON FUTURE EDUCATION
The patients expressed that it would be useful to receive educational booklets, which they could refer to after discharge. They also recommended that a follow-up in the form of a telephone call or a teaching session after discharge would be useful for adjusting to the stoma. The only way is that if [the health professionals] can compile [the information on stoma care] into a booklet. Alternatively, everybody should have Internet and e-mail, [or information available in] spoken language for those who are not educated, and they can view in the visual manner just like the TV, so they can go to the Web [to seek information] on how to change the stoma bag. I think that will be more effective, because after seeing [a demonstration at the hospital], you will forget; so you can refer to it. I think the weekly calls after we come home will be good. If we were to have a weekly call during the first 2 weeksIthen it would be good. It’s more like a follow-up until the patient and caregiver get used to [managing the stoma]. The booklet is more of a manual, with step-by-step instructions on how to change [the stoma bag], with lots of pictures and few wordings. (Patient 9)
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Discussion
This study aimed to explore the experiences of patients’ management of their stoma during the first postoperative month. The findings explored the process of patients’ acceptance and selfmanagement of stoma during this period. The study found that having a stoma had both physical and psychological impacts on the patients. The patients also emphasized the importance of social support from family members in helping them to accept and adjust to life with a stoma. The patients expressed their need for timely and sufficient stoma preparation and education. Our participants felt that they did not receive sufficient information preoperatively, resulting in their entering a state of ‘‘shock’’ after the operation. Their shock revolved around the physical appearance of stoma and learning to care for the stoma in the hospital. It has always been a challenge for patients to accept their stoma postoperatively.13 Acceptance of stoma is strongly associated with a patient’s adjustments to having a stoma, as well as stoma self-efficacy. Previous studies have shown that
Experiences of Self-Care of Stomas
patients who adapt better to their chronic diseases are those who accept their diagnosis.28 Our participants considered that they would be better prepared psychologically and mentally if they had known exactly what to expect, and this, they thought, could be helped by being provided with sufficient knowledge preoperatively. Many considered that issues with caring for stoma arose mainly after returning home from the hospital, indicating that they were not well prepared for stoma self-care before they were discharged. Patients reflected that they had depended solely on the nurses in managing their stoma during the immediate postoperative hospitalization and had received considerable amount of assistance in the aspects of stoma care. The lack of hands-on practice resulted in the difficulties they experienced in trying to manage their stomas on their own when they returned home, a scenario that has not changed for decades.29 It is necessary to achieve a balance between nurses’ assistance and patients’ independence in self-care. During the psychological adaptation process, it is essential to emphasize self-care in stoma management, beginning preoperatively, to prepare patients better for self-care after being discharged from the hospital.18,30 This is consistent with the report by Burch,6 which highlighted the importance of nurses’ role in the preoperative period. Patients need to be given support to assist them to accept changes that the formation of stoma will have on their bodies and lives.6 Patients considered that they needed approximately 2 to 4 weeks to adjust to their stoma after they returned home. It is critical for assistance to be provided during this period to aid patients in the process of adaptation. The most prominent impact of having a stoma was on the patients’ activities of daily living. They felt restricted in continuing their usual activities, including carrying out basic movements, showering, performing daily household chores, working, and exercising. Patients’ ability to resume normal activities is 1 of the key yardsticks for measuring their quality of life.3 Reduction in previously enjoyed activities is reported as 1 of the top difficulties experienced by patients with stoma.27 Our participants reported reduction in daily activities because of fear of leakage of the stoma and concerns over the pouch overfilling, which was consistent with previous findings.19 Emptying and disposing used pouches in public toilets were the other major concerns, which discouraged patients from resuming their social activities. Instead of finding solutions to adjust to the stoma, most of the patients interviewed in this study chose to avoid possible problematic situations and reduce their social activities. Previous findings have shown that there is a close relationship between the individual’s ability to perform cognitive and social tasks and his/her confidence level to resume normal work and social activities.31 Patients felt that having a stoma had an impact on their personal hygiene. They reported that they were uncomfortable handling their stoma during initial postoperative period, as they were not used to seeing the feces coming out from the stoma so closely, as well as to the odor. Consistent with other studies,32 poor sleep quality has also been reported by our participants, who were mainly concerned with leakage of stoma and overfilling of the pouch, with some facing restrictions in changing of sleep positions. It will be beneficial to provide appropriate advice and support perioperatively to assist patients to cope with their concerns Cancer NursingTM, Vol. 38, No. 3, 2015
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regarding personal hygiene and sleeping problems and find a stoma appliance that they feel confident to use.3 Patients faced many psychological issues during the initial postoperative period. These include frustrations due to having a stoma, feeling of helplessness, and negative feelings toward having a stoma. Many patients emphasized the inconvenience and discomfort resulting from the stoma and the process of caring for it. Some considered that they had no control over their lives as a result of having a stoma. During the first 2 to 3 weeks, many of our participants experienced a variety of negative feelings, ranging from trauma and fear of seeing the stoma to fear and anxiety about caring for the stoma. These psychological experiences are consistent with other studies exploring psychological dysfunction in patients who had undergone surgeries for stoma formation.13 The persistence of unresolved psychological issues without appropriate intervention can lead to depression, loneliness, suicidal thoughts, and low self-esteem.33 This emphasizes the importance of the role of nurses in providing support and addressing concerns of patients during both the preoperative and postoperative periods. It is essential for health professionals to tailor their care of individuals with stomas to incorporate individually expressed needs and desire for control. A feeling of stability in the daily lives of patients with stoma is a key indicator of good quality of life. To enable patients with stomas to have a sense of stability, it is necessary to ensure the availability of an accessible outpatient support system that includes stoma nursing care, regular hospital and stoma clinic visits, and consistent support from nurses, doctors, family, and friends through various channels including online support. Some patients felt that their stoma nurse specialists did not have sufficient time to provide them with education and support. Some patients reported apprehension in confiding to their spouses and children, as they feared that they would become a burden to them. None of the patients mentioned that they attempted to seek comfort and reassurance from their family members. Discussing about stressful life events in a supportive environment is an essential component of successful coping, and it aids individuals in making sense of their experiences.34 It also promotes positive adjustment behavior in patients.35 Ability to share one’s emotions and thoughts about stressful events is associated with psychological well-being and social functioning.36 Previous findings revealed that patients were most likely to discuss about health-related issues with their primary sources of support, including family, friends, and health professionals.36 There are circumstances when some patients lack the capacity to mobilize the support available to them and became obsessed with pessimistic thoughts about the illness, which can restrict access to sources of both informational and emotional support.34 Patients who find it difficult to engage with their family and friends have been found to adjust poorer to their stoma.13 Our participants also highlighted the physical support provided by their family members. Their spouses and children were present in the hospital to learn about the stoma care together with them and provided assistance to them in managing the stoma at home. Family members and other available supports are vital to an individual’s adaptation to life with a stoma.13 Some patients mentioned that the education on stoma care provided by the
hospital was limited, with insufficient contact time with the stoma nurse specialist. Patients considered that they had problems in managing their stoma after being discharged from the hospital and that they had to find answers to questions and issues on their own. According to Ito and Kazuma,37 the accessibility of stoma clinics can reassure patients and reduce their worry over stoma issues. This is particularly important in promoting acceptance of stoma in patients and in facilitating faster recovery. The availability of periodic stoma care and support from nurses upon discharge serves to reassure patients.37 In addition, the patients also recommended the provision of an educational booklet or video or specific Internet information for reference, as well as a follow-up session after they are discharged from the hospital. The follow-up session could be a telephone session or teaching session. The limited numbers of stoma nurse specialists and short hospital stays have made it a challenge for patients to receive adequate counseling and acquire adequate stoma management skills. It will be useful for patients to receive a program that entails sufficient preoperative and postoperative coverage, with the aid of an educational booklet and/or video, a preoperative and postoperative teaching session, as well as postoperative follow-up sessions.
Implications for Nursing Practice The findings of the study provide some evidence for health professionals to improve the services currently available to patients with stomas in the hospital setting. Our findings highlight the type and level of support that nurses could offer to patients to manage their stomas, and nurses should involve patients earlier in the process of stoma management, which will contribute to timely, effective, and independent self-management. Health professionals may prepare patients preoperatively to reduce the negative psychosocial impact of stoma on patients. Involving family members in this process may increase the effectiveness of stoma care management. Increased effective communication between health professionals and patients is 1 way to improve the postoperative stoma management. Psychosocial interventions to assist patients in self-care and management of stoma may be developed, taking into considerations the factors demonstrated in this study, which influences patients’ self-management of stoma.
Study Limitations and Recommendations for Future Studies The study was conducted in 1 clinical setting; it is not possible to ascertain the degree of influence from the hospital’s culture and environment on the patients with stoma. Moreover, patients’ experiences may be influenced by the nurses they encounter in the hospital. In future studies, alternative data collection methods, such as observations, focus group discussions with patients, and interviews with nurses, can be used alongside data collected from patients to enhance the depth of data. In addition, background factors such as cultural values and attitudes unique to these patients were not examined in this study, and all participants were from a Chinese ethnic group, which limited the understanding of the cultural influence on patients’ experiences and the
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generalizability of the findings to patients of all ethnicities in Singapore. Future studies should address these gaps. Furthermore, health professionals should consider developing a psychosocial intervention program that includes an educational booklet, a preoperative interactive session, and postoperative follow-up sessions to ensure comprehensiveness and continuity of education and support to patients with stomas.
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Conclusions
The qualitative approach used in this study adds value to our understanding of the experiences of patients with stoma during the initial postoperative period. Our findings support previous findings that accepting life with stoma remains a challenge postoperatively. The study found that patients were not well prepared to manage their stomas during their hospitalization, which affected their competence in stoma care after being discharged from the hospital. The patients also reported experiencing physical and psychological challenges with the stoma formation and care, which informs health authorities of the need for health professionals, especially stoma nurse specialists, to improve existing programs on the preparation for and education in stoma management. ACKNOWLEDGMENTS
We thank Dr Sandra Mackey, School of Nursing and Midwifery, University of Western Sydney in Australia, for her guidance and support at the beginning of the study. We thank the director of nursing, Dr Tracy Carol Ayre, the nurse managers and nurse clinicians of the participating wards, Singapore General Hospital, for their support and cooperation to allow access to patients. We appreciate all participants for their great support.
References 1. Kamangar F, Dores GM, Andersen WF. Patterns of cancer incidence, mortality, and prevalence across five continents: defining priorities to reduce cancer disparities in different geographic regions of the world. Am J Clin Oncol. 2006; 24(14):2137Y2150. 2. Bekkers M, van Knippenberg E, van den Borne H, van Berge-Henegouwen G. Prospective evaluation of psychosocial adaptation to stoma surgery: the role of self-efficacy. Psychosom Med. 1996;58:183Y191. 3. Notter J, Chalmers F. Living with a colostomy: a pilot study. Gastrointest Nurs. 2012;10(6):16Y24. 4. Williams J. Stoma care: intimacy and body image issues. Pract Nurs. 2012; 23(2):91Y93. 5. White C. Psychological factors in postoperative adjustment to stoma surgery. Ann R Coll Surg Engl. 1997;79(1):3Y7. 6. Burch J. Care of patients with a stoma. Nurs Stand. 2013;27(32):49Y56. 7. Juul K, Prieto L. Quality of life with an intestinal stoma. Semin Colon Rectal Surg. 2008;19:167Y173. 8. Piwonka MA, Merino JM. A multidimensional modelling of predictors influencing the adjustment to a colostomy. J Wound Ostomy Continence Nurs. 1999;26:298Y305. 9. Nugent KP, Daniels P, Stewart B, Patankar R, Johnson CD. Quality of life in stoma patients. Dis Colon Rectum. 1999;4:1569Y1574.
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10. Honkala S, Bertero¨ C. Living with an ostomy: women’s long term experiences. Nord J Nurs Res Clin Stud. 2009;29(2):19Y22. 11. Nugent K, Daniels P, Stewart B, Patankar R, Johnson C. Quality of life in stoma patients. Dis Colon Rectum. 1999;42:1569Y1579. 12. Chao H, Tsai T, Livneh H, Lee H, Hsieh P. Patients with colorectal cancer: relationship between demographic and disease characteristics and acceptance of disability. J Adv Nurs. 2010;66(10):2278Y2286. 13. Simmons KL, Smith JA, Bobb K, Liles LLM. Adjustment to colostomy: stoma acceptance, stoma care self-efficacy and interpersonal relationships. J Adv Nurs. 2007;60(6):627Y635. 14. Chaudhri S, Brown L, Hassan I, Horgan AF. Preoperative intensive, community-based vs. traditional stoma education: a randomised, controlled trial. Dis Colon Rectum. 2005;48(3):504Y509. 15. Raingruber B. The Effectiveness of Psychosocial Interventions with Cancer Patients: An Integrative Review of the Literature. ISRN Nurs. 2011:1Y27. doi: 10.5402/2011/638218. 16. Wu HK, Chau JP, Twinn S. Self-efficacy and quality of life among stoma patients in Hong Kong. Cancer Nurs May/June. 2007;30(3):186Y193. 17. Richard AA, Shea K. Delineation of self-care and associated concepts. J Nurs Scholarsh. 2011;43(3):255Y264. 18. Martinez LA. Self-care for stoma surgery: mastering independent stoma self-care skills in an elderly woman. Nurs Sci Q. 2005;18(1):66Y69. 19. Lim SH, He H-G, Chan WC. Effect of psychosocial interventions on outcomes of patients with colorectal cancer: a review of the literature. Eur J Oncol Nurs. 2013;17(6):883Y891. 20. Bryan S, Dukes S. The Enhanced Recovery Programme for stoma patients: an audit. Br J Nurs. 2010;19(13):831Y834. 21. Williams J. Patient stoma care: educational theory in practice. Br J Nurs. 2012;21(13):786Y794. 22. Hampton B, Bryant R. Ostomies and Continent Urinary Diversions. St Louis, MO: Mosby; 1992. 23. O’Connor G. Teaching stoma-management skills: the importance of self-care. Br J Nurs. 2005;14(6):320Y324. 24. Gillies A, Jackson W. Research for Nurses: Methods and Interpretation. Philadelphia, PA: Davis Company; 2002. 25. Morse JM, Field PA, eds. Qualitative Research Methods for Health Professionals. 2nd ed. London, England: Sage Publications; 1995. 26. Lincoln YS, Guba EG. Naturalistic Inquiry. Newbury Park, CA: Sage Publications; 1985. 27. Richbourg L, Thorpe JM, Rapp CG. Difficulties experienced by the ostomate after hospital discharge. J Wound Ostomy Continence Nurs. 2007;34(1): 70Y79. 28. Abraido-Lanza A, Vasquez E, Echverria S. Religious and other forms of coping among Latinos with arthritis. J Couns Clin Psychol. 2004;72:91Y102. 29. Ewing G. The nursing preparation of stoma patients for self-care. J Adv Nurs. 1989;14(5):411Y420. 30. Orem D, Taylor S, McLaughlin K, eds. Nursing Concepts of Practice. 5th ed. St Louis, MO: Mosby-Year Book; 2001. 31. Boyles A. Patient outcomes and quality of life following stoma-forming surgery. Gastrointest Nurs. 2010;8(8):30Y35. 32. Vorbeck E. A descriptive, interventional study to assess the impact of surgical stomas on individuals’ sleep perceptions and response to sleep hygiene intervention. Ostomy/Wound Manage. 2010;56(1):36Y44. 33. Sprangers M, Taal B, Aaronson N, TeVelde A. Quality of life in colorectal cancer: stoma vs non-stoma patients. Dis Colon Rectum. 1995;35:361Y369. 34. Lepore S, Ragan JD, Jones S. Talking facilitates cognitive-emotional processes of adaptation to an acute stressor. J Pers Soc Psychol. 2000;78:499Y508. 35. Pennebaker J. Putting stress into words: health, linguistics and therapeutic implications. Behav Res Ther. 1993;31:539Y548. 36. Arora NK, Rutten FLJ, Gustafson DH, Moser R, Hawkins RP. Perceived helpfulness and impact of social support provided by family, friends and health care providers to women newly diagnosed with breast cancer. Psychooncology. 2007;16(8):474Y486. 37. Ito N, Kazuma K. Factors associated with the feeling of stability in the daily life among colostomy patients. Jpn J Nurs Sci. 2005;2:25Y31.
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Siew Hoon Lim, PhD(c), BSc (Nurs)(Honours), RN Sally Wai Chi Chan, PhD, RN Hong-Gu He, PhD, MD, RN
Patients’ Experiences of Performing Self-care of Stomas in the Initial Postoperative Period K E Y
W O R D S
Background: With the loss of an important bodily function and the distortion in body
Colorectal
image, a stoma patient experiences physical, psychological, and social changes.
Experience
With limited current studies exploring experiences of patients in the management of
Postoperative
their stoma, there is a need to explore their experiences, their needs, and factors that
Self-care
influence their self-management. Objective: The aim of this study was to investigate
Stoma
patients’ experiences of performing self-care of stomas in the initial postoperative period. Methods: This study adopted a descriptive qualitative approach from the interpretive paradigm. Semistructured interviews were conducted with 12 patients 1 month postoperatively in a colorectal ward in a hospital in Singapore. Thematic analysis was applied to the interview data. Results: Five themes were identified: process of acceptance and self-management of stoma, physical limitations, psychological reactions, social support, and need for timely and sufficient stoma preparation and education. Conclusions: This study highlights the importance of health professionals’ role in helping patients adjust preoperatively and postoperatively and accept the presence of a stoma. Health professionals need to be aware of the physical, psychological, and social impact of stoma on patients in the initial 30-day postoperative period. Implications for Practice: Research findings informed the type and level of assistance and support to be offered to patients by nurses and the importance of encouraging patients to be involved in stoma care at an early stage, which will ultimately contribute to effective and independent self-management. Patients can be prepared preoperatively to reduce the psychological and social impact of stoma after creation of their stoma.
Author Affiliations: Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore (Ms Lim and Drs Chan and He); and Division of Nursing, Singapore General Hospital (Ms Lim). The authors have no funding or conflicts of interest to disclose.
Experiences of Self-Care of Stomas
Correspondence: Hong-Gu He, PhD, MD, RN, Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Level 2, Clinical Research Centre, Block MD11, 10 Medical Drive, Singapore 117597 ([email protected]). Accepted for publication March 8, 2014. DOI: 10.1097/NCC.0000000000000158
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C
olorectal cancer is 1 of the top 3 leading causes of cancerrelated deaths worldwide, with estimates of 1 023 256 newly diagnosed cancer cases and 529 020 deaths annually.1 According to the Singapore Cancer Registry, colorectal cancer was the most prevalent form of cancer in men and the second most prevalent form of cancer in women in Singapore between 2008 and 2012. Surgical formation of stoma is a common outcome in the process of treatment, which can be temporary or permanent. In Singapore, 1 in 10 patients undergoing colorectal surgery has a stoma formed. According to the statistics from the Singapore Cancer Registry, survival rates for colorectal cancers are increasing, with more people living long-term with a stoma. With the loss of an important bodily function and the distortion in body image, a stoma patient experiences physical, psychological, and social changes.2Y4 Without fail, all stoma patients have to adapt to major ongoing postoperative physical and psychological changes that have an impact on life.3,5,6 Patients with a stoma experience significant impact on physical, emotional, cognitive, and social functioning, which may contribute negatively to their quality of life,7Y9 especially during the preoperative and postoperative period.10 Quality of life in most patients has been found to decline in the first month postoperatively and starts to improve only from 6 months onward.7
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Literature Review
Many studies have revealed how patients’ lives are affected by their stoma in various ways, including changes to their quality of life, body image, sexuality, psychology, and social life, requiring coping and practical adjustments.8Y10 For example, Nugent and colleagues11 investigated the impact of stoma on patients’ lifestyle in the United Kingdom. They found that more than 35% of participants reported a need to change job and 10% of them had serious issues with diet and clothing. Impotence was a major problem, which affected the sexual lives of 43% and 45% of the patients with colostomy and ileostomy, respectively11 Psychosocial reactions to a colostomy and perceived lifestyle changes secondary to living with a stoma were examined in 60 Chilean patients with permanent colostomies8; these participants reported low satisfaction with their body image. Some participants reported receiving minimal social support from family and friends in the process of adaption. More than 50% of participants reported marital issues. Psychosocial factors affecting adjustment included satisfaction with body image, perceived social support, and impact on social life, work, and family that the participants attributed to their stoma. Interpretive phenomenological analysis was used to explore the meaning of having a stoma and how it affected Swedish women’s life situation.10 Three findings were derived from this study: (a) ‘‘Bodily restraints’’ describe how women experienced their stomas, bodies, and the limitations posed by their stomas in various activities; (b) ‘‘I as a woman’’ revealed the experiences of women and their experiences of having stomas in terms of being a woman and the various roles that accompany womanhood; and (c) ‘‘Adaptation to daily life’’ showed the different management strategies that these women
used to manage daily life with a stoma. Notter and Chalmers3 conducted a study in the United Kingdom, implementing a postal survey to explore issues having an impact on quality of life of 369 patients living with a permanent colostomy. Almost 30% of respondents reported complications that required further admissions, and some needed further surgery. Restrictions on activities of daily living and social activities were issues encountered by 40% of the participants; 50% reported issues of leakage and 33% of them found disposal of stoma problematic. The above studies highlighted the various ways a stoma has affected patients internationally. Studies have shown that patients with colorectal cancer have low levels of acceptance of the chronic condition of stomas.12,13 Poor acceptance of a stoma can potentially lead to poor physical and psychological adaptations, affecting time to stoma proficiency postoperatively and length of hospital stay.13,14 Self-efficacy in stoma care is an important factor in patients’ acceptance of stoma and quality of life among patients with colorectal cancer.13,15,16 Self-care is defined as the ability of an individual to care for himself/herself and to carry out activities essential to achieve, maintain, or promote maximal health.17 Self-management is the ability of an individual, together with his/her family, community, and health professionals, to manage illness symptoms, treatment processes, lifestyle adjustments, and psychosocial, cultural, and spiritual impacts of health conditions. It is important to promote stoma self-care and self-management during the psychological adaptation process.18 A literature review was conducted to explore common psychosocial interventions for colorectal patients that can improve their outcomes, including length of hospital stay, days to stoma proficiency, hospital anxiety and depression, and quality of life.19 The common psychosocial interventions include educational interventions, cognitive-behavioral therapy, relaxation training, and supportive expressive group therapy. Home visits, telephone contact, individual teaching, and group therapy are common components of the psychosocial interventional programs. Only 2 studies carried out interventions preoperatively,14,20 and in these, preoperative verbal and written information was given to the patients, together with a demonstration during the home visits. At the same time, teaching materials including DVDs and information booklets were given preoperatively to the patients. Self-efficacy and stoma management skills may be improved by learning these knowledge and skills in both preoperative and postoperative periods. Williams21 highlighted the different stoma care skills to be developed in patients during the preoperative and postoperative period. Studies revealed that patients were most receptive to information during the period between learning the need for stoma formation surgery and just before surgery.22 To date, there is a lack of research exploring patients’ experiences in the management of their stoma and factors that influence their self-management, especially in Asian countries. It is essential to tailor an individualized teaching plan for each patient according to his/her needs.23 With comprehensive information on the different factors that influence the self-management of patients with a stoma, healthcare professionals can design appropriate psychosocial interventions to help empower patients to assist them in better management of their stoma.
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The purpose of this study was to investigate patients’ experiences in the care of their stoma during the initial postoperative period, namely, the first month after the creation of a stoma. The research question was ‘‘What are the experiences of patients in the care of their stoma during the initial 1-month postoperative period?’’
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Methods
Design A qualitative descriptive design was used as derived from the interpretive paradigm.8
Participants The inclusion criteria were patients who (a) had undergone elective colorectal resections, including both laparoscopic and open procedures, that resulted in the formation of a stoma and were hospitalized in the colorectal surgical ward in a tertiary hospital; (b) were able to read and speak either English or Mandarin; and (c) were 21 years or older. Convenience sampling was used to recruit 16 patients who were admitted for elective colorectal surgery and met the selection criteria, with the consent and assistance from the ward staff. Four patients were subsequently excluded: 3 withdrew, giving the reason of inconvenience, and 1 had postoperative complications leading to delayed stoma proficiency for a month. The final sample size of 12 participants allowed the study to reach data saturation. Seven participants were men and 5 were women, aged 40 to 72 years.
Ethical Considerations Ethical approval was obtained from the institutional review board of the participating hospital. The principal investigator (PI) of the study contacted the director of nursing of the hospital, and with her approval, the nurse managers and nurse clinicians of the colorectal ward were approached for their approval and cooperation to access their patients. Before the study was conducted, participants were informed (both verbally and in writing) about the purpose of the study, and written informed consent was obtained. All participants were recruited on a voluntary basis. They were assured that their refusal to participate would not affect the care they would receive from the hospital. Permission to audiotape the interview session was also sought from each participant; confidentiality and anonymity were guaranteed.
Data Collection This study was undertaken in the inpatient wards. Data were collected by the PI from September to December 2012. The patient information form, the Demographic and Operative Information Summary, was used to collect patients’ demographic details, including age, gender, marital status, ethnicity, education, employment status, medical history, types of stoma, and types of
Experiences of Self-Care of Stomas
operations (Table 1). Data were collected using semistructured interviews with the help of an interview guide. The interview guide was developed after an extensive review of relevant literature on patients’ experience in management and care of their stoma during hospitalization. The questions were broad, open ended, and general (Table 2). The opinion of a qualitative researcher with interest in colorectal nursing was sought on the appropriateness, completeness, and applicability of the questions in the interview guide. Following the researcher’s feedback, the questions in the interview guide were amended. Eligible patients were identified and approached on the day of discharge from hospitalization. Patients who were interested in the study and had provided written consent were interviewed when they came back for their follow-up appointment with their appointed physicians, which was usually about 3 weeks upon discharge. This timing allowed participants to have sufficient time to acquire some experience of stoma care and to resume their routine activities. To reduce the potential response bias, all participants, except for 1 female participant, were not under direct care of the PI. The interviews were arranged at a location convenient to the participants. All interviews were conducted in either English or Mandarin by the PI and were tape recorded to enhance the accuracy of the data. Ten participants chose to be interviewed at
Table 1 & Demographic and Health Characteristics of Sample Study (n = 12)
Demographic and Health Characteristics Age Mean (SD) Range (minimum-maximum) Gender Male Female Marital status Married Single Education, y Mean (SD) Range (minimum-maximum) Employment status Employed Retired Medical conditions Yes No Caregiver Spouse Own Types of stoma Ileostomy Colostomy Types of operation Anterior resection Hartmann procedure Trephine loop transverse colostomy
n (%) 58.2 (9) 40Y72 7 (58) 5 (42) 11 (91) 1 (9) 7.6 (2.5) 6Y13 5 (42) 7 (58) 9 (75) 3 (25) 11(91) 1 (9) 6 (50) 6 (50) 7 (58) 2 (17) 3 (25)
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Table 2 & Interview Guide No. 1. 2. 3. 4.
Possible Questions to Guide the Participants How do you feel about the stoma education provided in the hospital? As a patient with stoma, what does it mean when caring for your own stoma? What have been your biggest issues/concerns with your stoma and how did you cope with them? What would you need to help you better care for your stoma?
their house and the other 2 were interviewed in an unoccupied room at the colorectal unit of the participating hospital. The interviews lasted for 15 to 60 minutes. Field notes were also taken to enrich and clarify the interview data. Data collection stopped after 12 patients had been interviewed, the point when inclusion of new participants no longer provided any new information but rather confirmed the previously collected data, indicating a saturation of data is reached.24
occur throughout the analytic process. It is essential for the analytic process to be audited to enhance dependability. After coding by the PI, the entire set of transcribed interviews and findings were validated by 1 Co-I. Conducting this inquiry audit demonstrated that another researcher was able to follow the decision trail used by the PI. The Co-I was able to derive comparable conclusions, maintaining accuracy of data. All entries were properly documented. Lincoln and Guba26 claimed that transferability was achieved through a high degree of similarity between 2 contexts. The PI attempted to provide sufficient information related to the Singaporean context while highlighting similar contextual information to increase the level of transferability. According to Lincoln and Guba,27 confirmability is an inquiry audit process that shows how the interpretation of data took place and how the interpretations were achieved; this criterion is established when credibility, transferability, and dependability are achieved in a study. A clear and adequate ‘‘decision trail’’ was marked out in this study to achieve confirmability. The PI and Co-I attempted to provide audit trail linkages to explain clearly regarding the decisions made about the theoretical, methodological, and analytic choices throughout the study.
Data Analysis The interviews conducted in Mandarin were transcribed verbatim into Chinese and then translated into English directly by the PI. The translated data were reviewed independently by a coinvestigator (Co-I) who was fluent in Mandarin to ensure accuracy of the translation. No discrepancies were found by the PI and Co-I regarding the translated versions of the interviews. The translated version of transcripts was followed by yet another review by the other bilingual Co-I to achieve the most accurate translated data. The interview data in English were transcribed verbatim by the PI. Expressions, such as exclamations, laughter, and expletives, were included in the text and separated from the verbal text with square brackets, whereas pauses were indicated using dashes.25 All transcripts were checked against the audio-taped data for accuracy by the PI and the Co-I, thus preserving the original meaning and intent of the data. The transcripts were read several times by the PI and 2 Co-Is while the audiotapes were playing, to pick up any subtle distinctions in expression, responses, and tone of voice that might not have been easily detected in the transcripts. The transcribed data were analyzed using thematic analysis, a technique that relies on the interpretation of descriptive data to explicate the significant meanings of the participants’ experiences.25
Rigor The criteria for establishing the rigor of qualitative data outlined by Lincoln and Guba26 were applied: credibility, dependability, transferability, and confirmability. Credibility can be enhanced through the description and interpretation of experiences by researchers. During the interview, the PI attempted to restate or summarize information and then question the participants to determine and improve accuracy. The PI attempted to increase selfawareness by keeping a field note to record content and process of interactions with participants, enabling constant reflection to
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Results
Five themes emerged from the analysis: (1) process of acceptance and self-management of stoma, (2) physical limitations, (3) psychological reactions, (4) social support, and (5) need for timely and sufficient stoma preparation and education.
Theme 1: Process of Acceptance and Self-management of Stoma In the process of undergoing the stoma surgical procedure and its recovery, patients verbalized feelings of unpreparedness rlated to limited knowledge of stomas. As a result, they were not ready to assume stoma self-care upon discharge or to cope emotionally with stoma-related issues especially during the first few weeks. SUBTHEME 1: UNEXPECTEDNESS
Many patients felt that the information provided before the operation was deemed insufficient. They would prefer to have more information on stoma, including how a stoma looks, the different stoma bags, as well as the care of stoma, before they went for the operation. They reported believing that they would be better prepared physically and mentally and know what to expect had they had more knowledge before the operation. Instead, they were overwhelmed when information on stoma and stoma care was provided after the operation. I was actually knocked down by so many bags, and pain, and with all the drugs and everything, I don’t have the time to analyze which is the best. So I can only use what I know bestVmost expensive means good (laughed)V because at that point of time, your mental thinking is not there, your method of reasoning, analyzing, and thinking is not there. You are suffering from the major operation,
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pain, the wound bag, urine bag, stoma bag, the dripsI. And you are on drugs and injections, antibiotics. I think that is a good timing. The education should come in earlier, so when you go into the real situation, you can better make the decisionI (Patient 9)
mobility will slow down; your efficiency will drop. When you go out to the public place for dinner like restaurants, it is difficult to find a toilet with tap where you can do the draining. [Furthermore], the bag gets filled up very frequently; so we have to avoid going for buffets or lunch appointments. (Patient 9)
SUBTHEME 2: UNPREPAREDNESS FOR STOMA SELF-CARE AFTER DISCHARGE
SUBTHEME 2: PERSONAL HYGIENE
Some patients considered that the problems and concerns about their stoma started only after they were discharged from the hospital because nurses were always available to provide prompt assistance when the patients are in the hospital.
Some patients were uncomfortable when handling their stoma during the initial postoperative period. They have to adjust to seeing the feces in their stoma bags at close proximity, as well as the smell during cleaning.
In (the) hospital, I did not have such issues. Only when I (was) discharged then everything [all problems related to stoma] came. (Patient 8)
SUBTHEME 3: COPING ISSUES WITH A STOMA
I always feel that the bag has a type of smell. They say it’s not because I didn’t clean it properly, it is the natural smell of the bagI. Initially, I will keep thinking about itII was afraid that others are able to smell it, but it is actually not the stool smell. At the beginning, I am not used to the smell of the bag. When my relatives come, I will ask if they can smell it, they say they did not smell it. It seems like only I have been smelling, then I don’t feel comfortable. (Patient 4)
Patients said that they took approximately 2 to 4 weeks to adjust and adapt to the stoma after they returned home. It took some time for them to get used to the appearance of the stoma, as well as caring for the stoma. After the adjustment period, they returned to their activities of daily living and work if they were employed before the operation.
The feces are coming out from the stomaIthen there was this leaking problem: the whole thing leaking and it made a mess. At the beginning, I wanted to pour the feces into the toilet bowl but instead I poured it on the floor accidentally. So it was quite a messy experience. (Patient 9)
Iduring the 2 to 3 weeks (after discharge), we have a lot of questions which only come up when we start to do [stoma care on our own], questions that we need to ask. (Patient 9)
I went to work about 1 month after discharge. I took about 3 to 4 weeks to adapt to the stoma. With this stoma bag, I can’t really bend down, so when something drop on the floor, I just use my toes to pick them upI(laugh out loud)I. Then I can’t really carry heavy thingsI (Patient 8)
Theme 2: Physical Limitations Many patients highlighted the physical limitations of stoma on their activities of daily living, personal hygiene, and even their sleep quality.
SUBTHEME 3: POOR SLEEP QUALITY
Many patients revealed that they were not able to sleep properly. They had to wake up several times nightly to drain the stoma bag as they were worried that the bag would be too full and start leaking. Some felt restricted while asleep as they were afraid of changing sleeping position. This is really troublesome. It is troublesome when sleeping as well. Sometimes, at night, while sleeping, I have to wake up 3 to 4 times. I don’t get sufficient sleep. At night, you have to wash it clean, then sleep, then it will still come out, and gets full after a while. (Patient 3)
SUBTHEME 1: ACTIVITIES OF DAILY LIVING
Patients emphasized the impact of having a stoma on their activities of daily living, including basic movement, showering, daily household chores, marketing, working, and exercising. They felt very restricted by the stoma and were not able to continue their usual activities of daily living. It means to me that, physically, I’m immobilized. In a way, I cannot do running; I cannot do swimming; I cannot do cyclingVwhich is part of my daily routine. My work is also affected: I cannot move about that smoothly; I cannot climbI. My movement: I cannot squat down or walk faster. Then when I drive, I have to put the seat belt under the stomaI. The seat belt is very near to the stoma, I cannot go over it, I have to go under it. It becomes a problem and sometimes I never wear it [the seat belt]; so I have to drive slower. Your
Experiences of Self-Care of Stomas
Theme 3: Psychological Reactions Patients were overwhelmed and feeling frustrated and helpless because of their stoma during the initial postoperative period. However, they were afraid of expressing these feelings to their family members because of fear of being a burden to them. SUBTHEME 1: FRUSTRATIONS
Many patients expressed their frustrations over the presence of a stoma. The inconvenience and discomfort that resulted from the stoma, including the process of caring for the stoma, affected the patients in many ways. Why, at this age, I have to do this operation to create this stoma (tearing)Ithis stoma made me so busy these Cancer NursingTM, Vol. 38, No. 3, 2015
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few months until I am so frustratedI. Sometimes, I will really throw tantrums. Without this stoma, I [could] go anywhere I [wanted]. Now with this stoma, I do not feel like going anywhere. I will scold my husband, saying, ‘‘You all ask me to go for the operation, now with this stoma, it cause me to be so frustrated.’’ IWith this, whatever I do is not convenientI. When shopping outside, it is [simply] troublesome. When there [are] many people, [having a stoma is] also embarrassing; [having] no water to wash [up is] also very troublesomeI. Worrying about this and that. In this way, isn’t staying home better and not go out? (Patient 2) (Shaking head) IIt really makes you frustratedI. You go out to walk for a while, drink a cup of coffee, it will just come out. It will just produce the coffee smellI. There is no way to conquer this. There is no control over thisI (Patient 3) SUBTHEME 2: HELPLESSNESS
Patients felt a sense of helplessness when they mentioned their experiences of having the stoma created. They understood there was no other choice and they had to undergo the operation to create the stoma; nevertheless, they felt that they had no control over their lives. We [needed] to be operated in the hospital; there [was] no choiceI. There is no choiceI. Then the doctor had to create the stoma for you. Because the tumor is big, then the stool is impactedVthere are all sorts of problem. The doctor also told me there [was] no choice; that was why the stoma was createdI. But I do not have any family; I just take care of myselfI. At that time, I was thinking why [had] to create this stoma. (Patient 1) SUBTHEME 3: AFRAID OF BEING A BURDEN TO FAMILY
Some patients were afraid to open up to their family members as they feared that they were a burden to them. They were apprehensive in confiding to their spouse and children, thus keeping everything to themselves. Just sometimes, I will tell my husband. I am afraid that my children will be worried, so I do not tell them much. They have to go out and work, then if they have to worried about me, they might not have the mood to work, so I did not tell my children (tearing). Most of the time, I am only thinking about it myselfI. Sometimes, I just feel that after they [family] listened, it is not that they are irritatedVjust a little uncomfortable. So I don’t talk about it every time I feel a little terrible; I don’t say [how I feel] every time. Only at times then I will talk about it. I didVsometimes I will talk to my husband. At night, sometimes I will feel troubledVI don’t sleep that comfortablyVbut I don’t dare to tell him too much; or else, after listening, he will not feel very comfortableIafter my husband hears about such things, he is more scared. I feel that he is more nervous than me. That time, after the operationIwhen I saw [my family] standing there, they seemed to be so afraid, so I don’t really tell them much. (Patient 4)
SUBTHEME 4: OTHER NEGATIVE FEELINGS
During the initial postoperative period, patients experienced a range of feelings. They were traumatized and fearful at the sight of the stoma. Some felt nervous and were worried about caring for the stoma; some were even afraid that they were doing it wrong. These negative feelings were experienced more frequently during the first 2 to 3 weeks after the operation. I just feel a little sad thinking of it. Thinking of the stoma made me sad. We are one whole person, why they have to create the stoma for us? (Patient 1) I am afraid of inflammation, skin tearII was afraid that I do not how to cut [the stoma bag]. After [the operation, I] still [managed] to learn [to do so]. [I] have to care for the skin and [I] need to be very cleanI. Initially, I was scared when I [saw] it; after that, the stoma got smaller. (Patient 7)
Theme 4: Social Support Patients highlighted the importance of the physical support given to them during the initial process of learning to care for the stoma as a form of social support. Support from spouses and children was essential in helping them manage their stoma. Their spouses and children made time to learn about stoma care in the hospital. After being discharged from hospital, they assisted the patients in managing the stoma at home, which included draining and changing the stoma bag. My husband helps me to change it, once every 4 dayI it is very difficult to change [the stoma bag on] while standing, [because] the skin at the side will be uncomfortable as it is very tightI (Patient 7) At first, my daughter [drained the stoma bag] for me in the morning and my wife [drained it] for me in the evening when I [came] home from the hospital. After that, I had to do [the draining] myself. Doing this is a task. I can’t change the stoma bag myself because I have to lie down. So my wife does the changing for me. (Patient 10)
Theme 5: Need for Timely and Sufficient Stoma Preparation and Education Patients expressed inadequate education received from the healthcare professionals, leading to insufficient preparation for their stoma. Some recommendations for improvement were made. SUBTHEME 1: INSUFFICIENT EDUCATION RECEIVED
Some patients mentioned that education provided by the hospital was limited. The education provided by the hospital is quite limitedI. I don’t think during this 5 days you can learn a lotI. It is more of a self-discovery. How is more effective [in carrying out stoma care], and to analyze when is the feces coming out? I also observe the time how long
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the feces come out after the food and how long to stay in the toilet, instead of going in and out of the toilet a few times. (Patient 9) Because [the nurse] did not tell us these things, we did not ask her. We also do not understandI. Because over [at the hospital during the postoperative hospitalization], we did not change it, so we [did] not know, [did] not understand the situation. We [discovered], it cannot be like this, it cannot be like that. We absorb [information] slower, whether it is possible to come [into] contact with water, we also [didn’t] know. They also did not tell us not to change after we have eaten; we only [knew] this after that [after discharge from hospitalization]I (Patient 12) SUBTHEME 2: RECOMMENDATIONS ON FUTURE EDUCATION
The patients expressed that it would be useful to receive educational booklets, which they could refer to after discharge. They also recommended that a follow-up in the form of a telephone call or a teaching session after discharge would be useful for adjusting to the stoma. The only way is that if [the health professionals] can compile [the information on stoma care] into a booklet. Alternatively, everybody should have Internet and e-mail, [or information available in] spoken language for those who are not educated, and they can view in the visual manner just like the TV, so they can go to the Web [to seek information] on how to change the stoma bag. I think that will be more effective, because after seeing [a demonstration at the hospital], you will forget; so you can refer to it. I think the weekly calls after we come home will be good. If we were to have a weekly call during the first 2 weeksIthen it would be good. It’s more like a follow-up until the patient and caregiver get used to [managing the stoma]. The booklet is more of a manual, with step-by-step instructions on how to change [the stoma bag], with lots of pictures and few wordings. (Patient 9)
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Discussion
This study aimed to explore the experiences of patients’ management of their stoma during the first postoperative month. The findings explored the process of patients’ acceptance and selfmanagement of stoma during this period. The study found that having a stoma had both physical and psychological impacts on the patients. The patients also emphasized the importance of social support from family members in helping them to accept and adjust to life with a stoma. The patients expressed their need for timely and sufficient stoma preparation and education. Our participants felt that they did not receive sufficient information preoperatively, resulting in their entering a state of ‘‘shock’’ after the operation. Their shock revolved around the physical appearance of stoma and learning to care for the stoma in the hospital. It has always been a challenge for patients to accept their stoma postoperatively.13 Acceptance of stoma is strongly associated with a patient’s adjustments to having a stoma, as well as stoma self-efficacy. Previous studies have shown that
Experiences of Self-Care of Stomas
patients who adapt better to their chronic diseases are those who accept their diagnosis.28 Our participants considered that they would be better prepared psychologically and mentally if they had known exactly what to expect, and this, they thought, could be helped by being provided with sufficient knowledge preoperatively. Many considered that issues with caring for stoma arose mainly after returning home from the hospital, indicating that they were not well prepared for stoma self-care before they were discharged. Patients reflected that they had depended solely on the nurses in managing their stoma during the immediate postoperative hospitalization and had received considerable amount of assistance in the aspects of stoma care. The lack of hands-on practice resulted in the difficulties they experienced in trying to manage their stomas on their own when they returned home, a scenario that has not changed for decades.29 It is necessary to achieve a balance between nurses’ assistance and patients’ independence in self-care. During the psychological adaptation process, it is essential to emphasize self-care in stoma management, beginning preoperatively, to prepare patients better for self-care after being discharged from the hospital.18,30 This is consistent with the report by Burch,6 which highlighted the importance of nurses’ role in the preoperative period. Patients need to be given support to assist them to accept changes that the formation of stoma will have on their bodies and lives.6 Patients considered that they needed approximately 2 to 4 weeks to adjust to their stoma after they returned home. It is critical for assistance to be provided during this period to aid patients in the process of adaptation. The most prominent impact of having a stoma was on the patients’ activities of daily living. They felt restricted in continuing their usual activities, including carrying out basic movements, showering, performing daily household chores, working, and exercising. Patients’ ability to resume normal activities is 1 of the key yardsticks for measuring their quality of life.3 Reduction in previously enjoyed activities is reported as 1 of the top difficulties experienced by patients with stoma.27 Our participants reported reduction in daily activities because of fear of leakage of the stoma and concerns over the pouch overfilling, which was consistent with previous findings.19 Emptying and disposing used pouches in public toilets were the other major concerns, which discouraged patients from resuming their social activities. Instead of finding solutions to adjust to the stoma, most of the patients interviewed in this study chose to avoid possible problematic situations and reduce their social activities. Previous findings have shown that there is a close relationship between the individual’s ability to perform cognitive and social tasks and his/her confidence level to resume normal work and social activities.31 Patients felt that having a stoma had an impact on their personal hygiene. They reported that they were uncomfortable handling their stoma during initial postoperative period, as they were not used to seeing the feces coming out from the stoma so closely, as well as to the odor. Consistent with other studies,32 poor sleep quality has also been reported by our participants, who were mainly concerned with leakage of stoma and overfilling of the pouch, with some facing restrictions in changing of sleep positions. It will be beneficial to provide appropriate advice and support perioperatively to assist patients to cope with their concerns Cancer NursingTM, Vol. 38, No. 3, 2015
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regarding personal hygiene and sleeping problems and find a stoma appliance that they feel confident to use.3 Patients faced many psychological issues during the initial postoperative period. These include frustrations due to having a stoma, feeling of helplessness, and negative feelings toward having a stoma. Many patients emphasized the inconvenience and discomfort resulting from the stoma and the process of caring for it. Some considered that they had no control over their lives as a result of having a stoma. During the first 2 to 3 weeks, many of our participants experienced a variety of negative feelings, ranging from trauma and fear of seeing the stoma to fear and anxiety about caring for the stoma. These psychological experiences are consistent with other studies exploring psychological dysfunction in patients who had undergone surgeries for stoma formation.13 The persistence of unresolved psychological issues without appropriate intervention can lead to depression, loneliness, suicidal thoughts, and low self-esteem.33 This emphasizes the importance of the role of nurses in providing support and addressing concerns of patients during both the preoperative and postoperative periods. It is essential for health professionals to tailor their care of individuals with stomas to incorporate individually expressed needs and desire for control. A feeling of stability in the daily lives of patients with stoma is a key indicator of good quality of life. To enable patients with stomas to have a sense of stability, it is necessary to ensure the availability of an accessible outpatient support system that includes stoma nursing care, regular hospital and stoma clinic visits, and consistent support from nurses, doctors, family, and friends through various channels including online support. Some patients felt that their stoma nurse specialists did not have sufficient time to provide them with education and support. Some patients reported apprehension in confiding to their spouses and children, as they feared that they would become a burden to them. None of the patients mentioned that they attempted to seek comfort and reassurance from their family members. Discussing about stressful life events in a supportive environment is an essential component of successful coping, and it aids individuals in making sense of their experiences.34 It also promotes positive adjustment behavior in patients.35 Ability to share one’s emotions and thoughts about stressful events is associated with psychological well-being and social functioning.36 Previous findings revealed that patients were most likely to discuss about health-related issues with their primary sources of support, including family, friends, and health professionals.36 There are circumstances when some patients lack the capacity to mobilize the support available to them and became obsessed with pessimistic thoughts about the illness, which can restrict access to sources of both informational and emotional support.34 Patients who find it difficult to engage with their family and friends have been found to adjust poorer to their stoma.13 Our participants also highlighted the physical support provided by their family members. Their spouses and children were present in the hospital to learn about the stoma care together with them and provided assistance to them in managing the stoma at home. Family members and other available supports are vital to an individual’s adaptation to life with a stoma.13 Some patients mentioned that the education on stoma care provided by the
hospital was limited, with insufficient contact time with the stoma nurse specialist. Patients considered that they had problems in managing their stoma after being discharged from the hospital and that they had to find answers to questions and issues on their own. According to Ito and Kazuma,37 the accessibility of stoma clinics can reassure patients and reduce their worry over stoma issues. This is particularly important in promoting acceptance of stoma in patients and in facilitating faster recovery. The availability of periodic stoma care and support from nurses upon discharge serves to reassure patients.37 In addition, the patients also recommended the provision of an educational booklet or video or specific Internet information for reference, as well as a follow-up session after they are discharged from the hospital. The follow-up session could be a telephone session or teaching session. The limited numbers of stoma nurse specialists and short hospital stays have made it a challenge for patients to receive adequate counseling and acquire adequate stoma management skills. It will be useful for patients to receive a program that entails sufficient preoperative and postoperative coverage, with the aid of an educational booklet and/or video, a preoperative and postoperative teaching session, as well as postoperative follow-up sessions.
Implications for Nursing Practice The findings of the study provide some evidence for health professionals to improve the services currently available to patients with stomas in the hospital setting. Our findings highlight the type and level of support that nurses could offer to patients to manage their stomas, and nurses should involve patients earlier in the process of stoma management, which will contribute to timely, effective, and independent self-management. Health professionals may prepare patients preoperatively to reduce the negative psychosocial impact of stoma on patients. Involving family members in this process may increase the effectiveness of stoma care management. Increased effective communication between health professionals and patients is 1 way to improve the postoperative stoma management. Psychosocial interventions to assist patients in self-care and management of stoma may be developed, taking into considerations the factors demonstrated in this study, which influences patients’ self-management of stoma.
Study Limitations and Recommendations for Future Studies The study was conducted in 1 clinical setting; it is not possible to ascertain the degree of influence from the hospital’s culture and environment on the patients with stoma. Moreover, patients’ experiences may be influenced by the nurses they encounter in the hospital. In future studies, alternative data collection methods, such as observations, focus group discussions with patients, and interviews with nurses, can be used alongside data collected from patients to enhance the depth of data. In addition, background factors such as cultural values and attitudes unique to these patients were not examined in this study, and all participants were from a Chinese ethnic group, which limited the understanding of the cultural influence on patients’ experiences and the
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generalizability of the findings to patients of all ethnicities in Singapore. Future studies should address these gaps. Furthermore, health professionals should consider developing a psychosocial intervention program that includes an educational booklet, a preoperative interactive session, and postoperative follow-up sessions to ensure comprehensiveness and continuity of education and support to patients with stomas.
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Conclusions
The qualitative approach used in this study adds value to our understanding of the experiences of patients with stoma during the initial postoperative period. Our findings support previous findings that accepting life with stoma remains a challenge postoperatively. The study found that patients were not well prepared to manage their stomas during their hospitalization, which affected their competence in stoma care after being discharged from the hospital. The patients also reported experiencing physical and psychological challenges with the stoma formation and care, which informs health authorities of the need for health professionals, especially stoma nurse specialists, to improve existing programs on the preparation for and education in stoma management. ACKNOWLEDGMENTS
We thank Dr Sandra Mackey, School of Nursing and Midwifery, University of Western Sydney in Australia, for her guidance and support at the beginning of the study. We thank the director of nursing, Dr Tracy Carol Ayre, the nurse managers and nurse clinicians of the participating wards, Singapore General Hospital, for their support and cooperation to allow access to patients. We appreciate all participants for their great support.
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