Exploring Patients' Psychological Experiences Following Stoma Surgery


In the UK, the incidence of stoma is quite high with Bowel Cancer UK estimating that nearly 120,000 people are living with the condition. This translates to about one person in every 500 individuals in the UK.  Also, each year, more than 13,500 individuals undergo stoma surgery (Jones, 2016).  The National Institute for Health and Care Excellence have described a  stoma as a surgically created opening on the front of the abdomen aimed at facilitating in the exit of urine or faeces from the body (NICE, 2014). The content that leaves the body is then channeled through a stoma into a bag external to the body. Some of the common conditions that might necessitate stoma surgery include various forms of cancers, such as bowel cancer, cervical cancer, balder cancer, and Crohn’s disease, among others conditions. Having a stoma is regarded as having a psychological effect on the life of an individual. Besides being faced with loss of control over urine or fecal elimination, they are also likely to experience stigma, social isolation, embarrassment, changes in sexual function, body image, and decreased mood (Liao & Qin, 2014). For these reasons, it is important to make sure that a stoma patient's emotional state is both examined and supported in the course of having surgery, and post-surgery.  Previous studies have also indicated that new stoma patents manifest in various forms of anxieties, mainly with regards to body image problems, odour, perceived attractiveness to others, noise, and leakage. Even as such anxieties largely fall under stoma care management, they nonetheless play a leading role towards the patient's adaptation and adjustment. Hong et al. (2014) report that between 16% and 26% of stoma patients experience negative psychological symptoms following surgery. Having a stoma is in itself a life changing event which requires psychological adjustment at the individual level.

 Individuals with a stoma reportedly exude low confidence and this could negatively affect intimacy and socializing.  The most common symptoms reported include depression and anxiety, although suicidal ideation is also reported (Jayarajah, Samarasekara & Samarasekera, 2016). Seeing as having a stoma impacts more on the patient from a psychological perspective, as opposed to a physical point of view, it is important therefore for health care professionals to pay attention to the psychological wellbeing of stoma patients (Repi? & Ivanovi?, 2017). However, evidence from existing literature on this topic suggests that such patients are often neglected.  Consequently, such patients find it hard to manage their stoma better.  The focus of this dissertation is on exploring patients’ psychological experience following stoma surgery. The justification for the choice of this particular topic is because stoma surgery constitutes an area of growing interest in health care, owing to the increasing number of patients living with the condition. Additionally, stoma patients are usually abandoned in practice placement, despite the psychological challenges that they encounter during and after surgery. By exploring these psychological experiences from the perspective of patients who have undergone stoma surgery, this dissertation intends to also hopes to contribute towards improved practice in stoma surgery through the recommendations made on addressing the psychological needs of stoma patients.

Literature Search

Nursing research constitutes a growing area of healthcare in which nursing professionals play an active role in advancing nursing care through their experiences and other skills. Besides its all important role in facilitating professional nursing practice, nursing research also enhances optimal nursing care. One way of advancing nursing research is by conducting a literature search. Rau (2004) has defined a literature search as a methodical and highly structured search of data that has already been published. A Literature search is meant to reveal the span of quality references regarding a definite topic. Similar sentiments have also been echoed by Havard (2007) who further adds that a literature search involves one of the most efficient and effective means of identifying sound evidence regarding the subject under scrutiny.

By conducting a literature search, the researcher is also in a position to draw information that will in turn assist him/her to make evidence-based guidelines.  Another purpose of a thorough literature search is to enable the research develop a research question by assessing literature with a view to identifying existing gaps and hence suggest areas in need of further research.  In order to undertake the initial literature search, various electronic databases were identified. The databases indentified for the search include: Cochrane library; PubMed, CINAHL, and BNI (British Nursing INDEX). The reason for choosing these databases is because they contain articles that offer reference to nursing, medical and social care, and are hence relevant to the topic at hand. Additionally, Google scholar was also identified as a viable database for accessing articles suitable for the topic under investigation. Google Scholar catalogues numerous peer-reviewed journals on various disciplines, including in the field of nursing. Consequently, the researcher has access to a wider range of peer-reviewed articles than would be the case with the conventional academic databases.

In undertaking a literature search, it is important that the researcher first develops a search strategy so that he/she will be able to retrieve up-to-date information and hence answer the research question. The University of Leeds (2019) describes a search strategy as a systematic composition of key terms essential in undertaking a literature search.  It integrates the main ideas of the search question with the objective of retrieving accurate results. Ideally, your search strategy should encompass phrases and keywords, as well as the likely search terms. Additionally, it may also be necessary to include wildcard and truncated variants of search terms. A well developed search strategy allows the research to retrieve sufficient articles that he/she can then evaluate for possible eligibility and inclusion into the literature review. Search terms included stoma, surgery, psychological, experiences, and patients. The Boolean operators 'AND' and 'OR' were also included in order to refine the search. These are helpful in terms of defining and connecting the link between search terms. Besides, Boolean operators may also help the research to either broaden or narrow the record sets.

In conducting the search, the research was interested in identifying articles that met the following inclusion criteria. First, articles for inclusion should have been published not older than 10 years. Since the original search began in February 2019, the search was hence backtracked to January 2009. Secondly, the search would be restricted to articles published in English language. Also, only those articles that had an abstract were included. The search was also limited to article that included the experiences of patients who have undergone stoma surgery. Also, news announcements and conference reports were excluded. Additionally, articles that were published more than 10 years ago, or those that were not published in English were also excluded from the search.  The initial search yielded 120 articles for possible inclusion. However, 12 articles could not be retrieved and so they were excluded. Of the remaining 108 articles 96 were eliminated based on the exclusion criteria. Consequently, only 9 articles remained that fulfilled the inclusion criteria. These were hence induced for review.

Literature Review

Carlsson et al. (2010) undertook a study with a view to examining the overall quality of life and patients' concerns prior to and following ostomy surgery. This was a qualitative study. The study sample consisted of a total of 57 patients drawn from a Gothenburg-based university hospital in Sweden. The majority of the participants were men (35) while the rest (22) were women. Participants were aged between 30 and 87 years, with a median age of approximately 66 years. The findings therefore may not be representative of younger patients with a stoma.  The study was based on a prospective design, in which the researchers administered questionnaires to the participants before surgery, and postoperatively, at intervals of 1, 3, and 6 months. The overarching objective as to assess the participants’ quality of life prior to and fooling ostomy surgery. The HRQOL (health-related quality of life) questionnaire was administered in order to assess participants’ concerns.  Based on the research findings, participants were concerned that they might end up being a burden to their families and friends following surgery. They also raised concerns, on the uncertain nature of the diseases. There was also a noticeable considerable decline in the HRQOL scores following surgery, in 6 out of the 8 domains being tested. However, scores improved 6 months following surgery. Considerable variations were also evident between population norms and preoperative study group scores on issues to do with social function, emotional and physical health function, and mental health.   Considerable variations were still evident even after 6 months following surgery. Some of the hindrances to maintaining quality of life as identified by study participants included pain worries over life following surgery, fatigue, as well as limitations brought about by surgery. Based on these findings, it is quite evident that stoma surgery is often accompanied by varied concerns by patients regarding their overall quality of life after surgery. One of the key strengths of this study is that it examines the patient’s quality of life before surgery and after surgery. As such, it is possible to assess the extent of decline in patient’s quality of life attributed to surgery. However, considering that this was a prospective study that was conducted on patients awaiting surgery, it could be that there would be a difficulty in generalizing the results to patients in other settings. This would make such results unreliable.

Elsewhere, Anaraki et al. (2012) undertook another qualitative study with the overall objective of determining the impact of stoma surgery on patients' quality of life. The study was based on a cross-sectional design and involved a sample size of 102 stoma patients whose inclusion into the study was based on a simple sampling technique. Data collection was accomplished via the City of Hope Quality of Life-Ostomy Questionnaire. Predictors of quality of life were accomplished using multiple and univariate regression analyses. Research findings showed that over 50% of the participants manifested in symptoms of depression after stoma surgery. Univariate analyses showed that the nature of ostomy (that is, whether permanent or temporary) impacted on the patient's overall QOL, as did depression, having to change the clothing style, and the underlying diseases leading to stoma development. These findings are a clear indication that stoma impacts on a patient's overall QOL. Considering that this study took place in Iran, there is likelihood that it may not be replicated into the UK, given the cultural differences between the two countries. For example, patients with stoma in the UK are more likely to be open-minded about its effect on their overall QOL, including issues of dressing and sexuality, in comparison with their counterparts in Iran. Also, the study has failed to mention support from family and friends, as this has been shown to improve the overall quality of life of stoma patients. Also patient education, prior to and following stoma surgery is also helpful in terms of improving the patient's QOL. This too, has not been mentioned.

Having a stoma may also affect a patient’s perception of his/her body image. This is what Aktas and Baykara (2015) sought to establish in their study in a cross-sectional study that was conducted among Turkish stoma patients and their partners. The sample size consisted of 60 patients with an abdominal stoma, and their partners. The study was therefore limited to the experiences and perception of married stoma patients and their partners, and may hence not reflect the findings of the wider population. Body image was assessed via a BCS (Body Cathexis Scale). According to Jayarajah and Samarasekera (2017) stoma creation often results in considerable change in a patient's perception of their body image. Consequently, adaptation to the ensuing change in body image is vital for a successful rehabilitation after surgery. Patients whose partners assisted with stoma care recorded considerably higher BCS scores in comparison with their counterparts who did not, Also, consulting with partners on stoma creation was associated with higher BCS score in comparison with patients who did not consult. Collectively, the findings underscore the fact that partner involvement in on body perception after stoma surgery. However, the study has failed to mention whether men or women patients were more likely to have higher BDS scores. This is important as it would help in effective targeting of stoma patients for possible rehabilitation. 

Liao and Qin (2014) undertook a qualitative study to determine the influences of quality of life among stoma patients. This was a prospective study with a sample size of 76 patients. It was conducted at a tertiary hospital in Beijing where the participants were in patients. The findings indicated that stoma patients struggled with various aspects of quality of fie, including issues of sexuality, socialising, work, and body image. On the other hand, improved self-care and hope were seen to have a positive effect on the patient's QOL. Since the study was based on convenient sampling, the results can only be generalised to the actual sample under study, and not to any other study. Also, the research question would also be restricted to the sample in question. Although the study is based on up-to date sources, the sample size is small (Faber & Fonseca, 2014). Also, the researchers failed to include patients who have had stomas for longer duration of time thus making it hard to tell whether the QOL variables differ with time. The small sampel size may be seen as a limitation of the study by Liao and Qin. A large sample size is desirable because it aids in the realsiaiton of more conzclusive result. However, seeing as this was a qualitative study, a sample size may not be a priority. Cresswell (1998) recommends that a  sample size of between 20 and 30 participants is sufficient in qualitative studies. Another limitation of the study is its use of a prospective design. This means that participants completed the study questionnaire while still undergoing routine checkup. It may be hard to replicate the study in other settings, thereby making the findings non-generalisable (Suttonn & Austin, 2015).

Like Aktas and Baykara (2015), the study by Hueso-Montoro et al. (2016) also sought to determine the experience of patients with digestive stoma, and how they cope with their altered body images following surgery. This was a qualitative phenomenological study with a sample size of 21 stoma patients. The researchers administered semi-structured questionnaires to capture the patients’ experiences and coping strategies. From the research findings, it emerged that the ability of stoma patients to cope with the news hinged on the nature of illness. Nursing professionals were identified as playing a huge role in the normalisation process following surgery, especially via the implementation of behavioural and cognitive reinforcement interventions. Past experiences with stoma by family members also helped with coping.  Although the sample size is small (at 21) it is nonetheless adequate for a qualitative study because the most important thing is to document the participants' feelings and experiences, which the authors have effectively done.

Hubbard et al. (2017) found out that stoma patient would wish to be included in any heath priorities aimed at improving their QOL following surgery. Their study was in the form of a pilot survey which they administered online through the various stoma charities spread across the UK. The study was targeted at patients with a stoma and who are of 16 years of age and above. This study is likely to capture aspects of quality of life from patients in diverse age settings and the findings are hence representative of all stoma patients. A total of 225 participants completed the online survey. Majority of participants identified stoma bag problems and pouch leak issues as their main worries as hence an important area of research priority. Differences is ranking stoma research priorities emerged based on gender, nature of stoma, underlying source of stoma, as well as the duration of time that a patient has been living with the stoma. Study findings indicate the willingness of stoma patients to partake in research priorities, which would in turn impact positively on their quality of life. One of the key limitations of the study is that males (n=59) are underrepresented, compared to females (n=164). Consequently, the emerging perceptions are more likely to reflect a feminine perceptive, as opposed to being neutral. Also, the fact that the sample was drawn from stoma charities could be seen as constituting a selection bias.

Evidence that medical support and care helps to improve the quality of life of stoma patients following surgery has also been documented in literature. Ito et al. (2012) undertook a prospective longitudinal study to determine the QOL of patients with permanent colostomy due to rectal cancer. Study participants were recruited from 2 university hospitals located in Tokyo. Data was collected by having the study participants complete a self-administered questionnaire. Participants were aged 20 years and above. The questionnaire was intended to assess the participants' QOL after 2, 6, and 12 months of surgery. It emerged from the study findings that the participants' QOL was lower in the first few months after surgery, compared to 12 months later. At this point, the QOL on most domains under study had gone to almost the same level as prior to surgery, save for the social functioning domain. Based on the research findings, the authors underscore the importance of providing additional medical care and support to patients who have undergone permanent colostomy to assist with coping. Nonetheless, considering that the study findings are only based on two clinical settings, it becomes hard to generalise the results to other settings. Also, there is no evidence that the researchers took into consideration the attitudes and cultural values of the participants, which is vital in examining the psychological experiences of stoma patients.  Besides, participants were drawn from a Japanese ethnic setting and as such, it is hard to generalise their findings to patients of different ethnicity, such as Britons.

Feddern, Emmertsen and Laurberg (2015) undertook a cross-sectional study of patients with a stoma who had already undergone treatment for rectal cancer. The study took place between 2001 and 2007. Data on the quality of life of participants was collected by mailing self-administered questionnaires to patients who had a permanent stoma, following curative resection to treat rectal cancer. A total of 732 stoma patients were targeted, with 644 filing up the questionnaire. This translates to a response rate of 88%. More than two thirds of the patients (68%) reported that the stoma had impacted on their quality of life. Majority of the patients also reported being disturbed by the smell of feaces and leakage, at 58% and 59%, in that order. A key strength of the study by Feddern et al. (2015) is that the authors have explored the association between the effect of stoma on gender, nature of surgery, and quality of life. Consequently, it quite possible to identify which types of stoma have a huge impact on quality of life, or which gender is impacted greatly by stoma. However, no association was evident between these variables and stoma.

Lim, Chan and He (2015) carried out a qualitative study with the main objective of understanding the experience of stoma patients with respect to self-care of such stomas, during the first month following the stoma. The study had a sample population of 12 and it took place in a Singapore-based colorectal ward. Data collected was accomplished via the use of semi-structured interviews that were administered to the study participants. Once the interview data had been collected, it was subjected to thematic analysis to identify the emerging themes. From the ensuing data analysis, five main themes were evidence: physical limitations of the stoma; acceptance as having a stoma and self-management of the same; social support; psychological reaction; as well as the need for adequate and well-times preparation and education about stoma. From the research findings of the study by Lim et al. (2015), it is quite evident that health professionals play a very important role in terms of assisting stoma patients accept the stoma prior to and after surgery. The input of health professionals is also vital in the first 1 month after surgery in order to assist the patients adjusts to the psychological, social and physical impact of the stoma. A key strength for this study is that the authors have managed to identify five main themes relating to stoma patient’s experiences one month post-operative. These themes are important because they point towards the social, physical, and psychological experiences of stoma patients following surgery. Such knowledge would be important for health care professionals in terms of devising strategies that would enable the patients to manage stomas with minimal negative effects. However, the low sample size of 12 participants is a major weakness for the study, even though it is based on a qualitative design. Researchers could settle for a limited sample size owing to various reasons, including economic. As the sample size gets too small, there is a resultant decrease in the power of such a study. At the same time, the margin of error in such a study would obviously increase, in effect making it meaningless (Faber & Fonseca, 2014). Also, considering that the study’s sample was drawn from Singapore, there is the risk that the findings may not be replicated in another setting, such as in the UK on account of the cultural differences between the two countries.



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