Lived Experience after Stoma 3000 words

Patient’s Lived Experience after Stoma Formation: A Nursing Care Perspective



Background: Stoma formation has been well known to have an impact upon the wellbeing and lifestyle of the patient and their relatives no matter what their stage of life or age. The fall in the quality of life after a stoma procedure needs specialist nursing support during the first few weeks, and even months, to counter to negative psychological impacts upon the patients.


Objectives: The aim of this study was to review and critically assess studies investigating the impact of stoma formation upon the lifestyles of patients after stoma formation, and how adequate nursing care can make patents’ lives better after the procedure.


Methods: A great many electronic databases were searched and relevant studies identified and either excluded or included from the review according to set criteria. The databases included Parahoo, NMC, SIGN and Nice guidelines, as well as Cinahl plus, Cochrane Library, Ovid and Medline.


Conclusions: The identified studies presented and analyzed in this review provide answers to specific questions on patients’ lived experience after stoma formation. Studies support the notion that effective and specialist nursing care can make the lived experience of the patients much more pleasant and ensure good rehabilitation.



























The purpose of this assignment is to critically evaluate research in order to justify the evidence that underpins the area of after-stoma formation nursing care practice .The author will then use this justification to identify a ‘gap’ in the literature and subsequently propose research to fill the gap. The literature review is based upon the subsequent research method of phenomenology, which will be used to gather qualitative information for this study.

The research for the development of further knowledge in the subject was carried out following both a positivist and an interpretive approach (Creswell, 2009). The positivist approach was required to study the patient’s responses about post This philosophy encouraged a structured methodology to ensure that the initial research questions would be answered and hence, would build up the reason as to why to carry out this research (ibid)

The author has decided to follow a phenomenological approach due to the nature of the research question being all about experiences (Cormack, 2003). To fully answer the research question it is necessary to understand people and nurses’ emotions and feelings, which will take the form of qualitative data (Craven and Hirnie, 2006). Phenomenological research focuses on qualitative data and often involves contemporary issues, hence why this type of approach is most suited.

The reason for choice of this topic are that the author has worked with many district nurses on placement were she was able to witness the after effects of the procedure on   a large of amount of patients undergoing stoma formation for a number of reasons like bowel cancer etc (Burch, 2009). Stoma formation can have a massive impact upon the wellbeing and lifestyle of a patient and their loved ones regardless of age and gender (Borwell, 2009). It has been well noted in literature that the quality of life and even the standard of living of a patient can deteriorate massively following a stoma procedure and specialist support during the first few weeks after the stoma formation (Burch, 2005).

Many patients after the stoma formation fear rejection by friends, spouses and dear ones after the procedure (Williams, 2008) and might even feel sexually inadequate after the end of the procedure. Thus, a stoma nurse specialist should play an important role in offering patients reassurance, kindness, advice and guidance upon how to manage such psychological traumas and inadequacies. This also involves the practicalities of not letting the stoma indulge with their daily activities and their path to rehabilitation. Noting these complications, Fulham (2008: 22-23) comments, “In the current NHS climate, rapid patient turnover and shorter inpatient stays, coupled with the wide range of health care professionals with whom a patient comes into contact, means that patients with a newly formed stoma may suffer from a lack of continuity in care at a very stressful time in their lives .The stoma care nurse specialist is ideally placed to provide patients with ongoing support, information and advice throughout their treatment and afterwards….(however) sensitive and informed care from the ward nurse during the patient’s recovery from stoma surgery can play a vital role in easing patients’ adjustment to life with a stoma…..”.


Building further upon the theme elucidated above the author discusses patient care and its best practices in the context of stoma patients after nursing care. Adequate scholarly research forms the pith and substance of successful nursing practice nursing practice. Proper patient management and continual support is critical for stoma patients for the prevention of infection and depression .In particular it can have devastating effects on the patient’s family and spouse. One of these may be the ability to continue having normal sexual relations despite being bodily fit due to sheer embarrassment. By providing vigilant nursing care in a specialist stoma formation unit, it can be ensured that a patient has a best chance of survival and can be successfully rehabilitated. Therefore, the need to have evidence based evidence based knowledge and skills (NMC, 2009) is pivotal to enable effective management of a potentially depressing post-operative condition consequently offering the patient the best possible chances of recovery.


Existing Reviews on the lived experiences of patients after stoma formation


The literature was searched for existing or currently ongoing reviews on the lived experiences of patients after stoma formation. More specifically, the Database of Abstracts of Reviews of Effects (DARE), and the Cochrane Database of Systematic Reviews (CDSR) were the two databases searched. Cochrane Database of Systematic Reviews contains systematic reviews carried out by the Cochrane Collaboration. Further search was commenced gathered using an online and offline literature search strategy, which included online databases, journals and books and online databases “Ovid”, Cinahl Plus, “Cochrane Library” and Medline, which were accessed through Athens.  When searching Boolean logic was used when entering key words.  The key words used were “stoma” “formation” qualitative with “patient” and “nursing”. The keywords of “lived experience” were also used. An inclusive criteria was set, full text articles in the English Language, from the year 2005 and onwards, etc.  English is the author’s first language; therefore, for articles to be understood there needed to be articles in English. Several Cochrane Reviews searches ( were performed using the give search terms on stoma formation and patients lived experiences as they pertained to the same. Since the main stomas emerge in relation to Colostomy, Ilestomy and Urostomy the keywords in the following table were also used to a lesser extent to check further reviews on the main impacts upon the patient’s lifestyles after stoma formation occurring under the terms laid down in the table adopted from Fulham (2008) below:



Background / Review of Relevant Literature


A review on this topic is of great importance to patients having gone through the stoma procedure, as it will summarize findings from relevant studies and reaching conclusions based on the evidence. Prior to proceeding with the methodology and findings of the present review, some relevant information is outlined below linked to the specific objectives of the present study.


Starting with the search term /phrase that returned the smallest number of results “the patient’s lived experience of stoma formation” we then broke it down to words and key phases. After this many other studies were carried out after To aid the search strategy, limits were set in order to filter out unwanted results By using these limits, irrelevant studies were excluded, reviews and letters or commentaries were also excluded and only original articles returned, and the date of publication was set to 2005-2011 (as mentioned before).


Each article and result that appeared following the respective search in the given databases with the keywords mentioned above was screened initially by reading just the title and the abstract (round 1 of the selection process). The article was accepted through the first round of selection if it was written in the English language, if it presented original research data from human studies (not animals or models) and most importantly if the research involved was relevant to the objective of the present study. Articles that progressed through the first round and the full text was available (either free access or via the Athens portal) were then fully read in the second round of selection (round 2).


A review of the articles found through research


Harris et al (2005) have conducted a study to evaluate the rate of stoma formation and its impact on stoma complication rates, as well as the risk factors and complications it entails. Their study is based upon a record of the post-stoma incidents, individual complications and mortality rates. It has been noted that the age of patient, urgency of surgery and diagnosis are play a role in the high levels of post stoma morbidity and mortality which might explain high mortality in aged ostomy patients.


Thorpe et al (2009) have explored the paradigm of bodily change following stoma formation based on current qualitative research. This study has been based upon fecal stoma’s, which are said to alter the function, appearance and even sensations experienced by the patient. This can have a profound psychological impact upon the patient .To this end, this study has made a sound contribution to the understanding of the ostomists experiencing their body changes from a attitudinal perspective, as before this paper no conceptual framework of such experiences has been drawn from qualitative findings to guide patient-centered care for nursing. The paper used interpretive review methodology for qualitative research synthesis, which strengthens the validity of the same. Thorpe et al (2009) identify the following most significant factors form their experiences:

  • Loss of embodied wholeness,
  • Awareness of a disrupted lived body and
  • Disrupted bodily confidence (Thorpe et al, 2009: 1779)

Through the factors above they believed that, “the impact of the experience of living with a stoma on the embodied self and the ostomist’s embodiment within their life world (Thorpe et al, 2009:1779)” could be well identified and noted. They go on to explain that, “a loss of embodied wholeness which underpins the experience of stoma formation can be represented through awareness of the disrupted lived body and impact on the life world” (ibid).

In a study by Brown and Randle (2005) addressing the paradigms of nursing care in the context of addressing the psychological and social coping strategies for patient care, it has been seen that the psychological and social impact of stoma surgery on peoples’ lives can be very negative and can affect their lifestyle in a number of ways. However, since the literature and studies examined therein are from 1990-2005 there is a chance that some of the qualitative responses do not match in with the technological developments, which have occurred to make their lives better. Nonetheless, the literature is an important step in informing nursing practice in order to alleviate it to improve, maintain or recover their health following ostomy surgery. Brown and Randle (2005:79) conclude “knowledge of the problems stoma patients can experience can help nurses plan care in an individualized way.”

According to Fulham (2008:22) in the current scenario of the UK national health service, there is a likelihood of a stoma care nurse specialist visiting the patient at home after discharge. This is a beneficial practice for the patient’s coping process to recovery by offering ongoing support and advice. The stoma care nurse specialist can also be accessible to the vulnerable and freshly discharged patient by offering to provide telephone advice and a stoma care clinic for patients to attend (Fulham, 2008:22)

Fulham (2008) has also endorsed the view of Brown and Randle that the move of the patient from the hospital to home can cause a lot of problems for patients who have a newly formed stoma. Fulham (2008: 23) notes thus, “While in hospital, the patient may have been focused on acquiring the practical skills required to undertake their stoma care. After discharge, however, other concerns may predominate, such as worries over clothing, returning to work, sex, travel, and pursuing different hobbies and interests. The stoma care nurse specialist and the ostomy associations are ideally placed to offer patients support and information with such issues, and ongoing contact with them should be encouraged to help ease the transition from hospital to home (page 23)”.

According to O’Connor (2003) the patient is likely to suffer from significant psychological symptoms including depression, anxiety and adjusting back into the normal daily activities due to the problems created by the altered body image and an altered attitude of the people around them towards their body. Person et al (2005) have stressed upon the patient’s need for emotional support and reassurance after the stoma formation. Porrett (2005: a & b) stresses the view that patients are more likely to adjust better to life after stoma through empathetic support and advice from nurses. However the study by Pearson et al (2009) of the qualitative responses of such patients allow them to adjust better to life after Stoma after having their care fall short of their expectations. In the UK while patients have access to institutional arrangements for taking care of queries and emotional support needs of the patients and their families, the role of the nurse still remains integral here. These groups include the Ileostomy and Internal Pouch Support Group (www.the-, the Urostomy Association of Great Britain and Ireland ( and the Colostomy Association ( in the United Kingdom (For more information see the article by Fulham, 2008).





The studies presented in this review were selected and discussed as being relevant to the topic of “the patient’s lived experience after stoma formation”. The main databases used were Pub Med, Ovid, Medline and Cochrane and the use of specific key words aided in the sourcing of highly relevant results. Through these searches, many potentially relevant studies were identified and the study selection process resulted in the inclusion of a final of quite a few highly relevant studies on the patient’s lived experienced after stoma formation. The articles selected for the review strive to outlines the fundamental aspects of stoma care required by the patients undergoing surgery involving stoma formation. For nursing care professionals there is a need to understand the very basic fundamentals of post-operative stoma care, emotional support for the patients as well as ongoing support after discharge. The nurse’s job does not end at selecting and suggesting the correct stoma appliance but also the role of the psychological stoma complications for the patient.


Literature has noted the role of specialist nursing staff in aiding patients with newly formed stomas to adjust physically and psychologically to their post stoma time period. This need is based upon the fact that almost 15000 patients every year in the United Kingdom have to go through stoma surgery, where as a bowel or urinary diversion has to be made into the abdomen (Rust, 2007). A stoma is an artificial orifice created during a colostomy, Ileostomy or urostomy (Williams, 2008). Patients undergoing stoma formation may present themselves elective or emergency cases. Furthermore the nature of the stoma can be both temporary and permanent. Whatever the case, the nursing professional is under a duty to demonstrate an understanding of the proposed operation as well as the rationale of the interventions being taken up. This also includes the matters of confidentiality and informed consent under the NMC code of Conduct (2009). At the peri-operative stage for stoma the nurse’s role is to act as an advocate and advisor to the patient and to respond to his/her queries or fears (ibid)





In conclusion, the identified studies presented in this review provide answers to the specific questions posed initially earlier on in the review. Studies support the notion that good nursing care is in fact related to better patients lived experiences after stoma formation in addition to other factors like care and prevention of infection and physical complications. Moreover, nursing advisory and therapy after the procedure can improve the patient’s condition significantly and allow them to quicken the process of physical and psychological rehabilitation in their transition from the hospital to their home.


Limitations of the Present Review


The present review is not free of bias and several limitations render it prone to error. The very nature of the research and the fact that the review relies on available published studies is one source of information bias. It is hoped that qualitative research done by the author will help bridge this gap later on. The present review did not include a thorough search of other multiple databases like science direct for example. Only a few prominent databases were used as a source of articles. In addition, the search did not include journal hand-search and also did not involve searches of conference proceedings, therefore increasing the potential for publication bias. It is possible to agree with Thorpe et al (2009:1) who have suggested, “the need for further research to identify a comprehensive conceptualization of bodily change, which can more closely match healthcare service to individual patient need” (Thorpe et al, 2009:1780). The author also failed to find detailed studies on the qualitative responses of the patient’s willingness to discuss their sex or married life after stoma formation. It is believed that this may also present a major gap in the current literature.


Further limitations include the selection of appropriate exclusion and inclusion criteria. In this case, only one investigator (the author themselves) undertook the research for the identification of appropriate studies. Academic good practice dictates that a review is less prone to bias if a minimum of two researchers are involved at all stages of the review (Cormack, 2003). In addition, while a creation of a review team was beyond the budget of this study, it can help in the better management and completion of the review, which was again something that the present review was lacking. For future studies, further recommendations for the reviews of studies include formation of an advisory group (Cormack, 2003). Such a group would bring together nursing and other health professionals from a wide range of fields and their views would result in a more comprehensive and inclusive review (Craven and Hernie, 2006). In any event, it may be valuable to have an advisory group whose members can be consulted at key stages.















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