Literature Review on the Psychological Impact of Stoma Formation

1. INTRODUCTION

Stoma formation can occur for various reasons which could be improving the lives of people with gastrointestinal diseases such as colostomy, ileostomy or Urostomy, Gastrostomy and jejunostomy. Around 102 000 people in the UK are currently living with a stoma, with approximately 21 000 people undergoing stoma forming surgery annually (Boyles 2010).

Research has shown that approximately 20% of patients experience psychological symptoms after surgery (Burch 2005).It is estimated that 20% of ostomists experience clinically significant psychological symptoms post operatively, which include major depression and anxiety disorders (Coloplast 2010).

Stoma formation causes a major change in a person’s life, and results in complex emotional, social, and physical concerns including sexuality (Weerakoon 2001). Stoma formation can have an impact on an individual lives causing them stress, anxiety and lack of self-esteem. People who undergo these surgeries feel unattractive because of the changes in their physical appearance which leads to lack of confidence.

Morrow (1976) indicated that patients are almost universally shocked to see the stoma after operation and Druss et al (1969) report that two- thirds of a sample of 36 colostomates described an unpleasant initial reaction (Barbara pg. 67 1989).

Wade (1989) suggests that it’s important for the stoma to be monitored after surgery in terms of checking the colour of stoma during routine observations. However Community nurses can help assist the patient with any help in terms of interests through the use of their knowledge. (Burch 2005).

This literature review will focus on the psychosocial impact of stoma information on adults in terms of quality of life, body image, sexual activity. The aim of this literature review is to critically evaluate the entire relevant document that has been published about the chosen topic and also to summarise and analyse the arguments of other researcher’s studies relating to the psychosocial impact of stoma formation.

1. Methods

This literature review will include all studies both quantitative and qualitative methodologies used in carrying out researches from previous articles and journals relating to the chosen topic. The literature search was carried out using electronic journals, databases, articles, books as well as academic websites.

The database used for the chosen topic from the last twenty years till Date was British journal of nursing, Academic Search Premier, Cumulative Index to Nursing and Allied Health Literature, Medical Literature On-Line, British Nursing Index, The Psychology of information , The psychology of Articles and Pub Med.

Moreover whilst searching, the keywords used were “Stoma Formation”, “Psychosocial Impact of Stoma Formation”, “Social Impact of Stoma Formation”, and “Stoma Surgery in Adults”. These keywords resulted in giving over 2,000 hits relating to the chosen topic especially the themes.

In order to narrow down the research to get more information relating to the themes, another search method was used. The keywords “body image and stoma formation”, “sexuality and stoma surgery”, “Quality of life and ileostomy”, “psychosocial effects of stoma surgery” were searched using Boolean operators but still there was very limited access to recent studies but most of the result found where in articles, Journals and few online published books relating to the chosen topic

In addition different journals such as British Medical journal, Gastrointestinal Nursing, Journal of Clinical Nursing, Journal of community nursing was available on these databases and was used to search for studies and researches carried out relating to the chosen topic. To get more recent studies carried out by researchers, the references list was checked to make note of other studies cited in the journals as to get a view of the chosen topic.

Furthermore to review the articles and journals that will be used for the literature review, articles and journals that did not discuss the themes were used very briefly.

Most of the research documents found were journals and articles with little access to actual studies that was conducted within social research. Recent research conducted on the effects of stoma formation on adult tends to be from abroad which focuses in depth on body image and quality of life rather than the sexuality.

1. The Impact of Stoma Formation on Body Image

This section will look at the impact of stoma formation on one’s body image. With the formation of stoma, people may feel rejected from friends because it’s not just a physical impact on the body such as loss of bowel control but also affects the way social interaction takes place in the society which may lead to social isolation.

Although body image is seen as one of the main effect of stoma surgery, for instance the way an individual see themselves will determine how confortable they feel about their body to engage in social activity/interactions. Also changes in physical appearance is likely to make the individual feel less attractive which can lead to lack of insecurity and loss of control (Porett and McGrath 2005).

The study by McKenzie et al (2006 ) involved 86 patients aged from 18 to 84 years accessed between one and four months after surgery using old using a HAD scale and five questionnaires in a one off interview. The HAD scale has been proved to be reliable in terms of accessing patients suffering from anxiety and depression (Bjelland et al 2002) The findings supported the hypothesis as McKenzie et al (2006) concluded that patient suffered psychological effect from having a colostomy surgery which suffered from the way they cared for their stoma such as worrying about their pouch leaking.

This finding has been supported by that of jenks et al (1997) who also revealed that patients who undergo stoma formation often feel disgusted, shocked and embarrassed about their body image. Participants in this study have also worried about changing their appliance with difficulties to leakages and odours.

The study by McKenzie et al (2006) conclusions was based on a cross sectional design whereby the researcher produced links relating between pouch change and disposal rather than the findings. Although the HAD scale has proven to be reliable the sampling method focused on participants who had the surgery in the first four months. Again this is a possibility of the result being biased as it takes a while for people to get used to idea of having a stoma formation. As other researchers have argued that the quality of life drops significantly directly after treatments and returns to preoperative values within a year (Polom et al 2008) and also Noone (2010) highlights patient often feel loss of confidence, rejection as well as lack of independent.

Whereas a phenomenological study by salter (1992) investigated the effects of body image in patients with a conventional stoma compared those who had a conventional stoma followed by pouch using a convenience sample of seven patients attending pouch outpatient clinic. The data was collected using and informal unstructured interview which was taped despite the fact each of the patients were given choice if they still wanted to partake in the study.

However salter (1992) concluded that People with stomas perceive themselves as having undergone body image changes as a direct result of their surgery. The findings indicated that people fear situations, such as odour or leaking, which may draw the attention to people in their surroundings. The findings from the participants also included “sexual problems, feeling of loss, social activity, stoma management” salter (1992). Again the findings are similar to that of the study conducted by McKenzie et al (2006) as well as the ones conducted by Polom et al (2008) who revealed that the participants in his study were afraid of the smell and leakages.

The sample method used in the study by salter (1992) it wasn’t large enough because it studied a small number of people visiting the clinic therefore the researcher would have benefited from using a large participant as to get more result. Furthermore using a qualitative interview method in this study would have biased the result as the interviewer.

Another Weakness is that it focused more on link between patients who have had stoma and a continent pouch compared to those who stoma alone with interviews between stoma care nurses and the patient which could give a biased result.

Although the studies discussed above have their weaknesses they still have similar findings as to the way body image is clearly influenced by the formation of stoma.

Furthermore, Jenks et al (1997) investigated the changes of body image for people treated with ostomy for bowel cancer involving forty five participants between thirty to eighty years of age who had bowel or bladder cancer during preoperative, one month of the surgery and six months from the date of the surgery. Two instruments were used in this study which was the Body Cathedix Scale and the Draw a Person Scale. Larkin (1960) provided validity of the DAP scale.

The participants were interviewed based on their quality of life as well as body image. This study concluded that the participants experienced a change in body image following the formation of a stoma. Whereas the study by (Nugent et al, 1999) supports jenks et al 1997 findings, using a survey carried out in 1999, colostomy and Ileostomy as the patient’s major concerns where patients rated ballooning skin excoriation and faecal leakage (Simmons 2008).

Nevertheless the study by Jenks et al (1997) had a weakness because the sampling method focused more on patient that was diagnosed with bowel cancer which alone itself can cause distress and anxiety in patients. As Elcoat (1986) argued that if an individual becomes ill, it involves a change in the body image which would cause severe psychological difficulties coping with this change.

Furthermore the results in this study were based on the facts that patients had a more complicated issue which could affect their health and wellbeing which could be seen as a weakness.

1. The Impact of Stoma Formation on Quality of life

Quality of life is a measure of the optimum energy or force that endows a person with the power to cope successfully with the full range of challenges encountered in the real world. (Anderson, 1998; Burch 2005). Undergoing a stoma formation can have an effect on the individual’s physical and psychological well-being (slater 2010).

Most of the literature reviewed highlights that the formation of stoma can have a negative impact on a person’s quality of life as well as their health and well-being and their lifestyle.

However Williams (2006) argued that once patients are discharged they are usually supported in the community by their GP and nurses during the period of recovery. Although recent studies have shown that formation of stoma causes psychological issues such as loss of confidence McKenzie et al (2006) argued that the stoma care nurse plays a major role in helping patients make sure that they regain their confidence.

A qualitative study by Owen et al (2008) investigating the “experience of having stoma and subsequent reversal affected the lives of the participant” involving five middle aged participant, two male and three female ranging from 60 to 78 years interviewed about their experience using an explanatory first level descriptive research collected within three months with in depth face to face qualitative one on one interview.

This qualitative method meant that issues will be discussed in depth with each of the participant (Britten 2000 cited Owen et al 2008). The findings of this study showed that during stoma formation the patients were having feelings of not wanting to go out, bags being faulty, and the creation of stoma influencing all domains of their life. It also concluded that having a stoma can have a negative impact on ones quality of life in terms of stigmatization which has been supported by other studies such as salter 1992, Manderson 2005, McKenzie et al 2006)

However the purposeful sampling method was weak in terms of age range as it focused on older adults, the number of participants used as well as the period the research and data’s were collected.

Recent studies has shown that what most patients are worried about in terms of quality of life are, lack on control, feeling that everyone will see or smell the stoma, feelings of isolation(Burch 2005) A study by Polom et al (2008) investigating the effects of stoma in the quality of life in patients with rectal cancer involving 50 participants ranging for 38 to 80 years visiting the outpatient clinic.

The EORTC QLQ-C30 and QLQ-CR38 questionnaires were both used to access the quality of life between three months. Polom et al (2008) concluded that some patients were afraid of the odour and leakage from stoma bag, being embarrassed and handicapped, skin irritation.one of the major problem was sexual dysfunction between the participants. Also some patient felt less attractive and dissatisfied with their own appearance. 0ther studies such as Owen et al 2008, jenks et al 1997 and McKenzie et al 2006 have all supported the findings.

However because this study was focused on using an Anonymous questionnaire, this wouldn’t provide a genuine answer as the questions are based on what the researcher wants it to be. The sampling method used was small as the researcher would have benefited from using a large number of participants to get more voice relating to the hypothesis.

1. The Impact of Stoma Formation on Sexual Ability

Sexual dysfunction occurs in patients due to psychological and physiological issues. Elcoat (1986 p.g.186) Recent studies have shown that following stoma forming surgery, 69% of patients have sexual health concerns (Van-de-WeU et al, 1991; Williams 2006). Studies such as Nugent et al (1999) investigated that sexual function, mainly impotence, was a problem for 43% of colostomists and 45% of ileostomists (Boyles 2010).

This finding has been supported by Nordstrum (1985) who argued that impotence and libido are likely to be symptoms of depression which are caused by psychological problems after sexual function (Nordstrum 1985; Salter 1992).

In relation to impotence studies have shown that about 90% of men have described impotence after surgery for bladder cancer (Anderson, 1993; Dorey, 2000; Williams 2006). It is said that sexuality is closely linked with body image (Salter 1992) however during the post-operative period when patients are trying to cope with stoma their sexual desires and feelings may be reduced which will depend on how well the patients copes with the appliance ( Black 2004 ).

An on-going study by Manderson (2005) investigates how men and women with permanent continence problems talk about their sexuality around their body image involving thirty two participants; eleven males and twenty one females ranging from 24 to 82 years using a quantitative method. The data were collected as part of an on-going study which involved cassettes, letters, interviews which were collected at different times which meant that some participants were either married, divorced, working at home or professionals at the time of the first surgery. However all of the people interviewed highlight that they had problem with their sexuality and body image after the operation.

This study concluded that the individuals needs for sexuality and desire was affected due to the illness that led to the surgery (Manderson 2005). Another finding that supports this was a case study by Williams (2006), who concluded that the patient interviewed showed concerns distress with his sexuality following the surgery. Borwell (1997) also argued that the patient’s ability to accept a stoma is influenced by the reason the stoma was required (Borwell, 1997; Black.2000; Williams 2006).

One study by Perssons and Hellstroms (2002) found that all patients believe their sexual desirability decreases after ostomy surgery. Another study that supports this finding is that of Salter (1992) who concluded that ostomy patients feel sexually less attractive, whereas their spouses did not share this view as they felt less sexually attractive when they saw the pouch (ÖZMEN et al 2007).

1. Conclusion

In conclusion, as mentioned earlier this literature review has concluded that formation of stoma affects the lifestyles in so many different ways. It has given so many issues with regards to how stoma formation affects one health and lifestyle. It is important to know that people must be supported in order to live a healthy lifestyle. An article discussed above highlighted how patients need to be supported and given enough advice in terms of stoma appliance and how to manage the pouch to avoid any leakages and odour before and after operation by the stoma care nurses.

Furthermore, patients are at risk of developing psychological problem due to the degree of illness therefore nurses should assist and intervene as much as possible to provide the necessary treatment required in order for individuals to live a healthy lifestyle. It is said that individuals with the formation of stoma experience loss of control, expresses feeling of shock and disgust. Therefore stoma care nurses will need to make sure that they help them towards recovery.

The predominant themes addressed in the literature review were effects on the body, quality of life and sexual activity following a stoma formation. The area sexuality lack relevant research studies and this is reflected in the scope of the research. This also suggests that there is a need for further research in that particular area.

Furthermore, recent researches on the effects of stoma tend to be outside the UK and mainly focus on body image in depth rather than the three themes mentioned above, this indicates that research needs to be done into the effects of stoma surgery using qualitative and quantitative method so that the researcher would get more voice in terms of individual’s personal experiences as more researches needs to be done in UK. As mentioned before the studies carried out supported their hypothesis but still needs to be done with larger participants to get more voice over the experienced illness. The study by Salter 1992 met the hypothesis in some part which suggests that more research needs to be done.

1. REFERENCES

• 1. BURCH.J, (2005), ‘Psychological problems and stomas: a rough guide for community nurses’, British Journal of Community Nursing, 10, 5, pp. 224-227.
• 1. BOYLES, A (2010), ‘Patient outcomes and quality of life following stoma-forming surgery’, Gastrointestinal Nursing, 8, 8, pp. 30-35.
• 1. BJELLAND. I, DAHL.A.A, TANGEN HAUG. T and NECKELMANN. D, The validity of the Hospital Anxiety and Depression Scale: An updated literature review, Journal of Psychosomatic Research, Volume 52, Issue 2, February 2002, Pages 69-77.
• 1. BlACK. P (2004) Physiological, sexual and cultural issues for patients with a stoma. British Journal of Nursing 13(12): 692–7.
• 1. ELCOAT. C, ( 1986), Stoma Care Nursing;Current Nursing Practice. Bailliere Tindal ltd
• 1. JENKS. J, MORIN. K, & TOMASELLI. N (1997) , ‘The influence of ostomy surgery on body image in patients with cancer’, Applied Nursing Research, 10, 4, pp. 174-180.
• 1. KILIÇ. E, TAYCAN. O, BELLÄ°, A. K, ÖZMEN, M ( 2007 ), The Effect of Permanent Ostomy on Body Image, Self-Esteem, Marital Adjustment, and Sexual Functioning, Turkish Journal of Psychiatry, 18(4): 302-310
• 2. MCKENZIE. F, WHITE. C, KENDALL. S, FINLAYSON. A, URQUHART. M, & WILLIAMS, I (2006) ‘Colostomy care. Psychological impact of colostomy pouch change and disposal’, British Journal of Nursing (BJN), 15, 6, p. 308
• 1. MANDERSON. L 2005, ‘Boundary breaches: the body, sex and sexuality after stoma surgery’, Social Science & Medicine, 61, 2, pp. 405-415.
• 1. NUGENT. K, DANIELS. P, STEWART. B, PATANKER. R & JOHNSON C (1999) Quality of life in stoma patients. Diseases of the Colon and Rectum 42, 1569–1574.
• 1. OWEN, J, & PAPAGEEORGIOU, A 2008, ‘The lived experience of stigmatisation in patients after stoma reversal’, Gastrointestinal Nursing, 6, 4, pp. 26-33.
• 1. PORRETT. T, MCGRATH. A (2005) Stoma Care: Essential Clinical Skills for Nurses. Blackwell Publishing Ltd, Oxford.
• 1. SALTER, M (1992), ‘What are the differences in body image between patients with a conventional stoma compared with those who have had a conventional stoma followed by a continent pouch?’, Journal of Advanced Nursing, 17, 7, pp. 841-848.
• 1. SIMMONS, K (2008), ‘Improving stoma surgery outcomes: more patient choice, more psychosocial support’,Gastrointestinal Nursing, 6, 4, p. 21.
• 1. WEERAKOON, P 2001, ‘Sexuality and the patient with a stoma’, Sexuality & Disability, 19, 2, pp. 121-129.
• 1. WILLIAMS, J 2005, ‘Psychological adaptation. Psychological considerations in gastrointestinal nursing’, British Journal of Nursing (BJN), 14, 17, pp. 931-935.
• 1. WILLIAMS, J 2006, ‘Stoma care. Sexual health: case study of a patient who has undergone stoma formation’, British Journal of Nursing (BJN), 15, 14, pp. 760-763.
• 1. COLOPLAST ( 2010 ) High Impact Actions for Stoma Care ( WWW)Available from http://www.coloplast.co.uk/OstomyCare/Documents/pdfs/High_Impact_Actions_Booklet.pdf
• (Accessed 10/04/11)
• 1. NOONE, P. 2010. “Pre- and postoperative steps to improve body image following stoma surgery.”Gastrointestinal Nursing 8, no. 2: 34.
• 1. ZAJÄC, O, SPYCHAÅA, A, MURAWA, D, WASIEWICZ, J, FOLTYN, P, & POÅOM, K 2008, ‘Quality of life assessment in patients with a stoma due to rectal cancer’, Reports of Practical Oncology & Radiotherapy, 13, 3, pp. 130-134.
• 1. WADE. B, (1989) A Stoma is for life: A study of stoma care nurses and their patients. Alden press, Oxford.