J Wound Ostomy Continence Nurs. 2014;41(1):55-59 Published by Lippincott Williams & Wilkins
OSTOMY CARE
A View From Here Psychosocial Issues in Colostomy Care Kingsley L. Simmons
P
reserving life or relieving debilitating symptoms is a primary outcome of colostomy surgery, but there is no escaping the social and psychological consequences of this procedure. According to Sprangers and colleagues1 and Vironen and colleagues,2 loneliness, anxiety, depression, suicidal thoughts, and sexual impairment are common. In 2008, more than 1.36 million people in the United States, Japan, and the major countries within the European Community were living with a permanent colostomy, ileostomy, or urostomy.3 This number is projected to rise by 1.2% by 2015.4 According to this projection, and a recent report that shows year-by-year improvements in survival rates for bowel cancer ( http://www.cancerresearchuk.org/ cancer), it is likely that more people will be living longer with a colostomy. As a surgical end-point, social and psychological dysfunction in ostomy patients has long attracted researchers of many disciplines including nursing, health psychology, and social medicine. This has resulted in an expanding volume of health-related quality-of-life research, published not only in journals specializing in stoma care, but also in other journals such as Journal of Psychosomatic Research,5 Disease of the Colon and Rectum,6,7 Support Care Cancer,8 and Annals of Surgical Oncology.9 Publications in those journals are typically intended to extend knowledge, or influence care outcomes, or both. However, while there is little doubt that nurses tend to access the journals that specialize in their discipline and I hypothesize that they are less inclined to read journals not within nursing field. This raises doubts in my mind about the degree to which studies published in nonnursing journals inform colostomy care. Therefore, in this article I review studies conducted in or after 1980 and examine the extent to which they underpin care designed for colostomy patients. For this review, the main databases searched were PsychInfo, CINAHL, and PubMed. Studies were included if they used persons with a colostomy in the sample, and were published in Englishlanguage, peer-review journals. The studies retrieved fall mainly into 3 broad categories: (1) psychological and social reactions, (2) influence of personal attributes, and (3) psychological care.
■ Psychological and Social Reactions As early as 1984, Follick and colleagues10 published results of a survey of 131 persons living with a colorectal or urinary stomas between 1 and 10 years (median time = 4.5 years). Of those surveyed, the most stressful periods were reported to be prior to surgery (28%) and the early postoperative (47%) and postdischarge rehabilitation (21%). They also reported that persons with ostomies experienced more frequent episodes of depression and anger (33% and 24% of respondents, respectively). Bekkers and colleagues11 reported that 12 months after surgery, the level of distress suffered by some colostomy patients exerted a significant influence on their social life. While another study of British and Japanese patients12 showed that improvements in psychosocial adjustment only began to plateau at about 2 years postoperatively. Fucini and coworkers9 surveyed persons living with ostomies, using the European Organization for the Research and Treatment of Cancer QOL-30 and CR38, and support these findings. Based on their study findings, they concluded that healthrelated quality of life among bowel cancer patients would be better if a permanent stoma was avoided. These results, however, are in stark contrast to those of Vironen and her colleagues.2 In a 3-year follow-up investigation, they found no significant difference in health-related qualityof-life scores on the Role Emotional subscale of the RAND36 Health Survey Questionnaire13 between members of the general public, patients who had bowel surgery that did note results in a stoma, and persons with colostomies. I found that most studies that investigated emotional reactions to a colorectal stoma employed cross-sectional designs.2,7,9,11,14,15 In contrast, I found only 2 where Vironen and colleagues2 and Krouse and colleagues7 measured baseline assessments or control groups. Some used predominantly bivariate statistical analyses2,9 that are limited Kingsley L. Simmons, PhD, Visiting Research Fellow, University of Hertfordshire, College Lane, Hatfield, Hertfordshire, United Kingdom. The author declares no conflict of interest. Correspondence: Kingsley L. Simmons, PhD, University of Hertfordshire, College Lane, Hatfield, Hertfordshire, AL10 9AB, UK ([email protected]). DOI: 10.1097/01.WON.0000438015.98357.53
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in unraveling complex relationships between confounding variables, and others assessed emotional reactions with tools of low10 or unproven6,16 reliability. Despite these differences, which in part could explain inconsistencies reported in the literature, I believe that the bulk of evidence favors a degree of emotional impairment sufficient to impede the health-related quality of life for persons with a colostomy. According to Wade,17 these problems could exist for up to 12 months postoperatively in some patients.
Social Reactions Some studies suggest that 30% to 59% of persons with a colorectal ostomy disease curtail 1 or more of their usual activities.2,6-8,10,16 For example, in a sample of 244 male US veterans (N = 511) who had surgery for colon or rectal cancer, Krouse and associates7 found significant differences in social interactions between those with a stoma and those without. Compared to others, those with a stoma were more likely to avoid meeting new people, less likely to engage in recreational activities, and less likely to use public transport. They also reported more problems with sexual and other relationships. A study of Japanese and British persons with colostomies indicated that these social problems persisted up to 2 years after surgery, albeit at different rates.12 Perhaps more worrying is the finding by Bekkers and colleagues.5 Their investigation of Dutch patients suggests that the risk of death among maladjusted colostomy patients is significantly higher than would normally be expected 4 years after discharge from hospital. Sixty-seven percent of persons with a colostomy experience 1 or more of the physical complications associated with stoma surgery,16 including fecal leakage, embarrassing odor, noise, and ballooning of the pouch. In addition, they reported inadequate toilet facilities in most public places.7 While these factors provide a plausible explanation for reluctance to mix socially, they do not by themselves explain the variability in either the magnitude or the duration of the social problems reported by patients with a colostomy.
■ Personal Attributes and Psychosocial Adjustment to Stoma Surgery Empirical evidence on the role of personal attributes in reactions to a colostomy is comparatively sparse. The studies I identified primarily focused on effects of ostomy surgery on cognitive processes11,14,15,18,19 and cultural practices.12 Two studies14,18 examined the role of control beliefs. White and Unwin14 surveyed 69 patients, using the Stoma Cognition Questionnaire,14 to measure stoma- related beliefs, and the Hospital Anxiety and Depression Scale20 to measure psychological distress. Participants were surveyed between 1 and 3 months postoperatively. After controlling
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for other factors, the analysis showed that the level of distress reported by respondents was most strongly associated with the following control beliefs: (a) the stoma rules my life, (b) I am still a complete person despite my stoma, and (c) I feel I am in control of my body following my stoma operation. These results imply a direct link between patients’ appraisal of the impact of the stoma and their psychological response to it. However, I submit that White and Unwin failed to partial out the effects of other factors that could have contributed to their participants’ distress such as adjusting to changes in bowel habits, the loss of regular contact with health care professionals, and demands of managing a new stoma. Therefore, it is unclear how much of the observed distress is explained by control beliefs alone. The second study was a qualitative research report by McVey and her colleagues.18 Although its findings support the work of White and Unwin14 in showing that personal control is central to patients’ concerns, results were based on responses of 4 participants, limiting their external validity. Despite these shortcomings, both authors claim that selected patients could benefit from psychological interventions underpinned by the concept of personal control. My view is that such conclusions should await the outcome of further studies. Bekkers and colleagues11 examined the role of self-efficacy belief, a concept derived from Bandura social learning theory,21 on psychosocial adaptation to a colostomy in a 1-year, prospective, longitudinal investigation of Dutch patients. Independent of the effects of sociodemographic and medical factors, stoma-related self-efficacy beliefs had a strong and positive relationship with adaptation, suggesting that the more patients are convinced of their competence in managing the stoma the better adjusted they will be, whether it is 4 or 12 months after surgery. Wu and colleagues19 administered the 36-Item Short-Form Health Survey 3622 to assess health-related quality of life in a sample of 75 Hong Kong residents with a colostomy, and Simmons15 used the Ostomy Adjustment Scale23 to investigate 51 British patients. Findings from both studies confirmed the significant role stoma-related self-efficacy beliefs play in the process of adjustment. Simmons and his colleagues15 also found acceptance, another cognitive process, to have a significant role. Indeed, we found that acceptance and stoma-related self-efficacy beliefs accounted for 70% of variance in adjustment to a stoma. Given the consistency in these reports, I conclude that stoma-related self-efficacy beliefs should form a central component of the care provided to colostomy patients given the goal of encouraging acceptance and adjustment.
Cultural Influences Reports by Chui and associates24 and Kirkcaldy and coinvestigators25 have added to previous work that confirmed that cultural beliefs and practices aid recovery from
Copyright © 2014 Wound, Ostomy and Continence Nurses Society™. Unauthorized reproduction of this article is prohibited.
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chronic and life-threatening diseases. I found it surprising that given the ongoing effects of colostomy surgery, my literature search revealed only 1 study that examined the impact of cultural norms on life after the operation.12 Our own study enrolled 478 colostomy patients, including 146 from Britain and 322 from Japan; the time since ostomy surgery varied from less than 2 years to more than 10 years. Participants completed the Ostomy Adjustment Inventory–23.26 At any stage after surgery, and after taking into account confounding factors, British participants recorded significantly higher adjustment scores. Differences between the 2 groups widened as time progressed. In particular, British subjects were more accepting of their stoma and less socially isolated. Based on these findings, we concluded that differences in cultural beliefs and practices resulted in these findings. While our findings do not demonstrate a causal relationship between culture and psychosocial response to a colostomy because of its retrospective design and because only 2 cultures were involved, the association should be further investigated. However, our results were consistent with the findings of 2 other studies that investigated cultural effects in other patient populations.24,25 These results strongly suggest that colostomy care should include strategies to minimize social isolation especially in populations where cultural sensitivities to the presence of an ostomy are high.
■ Psychological Care Informational needs among persons with a new ostomy are high. Most patients have a strong desire for information relating to the outcomes of their surgery, associated treatments, and the process of recovery.27 Paraskevaidis and colleagues28 argued that such information is supportive because it alerts patients to the limitations of their illness and the adjustments that may be necessary to cope with them. As in other areas of health care, the specialist nurse is probably the main source of information, and most favored by patients because what they provide is likely to be up-to-date and comprehensive and because it encourages active patients’ participation.29 Therefore, the one-to-one dialogue between the WOC (ostomy) nurse specialist and the patient, which is common practice, is probably the most valuable information-giving session offered to patients with a new ostomy. However, as part of the package of care, patients sometimes receive information from brochures, experienced patients and DVDs.
Brochure Brochures are reported to improve recall and understanding of diseases and treatments,30 improve acceptance,31 facilitate changes in attitudes,32 and encourage patients’ participation in the medical consultation.33 These issues are all relevant when caring for a patient following colostomy surgery. Therefore, I believe that the potential ben-
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efits of the leaflet in colostomy care could not be clearer. Indeed, a search of the Internet revealed a wide range of leaflets available for use by specialist WOC nurses and patients. In general, these leaflets appear to provide sound and detailed information about the surgery, possible physical complications, and diet. However, I have found that references to social, psychological, and sexual impairments are more cursory. Information on what to do when psychosocial problems occur also appears to be cursory. Therefore, while the leaflet may have the potential to correct misconceptions about life with a stoma and, as consequence, improve the psychological well-being of patients, the ones currently available seem not to be designed for that purpose. If so, they are likely to have minimal impact on psychosocial outcomes. This cannot be confirmed however, because although brochures are widely available, I found no studies evaluating their impact on psychosocial outcomes in colostomy care.
The Experienced Patient In an attempt to lessen fears about the impact of a stoma and to encourage acceptance of it, some nurses invite experienced ostomy patients to share their experiences. This approach is consistent with Social Comparison Theory, which suggests that people compare themselves to others in order to validate their beliefs and abilities.34 However, while the need for such comparison is reported to be strong in patients with high uncertainty about their disease,35 anecdotal evidence from WOC and other ostomy specialists suggests that the use of experienced stoma patients in the practice setting is not always welcomed. This is not surprising because for some patients, personal contact with others in similar circumstances is perceived as threatening.36 Therefore, the use of experienced patients as a strategy in stoma care would appear at best, to be haphazard. The benefits are also unclear, because like the brochure there is too little evidence to determine the impact of interactions with more experienced patients effects on colostomy care outcomes.
Video Formats Video formats such as the DVD or streaming video file could be an alternative format to provide information on how well others appear to be coping with their stoma. Because it avoids the threat posed by personal contact, I predict that many patients with ostomies are likely to welcome information provided in a video format. McGuire and colleagues37 have shown that it could be effective if designed for a clear and specific purpose. They developed a DVD that provided information on, among other topics, incorrect beliefs that patients might entertain about their dentures, along with actions the individual could take to make dentures more tolerable. Study findings showed significant improvements in all measures of psychopathology in those who viewed the DVD when compared to
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those who had usual dental care. These findings suggest that video formats have the potential to counter negative perceptions of debilitating body changes such as those associated with a new ostomy.
Decision Making and Ostomy Management There are several strategies available to help colostomy patients manage their stoma. In the United Kingdom, for example, persons with an ostomy can choose an irrigation technique, the stoma plug (Coloplast, UK), the Vitala Continence Control Device (ConvaTec, UK), or a traditional pouching system. However, to make an informed choice, persons with an ostomy often rely on information from the WOC or ostomy specialist nurse. But even with support the choice patients eventually make could be influenced by factors beyond the nurse's control. For example, health care policies that dictate care delivery systems vary from country to country. In some countries, cost is more of an issue than others, and some patients may have access to a wider range of appliances than others. Therefore for some, choice of pouching products and supplies is limited, which may negatively impact health-related quality of life. Despite these barriers, I am of the opinion that all patients should be kept fully abreast of new ostomy products when they come onto the market. They should also be encouraged to undergo periodic review of their pouching system, especially if there are changes in body weight or shape, or if there are problems with managing a current appliance.
Postoperative Management Although controversy exists concerning the extent and duration of postoperative discharge, there is convincing evidence of the varied and long-term impact of the ostomy.9,12,15,17 According to White and Unwin,14 some patients are so badly affected that they may require specialist psychological interventions. I suspect few patients require such intense treatment; however, variable responses suggest that all ostomy patients should be monitored for a period of time after they are discharged from hospital. That period would vary for each individual, but since maladjustment was found in some patients 12 months following surgery,11 I argue that patients should be routinely monitored for at least 1 year after stoma surgery. I also agree with Bekkers and colleagues11 that psychosocial guidance may be necessary in some cases. Therefore, WOC and other ostomy nurse specialists should be prepared and suitably equipped to identify and, at the very least, provide a certain level of psychological support to patients not needing the level of intervention suggested by White and Unwin.14
■ Summary Most clinicians and researchers agree that a primary aim of ostomy care is to minimize social and psychological
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dysfunction following its creation. As indicated in this “View From Here” column, the psychosocial problems experienced by patients following ostomy surgery vary in both severity and duration. While a very few may require intense, specialist psychological intervention, the majority receive adequate support from a WOC or ostomy nurse specialist. This support includes education and advice via direct interaction with an ostomy nurse specialist, along with informational resources via brochures, visits from a peer living with an ostomy, or in a video format. Care should be delivered in a culturally sensitive manner, and considerations related to products and supplies should incorporate patient preference and economic factors. The period of support from a WOC or ostomy specialist nurse should extend over at least a 1-year period following surgery.
■ References 1. Sprangers M, Taal B, Aaronson N, Te Velde A. Quality of life in colorectal cancer: stoma vs non-stoma patients. Disease Colon Rectum. 1995;38:361-369. 2. Vironen H, Kairaluoma M, Aalo A-M, Kellokumpu IH. Impact of functional results on quality of life after rectal cancer surgery. Disease Colon Rectum. 2006;49(5):568-578. 3. Ferlay J, Parkin DM, Steliarova-Foucher E. Estimates of cancer incidence and mortality in Europe in 2008. Eur J Cancer. 2010;46:765-781. 4. Ferlay J, Shin HR, Bray F, Forman D, Mathers C, Parkin DM. GLOBOCAN 2008 v2.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 10 [Internet]. Lyon, France: International Agency for Research on Cancer; 2010. Available from: http://globocan.iarc.fr, accessed on day/month/year. 5. Bekkers M, van Knippenberg F, van Dulmen A, van den Borne H, van Berge Henegouwen G. Survival and psychosocial adjustment to stoma surgery and nonstoma bowel resection: A 4-year follow-up. J Psychosom Res. 1997;42(3):235-244. 6. Nugent KP, Daniels PM, Stewart B, Patankar R, Johnson DC, Chir M. Quality of life in stoma patients. Dis Colon Rectum. 1999;42(12):1569-1574. 7. Krouse R, Grant M, Wendel C. A mixed-methods evaluation of health-related quality of life for male veterans with and without intestinal stomas. Dis Colon Rectum. 2007;50:2054-2066. 8. Ross L, Abild-Nielsen A, Thomsen B, Karlsen R, Boesen E, Johansen C. Quality of life of Danish colorectal cancer patients with and without a stoma. Support Care Cancer. 2007;15:505513. 9. Fucini C, Gattai R, Urena C, Bandettini L, Elbetti C. Quality of life among five-year survivors after treatment for very low rectal cancer with or without a permanent abdominal stoma. Ann Surg Oncol. 2008;15(4):1099-1106. 10. Follick MF, Smith TW, Turk DC. Psychosocial adjustment following ostomy. Health Psychol. 1984;3(6):505-517. 11. Bekkers MJTM, Van Knippenberg FC, Van den Borne HW, Van Berge-Henegouwen GP. Prospective evaluation of psychosocial adaptation to stoma surgery: the role of self-efficacy. Psychosom Med. 1996;58:183-191. 12. Simmons LK, Maekawa A, Smith AJ. Culture and psychosocial function in British and Japanese people with a stoma. J Wound Ostomy Continence Nurs. 2011;38(4):421-427. 13. Hays R, Sherbourne C, Mazel R. The Rand-36 Health Survey. Health Econ. 1993;2:217-227.
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14. White CA, Unwin JC. Post-operative adjustment to surgery resulting in the formation of a stoma: the importance of stoma-related cognitions. Br J Health Psychol. 1998;3:85-93. 15. Simmons K, Smith J, Bobb K, Liles L. Adjustment to colostomy: stoma acceptance, stoma care self-efficacy and inter-personal relationships. J Adv Nurs. 2007;60(6):627-635. 16. Richbourg L, Thorpe J, Rapp C. Difficulties experienced by the ostomate after hospital discharge. J Wound Ostomy Continence Nurs. 2007;34(1):70-79. 17. Wade B. Colostomy patients: psychological adjustment at 10 weeks and 1 year after surgery in districts which employed stoma-care nurses and districts which did not. J Adv Nurs. 1990;15:1297-1304. 18. McVey J, Madill A, Fielding D. The relevance of lowered personal control for patients who have stoma surgery to treat cancer. Br J Clin Psychol. 2001;40:337-360. 19. Wu HK-M, Chau JP-C, Twinn S. Self-efficacy and quality of life among stoma patients in Hong Kong. Cancer Nurs. 2007;30(3):186-193. 20. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. ACTA Psychiatr Scand. 1983;67:361-370. 21. Bandura A. Self-efficacy: towards a unifying theory of behavioural change. Psychol Rev. 1977;84:191-215. 22. Ware J, Snow K, Kosinski M. SF-36 Health Survey. In: Manual and Interpretation Guideline. Boston, MA: The Health Institute; 1993. 23. Olbrisch ME: Development and validation of the Ostomy Adjustment Scale. Rehabil Psychol. 1983;28(1):3-12. 24. Chui Y-Y, Donoghue J, Chenoweth L. Responses to advanced cancer: Chinese-Australians. J Adv Nurs. 2005;52(5):498507. 25. Kirkcaldy BD, Siefen RG, Merbach M, Rutow N, Brahler E, Wittig U. A comparison of general and illness-related locus of control in Russians, ethnic German migrants and German. Psychol Health Med. 2007;12(3):364-379.
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26. Simmons K, Smith J, Maekawa A. Development and psychometric evaluation of the Ostomy Adjustment Inventory–23. J Wound Ostomy Continence Nurs. 2009;36(1):69-76. 27. Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: a results from a large study in UK cancer centres. Br J Cancer. 2001;84(1):48-51. 28. Paraskevaidis E, Kitchener HC, Walker LG. Doctor-patient communication and subsequent mental health in women with gynaecogical cancer. Psycho-Oncol. 1993;2:195-200. 29. Mills ME, Davidson R. Cancer patients sources of information: uses and quality issues. Psycho-Oncol. 2002;11:371-378. 30. Ley P. Communicating with patients: improving communication, satisfaction and compliance. In: Marcer D, ed. Psychology and Medicine Series. London: Croom Helm; 1988:78-92. 31. Dodds IJ. Effects on information leaflets on compliance with antibiotic therapy. Pharm J. 1986;236:48-52. 32. Petty RE, Cacioppo JT. The elaboration likelihood model of persuasion. In:Berkowitz L, ed. Advances in Experimental Social Psychology, Vol. 19. New York: Academic Press Inc; 1986:124-205. 33. Brown R, Butow P, Dunn S, Tattersall M. Promoting patient participation and shortening cancer consultations: a randomised trial. Br J Cancer. 2001;85(9):1273-1279. 34. Festinger L. A theory of social comparison processes. Hum Relat. 1954;7:117-140. 35. Bennenbroek F, Buunk B, et al. Social comparison and patient information: what do cancer patients want. Patient Educ Couns. 2002;47:5-12. 36. Bakker AB, Buunk BP, Siero FW, Van Den Eijnden RJJM. Application of a modified health belief model to HIV preventive behavioral intentions among gay and bisexual men. Psychol Health. 1997;12(4):481-492. 37. McGuire L, Millar K, Lindsay S. A treatment trial of an information package to help patients accept new dentures. Behav Res Ther. 2007;45(8):1941-1948.
Call for Authors: Ostomy Care • Original research reports comparing surgical outcomes for patients who undergo preoperative stoma site marking by a WOC nurse compared to patients who do not. • Case studies, case series, or original research reports focusing on stomal or peristomal complications. • Case studies, case series, or original research reports focusing on other potential sequelae of ostomy surgery including physical manifestations such as low back pain or psychosocial manifestations such as depression, altered sexual function, or embarrassment. • Original research reports confirming or challenging the assertions of the ongoing WOCN Ostomy Consensus Session including ostomy pouch wear time and minimum standards for immediate postoperative education of patient and family.
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OSTOMY CARE
A View From Here Psychosocial Issues in Colostomy Care Kingsley L. Simmons
P
reserving life or relieving debilitating symptoms is a primary outcome of colostomy surgery, but there is no escaping the social and psychological consequences of this procedure. According to Sprangers and colleagues1 and Vironen and colleagues,2 loneliness, anxiety, depression, suicidal thoughts, and sexual impairment are common. In 2008, more than 1.36 million people in the United States, Japan, and the major countries within the European Community were living with a permanent colostomy, ileostomy, or urostomy.3 This number is projected to rise by 1.2% by 2015.4 According to this projection, and a recent report that shows year-by-year improvements in survival rates for bowel cancer ( http://www.cancerresearchuk.org/ cancer), it is likely that more people will be living longer with a colostomy. As a surgical end-point, social and psychological dysfunction in ostomy patients has long attracted researchers of many disciplines including nursing, health psychology, and social medicine. This has resulted in an expanding volume of health-related quality-of-life research, published not only in journals specializing in stoma care, but also in other journals such as Journal of Psychosomatic Research,5 Disease of the Colon and Rectum,6,7 Support Care Cancer,8 and Annals of Surgical Oncology.9 Publications in those journals are typically intended to extend knowledge, or influence care outcomes, or both. However, while there is little doubt that nurses tend to access the journals that specialize in their discipline and I hypothesize that they are less inclined to read journals not within nursing field. This raises doubts in my mind about the degree to which studies published in nonnursing journals inform colostomy care. Therefore, in this article I review studies conducted in or after 1980 and examine the extent to which they underpin care designed for colostomy patients. For this review, the main databases searched were PsychInfo, CINAHL, and PubMed. Studies were included if they used persons with a colostomy in the sample, and were published in Englishlanguage, peer-review journals. The studies retrieved fall mainly into 3 broad categories: (1) psychological and social reactions, (2) influence of personal attributes, and (3) psychological care.
■ Psychological and Social Reactions As early as 1984, Follick and colleagues10 published results of a survey of 131 persons living with a colorectal or urinary stomas between 1 and 10 years (median time = 4.5 years). Of those surveyed, the most stressful periods were reported to be prior to surgery (28%) and the early postoperative (47%) and postdischarge rehabilitation (21%). They also reported that persons with ostomies experienced more frequent episodes of depression and anger (33% and 24% of respondents, respectively). Bekkers and colleagues11 reported that 12 months after surgery, the level of distress suffered by some colostomy patients exerted a significant influence on their social life. While another study of British and Japanese patients12 showed that improvements in psychosocial adjustment only began to plateau at about 2 years postoperatively. Fucini and coworkers9 surveyed persons living with ostomies, using the European Organization for the Research and Treatment of Cancer QOL-30 and CR38, and support these findings. Based on their study findings, they concluded that healthrelated quality of life among bowel cancer patients would be better if a permanent stoma was avoided. These results, however, are in stark contrast to those of Vironen and her colleagues.2 In a 3-year follow-up investigation, they found no significant difference in health-related qualityof-life scores on the Role Emotional subscale of the RAND36 Health Survey Questionnaire13 between members of the general public, patients who had bowel surgery that did note results in a stoma, and persons with colostomies. I found that most studies that investigated emotional reactions to a colorectal stoma employed cross-sectional designs.2,7,9,11,14,15 In contrast, I found only 2 where Vironen and colleagues2 and Krouse and colleagues7 measured baseline assessments or control groups. Some used predominantly bivariate statistical analyses2,9 that are limited Kingsley L. Simmons, PhD, Visiting Research Fellow, University of Hertfordshire, College Lane, Hatfield, Hertfordshire, United Kingdom. The author declares no conflict of interest. Correspondence: Kingsley L. Simmons, PhD, University of Hertfordshire, College Lane, Hatfield, Hertfordshire, AL10 9AB, UK ([email protected]). DOI: 10.1097/01.WON.0000438015.98357.53
Copyright © 2014 by the Wound, Ostomy and Continence Nurses Society™
J WOCN
■ January/February 2014 55
Copyright © 2014 Wound, Ostomy and Continence Nurses Society™. Unauthorized reproduction of this article is prohibited.
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in unraveling complex relationships between confounding variables, and others assessed emotional reactions with tools of low10 or unproven6,16 reliability. Despite these differences, which in part could explain inconsistencies reported in the literature, I believe that the bulk of evidence favors a degree of emotional impairment sufficient to impede the health-related quality of life for persons with a colostomy. According to Wade,17 these problems could exist for up to 12 months postoperatively in some patients.
Social Reactions Some studies suggest that 30% to 59% of persons with a colorectal ostomy disease curtail 1 or more of their usual activities.2,6-8,10,16 For example, in a sample of 244 male US veterans (N = 511) who had surgery for colon or rectal cancer, Krouse and associates7 found significant differences in social interactions between those with a stoma and those without. Compared to others, those with a stoma were more likely to avoid meeting new people, less likely to engage in recreational activities, and less likely to use public transport. They also reported more problems with sexual and other relationships. A study of Japanese and British persons with colostomies indicated that these social problems persisted up to 2 years after surgery, albeit at different rates.12 Perhaps more worrying is the finding by Bekkers and colleagues.5 Their investigation of Dutch patients suggests that the risk of death among maladjusted colostomy patients is significantly higher than would normally be expected 4 years after discharge from hospital. Sixty-seven percent of persons with a colostomy experience 1 or more of the physical complications associated with stoma surgery,16 including fecal leakage, embarrassing odor, noise, and ballooning of the pouch. In addition, they reported inadequate toilet facilities in most public places.7 While these factors provide a plausible explanation for reluctance to mix socially, they do not by themselves explain the variability in either the magnitude or the duration of the social problems reported by patients with a colostomy.
■ Personal Attributes and Psychosocial Adjustment to Stoma Surgery Empirical evidence on the role of personal attributes in reactions to a colostomy is comparatively sparse. The studies I identified primarily focused on effects of ostomy surgery on cognitive processes11,14,15,18,19 and cultural practices.12 Two studies14,18 examined the role of control beliefs. White and Unwin14 surveyed 69 patients, using the Stoma Cognition Questionnaire,14 to measure stoma- related beliefs, and the Hospital Anxiety and Depression Scale20 to measure psychological distress. Participants were surveyed between 1 and 3 months postoperatively. After controlling
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for other factors, the analysis showed that the level of distress reported by respondents was most strongly associated with the following control beliefs: (a) the stoma rules my life, (b) I am still a complete person despite my stoma, and (c) I feel I am in control of my body following my stoma operation. These results imply a direct link between patients’ appraisal of the impact of the stoma and their psychological response to it. However, I submit that White and Unwin failed to partial out the effects of other factors that could have contributed to their participants’ distress such as adjusting to changes in bowel habits, the loss of regular contact with health care professionals, and demands of managing a new stoma. Therefore, it is unclear how much of the observed distress is explained by control beliefs alone. The second study was a qualitative research report by McVey and her colleagues.18 Although its findings support the work of White and Unwin14 in showing that personal control is central to patients’ concerns, results were based on responses of 4 participants, limiting their external validity. Despite these shortcomings, both authors claim that selected patients could benefit from psychological interventions underpinned by the concept of personal control. My view is that such conclusions should await the outcome of further studies. Bekkers and colleagues11 examined the role of self-efficacy belief, a concept derived from Bandura social learning theory,21 on psychosocial adaptation to a colostomy in a 1-year, prospective, longitudinal investigation of Dutch patients. Independent of the effects of sociodemographic and medical factors, stoma-related self-efficacy beliefs had a strong and positive relationship with adaptation, suggesting that the more patients are convinced of their competence in managing the stoma the better adjusted they will be, whether it is 4 or 12 months after surgery. Wu and colleagues19 administered the 36-Item Short-Form Health Survey 3622 to assess health-related quality of life in a sample of 75 Hong Kong residents with a colostomy, and Simmons15 used the Ostomy Adjustment Scale23 to investigate 51 British patients. Findings from both studies confirmed the significant role stoma-related self-efficacy beliefs play in the process of adjustment. Simmons and his colleagues15 also found acceptance, another cognitive process, to have a significant role. Indeed, we found that acceptance and stoma-related self-efficacy beliefs accounted for 70% of variance in adjustment to a stoma. Given the consistency in these reports, I conclude that stoma-related self-efficacy beliefs should form a central component of the care provided to colostomy patients given the goal of encouraging acceptance and adjustment.
Cultural Influences Reports by Chui and associates24 and Kirkcaldy and coinvestigators25 have added to previous work that confirmed that cultural beliefs and practices aid recovery from
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chronic and life-threatening diseases. I found it surprising that given the ongoing effects of colostomy surgery, my literature search revealed only 1 study that examined the impact of cultural norms on life after the operation.12 Our own study enrolled 478 colostomy patients, including 146 from Britain and 322 from Japan; the time since ostomy surgery varied from less than 2 years to more than 10 years. Participants completed the Ostomy Adjustment Inventory–23.26 At any stage after surgery, and after taking into account confounding factors, British participants recorded significantly higher adjustment scores. Differences between the 2 groups widened as time progressed. In particular, British subjects were more accepting of their stoma and less socially isolated. Based on these findings, we concluded that differences in cultural beliefs and practices resulted in these findings. While our findings do not demonstrate a causal relationship between culture and psychosocial response to a colostomy because of its retrospective design and because only 2 cultures were involved, the association should be further investigated. However, our results were consistent with the findings of 2 other studies that investigated cultural effects in other patient populations.24,25 These results strongly suggest that colostomy care should include strategies to minimize social isolation especially in populations where cultural sensitivities to the presence of an ostomy are high.
■ Psychological Care Informational needs among persons with a new ostomy are high. Most patients have a strong desire for information relating to the outcomes of their surgery, associated treatments, and the process of recovery.27 Paraskevaidis and colleagues28 argued that such information is supportive because it alerts patients to the limitations of their illness and the adjustments that may be necessary to cope with them. As in other areas of health care, the specialist nurse is probably the main source of information, and most favored by patients because what they provide is likely to be up-to-date and comprehensive and because it encourages active patients’ participation.29 Therefore, the one-to-one dialogue between the WOC (ostomy) nurse specialist and the patient, which is common practice, is probably the most valuable information-giving session offered to patients with a new ostomy. However, as part of the package of care, patients sometimes receive information from brochures, experienced patients and DVDs.
Brochure Brochures are reported to improve recall and understanding of diseases and treatments,30 improve acceptance,31 facilitate changes in attitudes,32 and encourage patients’ participation in the medical consultation.33 These issues are all relevant when caring for a patient following colostomy surgery. Therefore, I believe that the potential ben-
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efits of the leaflet in colostomy care could not be clearer. Indeed, a search of the Internet revealed a wide range of leaflets available for use by specialist WOC nurses and patients. In general, these leaflets appear to provide sound and detailed information about the surgery, possible physical complications, and diet. However, I have found that references to social, psychological, and sexual impairments are more cursory. Information on what to do when psychosocial problems occur also appears to be cursory. Therefore, while the leaflet may have the potential to correct misconceptions about life with a stoma and, as consequence, improve the psychological well-being of patients, the ones currently available seem not to be designed for that purpose. If so, they are likely to have minimal impact on psychosocial outcomes. This cannot be confirmed however, because although brochures are widely available, I found no studies evaluating their impact on psychosocial outcomes in colostomy care.
The Experienced Patient In an attempt to lessen fears about the impact of a stoma and to encourage acceptance of it, some nurses invite experienced ostomy patients to share their experiences. This approach is consistent with Social Comparison Theory, which suggests that people compare themselves to others in order to validate their beliefs and abilities.34 However, while the need for such comparison is reported to be strong in patients with high uncertainty about their disease,35 anecdotal evidence from WOC and other ostomy specialists suggests that the use of experienced stoma patients in the practice setting is not always welcomed. This is not surprising because for some patients, personal contact with others in similar circumstances is perceived as threatening.36 Therefore, the use of experienced patients as a strategy in stoma care would appear at best, to be haphazard. The benefits are also unclear, because like the brochure there is too little evidence to determine the impact of interactions with more experienced patients effects on colostomy care outcomes.
Video Formats Video formats such as the DVD or streaming video file could be an alternative format to provide information on how well others appear to be coping with their stoma. Because it avoids the threat posed by personal contact, I predict that many patients with ostomies are likely to welcome information provided in a video format. McGuire and colleagues37 have shown that it could be effective if designed for a clear and specific purpose. They developed a DVD that provided information on, among other topics, incorrect beliefs that patients might entertain about their dentures, along with actions the individual could take to make dentures more tolerable. Study findings showed significant improvements in all measures of psychopathology in those who viewed the DVD when compared to
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those who had usual dental care. These findings suggest that video formats have the potential to counter negative perceptions of debilitating body changes such as those associated with a new ostomy.
Decision Making and Ostomy Management There are several strategies available to help colostomy patients manage their stoma. In the United Kingdom, for example, persons with an ostomy can choose an irrigation technique, the stoma plug (Coloplast, UK), the Vitala Continence Control Device (ConvaTec, UK), or a traditional pouching system. However, to make an informed choice, persons with an ostomy often rely on information from the WOC or ostomy specialist nurse. But even with support the choice patients eventually make could be influenced by factors beyond the nurse's control. For example, health care policies that dictate care delivery systems vary from country to country. In some countries, cost is more of an issue than others, and some patients may have access to a wider range of appliances than others. Therefore for some, choice of pouching products and supplies is limited, which may negatively impact health-related quality of life. Despite these barriers, I am of the opinion that all patients should be kept fully abreast of new ostomy products when they come onto the market. They should also be encouraged to undergo periodic review of their pouching system, especially if there are changes in body weight or shape, or if there are problems with managing a current appliance.
Postoperative Management Although controversy exists concerning the extent and duration of postoperative discharge, there is convincing evidence of the varied and long-term impact of the ostomy.9,12,15,17 According to White and Unwin,14 some patients are so badly affected that they may require specialist psychological interventions. I suspect few patients require such intense treatment; however, variable responses suggest that all ostomy patients should be monitored for a period of time after they are discharged from hospital. That period would vary for each individual, but since maladjustment was found in some patients 12 months following surgery,11 I argue that patients should be routinely monitored for at least 1 year after stoma surgery. I also agree with Bekkers and colleagues11 that psychosocial guidance may be necessary in some cases. Therefore, WOC and other ostomy nurse specialists should be prepared and suitably equipped to identify and, at the very least, provide a certain level of psychological support to patients not needing the level of intervention suggested by White and Unwin.14
■ Summary Most clinicians and researchers agree that a primary aim of ostomy care is to minimize social and psychological
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dysfunction following its creation. As indicated in this “View From Here” column, the psychosocial problems experienced by patients following ostomy surgery vary in both severity and duration. While a very few may require intense, specialist psychological intervention, the majority receive adequate support from a WOC or ostomy nurse specialist. This support includes education and advice via direct interaction with an ostomy nurse specialist, along with informational resources via brochures, visits from a peer living with an ostomy, or in a video format. Care should be delivered in a culturally sensitive manner, and considerations related to products and supplies should incorporate patient preference and economic factors. The period of support from a WOC or ostomy specialist nurse should extend over at least a 1-year period following surgery.
■ References 1. Sprangers M, Taal B, Aaronson N, Te Velde A. Quality of life in colorectal cancer: stoma vs non-stoma patients. Disease Colon Rectum. 1995;38:361-369. 2. Vironen H, Kairaluoma M, Aalo A-M, Kellokumpu IH. Impact of functional results on quality of life after rectal cancer surgery. Disease Colon Rectum. 2006;49(5):568-578. 3. Ferlay J, Parkin DM, Steliarova-Foucher E. Estimates of cancer incidence and mortality in Europe in 2008. Eur J Cancer. 2010;46:765-781. 4. Ferlay J, Shin HR, Bray F, Forman D, Mathers C, Parkin DM. GLOBOCAN 2008 v2.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 10 [Internet]. Lyon, France: International Agency for Research on Cancer; 2010. Available from: http://globocan.iarc.fr, accessed on day/month/year. 5. Bekkers M, van Knippenberg F, van Dulmen A, van den Borne H, van Berge Henegouwen G. Survival and psychosocial adjustment to stoma surgery and nonstoma bowel resection: A 4-year follow-up. J Psychosom Res. 1997;42(3):235-244. 6. Nugent KP, Daniels PM, Stewart B, Patankar R, Johnson DC, Chir M. Quality of life in stoma patients. Dis Colon Rectum. 1999;42(12):1569-1574. 7. Krouse R, Grant M, Wendel C. A mixed-methods evaluation of health-related quality of life for male veterans with and without intestinal stomas. Dis Colon Rectum. 2007;50:2054-2066. 8. Ross L, Abild-Nielsen A, Thomsen B, Karlsen R, Boesen E, Johansen C. Quality of life of Danish colorectal cancer patients with and without a stoma. Support Care Cancer. 2007;15:505513. 9. Fucini C, Gattai R, Urena C, Bandettini L, Elbetti C. Quality of life among five-year survivors after treatment for very low rectal cancer with or without a permanent abdominal stoma. Ann Surg Oncol. 2008;15(4):1099-1106. 10. Follick MF, Smith TW, Turk DC. Psychosocial adjustment following ostomy. Health Psychol. 1984;3(6):505-517. 11. Bekkers MJTM, Van Knippenberg FC, Van den Borne HW, Van Berge-Henegouwen GP. Prospective evaluation of psychosocial adaptation to stoma surgery: the role of self-efficacy. Psychosom Med. 1996;58:183-191. 12. Simmons LK, Maekawa A, Smith AJ. Culture and psychosocial function in British and Japanese people with a stoma. J Wound Ostomy Continence Nurs. 2011;38(4):421-427. 13. Hays R, Sherbourne C, Mazel R. The Rand-36 Health Survey. Health Econ. 1993;2:217-227.
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14. White CA, Unwin JC. Post-operative adjustment to surgery resulting in the formation of a stoma: the importance of stoma-related cognitions. Br J Health Psychol. 1998;3:85-93. 15. Simmons K, Smith J, Bobb K, Liles L. Adjustment to colostomy: stoma acceptance, stoma care self-efficacy and inter-personal relationships. J Adv Nurs. 2007;60(6):627-635. 16. Richbourg L, Thorpe J, Rapp C. Difficulties experienced by the ostomate after hospital discharge. J Wound Ostomy Continence Nurs. 2007;34(1):70-79. 17. Wade B. Colostomy patients: psychological adjustment at 10 weeks and 1 year after surgery in districts which employed stoma-care nurses and districts which did not. J Adv Nurs. 1990;15:1297-1304. 18. McVey J, Madill A, Fielding D. The relevance of lowered personal control for patients who have stoma surgery to treat cancer. Br J Clin Psychol. 2001;40:337-360. 19. Wu HK-M, Chau JP-C, Twinn S. Self-efficacy and quality of life among stoma patients in Hong Kong. Cancer Nurs. 2007;30(3):186-193. 20. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. ACTA Psychiatr Scand. 1983;67:361-370. 21. Bandura A. Self-efficacy: towards a unifying theory of behavioural change. Psychol Rev. 1977;84:191-215. 22. Ware J, Snow K, Kosinski M. SF-36 Health Survey. In: Manual and Interpretation Guideline. Boston, MA: The Health Institute; 1993. 23. Olbrisch ME: Development and validation of the Ostomy Adjustment Scale. Rehabil Psychol. 1983;28(1):3-12. 24. Chui Y-Y, Donoghue J, Chenoweth L. Responses to advanced cancer: Chinese-Australians. J Adv Nurs. 2005;52(5):498507. 25. Kirkcaldy BD, Siefen RG, Merbach M, Rutow N, Brahler E, Wittig U. A comparison of general and illness-related locus of control in Russians, ethnic German migrants and German. Psychol Health Med. 2007;12(3):364-379.
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26. Simmons K, Smith J, Maekawa A. Development and psychometric evaluation of the Ostomy Adjustment Inventory–23. J Wound Ostomy Continence Nurs. 2009;36(1):69-76. 27. Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: a results from a large study in UK cancer centres. Br J Cancer. 2001;84(1):48-51. 28. Paraskevaidis E, Kitchener HC, Walker LG. Doctor-patient communication and subsequent mental health in women with gynaecogical cancer. Psycho-Oncol. 1993;2:195-200. 29. Mills ME, Davidson R. Cancer patients sources of information: uses and quality issues. Psycho-Oncol. 2002;11:371-378. 30. Ley P. Communicating with patients: improving communication, satisfaction and compliance. In: Marcer D, ed. Psychology and Medicine Series. London: Croom Helm; 1988:78-92. 31. Dodds IJ. Effects on information leaflets on compliance with antibiotic therapy. Pharm J. 1986;236:48-52. 32. Petty RE, Cacioppo JT. The elaboration likelihood model of persuasion. In:Berkowitz L, ed. Advances in Experimental Social Psychology, Vol. 19. New York: Academic Press Inc; 1986:124-205. 33. Brown R, Butow P, Dunn S, Tattersall M. Promoting patient participation and shortening cancer consultations: a randomised trial. Br J Cancer. 2001;85(9):1273-1279. 34. Festinger L. A theory of social comparison processes. Hum Relat. 1954;7:117-140. 35. Bennenbroek F, Buunk B, et al. Social comparison and patient information: what do cancer patients want. Patient Educ Couns. 2002;47:5-12. 36. Bakker AB, Buunk BP, Siero FW, Van Den Eijnden RJJM. Application of a modified health belief model to HIV preventive behavioral intentions among gay and bisexual men. Psychol Health. 1997;12(4):481-492. 37. McGuire L, Millar K, Lindsay S. A treatment trial of an information package to help patients accept new dentures. Behav Res Ther. 2007;45(8):1941-1948.
Call for Authors: Ostomy Care • Original research reports comparing surgical outcomes for patients who undergo preoperative stoma site marking by a WOC nurse compared to patients who do not. • Case studies, case series, or original research reports focusing on stomal or peristomal complications. • Case studies, case series, or original research reports focusing on other potential sequelae of ostomy surgery including physical manifestations such as low back pain or psychosocial manifestations such as depression, altered sexual function, or embarrassment. • Original research reports confirming or challenging the assertions of the ongoing WOCN Ostomy Consensus Session including ostomy pouch wear time and minimum standards for immediate postoperative education of patient and family.
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